WELCOME

Notice to the Reader:

All material in this book is provided for information purposes only. Although Batten Disease Support and Research Association (BDSRA) has made every reasonable effort to assure the accuracy of the information contained in this book, BDSRA is not engaged in rendering medical or other professional services and advice. BDSRA does not guarantee or warrant that the information in the book is complete, correct, current, or applicable to every situation. BDSRA disclaims all warranties, express or implied, concerning this book and the information contained herein. If medical or other expert assistance is required, the services of a competent professional should be obtained.

Nancy Carney, RN Batten Disease Support and Research 2007

Death and Dying: A Helpful Guide In Dealing With the Many “End of Life” Issues

Chapter 1 Crisis of Discovery: My Child Has A Terminal Illness Page 2 Chapter 2 To Tell or Not To Tell Page 7 Chapter 3 My Child and Family: Facing a Terminal Illness Page 12 Chapter 4 When Terminally Ill Children Are Hospitalize Page 37 Chapter 5 What Kind of Care Is Available for my Child? Page 49 Chapter 6 The Dying Child Page 86 Chapter 7 The Death Process Page 134 Chapter 8 Funerals Page 177 Chapter 9 Death and the Well Child: The Psychological Aspects Page 185 Chapter 10 Friends Page 233 Chapter 11 Coping With Death: Teacher and Child Page 237 Chapter 12 Parents: Coping With Grief Page 243

1 Chapter 1

Crisis of Discovery: My Child has a Terminal Illness

End of Life issues is a very difficult area to discuss, but one that is very important in all of our lives at one time or another. Many feelings and emotions come to mind when the words are even a thought. We will start by stating a few general statements concerning our early lives as young individuals and later as adults.

In thinking about choosing to be a parent – why do men and women want to have children? Some of the reasons may be:  They may want to emulate their own parents – to parent a child as they were parented and to re-experience their happy childhood years.  New parents may desire to compete with their own parents, to care for a child as they wish they had been parented. They may want to give their child what they never had, whether in affection, opportunities, or material goods – and vicariously to experience a childhood they never had themselves.  Men and women may want to prove their sexual adequacy by producing a child. Or they may feel destined or pressured by their ethnic or religious beliefs to bring forth a child to perpetuate the race or the family name.  They may be trying to give meaning to lives that seem empty and without purpose. Some people have children -because they are seeking a form of immortality. We all share a wish to survive our own deaths by leaving an imprint on the world, often in the form of our own children.  Men and women may simply wish to nurture, to shape and guide and cherish another life – their child’s.  Sometimes, pregnancy is not planned yet you may have a natural instinct to parenting.

Expectations from parents Parents and their offspring interact in such a way that gradually parent’s dreams and expectations are modified by recognition of their child’s actual capabilities. As the fantasy of the dream child is replaced with day to day living, parents will hopefully accept the child for what he/she is and wants to be. When a child’s health is impaired, parents can be confronted harshly and abruptly with a reality that allows little or no hope for fulfillment of their dreams. The fantasized child is lost and a process of grieving begins. Of course, most parents do feel genuine sorrow for

2 the child whose health is impaired. But, parallel to that, parents grieve for themselves in their state of loss. As our babies grow, seemingly normal in the world of Batten Disease, any time after six months symptoms of the disease may begin appearing for the Infantile form. Diagnosis is very difficult due to the misdiagnosis in many children.

Parents are usually very aware that “something “is not normal with their child, but after many doctor appointments and many specialists, still come up with no definite diagnosis. It may take years to finally get an accurate diagnosis for a child with Batten Disease. Parents, by this time, fear the worst case scenario. A multitude of different events have entered their minds and they just want answers.

For parents, the crisis of discovery begins when they are told the diagnosis of the fatal illness. No single event, with the exception of the child’s death itself, has a greater impact on the life of a family. Many parents state that they had suspected that their child had a fatal disease before actually being told the diagnosis by the physician. Typically, parents respond by being stunned, shocked, or disbelieving when hearing a definitive diagnosis. Most parents initially feel guilt and self-blame for not having paid more attention to the early nonspecific manifestations of the disease. Many wonder if the child would have had a better chance of responding to therapy if the diagnosis had been made earlier. This self-blame is characteristically a transient phenomenon. More often, parents blame themselves for not having been more appreciative of the child before his or her illness. This attitude frequently leads to overindulgence and overprotection of the fatally ill child, with no limits put on the child’s behavior. The shock can be interpreted as an extreme degree of isolation of affect, a mechanism by which the apparent intellectual recognition of a painful event is not associated with an accompanying intolerable emotional response. This lack of affective experience continued to be a conspicuous defense and enabled parents to talk realistically about their child’s condition and prognosis with relatively little evidence of emotional involvement.

When your Physician tells you the diagnosis, parents hear the words, but what they translate is “my child will never be normal”. The reality is that their lives change forever at that moment in time. Their lives will never be the same again. The old adage, “It’s not what you say, but how you say it”, does not naturally apply. It is what you say and how you say it. Parents may be defensive or overly critical of what is said. And no matter how well meaning the intent, there will be some parents who misconstrue or misinterpret what is said. That is why it is always good to have them repeat what you have said before they leave. This clears up any miscommunication and reinforces the message.

3 Chances are, parents have been referred around and have been waiting some time for a new appointment. Anxiety and fear are high. The news your Physician has to give you will make you face it squarely. He/she will give you the time when you need it when he/she breaks the news and be prepared for him/her to call you back the next day. Words like developmental delay, mental retardation, and physical disability send up huge mental roadblocks. You may need to have your Physician repeat what he/she said or explain it several times. Listen to their acute pain before it becomes chronic sorrow. And a word about denial: it is not all bad in small doses. Denial buys time for the heart to accept reality. Understand that parents have a deep rooted desire to know not only what is wrong, but also to know why. Telling someone to give up is not the right thing to do. I know that it is very important for you to know what is wrong and why and I know you will not give up trying. Just remember to take care of yourself. Like on an airplane, the stewardess tells you to put on your oxygen mask first in case of emergency. You can not help your child unless you have the oxygen you need first. There will be some challenges, but there will be people to help you through this. If you do not know what is wrong, ask.

Timing can be important. Doctors wish they had the luxury of telling parents what they need to know when they are ready for it. Some parents want all of the information at once, while others want to take it more slowly. While it is impossible for the Doctor to have catalogs on every disorder, they can keep up with resource directories that will help point them in the right direction. Do not send parents home empty-handed. Giving them something – a contact person, a telephone number, a support group, and other parents – is a lifeline. Parents are the best things that can happen to other parents. Parents are challenged mentally, spiritually, emotionally, and physically. When parents have a child with special needs, out of sight is never out of mind. It takes strength and energy to pursue the diagnosis, find an appropriate treatment plan, find others who will support it, provide and pay for the right equipment, entertain and do therapy in addition to the many custodial aspects of care. We must cope with lost dreams for our beloved child, silent stares from an insensitive public, hours of lost sleep we can never recover, and relatives and friends who do not always support us.

An ideal Physician should be humane, gentle, understanding, and consistently constructive in his/her selection of facts and words for the purpose of communicating usable knowledge about a terminal illness to both the patient and his/her family. He/she should not be unduly pessimistic or optimistic. He/she should hold out no false hope, yet be careful to verbalize clearly every fact, which gives hope. There must be time available for the telling and for the discussions, which follow. Physicians should be prepared for any reaction. From it, they can learn a great deal about the very special needs of their patients and how

4 to meet them. Physicians must realize that the immediate coping with such news is intensely painful and time consuming. Preparing oneself to die takes time: a time for denial, a time for anger, a time for bargaining, a time for depression, and one hopes a time for acceptance. For both Doctor and patient this time allows for a precious process whereby a quality of intimacy reaffirms a vital relationship. For if Physicians can both “speak the truth in love” and listen to their patients in love, they can rest assured that their patients will have a tranquil terminal period. What about those patients who request not be told anything? It appears that they realize the severity of their prognosis, but yet they cannot bear to be told about it. They are probably functioning under the assumption that a Physician with promising news would definitely override their wishes. Conversely, if the prognosis were poor, the Physician would avoid such a discussion. Although forcing the truth upon patients is not advisable, Physicians should explain why they feel the patient should know. In this discussion, even if patients continue to resist the truth, the Doctor should try to alleviate the fears of abandonment, isolation, and pain. One must recognize that a patient may require time to face a catastrophic threat of this kind. A consistently supportive and encouraging attitude on the part of the Physician may, over a period of time, make it possible for the patient to face this painful information.

On the other end of life’s spectrum, we find another group of individuals “in need of protection” – children. Considerable effort is often extended to keep a diagnosis of a terminal illness a secret from children. However, no matter how hard their parents and Physicians may try; children quickly sense that something is seriously wrong. This may even lead to behavioral problems in that they can no longer rely on the persons they had come to trust and love. Dying children, like dying adults, also worry and fear the dying process. They are eager and relieved to have someone to talk with and to answer any question and feel secure that they are getting an honest answer. Telling fellow human beings that they have a terminal illness is very difficult. However, it is clear that withholding information inflicts only harm. And yet, because our society is so afraid of death, Physicians still continue to disguise the truth. Perhaps we should begin by teaching the truth about death and dying to people of all ages. The realization that death is but a continuation of life, should be taught along with other aspects of life. If we allow the dying to return to their place in their homes, to return from mechanization and impersonalization, and to be considered living human beings, we will find that they have much wisdom and love to share with us. We would always cherish these opportunities.

No one better than a dying person will help us to come to peace with our own finiteness. If we spend a little time with them, if we can hear them when they are ready to talk, they will teach us not only what it is like to be dying, but also essential lessons in living. It is their

5 gift to us for taking a little time out of our rushed schedules when their values begin to change to the real values of life. The real values we often discover too late – unless we listen to our dying patients.

If Only We Can See

Sometimes we forget the “special children in the world the diseased handicapped or disabled ones. They have so much to offer us if we could only see.

These children lose their sight their ability to eat and their ability to walk but still they have so much to offer us, if only we could see.

Toward the end of this horrible disease a smile or tears is all they can offer but parents cling to any small thing they do in order to show recognition.

We lose these children much too early this creature they cal Batten Disease and then all we have is memories. These Little ones have taught us so much of life if only we can see.

Nancy Carney RN BDSRA Family Medial Liaison/Educator Published in “A Surrender To The Moon” The International Library of Poetry, 2005

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Chapter 2

To Tell Or Not To Tell

What Should A Child Be Told – as has often been the case, the child is neglected when faced with a life-threatening illness. Much of the time and energy of the health care deliverer is spent helping the parents cope with the psychological upheaval of tending to a terminally ill child. Even though it is necessary to understand the problems of the parents, it is cruel to overlook the needs of the child.

In the past, it was believed that children could not understand the meaning of their illness, let alone be able to deal emotionally with its prospects if they were told. The results of further research have shown that children know the seriousness of their disease, and often the diagnosis, without being told directly. Surprisingly, sick children may be aware of their illness from as young an age as four. Since children do have such an accurate idea of the fate that approaches, the need to talk to them is even greater. The lack of discussion or acknowledgment to children as to the seriousness of their illness may lead to a feeling of isolation. Children may believe that others are not aware of what they are experiencing, or even worse, they may feel that their disease is “too awful” to talk about. It has been shown that it is most beneficial to the children to make sure they know that their parents and physician can answer their questions and are willing to discuss the sickness when the need arises.

So when first dealing with the child, it is important to establish a relationship that allows for questions, where it is understood that no barriers exist in discussing the topic of death. Children are capable of talking about death, and if they ask questions concerning their own death, this indicates that they really want to know. There has been no established criteria as to know how much to tell children, but it is believed that the best method is to let them lead the way. If they are allowed to be comfortable when asking questions, they will ask those questions that are most pertinent, and when satisfied with the information received, will generally feel more assured. It may take children weeks or even months to feel secure enough to ask those questions, but it is important that the

7 opportunity always exists for their questions to be asked and that they are always made aware of this. When explaining the illness to the child, both the physician and parents should have a positive approach. The child reacts much more too how something is said than to what is said. Thus the child is more impressed by the implied, positive thinking conveyed by both the physician and parents. But both physician and parents should beware of oversimplifying or relating the disease to a concept the child cannot fully comprehend. The best approach may be to draw the explanation as much as possible from the child’s own experience. This allows for the least possible amount of distortion to be made by the child. To assure even further that the issue has not become more complicated by the explanation, it is a good idea to ask the child to explain back what he or she has been told. This allows one to correct any misconceptions the child may have before they can cause any further damage. A point that needs to be considered by both physician and parents that children should be told of their diagnosis and its implications even if they do not ask for the information. The reasoning behind this is that a playmate, which may cause later emotional problems and distrust toward the physician and parents, may tell a child. If the illness is made known by adults, the child will cope by denying the illness and will be able to withstand any shock when told accidentally by a friend.

To Tell or Not To Tell About the Diagnosis – To a child being “sick” is the flu, “being old” is everyone over 20. Honest communication enables him/her to differentiate Batten Disease from a childhood or ordinary illness. This decreases his/her fear for himself/herself and other loved ones who may become ill. Reassure children (honestly) of your health. You must be the model of taking care of yourself.

This portion of the book is written for parents who are living with the fact that, despite everyone’s best efforts, their child will die. Many parents who are trying to help their children cope with a terminal illness do not know how to start. In the following pages, I will present some things for parents to consider as they talk and interact with a seriously ill child.

I am offering this guide because I believe that, even though we cannot control death itself, we are not powerless. We do have choices; choices about how and when we talk about death and dying, how and when we will prepare ourselves and the children we love for an approaching death. The suggestions in this book have proved helpful to other families who have faced the death of a child. However, it is important to remember that each family travels the path of loss and grief in its own way. There is no “size fits all” approach to coping with the

8 death of a beloved child. I urge you to adapt what you find to your family’s unique needs as you travel through this difficult time. Many terminally ill children retreat. They do not think the Doctors or parents can handle the truth. You may not be able to cure them, but you can listen to them and reach out to them. Do not think they can not handle it. It is we who can not handle it.

Most Parents struggle with the question of whether or not to tell their child he or she is dying. Talking with your child about the possibility of his or her own death can be heart wrenching – and the sense of helplessness it brings can be overwhelming. Parents often believe their children are too young to comprehend what dying really means. Or they worry that a child will react with fear and confusion, and that their own sadness will overwhelm the child. Given these concerns, it is understandable that you may find yourself avoiding the opportunity to talk openly with a child who is facing death. And in the world of Batten Disease where dementia is a factor, the question arises “Do they really know and understand that they are dying?” So, why should we say anything to them. Some Batten children have asked their parents if they were dying, so some parents are faced with answering these questions. Therefore, it is important that you know how to handle the situation should it arise with your child.

Research is clear that children are usually aware of their approaching death, even when not told directly. Children often do not let their families “know that they know” because they want to protect their loved ones from grief. They also may want to prevent their doctors from feeling they have failed. Many seriously ill children let us know they are aware that their lives are in danger with changes in behavior such as:  Withdrawal  Eating disturbances  Tearfulness  Anxiety/fear  Regression  Depression  Anger  Sleep Disturbances

These behaviors are not uncommon in children with serious illness. However, if you think your child is demonstrating behaviors that are too intense, too frequent, or last too long, contact a member of your child’s health care team for additional help.

9 The child who does not exhibit any of these behavioral changes is still likely to be aware of the seriousness of his/her condition. That is why children of all ages, even toddlers and preschoolers, benefit from honest and reassuring conversations about their condition with a parent. By talking directly with your child about his/her condition, you can reduce the isolation he/she may feel if left to deal with these thoughts on his/her own. You can give him/her the chance to share any fears that he/she may have. Children of every age feel safer and can cope better when they know what is happening. And, despite the sadness of such an occasion, these conversations also offer an invaluable opportunity to share the love and concern you have for one another.

Some parents may never choose to fully disclose to their child the seriousness of their illness. If this is your choice, you can still express your love, acceptance, and understanding of your child. You can still know that you have supported your child in a way that feels right for your family.

Typically, the dying child’s grandparents tend to be less accepting of the diagnosis than the parents. More distant relatives and friends challenge the reality of the diagnosis even more frequently. Parents generally perceive most of these statements and suggestions as attempts to cheer them up and give them hope. Yet, parents often find themselves in the uncomfortable position of having to “defend” their child’s diagnosis and prognosis. Sometimes the parents reported feeling that other people thought they were condemning their own child. Thus, these parents were not allowed to express any feelings of hopelessness, yet paradoxically they were expected to appear grief-stricken.

The reactions of children at the time of diagnosis depends upon a number of factors, including their age, what are they told about what is happening to them, if anything, and whether they are hospitalized. If their diagnosis is made during an acute episode of the disease, they may display little psychological response or open expression of emotion because their energies are being used in combating the disease process. Although children may not understand the diagnosis, prognosis, or the therapy, they are adept at reading messages and picking up clues and signals from those around them. Very young children perceive what is happening on a feeling level. Their parents are suddenly protective to the point of smothering them. Regression, temper tantrums, or various other forms of misbehavior may suddenly be allowed. Children as young as eight months old have been observed reacting to their parent’s emotional reaction to bad news.

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11 Chapter 3

My Child and Family: Facing a Terminal Illness

The home life of the family generally centers on the terminally ill child. Both parents and siblings sacrifice time, money, and energy for the ill child. Parents admitted that the other children in the family were neglected during the illness. The family does not enjoy social events, and parents feel guilty about being happy. By now you have heard a statement or statements from one or more doctors and others, some direct and to the point, others somewhat less direct. “Your child has an untreatable illness.” “I am sorry, but there is nothing we can do to cure this illness.” For some parents, this will be the only confirmation of a long held suspicion, a fear not before confronted. For others, it will come as a complete surprise.

Questions and answers from Parents Is my doctor doing all he/she can do for my child? Is he/she truthfully answering my questions? Is he/she explaining tests to my child and me? You will have positive and negative experiences. Insist upon explanations for you as well as your child no matter how young your child is. Parents need to accompany their children during treatments and tests and to insist upon this. The children were less frightened and at least had a hand to hold. Also, children cannot speak for themselves and need their parents as advocates. Parents also encourage others to follow their intuition, their gut feelings.

Did we as parents fail to detect the early signs? What were the signs? What could we have done? How did the disease start? Would the outcome have been different if we would have known earlier? Can it happen again? We now know the answers to these questions, after the fact. The early signs of Batten Disease depend on which form of Batten is in your family. With Infantile, symptoms can present itself as early as 6 months of age with “failure to thrive” – difficulty with feeding, requiring a G-tube, difficulty with any kind of mobility, even sitting up and/or crawling. They never talk, never sit up or walk by themselves. With Late Infantile, the first symptom is usually seizures, followed by visual and motor issues, and with Juvenile, children begin loosing their eyesight first, then seizures, followed by motor issues, and all three of them are usually misdiagnosed as other diseases – “Failure to thrive, epilepsy and retinitis pigmentosa. The disease occurs because in Infantile and Late Infantile, these children lack an enzyme that is necessary in the breakdown of proteins and fats that we eat, and because they do not have this particular enzyme, these fats and proteins build up in the brain. In Juvenile, it may be

12 linked to a protein that has not been identified yet. The more clumping of these deposits in the brain, the more functions are lost. Being a genetic issue, there is nothing that you could of or should have done. The disease started at birth when your child probably had a very small amount of the enzyme available (or none) and it took 6 months or up to several years to show the first symptoms of the disease process. The outcome of the disease would not have been any different. Although the earlier you know and can keep your child physically and cognitively active, doing activities such as physical therapy, horseback riding, swimming, activities at school, etc., the longer your child is able to keep up these activities, the better it is for your child. And yes, it can happen to another child you may have. In each pregnancy, there is a 25% chance of the child carrying the genes for Batten Disease – both parents have to have the defected gene (autosomal recessive) in order for the child to have the disease. There is a 50% chance that the child will be a carrier, and 25% chance, that the child will not be a carrier or have the disease.

Are you confident in the diagnosis? Would you like a second opinion? For many parents a second opinion can be helpful. A second opinion is having another doctor or doctors see your child to arrive at an independent opinion about the diagnosis, treatment options and prognosis. A second opinion offers a degree of confidence about the diagnosis that can help alleviate uncertainty. For some conditions and for some parents, there is no realistic need for a second opinion, ask your physician about this. There is no need to be shy or timid. Physicians are used to asking for second opinions with their parents. They often provide second opinions for other physicians and in most cases this should not pose a problem.

In some cases - End of life involves a switch from physicians who deliver high technology, invasive care to physicians who have a focus on comfort, family involvement, and shared decision making. It is important that your doctor be someone whom you feel comfortable with and, very importantly, is someone you can communicate.

Is there another parent I can talk to who is going through this? What helped you cope? How does a single parent cope? BDSRA (Batten Disease Support & Research Association) has a mentor program where we can connect you with another family of the same form of Batten Disease if you wish. We also have our yearly conference where families from all over the US meet and have social time as well as sessions on topics of interest in regards to Batten children – for example, some we have done in the past are seizures, education, behavior, pain, respiratory, gastrointestinal, or grieving. How do we cope – many people are helped by religious faith and supportive friends. Some parents stressed knowledge about the disease as a coping factor. Reading about the condition, researching experimental

13 methods, and learning about treatments available helped some parents cope. They felt this made the disease less foreign to them. Also, parents taking care of their children at home gives them control of the situation and makes them feel less helpless and powerless. In today’s world, there are many single parents. It is very difficult to care for a child with Batten disease by yourself but you can do it. With the help of the educational materials from BDSRA, other families within the organization, the equipment exchange program, and the services that are available in most states, you can do it.

The Child and Family – Facing a Terminal Illness Psychological impact of life living with a life-threatening disease requires psychological adjustments by the patients and their family. These adjustments take place in stages and usually begin with the announcement of the diagnosis.

Five stages of changes in self-concept Stage 1. Seriously Ill – the child is admitted to the hospital for tests, a bewildering and frightening experience for children and their parents. At first, children view themselves as ‘normal’ children, expected to behave as other children, using typical childhood techniques for getting what they want. Following diagnosis based on their history, physical examination and test results, the children quickly become aware of the differences in how adults act toward them and of how many more gifts they receive. This leads to a new view of self as being ‘seriously ill’ which is demonstrated by an ‘exhibition of wounds’ where every visitor is shown the pricks from needles, on every visit. This view of self persists until there is evidence they are getting better. Stage 2. – Seriously Ill and Will Get Better – from regular outpatient clinic visits the children learn of various drugs and their side effects, usually from conversations with other children. They do not pass into stage 2 until they have experienced a remission and a few rapid recoveries from disease related incidents. The longer they are in remission, the more they believe that they will eventually get better. They essentially see themselves as sick before, but better now. Stage 3 – Always Ill and Will Get Better – following the first relapse the children are required to reframe their thinking of themselves. They have begun the chronic relapse- remission cycle and the familiarity of symptoms and procedures return. There has been a time, perhaps a long time where a return to ‘normalcy’ pushed the realities of the disease well into the background. They find that adults will not talk to them about the disease or the drugs, so they resort to eavesdropping on the adults and discussing symptoms, drugs, and side effects with the other children. At the same time they need people, especially adults, around them. Adult reactions of avoidance and discomfort require the children to learn appropriate social roles for maintaining the essential, supportive contacts. They

14 come to associate their symptoms, the painful medical procedures and adult reactions of avoidance and tears with a view of themselves as being always ill, but at some future time they will ultimately get better. Once they are in remission again, the parents and consequently the children come to believe that one can be sick many times, but one can still recover. Stage 4 – Always Ill and Will Never Get Better – more relapses, on-going pain, and sometimes drug complications, force the children to see themselves differently. Their decreasing abilities, their greater removal from normal childhood activities, and the increasing hospitalizations create the sense of having better times and worse times, but always within the context of being sick. They can do less and less for themselves, planning for the future stops or becomes very short term; they no longer think in terms of ‘what I want to be when I grow up’ or even of distant holidays, they mourn the developmental stages they will not experience. Stage 5-Dying – once children are in Stage 4 they may stay there for some time, but hearing about the death of a peer from the same disease causes them to move into Stage 5. They realize the remission-relapse cycle has a definite end, death. However, they cannot synthesize this information until they are themselves in Stage 4, so that earlier deaths will not have this effect. It is necessary for them to accumulate all the disease and treatment knowledge personally before this disastrous new awareness can take place. Their activities and interests now tend to have limited themes, often symbolically reflecting death. In various forms, either overt statements, or through symbolic verbal and nonverbal images, the children indicate that they know they are dying. For many, the cause of death of these others was a major focus, as was the similarity of that cause to their own circumstances. Communication becomes more of an issue at this stage. For many children there is a need to protect the adults, to maintain a form of mutual pretence. This is simply a way of each knowing what will happen but not communicating this knowledge. In order to cope on a daily basis there is a pretence between adult and child that everything will get better. This keeps the needed adult close and allows for relief from constantly dealing with the intense emotions. There is decreasing communications with people and less cooperation with many procedures, especially painful ones that have not made any positive difference so far. For many children there is an awareness of time, of not being here indefinitely and of not wasting time now. The transition from Stage 4 to Stage 5 can be over hours or over months, depending on the circumstances, but ultimately all children end up at Stage 5 at an inner level, knowing and expressing their awareness of their own personal death in some form.

This is where effective communication with the medical community is a must. The mechanics of the telling of medical bad news have been studied over the years. There is

15 no question that the process differs somewhat depending on the medical facts and the personal background of the family members involved. When a patient has a serious or fatal illness, the immediate impact of the news is often greater than when a physician describes the presence of a chronic or lifelong condition such as mental retardation or cerebral palsy. The ultimate acceptance and adjustment to the chronic disease or condition, however, may be much more difficult than the adjustment to or acceptance of a more acute illness.

When the patient is a chronically handicapped child, there is a significant likelihood that the family will have difficulty accepting and adjusting to the presence of that child in their lives. Several factors relate to this fact including the possibility of more complex issues of fear, guilt, and responsibility as well as the absence of a recognizable endpoint to the process given that the life of the individual concerned is not immediately in jeopardy. The process of adjusting to or accepting the handicapped child is ok to the grieving process, which occurs as a natural consequence of the loss of the idealized child the parent had wanted.

When parents come together, we connect our losses. Joy shared is double joy-sorrow shared is half sorrow. What we feared might be hard to embrace holds us close and hugs us gently together. We learn that what does not kill us makes us stronger. We learn that there are places in the heart that would not exist without pain. And we learn to laugh as we realize there really is no such thing as a normal family. When is help helpful? First, accentuate the positive – strengths in the child and the family. Use simple, frank, terminology. Consider parents to be observant, perceptive, and intelligent historians until proven otherwise. Respect parents’ ideas – they are experts on their child. When parents request new services, help them rather than criticize. It is helpful to tell parents they cannot figure everything out for a lifetime. Taking things one day at a time, as hard as it is, allows them to gain a better perspective. Today is a Gift…that is why we call it the Present. But it can be a lonely uphill struggle. The land of “Special Needs” is very different from anything we have ever experienced. In this new place there are not many signs with directions. We look for maps, but find few. The language is very complicated and hard for us to understand. We struggle to make sense of it, especially how we got here and why. You will find yourself tossed into a world of confusion and uproar, void of the safety, and security of your beloved hometown. Your friends will stay behind and will not understand. You will feel like a hostage. You will stop trying to escape. You will make some really good friends and learn some things about yourself you might never have discovered. In fact, you may find yourself stronger, wiser, and more thankful, a little less

16 judgmental and a lot more spiritual. This is not something you can preach or teach; it has to be lived to be learned.

Someone said that raising teenagers is like nailing Jell-O to a tree. If this is true, raising a child with special needs is like nailing the Jell-O before it gels. Parents may have to lift and carry their child, put on braces, feed, toilet, diaper, bathe, dress, brush teeth, reposition, and program and reprogram a communication device, give medications, plan surgeries, therapies, and other appointments, and keep up with the latest research. They must cheer up a cranky bus driver on short notice, negotiate to increase therapy when the school is trying to convince them that less is more, listen to the advice and opinions of family members and friends who know nothing but say anything, convince the insurance company that yes, he/she really is handicapped – we are not making this stuff up, keep their sense of humor in public places when he/she screams a chilling Tarzan yell, throws food at the kind person sitting next to him/her in McDonald’s, walks to the front door naked when the pizza delivery guy comes, reaches for the guy’s crouch when standing in line at the pharmacy, throws up in your face at the mall, pees on the floor outside the pool, or leaves floating logs in the pool. When they have done all this they can face the neighbor kid squarely in the face when he/she says, “What is wrong with him/her”? Tell him/her with an ominous look, “You ask too many questions.”

It is so important that parents be good to themselves. Taking care of all of someone else’s needs for a lifetime is a task, in spite of love, strength, or positive attitude. Most of us do what we can to provide for others’ needs first because there is little time for everything. All too often, parents find themselves at the bottom of the list. I tell them, “The nourishment pitcher is before you. While you are busy filling the glasses of everyone around you, when you finally get around to refilling your own glass, the pitcher is empty.” Then they become exhausted, discouraged, and depressed when their cup runneth over. Society tells us that since we have special kids, we are special parents and most of us take that to heart. We think that everything we do has to be heroic – and the world keeps reminding us what saints we are. Give parents permission to be human, to grieve, to be angry, to be fed up, and to be un-special. Do it before they reach the end of their rope. Perspective is important. Attitude is our most important possession. It is not what happens to us, it is what we do with what happens to us. We can choose our attitude every day. We cannot change the disability or how others will act. We can only change ourselves. Life is ten percent what happens to us and ninety percent how we react to it.

Denial is not the way. Avoidance is not the way. Dropping the bomb is not the way. Honesty is the way. Life is not always fair, but BDSRA and your Doctors are here for you.

17 Parents need to hear that. Physicians have to be true to their word, pulling for his/her patients and their families every step of the way. Physicians have celebrated all the accomplishments and mourned the losses with the families. They have been willing to answer our questions and also to wait through the silence when we were too numb to ask. Support is the way. We want to know all that we can about what to expect for our child and how to help him/her. We want to feel like we can ask any question. Sometimes we do not know what it is we want to ask. Information is the way. Your marvelous developmental pediatrician should include your child in conversations. Your child may know that something is wrong inside him/her long before the parents ever did. It is only right that he/she be involved if he/she wishes. The Physician should speak to him/her and not through him/her, knowing he/she understands as best as a child can. Respect is the way. The geneticist should also be very gentle when families are receiving the confirmation of the diagnosis. The geneticist and his/her staff should offer the names of local individuals and organizations to contact for assistance, which can help parents feeling supported and hopeful. Like many developmental pediatricians, geneticist’s never gloss over the impact of a child’s disability will have on a family. But he/she can give us links to others who could walk with us. Building bridges is the way. Giving bad news is really the first step. Coping with the news opens a new chapter with the next appointment. The greatest importance of life is the impact it has on other lives. Never doubt for a moment the significance of a Physician’s willingness to provide knowledge, support, and understanding to families broken by bad news. A Physician’s help means more than you will ever know.

Making the Most of your Doctor’s Appointments Keep a Journal  Of troublesome symptoms  Of all medications currently being used and those that were changed (include dosage size and time). Include any side effects of previous drugs  Of all vitamins, supplements, over the counter medications and alternative therapies you are using or have used.  Of symptoms, concerns or new observations (i.e., seizures, sleeping difficulties, or behavior changes). Be as descriptive as possible. Do not try to self-diagnosis. Diagnosis is your healthcare provider’s specialty. You can help by being specific about what is going on.  Of your health goals.

Schedule the Appointment When you schedule the appointment, be clear about what you want. If it is a check up, consult the recommended exam schedule in this book and consult your records to see

18 which routine procedures are due. Ask which tests will be done and if any special preparations are necessary (blood tests or shots, etc.) If your healthcare provider does not have your medical records, request that they be sent there. Delivery probably will take several weeks.

Plan to Take These Items Along  Health insurance card  Social security card  Addresses and phone numbers of other physicians  Your family health history  Pen and paper to write down any new information or answers to questions

Ask questions. There are no doubt questions. Inquire until you are comfortable and satisfied. You may want to ask some of the following questions.  Do you have experience treating patients with Batten Disease?  How long have patients with Batten Disease been under your care?  What are your credentials?  What is the treatment plan you offer or suggest?  What tests should be done next?  How long should we wait and see if this medication/therapy works before we try a new one?  Is this the only option available?  What other options are used to treat these symptoms?  What do we need to look for or be aware of?  When should we visit you again?  Do we need blood tests periodically with this medication?  What additional information can I provide that will help you offer the best care?

Remember  That your physician is your paid consultant and part of the team you need to organize to obtain the best care possibly.  To be respectful, but do not be intimidated.  To be wary of any medical professional that tells you, “Don’t worry. You just don’t understand.”  To educate yourself as much as possible about Batten Disease.  Not to understand the value of networking with other people who have been through similar situations.  To always consult with your doctor before making any medical care changes.

19

In families with handicapped children, the first emotional impact comes from the realization that your child is not normal. This emotional event (impact) may be experienced a second time when the physician confirms the parents’ fears. The fact that there is no natural terminal point to the process is only one of the factors that make it likely that the family will get stuck in a cycle pattern of emotional highs and lows known as “chronic sorrow.” In chronic sorrow, parents experience swings in emotion that are characterized by periodic recurrences of pain and sadness, which are precipitated when they are forced to recognize that their child is abnormal. The parents are then able to put their grief aside only with the help of denial and the turning of their attention to the day to day business of taking care of the child. The pain subsides until the next episode of realization is forced on them by some seemingly trivial daily occurrence, such as seeing a normal child of similar age playing in the park. The process of accepting the presence of a handicapped child and the likelihood of developing chronic sorrow can be influenced greatly by the way in which the physician delivers the news to the family.

Although one would expect physicians to be fully aware of chronic sorrow, the fact is that most physicians are not familiar with this process. Nor are they consciously aware of how to help their families work through difficult process of adjusting to the presence of a handicapped child. Following is a list of things that a physician can do to help a family get through the grieving process and reach closure. 1. The delivery of bad news is best accomplished when there is ample time not only to give the news but also to listen. What the physician is about to tell the parents will have an enormous impact on their family for the rest of their lives. The time invested in families at the outset may greatly influence their need for time in the future. 2. Provide a comfortable environment in which to deliver the news. Privacy is an important component of this environment as it allows the family to react to the news according to their needs. 3. Both parents should be told together if possible. Other important family members can be included in subsequent discussions, but the initial discussion is best held with just the parents. 4. Timing is everything. If the family is not able to receive the news at the present time, it is much better to reschedule than to forge ahead. It is usually necessary to provide several sessions to allow time for all the information you need to get across and for questions to be answered appropriately. 5. Begin by pointing out the child’s strengths, whether physical or emotional. There is much to be said for recognizing the child as a whole individual, capable of giving and receiving love, joy, and happiness in spite of handicaps.

20 6. It is not so much what you say as how you say it. Beware of nonverbal cues, and be careful to communicate what you wish to convey with verbal and nonverbal cues. Parents may remember only part of what you said, but they will remember how you said it forever. 7. Be sure that you communicate a sense of calm, caring composure. 8. Be honest and straight forward without being brutal. (The future changes every day – so be realistic, but do not predict gloom.) 9. Avoid jargon when possible and if you use “terms” be sure to define them. 10. Offer to answer questions, and be willing to wait through the silence when parents are too numb to ask. It may take some time before they even know what questions to ask. 11. Be aware that the first visit may not be the best time to give the worst news. The parents’ ability to absorb the whole picture may be hindered by the emotional stress they are experiencing. Arrange subsequent meetings for more expansive discussion and for questions. 12. Do not judge the reaction of the family, but try to use it to identify areas where there might be opportunities to help the family or individual members. 13. Just as you should not remove hope, do not argue with denial. As part of the grieving process, denial allows time for emotional adjustment, which is necessary to carry on from day to day. Denial sometimes manifests as “cure shopping” and should not elicit anger on the part of the physician. A compassionate, truthful answer is usually more helpful in putting an end to the shopping than an angry declaration. “Cure shopping” gives parents a sense of satisfaction when they feel they must be doing something for their child instead of “giving up” and accepting the inevitable. Denial does not usually linger. Time has its own way of bringing reality into clearer focus. 14. Acknowledge the parents’ lost dreams for the child they wished for, and reassure them that in time they will have new dreams. 15. Acknowledge the parents feelings: they will go through shock, denial, grief, anger, and frustration. Assure them that you know it is a difficult time but that you will be there to help them. 16. Always listen to the parents, they may not know the medical jargon but they know their child! Consider parents to be observant, perceptive, and intelligent historians until proven otherwise. Never underestimate the power of their love and dedication. 17. When the child is present, it is important to touch the child, to recognize and acknowledge him/her. Parents will sense your care and know you value their child. This can make a meaningful difference in the confidence and trust parents feel. 18. If you do not know the answer to a question, do not be afraid to say so. Some outcomes cannot be predicted. The parents will develop greater trust in you if they know you are honest when there are no answers.

21 19. Never fail to offer referrals to sources of information and support groups. It is very important for the family to recognize that they are not alone. Parents should not go home empty-handed. Write down support contact numbers; this gives them links to others who will talk with them. It gives them some place to start. 20. Tell the family “This is not easy” and “You are doing a good job.” Acknowledge their efforts and their feelings as well as the fact that they get tired and discouraged just as you would. Let them know they do not always have to be “special”, too. 21. Before they leave, ask parents to repeat back what you have told them. This clears up any miscommunication and reinforces your message. 22. Communicate your willingness to be there for them when they have questions in the future or need continued support.

Although these guidelines are designed for physicians, parents should be able to learn from them some of the things that others have found useful in similar situations. We would add the following guidelines specifically for parents: 1. You will get more done by working with the medical community than you will if you establish an adversarial relationship with the physician or his/her office personnel. 2. Take advantage of the experience of others. You are not the first to be in this situation, and other parents have had to find the same answers you are seeking. 3. Keep a notebook; write down questions, lab results, x-rays interpretations, diagnosis, names of consultations, medications, helpful agencies, and etc. This will be a useful adjunct to your memory on many occasions. 4. Be sure to ask questions. There is no question that cannot or should not be asked if it is of concern to you. Expect answers but be aware that extensive lists of questions may not be appropriate for a short office visit. It may require a more extended conference, which should be arranged at a convenient time for you and your physician. 5. Do not be afraid to express your concerns or feelings to the physician or other care providers, but be aware that it may be hard for them to put themselves in your position or understand your concerns. Sometimes, support groups or parent groups are more useful in this context.

I want to help you begin to think about this process as a series of steps. For very young children, you are the decision maker. They count on you and thus your wishes, your preferences, and theirs are the same. In this circumstance, you will need to work with your child’s doctor or doctor’s and others involved in their care to determine how this process will proceed. If your child has months to live, many of these decisions can be briefly postponed, giving you time to think. If your child has days or a couple of weeks to live, many decisions need to be made in the near future. Some decisions may need to be

22 made almost immediately. Depending on the age of your child, you may need to make all of the decisions for them. This will certainly be the case for very young or severely handicapped children. For older children, a frank discussion of these issues will be important. They need to be involved in the decision making. For children with a terminal illness, a change in care is required. If you are reading this book, it most likely means that your child’s death will be a process and not a single event. If your child died suddenly, the steps in this book are already behind you. You have important decisions to make and we need to speak clearly and directly about these issues. Treatment primarily directed to cure. Treatment primarily supportive of physical, emotional, and spiritual needs: Death Bereavement.

MAINTAINING HOPE Hope is always appropriate You can set realistic goals regarding what may be expected and what can be done without giving up on your child. It can be extremely difficult for families to shift their focus from curing their child’s disease to comforting them in their illness. Yet honestly acknowledging that your child may die is not “giving up”. Many parents who have accepted hospice care for their children say it gave them the positive support they needed to help focus on quality time, comfort, and peace for their child.

Parents sometimes worry about how to respond when the dying child talks about his/her dreams for the future. It is always OK for you and your child to talk in a positive way about the future, even while you are also having honest conversations about the seriousness of your child’s condition. Even during a terminal illness, it is always possible – and important – for parents to acknowledge and affirm their children’s hopes.

Child: “I can’t wait to go to the beach next summer!” Parent: “Going to the beach is so much fun! I love the waves. Tell me what you like to do when you go to the beach.”

BEGINNING THE CONVERSATION “Look at these beautiful flowers. They came up in the spring and it has been so much fun to see them grow bigger. See how some of the flowers are starting to turn brown. Soon they will die and go back to the earth”

23 The conversations you have with your child about the illness should be part of an ongoing process of communication. Over time, parents and children together can share and review information and gently reach an understanding of the seriousness of the child’s illness. Some parents feel comfortable having these conversations on their own with their child. Others enlist the participation of members of the child’s health care team, local clergy, or other family members.

Initial conversations with your child may not include an actual discussion about their actual death. They may, for example, focus instead on nature and the cycle of life. However, these early discussions will be an invaluable stepping stone for more in-depth conversations later on.

Your child may never actually ask you questions pertaining to illness and death directly. However, it is likely that your child is wondering about at least some of these issues. You may need to initiate conversations with your child about these concerns so that you can provide much needed reassurance. Here are some suggestions to help you get started.

Review with your child what has happened in recent days and weeks. Use gentle questions and find out what your child understands. “You know that your Doctor wanted you to have another scan. Do you remember why he/she did that?”

Correct any misunderstandings your child may have as you talk. “You are right that in the past you have always had routine scans every two months. This time the Doctor wants you to have a scan earlier because of your new headaches.”

Share new information with your child. “When we talked with the Doctor today he/she told us that the MRI shows that your tumor is bigger. So you are going to stop taking the medicine you have been taking for the past few weeks because it is not working as we hoped. We will be able to spend more time at home and there will be nurses who will visit and care for you. You will still get medicines to help you if you feel sick or have any pain.”

Later conversations can relate more directly to the child’s condition. I wonder if you ever think about what might happen if you do not get better. A lot of people wonder about that when they get very sick. Some people even wonder if they will die. We know that everyone will die someday. We never know for sure when a person will die. Your tumor is getting bigger. We hope that it will stop growing, but if it does not, it could cause you to die.”

24 ANSWERING YOUR CHILD’S QUESTIONS “WHAT IS GOING TO HAPPEN TO ME? AM I GOING TO DIE?

Keep in mind that children very often try to protect their parents from their most difficult questions and emotions. If you want your child to ask questions, he/she must feel that he/she, and you, can manage the questions and answers. Children are more likely to ask even their most serious questions when parents provide an honest base of information and create an atmosphere of trust and open communication.

Children commonly ask similar questions during times of serious illness. The way these questions are asked by a child and answered by adults will vary depending on the child’s age and developmental level. Parents need to be able to talk to their child about what is happening in a way that is appropriate for the child’s age and development. In general, it is best to follow these simple rules:  Be honest  Use simple, concrete terms. Young children are very literal. Do not use abstract or complex language.  Give short, to the point explanations. Let the child’s natural curiosity guide you through the conversation.

Here are some possible questions and suggested answers.

What is going to happen to me? Am I going to die? “Your tumor is getting bigger. We hope that it will stop growing, but if it does not, it could cause you to die.” Reassure your child according to your family’s spiritual and religious beliefs about life and death.

Will death hurt? “The people taking care of you will do everything they can to keep you from having pain. If you have pain or feel sick, the Doctor can give you medicines to try to make you feel better.”

What will happen to me if I die? Answers to this question will depend on your family’s spiritual beliefs. You may talk with your child about any family members or friends who have died. Share any beliefs you may have about God or a higher power that will care for your child.

25 Who will take care of my family? Will they be OK? “Mommy and Daddy will always love you and remember you. We will be very sad and miss you very much if you die, but our memories of you will help us feel better, and our friends and family will help take care of us.” Your reassurance that you will be ok can give your child the permission he/she may need to begin the process of “letting go.”

What will happen to my things? “I am not sure…what do you think we should do with your things?”

Why is this happening to me? “We do not know why some people get sick or die sooner than others. We do know that it is not because of anything you have said or done. It is not anyone’s fault”.

It is important to anticipate your child’s responses to discussions about his/her possible death. Responses may range from relief that the “secret” has been shared to acute distress. If your child is crying, angry, or overwhelmed, spend time with him/her, hold him/her, and reassure him/her of your love and care. Most importantly, provide a safe environment for him/her to share these very normal, but sometimes frightening emotions.

After allowing your child ample time to respond to the discussion, you can help him/her feel secure by offering a comforting activity such as reading a story together or watching a video. You can help your child to live as fully and happily as possible even with the knowledge of his/her possible death.

Ways to support your child “Every night, I would crawl into bed with Stacy and tell her stories of her childhood – you know, the time she put her face in the birthday cake at her two year old party…silly things. We would giggle into the wee hours. I treasure those happy moments!”

There are many things you can do to soothe and support your seriously ill child. Even things that seem very small can be enormously helpful to your child during this time. You can choose the words and actions that will best support your child and reduce the isolation and fear that he/she may feel. You can help your child do the things that are important to him/her. You can give permission for him/her to begin the process of “letting go”. You might find the following suggestions useful.

Offering comfort

26  Comfort and console your child in the ways you always have, such as hugs, kisses, back rubs, singing and humor.  Give your child opportunities to express feelings. Give permission to cry or not to cry.  Share your own feelings with your child. This can help him/her identify and understand his/her own emotions more clearly. However, be careful not to overwhelm your child with your most intense emotions, as they may be distressing to your child.  Allow periods of silence and reflection.  Create moments for laughter and joy.

Encouraging expression  Encourage different modes of communicating thoughts and feelings, such as music or art. Examples might include making up songs or making family handprints.  Look for ways to help your child release anxiety or aggression through outlets such as art, physical activity, or even yelling and screaming.  Develop opportunities for active play even if your child has physical limitations. Examples include throwing a sponge ball, hitting a balloon back and forth, blowing bubbles, or playing with toys in a basin filled with water.  Help your child reflect on his/her life. For example, you can make lists or a scrapbook of accomplishments, favorite things, or memories.  Allow your child to express affection and say goodbye to others in a variety of ways, such as giving gifts or writing letters to loved ones.

Creating Security  Maintain normal limits and expectations for your child’s behavior as much as possible. This can help your child feel more secure. Keep in mind there will be times when you need to make exceptions due to your child’s illness.  Maintain your family’s normal routine as much as possible. For example, if your family always eats breakfast together, try to find a way to make this happen.  Provide opportunities for your child to maintain a sense of control by allowing him/her, whenever appropriate, to make choices such as what to wear, what to eat, what game to play, etc.  Allow your child to live as fully as possible. Continue to include him/her in the ongoing life of the family.

Talking with Siblings

27 “When my brother was dying, there were so many things I worried about. Mom and Dad were so upset all the time, but they let me know it was OK to ask them questions. It helped to know that they would always tell me the truth about what was happening.”

The same issues that arise when talking with your seriously ill child will also often be present for his/her siblings. The information provided on the previous pages can also hopefully be able to help guide you when talking with your other children. However, siblings may have some additional questions and concerns. Although you have likely already answered some of these questions at the time of the initial diagnosis of a life threatening illness, they may arise again at this time. Below are some suggestions for how to address these questions.

Can this happen to me or to somebody else I love? Your child’s siblings may worry more about their own health or that of family and friends. For example, they may worry that a cold or minor aches and pains mean that they are seriously ill. Explain to them that no one knows why some people get serious illnesses and others do not, but the pains, colds, etc. do not mean that they will also get a fatal illness. Your child may also worry that another family member may die. Reassure him/her that although no one knows when we will die, most people live a long time. Explain to them about the genetics of Batten Disease, especially if they are older than the affected child. If they are younger, you can always have them tested very easily.

Did I do something to cause the illness? Siblings of a child with a serious illness often feel responsible for the illness. They question whether their behavior or thoughts somehow made their sibling sick. Reassure your child again that the illness was not because something he/she did or did not do. Praising all the helpful things he/she has done while his/her sibling has been sick may help with these guilty feelings.

Can I still play with my friends and go to school? It is important to spend time with their ill brother or sister. It is also important for them to continue doing “normal” activities such as being with friends and going to school. Although their desire to participate in these activities may make it appear as though they are not upset, it is likely that these activities are providing the support and structure they need to help them cope. What will happen when my brother/sister dies? Siblings may worry what will happen to their sibling’s room and toys or they may wonder where he/she will be after he/she dies. Although your response to this will depend in part on your religious beliefs, it may be helpful to assure the children that their sibling will no longer be sick or in pain. Children

28 may also wonder about things like funerals and wakes. Giving them step by step explanations about what will take place will make these future events less scary to them.

What should I do when Mommy and Daddy are crying? Children see their parents as strong caregivers who comfort children when they are crying. Telling your children that they may see you upset from time to time can help them accept this better. Let them know that you will be okay, and that even though you are sad right now because of their sibling’s illness, you can still take care of them. Tell them what would be most helpful to you when you are upset (playing quietly in another room, giving you a hug, etc.) so that they feel better prepared when this happens. However, be careful you do not give the message that they are responsible for taking care of you.

What do I say when people ask me questions about my brother/sister? Children often feel uncomfortable with the increased attention focused on their family when a family member is ill. They may not know how to answer questions about their sibling’s condition or about how their family is coping. Practicing a range of answers with your child can help them feel more comfortable in these situations.

It is possible that your other children will feel jealous or angry at times because you are not able to give them as much individual attention right now. Although most of your time and energy will need to be directed to your ill child, try to find some special time to spend with your other children when possible. By spending even a few minutes talking to your other children about things that are meaningful to them can be comforting. Focus on the quality of that time together rather than the quantity.

Telling a child about a loved one’s serious illness should be an on-going process, and it is best not to give too much information at one time. The rate at which it is done and the amount and type of information given will depend largely on the age of the child as well as the rate of progression of the illness. The choice of words used is important – clear, correct, and precise words are best so that misunderstandings are prevented whenever possible. Trying to explain to children about a serious disease such as Batten Disease when you do not understand what is happening yourself may be one of the reasons why you put off doing it. Finding the right words to use can be difficult. Start initially by referring to things the child already knows about his/her sibling – that he/she has trouble walking, or seeing. Explain to your child/children that you have taken your “sick” child to the doctor and that as time goes on the walking will get worse or that he/she will become totally blind. You may want to explain a little more or this may be enough for this time, but you have

29 brought the subject out into the open and sharing the fact that the disease is not a taboo subject, but one that is safe to discuss.

Gradually, give more information about the illness and its effect. If you include something about how the illness may progress, it also helps the child to feel you are in control, but stress how variable Batten Disease can be. Talking about the practical steps you have in mind to help the family manage is also important. Children may become frightened by the changes in their sibling with Batten Disease. They see him/her not being able to play as he/she used to and to be more dependent on Mom and Dad, becoming more unable to do things. Thus he/she can become angry and irritable caused by intense frustration may worry the other children especially if they do not understand the cause. Time spent giving a simple explanation will help children to cope. Children are acutely aware of “differences” and may be embarrassed by the way their sibling has changed since the illness has begun. They need to understand that and be helped.

Close friends also need to know what is happening and be encouraged to continue coming to the home as often as possible. Telling a child that someone they love has an illness from which they will die, is hard. Just thinking about it may cause you great distress, and you will probably feel you want to protect the child from similar feelings or yourself from the child’s distress. What you say needs to reflect the stage of the Batten Disease. Children’s understanding of time scales is very different from adults. If it appears likely that their sibling will not die in the near future, then the child needs to be told that the death is unlikely to happen for some time.

Children’s understanding about death depends not only on their age and own experience but also the family’s religious beliefs. Some parents may have had an opportunity through family bereavement or the death of a pet to explain how natural it is to feel sad when a loved one dies. It also shows that happy memories can live on after the sadness.

For some children, the only experience of human death is of the violence reported on television news or on films. They may have come to believe that all deaths are like this but need reassurance that this is not true.

Well Siblings A sibling can influence a person’s feelings about himself/herself, his/her perception of others, and even how much he/she accomplishes in his/her life. Pretty powerful. Well

30 siblings have a myriad of mixed emotions about their affected brothers and sisters. Studies show that in addition to feeling protective and loving toward them, the unaffected child can feel angry at, guilty about, or even embarrassed by his/her special brother or sister. If the healthy sibling’s feelings are overlooked or ignored, serious problems can erupt in their lives. Young children may even believe their mother intentionally made their sibling sick. Parents, who ignore a child’s comments or questions and refuses to give them sincere answers, only beget confusion and anger. There can be more nightmares and fears. They can eventually poison the parent-child relationship and destroy the child’s sense of trust. Kids – especially school-age children - also fear that they will catch their sibling’s condition. Older kids may worry that their offspring will inherit what their sibling has. They need enormous reassurance that they will not get their sibling’s illness. First, explain your special child’s problem. Even if it is genetic, most childhood genetic conditions are uncommon. Offer hope that by the time the older kids become parents, doctors will probably have a way to treat the condition.

Talking to Well Children Sometimes explaining a child’s disability is so painful for parents that they dread discussing it, even with their other children. This is particularly true if a child has a congenital illness that the parent knows came from his/her side of the family or was due to something he/she did. Avoiding explanations would be okay if no one was adversely affected. The trouble is that burying such information only leads to more difficulties that can damage well siblings and their lifelong relationships. If children know that talking about the condition is taboo, then irrational, guilt-ridden, and unsettling thoughts grow unchecked. These ideas can manifest themselves into serious fears and resentments or an inability to form intimate relationships down the line. When parents do explain what happened, sisters and brothers may feel bad, but at least they have some grasp of what is occurring. Siblings in the know grow to understand the family dynamics more completely and ultimately admire their parents’ fortitude and abilities.

No Way to Feel Right Once you have decided the how’s and why’s of your special child’s condition, it is critical for well siblings to know that their feelings – the guilt, the embarrassment, the resentment – are all real and acceptable. Remember the situation can be emotionally intense. Chances are everyone has mixed feelings. There is no one right way to feel. Often kids complain about a sibling’s behavior. “It is frustrating when Jill acts that way in public. And even though you understand why, it can still be embarrassing. The problem is, this is the stage she is at now. We need fresh ideas on how to help her”. By engaging the creativity of the well siblings, everyone in the family is strengthened. Periodic family

31 meetings are good settings for discussing feelings. You can do this with or without professional intervention. The sessions give everyone a chance to air his or her thoughts. Parents will hear what their children have to say about a brother or sister with special needs. When there is stress, feelings can be overlooked and become dangerously overheated. Minor irritations can quickly escalate into major problems. It is best to try to set things straight out on a regular basis. Family meetings can also help dispel the rage siblings often feel toward their affected brother or sister because of what they perceive as a unique tie between you and your affected child. Sometimes the “well child” will wish he/she had a problem to get more attention from his/her parents. Parents automatically take extra time with their affected child – between visits to the doctors and other professionals, it cannot be helped. But the other children can perceive this as favoritism. Commonly, the well-siblings vies for parental attention by either pretending to be sick or actually hurting himself/herself so that he/she can see the doctor with Mom and Dad, too. He/she wants reassurance that he/she is loved as much as his/her brother or sister. This is frustrating for parents, especially when they are “wound up” over their unhealthy child. One of the most reassuring ways to let the non affected children feel valued is to spend time alone with them.

Easing Bad Feelings There are ways to help ease bad feelings, too. You can physically express attention for the well siblings with extra hugs or kisses. Remind them of how great you think they are. Reiterate that the reason you spend more time with your affected child is not because you love him/her more but because he/she has different needs. You can also say you can understand why that makes other children in the family feel ignored or angry. Ask him/her to be sure to tell you if he/she is ever feeling ignored so that you can let him/her know how very special he/she is to you.

Anger Certain kids can and do discuss their anger, while others cannot and do not. When kids cannot express their rage, it gets communicated in another way. The well sibling can become aggressive, mercilessly teasing his/her affected sibling about his/her deficits. With this comes enormous guilt, leading to other problems. Sometime they will pick fights at school, become sexually permissive, or talk about and even try to hurt themselves. Many children become angry with their parents because they feel neglected. Often well siblings do not fully come to terms with their anger until adolescence or early adulthood. Embarrassment The affected sibling can embarrass kids. It is a normal part of growing up. Everyone gets embarrassed once in a while. So do not blow it out of proportion. If your healthy child

32 feels the need to distance himself/herself from his/her sibling, it is probably a good idea to let him/her do it. Forcing kids to stay together can have negative effects later. If kids are allowed space when they need it, they will often reintegrate with their family later. One way to help a child deal with his/her feelings is to acknowledge them. Socially, it is extremely difficult for well siblings, especially teenagers, to cope with a brother or sister who is different. We all know that preteens and teens are extremely narcissistic. It is a time when appearances mean everything, when “fitting in” is of supreme importance. So when there is a brother or sister who stands out, it feels beyond horrific to the teen. Often, kids can understand if their sibling cannot read or write well, but they have a lot of trouble with a sibling who acts out, says the wrong thing, or is generally socially inept. They are also embarrassed if their peers do not consider their sibling acceptable. It is as if the sibling’s “uncoolness” rubs off on the well sibling. Experts suggest helping the child understand how he/she socially misfired and then teach him/her with better options. You are teaching your child with special needs to see there is a better way to deal socially. It is crucial that parents explain to well siblings that the child’s behavior is as much out of control as his/her academic skills may be. Doing this often makes the unaffected child more sensitive to his/her brother or sister’s circumstances.

Guilt Guilt comes in various forms. Siblings may feel that they did something to cause the disability. They may feel as you undoubtedly do, that the affected child does not deserve the problems he/she is having. They can feel guilty for being angry with their sibling for something he/she did, or for affecting their lives in ways they do not like, or for teasing their sibling. Older and younger siblings may feel guilty when they surpass a disabled older sibling academically or athletically. Sometimes, the younger sibling squelches his/her own achievements. He/she does not want to outshine his/she struggling brother or sister. He/she must learn to separate from his/her sibling and his/her problems. Parents must reassure well siblings that their success has nothing to do with their affected brother or sister.

Naturally, communicating information about the special child’s issues alleviates some guilt. Secrets create confusion and bad feelings. If you know how your disabled child became ill, explain that to the sibling who is feeling responsible. To help your child deal with guilt, try to explain to him/her that you understand that he/she may feel guilty. Here you are, able to do it all, and your brother/sister, has Batten Disease. He/she can barely hold his/her head up. Nobody wanted this. He/she did not want this. I did not want this. You did not want this. If we could wave a magic wand and get rid of it we would. We need to

33 remember what your brother/sister can do and appreciate all the things he/she is able to do and have faith he/she will continue to do the best he/she can.

Acting Out Stopping hurtful behavior is essential. Parents must not allow a child to physically or verbally treat his/her affected sibling unjustly. Brothers and sisters should work out their disagreements without parental interference, if the well sibling attacks the special child’s deficit, either verbally or physically, the parent must stop him/her. Parents can become compassionate listeners who validate their children’s feelings and support them. It is okay to be angry at the problem, but not at your brother or sister for having one.

Sibling Rivalry We cannot wish sibling rivalry away. But the degree to which it is expressed is something we often can control. Parents will improve familial relations by not comparing children to each other. Treating the special child as the youngest person in the family even though he/she is the oldest is another mistake. If you always treat a person with special needs as the youngest in the family, it robs him/her of some dignity and keeps the youngest child from his/her role, too. Parents should avoid dumping too much responsibility for the compromised sister or brother on the well sibling. Although siblings can help care for a special child in a family, it is enormously unfair to burden a child with the physical and emotional responsibilities of your child with special needs. Children can help, but parents need to be responsible for their offspring. Sometimes, even all that is not enough to make the well-sibling feel better. There are situations where well siblings have to remove themselves temporarily from the family to regain their perspective and sense of themselves.

Twins and Other Multiple Births Experts agree that though they experience the same emotions as individual brothers and sisters, their feelings are more intense. While they can each be the other’s best support, twins can also feel enormous jealousy of and rage toward one another. One child may be jealous of his/her brother/sister’s freedom relative to his/her own confinement, while the other is jealous of the time and attention given his/her differently abled brother/sister. What is more, a well twin can have survivor’s guilt, wondering why this happened to his/her brother or sister and blaming himself/herself for the problem. Twins can also fantasize about having the ideal friendship with their co-twin and the loss of that romantic dream makes them feel more isolated and alone. It is crucial to remind your well twin that he/she will not have the “perfect” twin relationship. As parents of differently abled twins, you are in the unusual position of de-emphasizing their twin ship. This is not to say that

34 you devalue the relationship – instead you emphasize their individuality as a means of freeing both from the burden of comparison.

Support Groups Support groups have been shown to help well sibs, too. It is good to be in a positive atmosphere with people who have similar situations.

A Gift of Understanding Parents who worry about the success and well being of their unaffected children should know that studies show that brothers and sisters claim to have been enriched by the experience of having a sibling with special needs. Although none would have chosen the circumstance, the positive experiences it helped bring about have shaped their lives. First, most siblings feel they are more mature than their peers. Siblings of individuals with challenges are usually well adjusted and responsible beyond their age. Experts believe their maturity comes from sacrificing and dealing with issues other children do not confront. Well siblings often have a deeper understanding of life and will see past a disability, appreciating others as human beings. They become more compassionate and able to always look beyond the outer appearances. They are usually more accepting of differences than other children and people. They are tolerant of people acting differently. Brothers and sisters of children with special needs appreciate good health more than other people. They also appreciate their parent’s child-rearing efforts because they realize how hard everyone worked to achieve family goals. Many siblings of children with special needs go into service type professions and/or volunteer their time to help others. Siblings usually have goals and direction in their lives. They focus on their brother or sister’s abilities instead of inabilities. Unaffected brothers and sisters protect their affected sibling by challenging misconceptions about the disabled. All in all, well siblings, like parents, believe that even though they struggled with the ups and downs of having a special family member, the experience positively influenced their lives.

Thoughts to Remember 1. Explain facts about your child’s disability and what caused it to well siblings. It is okay to say, “I don’t know how this happened.” 2. Reassure children that they will not catch their sibling’s illness, and that in the future doctors will probably know how to deal with the condition. 3. Keep communication open. Have periodic family meetings to get a handle on everyone’s feelings. 4. Give mega doses of love. 5. Acknowledge and accept the well-siblings’ feelings, even the negative ones. Let family

35 members know that you are all in it together. 6. Allow the child to distance him/herself from his/her affected sibling. 7. Stop harmful behavior between siblings. 8. Spend special time with your well sibling away from the child with the illness. Explain that more doctors do not mean more love and that he/she needs to tell you if he/she feels neglected. 9. Find a sibling support group through your local school, place of worship, or medical facility. 10. Keep competitiveness to a minimum by avoiding comparisons between siblings. 11. Allow the youngest to remain the youngest in the family. Encourage trading off responsibilities between siblings. 12. For twins and multiples, emphasize their individuality and help them to see that each has strengths and weaknesses. 13. Teach well siblings to review poor social behavior with the affected child to help him/her see there are other social options. Tell your unaffected children that the affected sibling is still unable to control his/her social behavior.

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Chapter 4

When Terminally Ill Children Are Hospitalized

When terminally ill children are hospitalized, parents will naturally feel anxious about their child. That anxiety combined with a feeling of powerlessness may lead to controlling and overprotecting behavior. At the same time, these parents have developed an expertise in managing their child’s symptoms, and they want healthcare providers to value their participation in their child’s care. While some of these parents may be viewed as “difficult”, nurses who learn to understand them frequently discover that the experience helps them grow both professionally and personally. The key lies in building a mutual trusting relationship. This not only allows parents and nurses to care for the child collaboratively, but can also increase the quality of care for the child. The following are suggestions to making relations between parents and nursing staff much smoother: 1. Familiarize yourself with the child’s condition – parents are well versed. 2. Present yourself openly and honestly – introduce yourself, being open and honest will go along way toward establishing a trusting relationship with the family. Parent’s will be assessing your abilities to care for their child, may be testing you – do not become defensive – supporting the parents, respecting their insight, and acknowledging how frightening it must be for them when their child has a seizure will demonstrate that you are on their side. 3. Show the family that you understand their burden – caregiver burden is a term used to define the combination of physical, psychological, social, and financial problems faced by family members who care for the child with a terminal illness. Parents often have higher levels of depression and anxiety and experience financial and marital troubles. Families who cannot afford to hire caregivers must take on the entire care giving responsibility themselves. To make the time to provide proper care, some family members may be forced to work part-time, or not at all, which may compound financial difficulties. Families of children with a chronic illness may not get the opportunity for typical family activities. That is because they may use their vacation time for doctor appointments or hospital stays, rather than take trips or go to the beach. Parents may not have the time to properly care for themselves. When their child is hospitalized, parents may need to hear that it is OK to “take a night off”. Assure them that their child will be cared for appropriately, and be willing to give them detailed update when they call.

37 4. Take time to listen – To understand what is going on with your patient, you need to spend time in the room with the child and his/her family. Taking time to listen to the parents will help you gain a better understanding of what they go through each day. If you do not make time for this, you will miss a valuable opportunity to build a relationship with them. 5. Include parents in your plan of care – parents of a terminally ill child often prefer to have high levels of participation in, and control of, their child’s care while in the hospital. Allow them to make choices. If you do not show them that you recognize their expertise and concerns and are willing to incorporate them into your plan of care, you risk creating a climate of distrust, and possibly anger and blame. The most important way of including parents is to keep them informed. Parents have the right to expect information about their child’s condition, prognosis, and treatment to be shared openly and in a timely manner. Another way to include parents is to ask them how they manage their child’s care at home and adapt your plan to the family’s rituals whenever possible. Ask parents if there are any tricks they use at home to administer medications. Accommodating the child’s home routine also helps to relieve his/her anxiety caused by the hospitalization. Changes in a child’s medications or treatments may be a cause for concern for the parents. When a change is required, discuss with the parents how it might fit best into their established schedule, while letting them know that some hospital routines cannot be changed. 6. Treat each child as an individual. This starts with treating each child with respect and dignity – which parents will want to see. Avoid using diagnostic labels that stereotype a child. Making things as normal as possible for the child will also help the parents. One way to do this is to suggest recreation that is suitable for the child. Find out his/her interests, and encourage his/her to contact his/her friends. 7. Allow older children to make decisions in their care. Allowing the child to do so will foster independence. Healthcare providers can help parents and children view treatment as a collaborative effort. 8. Maintain patient and family confidentiality. Sharing information publicly about a child will destroy any attempts to establish a trusting relationship, and is therefore unacceptable. Do not talk about a child or family members in a public area like a medication room, elevator, cafeteria, or nurse’s station. 9. Do not judge parents. This may be especially difficult, if a parent complains about you or another nurse. Try to emphasize instead of judging them. What nurses may perceive as aggression may only be the parents’ attempt at vigilance and advocacy. Parents’ vigilant behaviors include constantly monitoring their child’s condition, close attention to proper and timely administration of prescribed medications and

38 treatments, and careful selection and oversight of anyone who interacts with their child. Parents may feel they have to advocate for their child because they believe no one else will. Parents who are the most vigilant about their child’s needs are the ones who nurses label as “difficult”. 10. Help arrange for continuity of care. If repeated hospitalizations will be required for your child, the staff should develop a core group of nurses who will be responsible for your child’s care during each admission. If that is not feasible, avoid having a new nurse assigned to your child each day or shift. It is disruptive for your child, and parents will resent having to repeat their child’s history and care giving techniques to an endless procession of new nurses. 11. Assess the family’s social support and resources. This is essential because social support is a critical buffer to reduce the stress associated with a child’s illness and hospitalization. It also has a significant effect on parents’ coping skills following a child’s hospitalization. Social support may include help from members of the extended family, neighbors, friends, work associates, or members of the family’s church. Do not assume that a family with relatives living in the area necessarily has a strong support network. Some families find that their extended families are not as supportive as they would have hoped. In other cases, what relatives consider “support” can be a source of additional stress on the parents of a terminally ill child. Ask parents how they are coping with their child’s illness. Be sure to evaluate their physical, emotional, and be involved with children and families starting upon admission, as they have resources, mental health, as well as their level of functioning and ability to perform daily activities. Refer parents to appropriate healthcare resources. Social workers should be available to them regarding home care options and other services for which the family may be eligible. Make parents aware of community organizations and support groups. 12. Consider the needs of the entire family. Many factors affect how siblings respond to a brother or sister with a terminal illness. Their age, gender, developmental, and birth order, as well as the type of illness, family dynamics, and degree to which the illness disrupts family life all play a role. Siblings may feel left out or become jealous of the attention parents give their brother or sister, they may respond by being especially good or by acting out. When siblings visit your patient, go the extra mile to acknowledge them. Say “Hello” and ask them their names. If possible allow them to help care for their sibling. Let them draw a picture together to hang over their sibling’s bed. If they are young, give them stickers, a pack of crackers, or ice cream with the parent’s permission. Working to form a relationship with parents and the rest of the family is vital to understanding them and providing the support they need.

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We recognize that a child’s physiology differs from an adult in many ways apart from height and weight and that clinical interventions must be tailored with these factors in mind. Remember these key physiologic differences when you assess and treat a child.

Pulmonary – not only does a child have less pulmonary reserve than an adult, but he/she also has a proportionally higher oxygen requirement. A fast, accurate pulmonary assessment is critical, and intervention must be more aggressive than in adults. Do not simply address existing problems: take actions to maintain and support respiration to prevent respiratory failure that can quickly lead to cardiovascular collapse and death.

Cardiovascular – a child can maintain central organ perfusion in the face of staggering fluid loss because powerful peripheral vasoconstriction shunts blood from the limbs to the central circulation. This causes the cool, mottled extremities and decreased peripheral pulses characteristic of shock in children. But compared with an adult, a young child has less ability to boost cardiac output by increasing cardiac contractility; he/she relies on increased heart rate to maintain cardiac output. So in a crisis, maintaining a child’s heart rate is a priority.

Metabolic – a child has a higher metabolic rate than an adult, which explains his/her increased oxygen demand. In addition, a young child’s renal (kidney) and hepatic (liver) systems are immature, which affects his/her ability to metabolize and clear drugs. Consequently, some drugs clear faster than in an adult; others more slowly.

Body Temperature – with children, temperature is a particularly telling physiologic indicator. In adults, up to 70% of body heat is lost through the head; children have proportionally larger heads than adults, increasing the potential for heat loss. They also have a greater surface-area/body mass ratio than adults, which also makes them more susceptible to heat loss. When children are compromised by illness or injury, both factors make maintaining normal body temperature difficult. During emergency treatment, warmed IV fluids and temperature-regulating blankets are a must for children with low and even normal temperatures.

The nurse will make a fast initial assessment, keeping the potential for rapid deterioration in mind when you triage a child; you want your assessment to be both thorough and fast. You can assess three areas without touching your child:  Appearance or overall “look” of your child, which reflects adequacy of brain perfusion. – is your child alert, rousable to voice, rousable to pain, responsive, assess

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Work of breathing – which experts recognize as a better indication of oxygenation and ventilation than respiratory rate or breath sounds. Labored respirations with accessory muscle use indicate impending respiratory failure. As with adult’s, your first priority in any pediatric emergency is the ABC’s of breathing.  Airway – this is always the first priority: any other supports or drugs are useless if the airway is not patent (open). If the child cannot protect his/her airway, open it immediately using basic life-support measures, such as head-tilt/chin-lift maneuver. These interventions are easy to do and take precedence over more advanced techniques.  Breathing – first, determine whether the child is breathing. If not, call for help and initiate basic life support as indicated. If the child is breathing, assess the adequacy of respirations by answering four questions. 1. Is the respiratory rate fast, slow, or normal? Here is a method to help you – if you feel out of breath watching a child breathe, the rate is abnormally fast. And if you feel the need to help a child breathe, the rate is probably too slow. 2. What is the depth of respirations? Deep respirations can suggest a metabolic problem. Shallow respirations more commonly accompany neurological problems or shock. 3. How would you describe your child’s respiratory effort? Easy respiratory effort points away from a pulmonary reason for your child’s distress. Increased effort with accessory muscle use or retractions indicate a primary pulmonary problem. 4. Can you auscultate any abnormal breath sounds? Wheezes generally arise from narrowing of small airways and bronchospasm. Fluid in the alveoli causes crackles. Narrowing or, more commonly in children, obstruction of larger airways causes stridor.

Assuming the airway is patent, the first step in respiratory support is to administer supplemental oxygen – the higher the concentration, the better. High-flow oxygen via non-rebreather mask is ideal if the child can tolerate it. Blow by oxygen is better than nothing if the patient refuses to wear a mask. Blow

41 by oxygen is a noncontact delivery method used for short term oxygen delivery to children who cannot tolerate a more intrusive delivery method.

Most children will not tolerate nasal cannula prongs in their nostrils. If the child accepts a nasal cannula, he/she is probably too sick to care and needs more than low-flow oxygen. Although blow-by oxygen is a poor second choice to a face mask, it can give a higher oxygen concentration than a nasal cannula if the oxygen source is held close enough to the face.

Inadequate respiratory rate or depth indicates the need for support with a bag-valve-mask device and supplemental oxygen. Endotracheal intubation (a tube inserted into the lungs to assist breathing) is the gold standard for long term respiratory support.

Perfusion of the skin – which reflects the adequacy of circulating blood volume. Blood volume is probably adequate in children with light complexions whose extremities are pink. In dark skinned children, assess skin color on the palms, soles of the feet, and nail beds.

 Circulation When assessing cardiovascular status, focus on presence, location, and rate and strength of pulses; skin color and temperature; and capillary refill time. In children, blood pressure may not be a reliable indicator. Although low blood pressure is almost always a dire sign, normal or high blood pressure is not necessarily reassuring. Vasoconstriction in response to fluid loss may keep a child’s blood pressure up even if he/she is in severe shock.

First, assess central pulses for rate and strength. Remember, in a child the first compensatory mechanisms for lost blood volume are increased heart rate and peripheral vasoconstriction. As blood vessels in the limbs become more constricted, pulses will become weaker until they disappear altogether. Because of decreased blood flow, arms and legs begin to feel cooler, and look pale or mottled. Capillary refill time is probably the most sensitive and easily quantifiable measure of circulatory status. In an adult, you would press on the nail beds to assess capillary refill. But this is not a reliable test in a child. Because his/her nail beds are so small, capillary refill may be brisk even if his/her

42 circulatory status is poor. Check capillary refill time by pressing on the fleshy parts of the palm, sole of the foot, or forehead. A capillary refill time of 2 seconds is considered normal. A capillary time of more than 3 seconds indicates impaired circulation. A capillary time of less than 2 seconds may be a sign of some type of distributive shock (septic or neurogenic).

Children are special; we owe them the best care we can give.

Your Support System Depending on your child’s illness, it is often helpful to find a parent organization or support group. These groups can be the source of valuable information, a voice of experience. You may find them very helpful during this time.

How long do we have? This is among the most difficult questions for physicians to address. In most cases, you will only have a general framework of time. Children’s responses to severe illness are variable. In most cases, your doctor will be able to give you an average prognosis. But keep in mind that these are only general estimates of life expectancy. Some children will die sooner, others later.

Planning ahead 1. Where do we want to care for our child? Where would you like your child to be as their illness progresses? Where does your child want to be as their illness continues and at the time of death? In a hospital, at home, or some other setting? While most children and most parents are much more comfortable having their child at home, this is not the case for everyone. Many parents find that many of the decisions which need to be made also need to be refined several times. In some circumstances, end of life care at home is not the best option. However, one of the most important things about having your child at home during this difficult time is that in most community’s hospice care is available.

Generally, we think of hospice care starting when people have weeks to months left to live. Hospice visits may not be very frequent at first and as time goes on, may become much more frequent and may need to occur nearly all the time as your child’s health fails. This is quite variable from child to child. This service is extremely helpful for many families during this time. Now, we need to deal with the present and the future. This book will help you develop a list of questions you want to ask. 1. Technology – how much do we want? In most settings, the range of available technology is staggering. But how much do you and your child want? Some of the

43 most frequent options include IV’s, nasogastric tubes for feeding, pain medication for comfort, and supplemental oxygen in a tent or through a little tube placed in or near your child’s nose. These are common measures, very often provided and, in most cases have little potential for complications. They do not usually pose a barrier to your ability to touch, hold, or speak with your child. 2. The first level of technology issues are oxygen masks and lines placed by surgery to feed your child. For some children, the IV’s, oxygen delivered through a mask, feeding tubes, will have significant complications if they are able to move their hands. They may have times when these devices are uncomfortable. The problems arise because in order to keep the tubes in place your child may have to be sedated or restrained. This will need to be the focus of discussion between you and your health care team. If possible this should be done prior to placing the tubes rather than while they are being used. You will also need to discuss when they need to be removed. You will have to talk with your doctor and others to learn about the benefits and problems from these options. The benefit is the supplemental oxygen and hydration. The problem may come from being restrained. As you read over the next four topics remember that these are issues that you and your child will almost certainly need to make decisions about. Will you need help to talk about these issues? When will you do it? 3. Respirators/ventilators – for children laboring to breathe, respirators may offer the potential to decrease their struggle to breathe. But most of these technologies also have a rather significant downside. That is, at some point in the course of a child’s eventual death, these devices may need to be discontinued. From a strictly ethical standpoint, it is widely accepted that there is no ethical difference between not starting a respirator for a terminally ill child and shutting one off. However, that is almost never the experience that parents have. In many cases, you may find that this is an issue you wish to think about for a while, and discuss carefully. As I mentioned above, what is the potential benefit from this technology? Is it likely to extend your child’s life, increase their quality of life, and reduce discomfort or pain? The downside is that as the illness progresses, these same benefits may change and now act to prolong death until the respirator can be stopped. The respirator that turned out to be so helpful in decreasing your child’s struggle for oxygen may now prevent you from relating and getting close to your child. The wires and alarms associated with high technology may also become a source of stress for you as your child’s illness progresses. It may be very difficult to decide how and when to discontinue these devices. 4. Pain control – there are several issues dealing with pain control. Effective pain control is an essential feature of end of life care. Some of the most effective

44 medications for pain relief may impact your child’s ability to breathe on their own. From an ethical standpoint, it seems reasonable that if medications given for pain have a side effect, the suppression of respiration, then that this is an unavoidable side effect of these medications. Since your child has only weeks or months to live, dependency (addiction) to these medications is not a concern. These medications should not be avoided or used in inappropriately low doses because of these concerns. Your child should have access to all medications that are appropriate for pain management. We would not limit the dose of these medications needed to provide adequate pain control. Your child will need to have as much control as possible over the use of these medications. 5. Nutrition - In many cases, as the illness progresses, obtaining adequate nutrition may be a problem. Your options may include a nasogastric tube (a tube inserted into your child’s stomach through the nose. In some cases, adequate nutrition can be maintained by IV lines. These are options that you and your child may want to discuss with your doctor. 6. Hydration – If your child is unable to drink adequate fluids, hydration can nearly always be provided by IV lines. However, for some children, it is difficult to keep the lines in place. This problem may be very difficult and require a discussion about the benefits and risks the placement of lines by surgery. In every case, there are options to be considered and each circumstance is different. You and your child will need to determine what is best. Fortunately, this is rarely an emergency and can be thought about and discussed with your child over time. Many states have living wills that can be very helpful in deciding on all these choices. Now let us look at the next chart. You will need to begin with each of the corners of the page. Then think about the list of options in the center of the page.

Our Child Us Estimated life expectancy: Second opinion needed? ______days Work issues ______weeks How much care can we provide? ______Months Home accessibility Other issues: Insurance ______Pain Organ donation ______Feeding Brain Bank ______Friends Support Group ______Care Needs Contact Persons Phone number______

45 Use of Technology 1. IV 2. Indwelling lines 3. Feeding tubes 4. Ventilator 5. Code levels-may change as illness progresses 6. Location of care Home Hospital Home with Hospice

Our Doctor Our Religion 1. Diagnosis We will talk to ______2. Treatment – management plan We cannot ______3. House Calls We need to ______4. Pain Control We need to ______5. Group Practice We need to ______

Now we need to think about children facing imminent death (probably going to live less than two weeks). We want to think about these children in two separate groups:

1. Children who are now on ventilators and life-support systems. 2. Children where ventilators or other life support systems are not being used. 3. Imminent death – now using life support systems – think about the above lists. Each family’s “right” answers will be different, because each child’s circumstances are different. The questions below can be applied to life support systems. What are the benefits and what are the problems from using life support symptoms? Do we need to change anything? How will we resolve these differences? Here is our plan______. Do we want to keep life support systems in place? Can it be discontinued? Should it be discontinued? Does your health care team agree or disagree and why (Doctors, nurses or others)? When should life support be discontinued? 4. Imminent death – no current life support systems – what should we do? What do we want done? What do we want to avoid? I use “we” to include your child, if possible, in this decision-making. You may need to make decisions in a short period of time about how much care to provide. You can begin to think about this by dividing this process into four parts:

46 a. Issues with our child- most young children or children who cannot communicate will have difficulty discussing the care they desire. However, you may be able to learn some things about what they want from their actions. For older children, their opinions need to be carefully considered and included in the final decision. In many cases, this comes down to a decision made by weighing how much of the available technology we want to use. How will we know when we are no longer lengthening life but rather prolonging death? In order to estimate the fit of interventions with your child’s personality and their health at this time, you may want to think about three questions. What benefit can this have for my child? Will doing more, adding more, improve the quality of their life (pain reduction, comfort measures)? What problems are likely to result (increased pain, prolonging death, making it difficult to get close to, and comfort our child)? b. Our beliefs and concerns – The second part of the decision making process: what do you want? Do we need to implement measures that will keep your child alive so that family members can be there to say good-bye? Do you feel comfortable doing this? What do you want to avoid? There may be issues that are important to you that are not on our list. It is usually helpful to write these down. c. Information from our care providers (doctors and nurses) – in most cases, your doctor and nurses will have a series of ongoing conversations, often talking with you about the current health status of your child and some of the upcoming issues. In most cases, not all details will be covered at once and as the illness progresses, new issues will be discussed and new decisions will need to be made. However, you need to talk with your doctor and nurses about several key issues. These are: use of ventilators, feeding tubes, CPR, pain control, medication, depending on the circumstances, you, your child, and your doctor may need to talk about issues such as organ donation or, in some cases, brain donation. d. Our religious Beliefs – you will want to include your child’s and your religious beliefs. Are there particular requirements in your religion that need to be included in the decision making? The need for a priest, minister, rabbi, medicine man, or other person who will be important to you and your child? How will you include your religious beliefs and practices into this process?

Thinking Ahead 1. A Plan – now you have had a chance to think about many of the important parts of care needed to care for your child. Can you describe a plan of care? Where this care will take place (home or other setting, what you want and what you do not want

47 and how this care might be delivered? If you cannot do this, you need to talk with a chaplain, your child’s doctor or others. Remember the plan will change over time. 2. Your child’s friends – will your child’s friends want to and be able to visit? Does he/she want them to visit and when? Visitations throughout the progression of the illness that are more frequent typically work better than long periods between visits when changes are more apparent and more abrupt. Are there things you and your child want to accomplish? When could those be done? Will pain control be an issue? How will pain be controlled? What would your child like to talk about with you, his/her siblings, friends, and other family members? Does he/she have issues about spirituality they would like to talk about? Friends may need to have a discussion ahead of time and they may need help now or in the future from family or clergy. 3. The other children – Do you have other children? How will they deal with this process? They will benefit from a discussion about their sibling’s illness and upcoming death. Talking about these issues is nearly always helpful and provides children an opportunity to express concerns, to ask questions, and to obtain accurate information about the diagnosis and the future. How will they be involved in the care of their siblings? What arrangements will be made for visitation, particularly as their brother or sister’s health declines? 4. The funeral? Have you attended a funeral home recently? If not, take time out and attend one. At what point will you be able to select a funeral home? When can you talk with them about the funeral? These are all decisions to think about.

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Chapter 5

What Kind of Care is Available for My Child?

Home Care for Dying Children – from the inception of modern medical care, hospitals have been the setting for the treatment of children who are terminally ill. The benefit of any continued hospital care is increasingly questioned once it is understood that there is no chance of the illness being controlled. The trend today is toward alternative care in the case of the terminally ill child, home care. More and more advantages are being found in relation to the quality of care the child receives and the benefits psychologically for the family. In the recent past, hospitals have been the appropriate place for the ill to become cured and the terminally ill to die. There is no question that the hospital is where the best possible medical treatment can be received. No other institution has the power to prolong life or resuscitate the dying individual. People, however, increasingly are rejecting hospital care in favor of being allowed to die with dignity and in comfort. Probably one of the most ignored segments of the terminally ill population, insofar as having this desire fulfilled, is the youth of our society. The hospital, though known for its power to care for the sick, has never been strong on giving the psychological support the patient needs. In the case of the dying child, the hospital seems to promote anxiety and discourage its relief.

Terminally ill children react more strongly than would be expected to change in their environment or family, such as fighting between the parents, changes in schools, moving, or separation. The hospital, then, would seem the last place to put a dying child for comfort and prolonged care. The most affected children, emotionally, are those of grade-school age who do not believe the hospital is for their own well being. Instead, they feel they are being punished for the prospect of their own death. The parents are sending them away to die. Once hospitalized, the pressures of separation and loneliness continues to mount for children. They may be subjected to either partial or total isolation, making it even more difficult for them to adapt to their situation. This feeling is further reinforced when, in the hospital, continuous care by one doctor and regular visits rarely occur. Instead, care is provided by several physicians and there is no continuity. Children then have no one they can identify as

49 their physician, and the patient-physician relationship, which can be so important, is never established.

Home care for the dying child avoids much of the emotional stress of the hospital. This was especially evident when, in a recent study, dying children who were old enough to express an opinion, all preferred being at home to being in the hospital. By being at home, children receive a variety of both psychological and social benefits. They are in a family environment where activities that have always been a part of their lives are taking place. The attention and discipline they are accustomed to is not withdrawn, as in the hospital, which can lead to confusion and unhappiness. At home, children receive the needed security and love that are intrinsic to the home environment. In the hospital, the affection that children need is often not provided. Terminally ill children want more affection. However, they do not always make this need known. Often, instead of perceiving this greater need for affection, mothers of these children perceive quite the opposite. When this need goes unnoticed, children are lonely and frustrated. This is less likely to occur in the home. There is no nurse who must see to the needs of a number of other patients, or a doctor who has other appointments to keep. At home, families can share the responsibilities in the care of dying children, as well as provide love and affection. So, just as the home is the natural place for children to be while living, it can also be a natural place for dying. Hence, children have their parents; they are in an environment of family surroundings, they can eat food they are used to; they are able to pursue normal activities as much as possible, and they can have the company of their brothers and sisters.

Home Care for the Family - there are differences in the roles and adjustments families of terminally ill children must make in opting for home care, rather than hospitalization. Children who are placed in the hospital not only become more anxious, but all the lives of the members of their families become more stressful. This is due to a number of factors. Probably foremost is the helpless feeling the family gets in trying to care for the child. Because of the structure and regimentation of hospital care, there is little that the family can do without the permission of someone on the hospital staff. Instead, it is the physicians and nurses who do the caring for the child and shoulder all responsibility for the child’s well being. The parents have no control over the situation, which makes them feel increasingly inadequate and helpless about their situation. The hospitalization of the dying child is not only stressful, but can be very inconvenient for the parents. Often the mother moves somewhere close to the hospital to be more of a comfort to the child, while the father works, maintains the home, and cares for any other siblings. One physician even suggests

50 that food can be made available that will tempt the child; the mother should bring in special dishes, or if the facilities are available, should cook for the child on the ward. All of these suggestions or practices further increase the burden placed on the parents in trying to provide adequate care and attention for their child. Another overlooked consequence of hospitalization of the terminally ill child is its effect on the other siblings in the family. If the child dies in the hospital, the siblings may misinterpret the cause of death. Instead of seeing the hospital as a place where a sick brother or sister went to die; siblings may become confused about the cause of death. They may believe that the hospital, not the disease, killed their sibling.

Hospice Care for the Dying Child The hospice movement in the United States is making the process of dying easier and more humane for both terminally ill patients and their families. By integrating medical care with emotional and psychological care, home care with hospital or inpatient care, and family care with patient care, hospice has evolved into a comprehensive program that attempts to meet the specific needs of the dying in every respect. Regular general hospitals are places one goes to for diagnosis, treatment and cure – to recover from disease, to be rid of various physical ailments. It is natural that children are treated from the point of view of their illnesses; it is a matter of disease first, patient later, for as soon as the disease is done away with, the child is restored to as close to normal as possible and can go on as before. Hospital and medical treatment is primarily geared toward the child’s future - and that is probably how it should be, or must be in our busy impersonal society. But this is the not the case with the dying. Since their future has been definitely limited, it is the present that is important. Since there is no more possibility for cure, emphasis must be placed on comfort and immediate symptom control. Since there is no returning to the past and a normal way of life, privacy must be given to sincere individual attention and making the best of the given situation now. Dying is not a disease – its manifestations are not merely temporary and physical. Instead, dying affects every possible aspect of human existence: it is physical, psychological, emotional, spiritual, and a social process.

Adequate treatment for the terminally ill must deal with the final and ultimate process of dying as a whole and not merely concentrate on one aspect alone. By incorporating multidisciplinary teams of various medical, health care, and social workers, hospices can give a child total care where and when it is needed. The crucial distinction between the contexts, and more important, the needs of the normal hospital patient and the dying child has been appreciated by hospices and acted upon

51 to form methods and programs for better and more comprehensive care for the dying. Hospice care attempts to:  Provide relief from distressing symptoms of the disease.  Provide the security of a caring environment.  Provide sustained expert medical and nursing care.  Provide assurance that children and their families will not be abandoned.

Advances in medical technology and drug therapy have increased our ability to prolong life. Along with this process, it has brought increasingly higher expectations of what healthcare can achieve, even at the very end of life. It seems there is always “something” that can be done – a new treatment, an experimental agent, or perhaps surgery. Patients, family members, and even some health professionals may erroneously view a referral to hospice as “doing nothing” rather than providing another form of care to help the child.

There are, however, significant benefits to hospice for both child and family, benefits they may never be experienced if the referral comes at too late a stage in the illness. You may find that you have to work with physicians to encourage a timely transition and referral, and look simultaneously to the needs of the child and family – who may be unaware of benefits of hospice or afraid to accept this option.

Home care agencies may also be a factor in the equation. They may be reluctant to encourage physicians to refer children to hospice because they may not want to give up the special relationship they have developed with a child and family. Thus, home care agencies may only recommend a referral when they perceive a significant need when they cannot adequately address the situation. Some hospices report that this dynamic result may explain why delays in referral as late as 48 to 72 hours prior to death are occurring.

Children and families may not fully understand the philosophy behind hospice or what palliative care entails. They may want the type of care that hospice provides but are not aware that such services can be delivered in a variety of settings. Financial issues are often a concern, even though Medicare and many private insurers provide some level of coverage. Home Care: Goal – to maintain or to rehabilitate the patient Services are provided through a visiting nurse or home health care agency. Home health offers a variety of services such as nursing, social work, therapies, and home health care aides in the patient’s home. To qualify for payment, Medicare, Medicaid,

52 and most insurance plans require: Skill: a nurse or therapist is required to teach, perform, or coordinate treatment ordered by a physician. Homebound – the patient rarely leaves home and requires assistance to do so. Intermittent services – a few hours of services are provided at intervals.

Palliative Care: Goal – to achieve the best possible quality of life through relief of suffering. The patient may be receiving other curative treatment at the same time. Services are provided through a visiting nurse, other agency, or hospital through an interdisciplinary care team that varies according to a program. This team of experts seek to provide comprehensive care in symptom management and appreciates the extensive demands placed upon the family during a prolonged illness. Patients may stay with a palliative care program to the end of life or transfer to a hospice program when they are no longer seeking a cure. Medicare, Medicaid, and most other insurances do not pay for this as a separate service: patients may access palliative care programs if they meet criteria for home care.

Hospice Care: Goal – to help terminally ill patients and their families cope with the disease, related symptoms and death. Hospice is a type of palliative care. The interdisciplinary care team seeks to manage pain and other symptoms, enabling patients to spend their last days with the best possible quality of life as they define it. To qualify for most hospice programs and insurance coverage, a doctor must certify that a patient is likely to die within 6 months and the patient must forego any curative treatments for their terminal illness.

What should I know about the hospice approach? In order to help someone towards a decent, or even good death, the hospice framework is very helpful. Hospice started as a grassroots effort, as a view of dying that lets go of the possibility of cure. Instead, hospices emphasize symptom control and attention to psychological and spiritual issues. Pathophysiology becomes less important and personal meaning becomes very important. Thus, the framework analyzes a person’s day-to-day care plans for a patient:  Pain – one of the things most feared by patients with life-threatening illness.  Symptom control-including dyspnea, nausea, confusion, delirium, skin problems, and oral care.  Psychological issues – especially depression, sadness, anxiety, fear, loneliness.

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What is Hospice? Hospice is a model care designed to provide comfort and support to patients and their families when a life-limiting illness no longer responds to curative treatment and the patient is expected to live six months or less. The goal is to improve the quality of a patient’s last days by focusing care on pain and symptom management and offering psychological and spiritual comfort as well as bereavement services. Most hospice providers consider a period of four to six months ideal. The hospice concept implies that death is not a terror against which we must fight desperately and at all costs. Rather, death is seen as an inevitable event requiring and deserving significant attention and respect.

Another principle of hospice involves the family, along with the patient, as a single unit of concern to the professional staff. It is assumed that the well being of the patient is most likely achieved in cooperation with the family, friends, or loved ones who are looking after the patient. At the very least, hospice can ensure that those who care will not be shut out of the process or relegated to a role of background hand wringing or helplessness. The family members are seen both as primary caregivers and as needing care and support so that their own stresses and concerns may be addressed.

Hospice represents an alternative mode of care. Discuss what hospice actually is and how this service may help to meet the patient’s needs for pain control and other comfort measures. Arrange for a patient/family conference with the physician to ask them if they would like to explore other services that may have to help the patient live more comfortably. Inform the medical colleagues about the current average length of service in hospice and how a short time frame could determine its value. By being empathetic rather than finding fault, you open the door to better communication. Education is the key when it comes to hospice. Someone who is knowledgeable about hospice can do a good service for physicians, patients, and families during a very difficult time.

Finally, when you step back and look at hospice as a response to a real social need, a sense of justice would require a fair and wise use of this resource. Nurses need to do what they can to ensure that all types of patients have fair access to choices at the end of life, including the option of hospice services.

Hospices Provide the Best Care for the Terminally Ill: The primary goals of a hospice program are comfort and emotional support. The

54 purpose of hospice is to provide support and care for people in the final phase of a terminal disease so that they can live as fully and comfortably as possible. Hospice affirms life and regards dying as a normal process. Hospice neither hastens nor postpones death. Hospice believes that through personalized services and a caring community, patients and families can attain the necessary preparation for a death that is satisfactory to them. Rather, through palliative medicine interventions, patients’ symptoms are kept under control. As a result, they are able to live out their remaining time at home or in a home-like setting. Hospice also provides comfort and support to families, including bereavement services for up to one year after the patient’s death.

The Hospice philosophy follows five main principles:  Dying is a normal part of life.  Control of pain and distressing symptoms is the goal of treatment.  Both patients and their closest companions – family and friends – need care. Care should include support for survivors throughout their bereavement.  An interdisciplinary team, including volunteers, is best able to provide the necessary care.  Society, acting through the medical system, decides when and after what indignities and mutilations he/she shall die.

In the face of death, we feel powerless. This does not have to be. We are not dying to humor doctors by doing it their way or to make the medical community rich! We have begun to take back what is rightfully ours – our life and our death. Once we gave the medical industry responsibility for our deaths, it became an act of personal courage to die at home. Now more and more courageous people are saying, “I do not want to go away to die. I want to die at home.” State and federal governments are financially supporting more home health care. Hospices that help care for our dying has developed. Insurance companies have added home health care benefits to their services. Living Wills that express how we wish to be treated when we are dying are commonplace.

Hospice professionals are dedicated to practicing medicine in a way that gives comfort and a good quality of life for patients who are dying while including the family in the circle of care giving. Hospice is the single most encouraging response to the problems of dying in America today. For many it has already answered a tremendous need. When we can no longer control the circumstances of our lives, we can still choose our attitude about them. We can choose our attitude about dying. We can choose to see it

55 as a tragedy, teacher, adventure, or simply as an experience to be lived. Our attitude will determine the nature of our experience. An optimist and a pessimist see the same world; only through different lenses (attitudes). Pessimism is a waste of time. No one really knows enough to be a pessimist. When we choose to surrender to life, we are free; and when we are free, we are in control. This paradox lies at the heart of our human existence.

As our Western culture emphasized control over nature, death became the controllable enemy. We gave doctors the responsibility for combating this enemy. Death became increasingly a medical “problem” instead of a “natural event”. We gave away the responsibility for death (and life) to experts outside of ourselves – big institutions and big business. Life-sustaining technology said a good death is a hospital death and an unobstructed natural death is euthanasia. And people seem to feel that because we invented machines, we have to use them. So life ends up not to be for the living, but to justify machinery. We have become medical consumers. Today, the man best protected against setting the stage for his/her own dying is the sick person in critical condition.

Death and dying courses are being taught in universities and medical schools across the country. Once again young doctors are recognizing the value of a family practice, personal care and house calls. By taking responsibility for dying, we reclaim responsibility for living and regain the personal power we had given away. One way to take responsibility is to stop playing victim to our culture’s pressure, to go away quietly and die in the sterility of a nursing home or hospital. Who wants to be seen as a forthcoming vacancy! We can die right here in the midst of the people and things we love, the kids, the dog, the garden, or our favorite chair. We are returning to dying at home – the old natural way which most of the world never questioned. We have a right to die with dignity. Dignity in the dictionary means “worthiness”. To me it means doing things in our own way. Dying at home we maintain the ability to choose our own way, whether it is a little decision like what time we eat, or a big one like whether or not to use life-sustaining techniques. We have a right to die with respect – to see and to be seen. At home a person remains an individual, rather than “the patient in Room 204B.” Dying at home, we can influence the quality and quantity of our lives.

A hospice interdisciplinary team offers encouragement, advice, support, assistance and an opportunity to rest. Support is provided by groups of professionals and volunteer comprising what is called an “interdisciplinary team”. These teams include doctors, nurses, social workers, psychiatrists or psychological counselors, physical therapists, music and art therapists, home health aides, clergy members, and volunteers.

56 Children’s hospice care provides much needed services by encouraging the ongoing involvement of family members and health care professionals with the dying child, and implementing practical knowledge of effective and appropriate palliative measures in children with life threatening conditions. The hospice concept of care involves an interdisciplinary team working together to provide appropriate medical, psychological, and spiritual support. Application of the hospice concept can significantly enhance the lives of dying children, their families, and health care providers. When we are dying, we need support, warmth and compassion, surceases from pain, and help with distressing symptoms. Our families and loved ones need understanding, assistance, and a break. The purpose of hospice is to fill those needs. Other members of the interdisciplinary team include a home health aide who helps with the patient’s physicals care, a social worker who provides links to other community resources and a chaplain who offers spiritual guidance. Trained volunteers may also assist with transportation, shopping, and provide respite care.

All these services are covered by Medicare in every state, and by Medicaid in 42 states. Most private insurer, HMO’s and managed care organizations, also reimburse for hospice services. But even when patients have no insurance and cannot afford to pay, many hospices will still provide care using money raised from the community. Insurance carriers can create a psychological barrier, too. Most insurers require patients to waive their rights to traditional medical benefits, including aggressive lifesaving treatments, in exchange for hospice benefits. Many patients just are not ready to do this until well after they have received their prognosis. Unfortunately, the longer they wait to enter hospice, the less benefit they may derive from the hospice program. Since the focus of hospice care is on treating the patient, not the disease, there is no need to justify expenses, as is necessary with regular medical care. For example, if a patient feels that supplemental oxygen would make him more comfortable, hospice does not need to validate the claim by obtaining oxygen saturation levels. Not surprisingly, hospice is less expensive than the acute care typically provided in the last months of life. For every dollar Medicare spends on hospice, it saves $1.52.

A time for sensitivity, supportive guidance viewed from the perspective of ethics, there are clear arguments for encouraging timely and appropriate referrals to hospice care. First, the principle of respect for individuals and their autonomy requires that we honor the right of patients to determine how they want to live and prepare for their death. Some patients with a terminal illness may wish to maximize their lifespan. Others may want to focus on improving the quality of their life. Either way, they will

57 require clear and adequate information about their prognosis and what further curative treatment or palliative care may involve. If a patient is not competent, then family members will need to make informed decisions about how their loved one will live the remainder of his/her life – and they will need this information in a time frame that allows them to take advantage of all that hospice offers.

The fundamental ethical principles of doing well and avoiding harm also encourage timely referral to hospice. When the referral comes late, patients and families have less time to prepare for death. A week, may give barely enough time to make a smooth transition from curative to palliative care.

Consider, too, the broader effects of late referral to hospice. When a patient is admitted a week or less before death, hospice caregivers may have to help families deal with bereavement before they even have a chance to get acquainted. This is not only psychologically exhausting for caregivers, it is financially burdensome for hospices as well.

The referral process starts with a phone call to a hospice provider. Anyone can make this call: a friend, family member, nurse, doctor, or the patient himself/herself. The physician however, has to approve of the hospice care option in order for the patient to receive benefits. A trained professional from hospice will then contact the patient and his/her family to assess the situation and determine the patient’s eligibility.

Once a patient is accepted into a hospice program, care is provided by an interdisciplinary team. This includes an RN specially trained in symptom management and pain control. Because of their background in palliative care, hospice RN’s are not afraid to treat pain aggressively with drugs – as ordered by the MD – so that the patient can focus on living.

Late referrals may also be due to the difficulty of predicting a life expectancy of six months or less. If a physician’s prognosis is too optimistic, then patients and families may not deal realistically with the illness, if it is too pessimistic, they may lose hope and trust in the physician.

The physician has a moral obligation to inform the patient and family members about the anticipated benefits and risks of any proposed interventions in as clear terms as possible. Even though physicians may wish to avoid addressing the prognosis, they are morally bound to do so, based on the duty of respect for individuals and the duty to do

58 well. If a physician sees hospice as “doing nothing” or “giving up on a patient” even the smallest benefit from a treatment will seem more desirable. Hospice can be seen as a threat to some physicians because they think it means they have failed their patients. They will keep putting the patient through unnecessary procedures so they can assure themselves that they have done everything possible. Physicians need to learn the beauty of hospice for those patients who can benefit from such services. When a treatment or procedure offers little hope of benefit and is unduly burdensome to the patient in proportion to the benefit, a patient does not have to undergo it, nor does the physician need to provide it. Burdens can take the form of excessive pain or risks, expense to the patient and family, or psychological suffering.

In order to even begin to consider the possibility of death as an interesting experience, it is necessary to believe that it will not be an experience suffered with pain. Whatever conscious or unexamined fear we may have of death itself, it is compounded by our fear of pain and suffering that we associate with dying. If we were confident that our suffering could be assuaged, it could change the nature of our apprehension. The long-term, chronic, or “terminal” pain that is the result of the deterioration of organs or bodily functions or other conditions that will not improve.

The secret to pain control is giving the right drug, in the right amount, in the right way, and at the right time. This demands a degree of individualization that is hard to maintain in the average medical facility. In addition to pain management, hospice gives priority to the control and management of “distressing” symptoms, such as nausea, vomiting, diarrhea, bleeding, coughing, etc. Much of the physical suffering that comes with terminal illness stems from discomfort secondary to the primary disease, such as muscle spasms, headaches, difficulty with digestion or elimination, or side effects from medications. Because nutritional and digestive problems are often intrinsic to illness, some hospices offer dietary counseling to family members, instructing them on how to keep the patient appropriately nourished. Hospice care includes special attention to the relief of such problems. Comfort is a primary goal. Hospice care does not try to keep you from dying, but it tries to keep you from doing it in terrible pain or in a humiliating condition. The idea is to make dying less horrific in its particulars so that each individual can approach the inevitable as they find it in themselves to do so.

The main barriers that hinder referrals So, hospice care is specialized care that helps support terminally ill patients and their families through the dying process. And it is less costly than regular end-of-life medical care. Then why are not more patients being referred to such programs. One

59 of the biggest obstacles are the lack of understanding about who actually provides hospice care. Many home health care agencies and oncology nurses claim “We do hospice” simply because they work with terminally ill and dying patients. As a result, many patients and families erroneously believe they are already receiving hospice care.

In addition, the assisted suicide debate has muddied the waters. The right to die has become synonymous in some people’s minds with the right to be killed. Some now confuse assisted suicide – the intentional killing of a person – with palliative care. And hospice, by extension, is involved in the confusion.

Hospice eligibility requirements can present obstacles, too. Many programs stipulate that a full-time caregiver must live in the home – a luxury not all patients have. Fortunately, this requirement has changed. Not only are some hospice programs dropping this prerequisite entirely, others are offering patients the chance to stay at a hospital or nursing home located right in their community. Some are even live-ins aides to their rosters so that patients who live alone do not have to leave their homes.

Other eligibility requirements that hinder referrals are not as likely to change. One is that a physician must certify that the patient has a life expectancy of six months or less. As you know, prognosticating is a difficult art, especially since many diseases are not rapidly progressive or predictable.

Not only are physicians reluctant to make a wrong prognosis, they may also be concerned about the emotional impact of a “death sentence” on the patient and his family. What is more success to many doctors, means keeping people alive.

Besides technical, medical, and psychological obstacles to prompt hospice referrals, communication issues limit the number of patients who benefit from hospice. Many physicians, for instance, just are not comfortable talking about death and dying with patients and their family members. Establishing rapport with patients was not as big a part of the curriculum for medical students and residents as clinical elements – indeed, some never learned it at all.

Fortunately, in recent years, medical schools have taken a more holistic approach to training for doctors. But even when physicians are comfortable talking about death, they often do not feel they have or do not make – the time for an in depth meaningful conversation with patients.

60 Lack of communication between family members is also a problem. One study revealed that 78% of family caregivers did not talk with the patient about the possibility of dying let alone about any end of life plans. Many family members think that having these discussions is being “negative” and worry that they will adversely affect the patient.

It is true that some patients prefer not to talk about dying, but most research has shown that open and honest discussion in a positive force, creating a healthy environment for patients and family alike.

While nurses cannot eliminate all the barriers to hospice care, there is much they can do. First, be aware be for situations in which a hospice referral is appropriate but has not been given. Then raise the idea of hospice care with the patient and physician or discharge planner or with the patient him/herself. If the doctor has not yet rendered a prognosis, you will first need to encourage him to do so.

The timing of such discussions with the patient is all important. They may be too upset after hearing the diagnosis to comprehend anything being said, or they may be in denial. Many hospice programs have what is called a “bridge” program, which makes a hospice chaplain, social worker, or counselor available to the patient and family. This can be instrumental in helping patients come to terms with a terminal diagnosis and the future.

When such a program is not available, referring them to counseling may help. Keep in mind, though, that patients and families have the right to practice denial, and it is not our job to force them to confront their mortality.

If the physician is reluctant to talk to the patient about his/her condition and end of life care, offer to be present during this meeting, after the doctor has provided the medical information, you can stay and discuss hospice. With the patient’s permission, try to arrange it so that all of his/her significant others are present at this meeting.

Stress that hospice is not a place where patients go to die, nor is it tantamount to giving up. The purpose is to make the patient’s remaining time as comfortable, full of life, and meaningful as possible. Answer all questions and offer to listen to any concerns – practical, personal, and emotional.

Adopt a no-pressure attitude. As wonderful as it is, hospice is not for everyone, and

61 you need to respect that. One patient stated in an assessment, “I know I am dying, but life is still sweet to me. If aggressive measures can give me a few more days or weeks of life, I just might want those measures”.

Also be sure to tell the patient that he/she has the right to revoke his/her hospice benefit and return to his/her regular health coverage if his/her health improves. Or, if he/she lives past the 6-month prognosis, assure him/her, that he/she will not be kicked out of the program. Before leaving the patient and family alone to talk things over, offer to provide them with the names and contact information of organizations where they can get more information. There is one more thing you can do – even after a patient has left your care – share the good things that hospice does for its patients. Recount with physicians any touching stories you hear from families about their hospice experience. As more doctors know how positive it is, more will be inclined to make referrals.

Nurses, encouraging hospice care when appropriate, should be part of the role as patient advocates. Your intervention can help patients die in a way that many find gentler and more dignified while helping families cope with a very painful time in their lives.

The most common comment on surveys of hospice families is “I wish we had known about hospice sooner”. Family’s memories of the last days of a loved one are vital to their integrity of the rest of their lives.

There are, however, significant benefits to hospice for both patient and family, benefits they may never experience if the referral comes at too late a stage in the illness. You may find that you have to work with physicians to encourage a timely transition and referral, and look simultaneously to the needs of patients and families – who may be unaware of benefits of hospice or afraid to accept this option.

Spiritual or existential issues – including religious or non-religious beliefs about the nature of existence the possibility of some type of afterlife.

Hospice and Human Diversity  Cultural differences about death and its meaning are vast.  When opening ourselves to new, strange, or foreign ways of living and dying, it helps to remember other differences between us. Think carefully of the very different ways various people view the following list of values, concepts and other elements

62  Training ourselves to understand and even appreciate our diversities is more complex than it might appear – we are so much more than just our race, ethnicity, gender, religion, class, or sexual orientation.  This type of thinking also casts aside so many other fundamental variables – many other examples are included – “I am a Mennonite while the family is Methodist”, “I come from a blue collar family while the patient has few financial concerns”, “I am heterosexual and the patient is gay”, “I am a woman and the patient is a man”, “I am an only child with few relatives and my family has an extensive network of relatives and family, and etc.  Many hospice programs choose to handle the topic of cultural diversity in an additive way  The topic of diversity needs to be integrated into every single part of a training curriculum – not merely allocated its three hour block of time  Diversity trainers and participants in their programs need a thorough and substantial understanding of institutional “isms” – we must fully recognize the systemic policies, practices, theologies, and linguistics. Economics and social behaviors that exclude diverse individuals.  When training staff – both paid and volunteer - it helps to expect defensiveness – cultural diversity is a potentially volatile topic. It is ambiguous and confusing, and participants often engage in power battles with each other.

Boundaries  Set boundaries – observe the suffering and remain compassionate, but do not immerse yourself.  Avoid thinking you can solve other people’s problems.  Be on the lookout for client/family dependency on you.  Learn to say “No”.  Be aware of your own “unfinished business” …the things you think and feel about dying, and why. Your own experience with death and dying could negatively affect your work with the family if you are not careful.  Remember that unfinished business goes beyond one’s perspective on dying.

63  Avoid becoming the family’s therapist – are you becoming pulled in, in ways you feel uncomfortable? Tactfully tell them so.  Try not to turn your own family and friends into your therapists. I know I am exceeding my boundaries when: 1. I lose objectivity…. I become resentful toward a family member (even if do not openly express it. 2. My stress level increases… I feel emotionally on edge with my own family and Friends. 3. I find myself thinking about the patient/loved ones too frequently. 4. I feel like I want to take over. 5. I feel like the patient is my responsibility.

Family Systems The most important people in a person’s life are also that person’s biggest frustrations – we are often hardest on those that love us most…we trust them not to abandon us, even if we are not always polite or nice. It is true that opposites attract. Continue to learn about family systems and interpersonal communications. Accept the family wherever they are in dealing with this experience…which will change day to day, from fighting it, to accepting it, and everything in between. Fortunately and unfortunately, individual family members are rarely at one level for very long. Each family member brings an unique perspective and plateau to this experience. Watch out for triangle traps. Do not get hooked between spouses, siblings, parents, and children, etc. People have problems above and beyond their illness. Kids continue to have trouble at school, cars still break down – the little day to day irritations of life do not stop when a person has an incurable illness. Instead, they compound the pressure. Families also have major problems…such as financial troubles, chemical dependency, and damaged relationships. The functional problems that existed in a family prior to an illness are still there… and may even be exacerbated. Do not think these problems can be solved. Deathbed reconciliation’s do occur, but try to leave romantic illusions at the theater. Families have distinct rules – even though they probably have not been discussed or formulized – about which feelings/ideas can be expressed. You can tell which things are okay to express by watching various family members as they interact with one another. Families have distinct communication styles:  Just because a family is very loud and argumentative does not mean they are unhappy and or ready to separate.  Just because a family is very reserved and unaffectionate does not mean they are uncaring or are “stuffing their feelings”.

64  Our own family history alters our perceptions of the families we work with. Again, we must be wary of our own unfinished business. A major comfort the hospice worker provides for a family is the consistency he or she offers to them in the time of great upheaval. Take care to support family routines, rules, and roles.  Avoid interrupting family patterns (even if you disagree with them).

Living the Family Control  When a family joins hospice, they are bombarded with new names and relationships.  Give each and every family member maximum information, and do not be disgruntled or discouraged when you find your information has to be repeated or clarified.  Encourage the family in its efforts to educate itself about the illness and the dying process. Try to be a resource person.  Encourage the family to make as many decisions as possible.  When the family is stuck on a problem, first teach them brainstorming techniques, help them learn how to prioritize, then step back and allow them to make a decision.  Encourage the family to try something new for a brief time.  Give family members active and direct permission about losing control emotionally. “It’s OK to cry”.  Learn stress management techniques and when appropriate teach them.  People often feel more powerful and in control when they are actively doing something.  Helping people open up to you.  Believe what your patient/client and family members tell you…about pain management, coping mechanisms, and etc.  The hospice worker can become a vital companion – major emotional complaints are isolation and boredom.  Do not say, “I know how you feel”. This is not empathy. It is merely presumptuous.  Watch out for the trap, “What would you do?” “Well, for me it was like this, but I know every family is different”. “What is going on in your situation?”  Avoid overdoing descriptions of your own experience.  Respect the family’s wishes to use euphemisms – calling lung cancer “my problem”.  Be comfortable and initiator.

65  Avoid feeling frustrated or impatient with the same old conversations about the weather, sports, and etc.  When initiating “difficult topics”, the two rules are: 1. Ask permission to talk about the topic. 2. Give the person an “out” at your own expense, rather than his or hers.  Use specific and direct initiation questions.  Do not be too shy to ask scary questions.  A good way to help the patient talk is to ask about prized possessions, collections, evidence of hobbies, and etc.  Asking to look at photo albums is another good way.  Sharing stories is a wonderful tool for gaining trust.  Ask for stories.  Talking is no measure of intimacy – the closest and most comfortable relationships are ones where we can be together in total silence.  The patient expends less energy in here and now conversations and interpersonal relationships.  This sleeping and turning inward can be especially difficult for loved ones.  The patient may use symbolic language – caretakers may say he/she’s rambling.  This incoherent, mind-wandering talk is packed with information, if we listen carefully. The patient may be using metaphors and other symbolic language to communicate two major things: first, what it feels like to die and second, what he/she needs to make a peaceful exit.  Listen metaphorically and symbolically.  The patient and caretakers do not need to be entertained or distracted.  It can be really depressing to be with someone who insists on “cheering you up”. It takes so much effort to be happy for someone, when really we would rather wallow for a while.  Remember that some feelings are more socially acceptable than others. Feeling anger is more acceptable than feeling fear in our society. Thus, some expressed feelings could be surface ones, masking the real emotions. Someone who seems very angry could even be more scared and sad. Some people view their world more logically, others more emotionally.  Occasionally, it can be helpful to gently break out of the “head” or “heart” mode. If someone typically expresses what he/she thinks, ask also how he/she feels. When someone expresses feelings, ask also for his/her thoughts.  Sometimes, the very words, thoughts and feelings can be threatening. If you decide not to be so direct, use a more neutral question: “What was your response to that?” or “How did you react then?” Many patients will confide in a

66  At the end of the dying process, many patients have dreams, visions of loved ones who have died, and feelings that they will die soon. Often, patients are afraid to tell their families and friends about these profound experiences because “It will frighten them, they will think I am hallucinating, or they will put me in a nursing home.” Hospice workers are often rewarded with hearing these stories.  It is essential for the hospice worker to become a supportive ethical confidant. Build trust and acceptance, and know when to keep a secret.

Listening, Feedback, and Managing Conversations  Listening is the single most important thing we do.  Listen with all five senses.  Listen for literal information, but also listen figuratively.  Labels we give to other people get in the way of our listening to them.  Few labels are more emotionally charged than this one: “Dying Person” by the time you meet them, this label has already altered or eliminated many of the family’s former friendships.  Loaded language will also get in the way of open listening.  Watch out for “naughty” words – they evoke defensiveness – you/your, always, never, why, should.  Avoid changing the subject – let the other person do that.  Listening occurs at five different levels, each requiring greater energy and involvement. It is like walking up steps: the higher you climb, the greater your energy and involvement: hearing, understanding, retaining and information, analyzing and evaluating information, helping others/active empathizing.  Most hospice workers will be required to listen at the top level, using active empathy and sometimes seen as counseling skills. This is hard work!  Top-level listening is a lot of work, because you have to hold your opinions. At this level, you are restricted to using only non evaluative feedback techniques.  Nonevaluative feedback means holding back your negative judgments. It also means holding back your favorable opinions.  Feedback does more than respond….it actually changes the messages to follow.  It is important to note that nonevaluative feedback requires more energy and much more time.

67  The quickest way to stop a conversation is to provide advice, opinions, and evaluations.  Seven methods for giving nonevaluative feedback: 1. Minimal encouragers – soft murmurs – Uh hm to acknowledge what is said. 2. Probing – ask for more information. 3. Acknowledging – comment on the behavior of the other in a neutral manner. 4. Checking out – repeat, clarify, reflect, and paraphrase. 5. Paraphrasing – use different words than the ones the speaker chose, and restate what you heard. 6. Repetition – Use the same words the speaker chose and repeat verbatim what you heard. 7. Summarizing – a combination of all the techniques except probing, in which you pull together the main ideas you, heard in a concise paragraph or two.  Three rules for giving nonevaluative feedback: 1. It is very tiring – it is hard to hold back our opinions, requires tremendous self-discipline and a lot of time. 2. Sometimes we evaluate, even when we do not intend to. 3. The person receiving the feedback will feel validated, and will often believe you agree with what you are hearing.  Acceptance is not agreement.  Monitor the airtime.  Keeping our responses judgment-free requires tremendous attention and self- discipline.  Accept the fact that sometimes you will not have the energy to climb the stairs to top-level listening – when you postpone an important conversation, set a specific time to hold it at a later date: 1. “Uptones” and “Downtones” are a vocalization technique that can reduce defensiveness and manage conversational flow. An uptone sounds tentative, approachable, and inviting. A downtone sounds decisive, powerful, and conclusive. a. Use uptones when you want to: encourage someone to keep talking, soften the blow of bad news, or make a statement sound like a question. b. Use downtones when you want to: conclude a question, predetermine the response to a specific question, or make a question sound like a statement. 2. Another time management technique is choosing close-ended or open-ended questions – a close-ended question elicits yes or no or other short answers, and does not foster further communication; an open-ended question has no predetermined response and allows the respondent to elaborate.

68 a. Use open-ended questions when you want to - encourage the client/loved one to talk, get more information and insight from the client/loved one, and help the family explore values, problems, problems, possible solutions. b. Use close-ended questions when: you want to obtain concise, specific information from the client, you want to get the client back on track, conversationally, you want to begin the ritual of ending the visit/conversation, you sense yourself and/or the client beginning to tire. 3. Hospice workers avoid giving advice, refrain from judging reactions or decisions. And let patients and loved ones work through the process of dying for themselves. 4. Hospice workers learn to become comfortable with awkward pauses and long periods of quiet…this is especially true toward the end, when the patient turns inward and rests a lot, in preparation for the final departure. 5. Strive to understand, rather than to be understood. 6. Your biggest gift is frequently your silence.

Nonverbal Techniques  Pay careful attention to the environment – special furniture, traffic patterns, privacy issues, and etc. Place the family in the context of their surroundings…you can gain a lot of information by observing and respecting how they use their belongings to define themselves.  How we use and define time is a nonverbal element – the glance at your watch during a conversation.  Time is power. The person who controls the clock has more power – the parent over the child, the Doctor over the sick child.  Dying people and their loved ones have lost control of the clock – one moment, they lived with the idea that their future was more or less infinite…the next moment, they came home from the doctor with parameters. This can make people feel powerless.  Persons who are not primary caregivers may unintentionally abuse the family’s time. Such people often want to spend time with the patient for their own purposes; they may not realize that the dying person has little energy for interpersonal relationships, especially as death approaches. Hospice workers can help educate the family to set limits, and they can spread the word that a ten- minute visit might be long enough.

69  We help the family when we allow them to decide how they spend their time – being flexible to changing plans, not taking it personally when people prefer not to interact with us.  Touch the client often and appropriately…with permission. People with incurable illnesses are not touched as frequently as they were before; we are nervous about hurting them, or worse, disease can carry a stigma. Brush the client’s hair, massage his/her hands, hug him/her, and stroke his/her arm.  Touch is cultural…some cultures are huggers; while others prefer to keep their distance. Be sensitive; avoid overwhelming the family with your affections.  Be aware of the potential power trip in touching someone. In any relationship, the person with more power touches the other person more often. Teachers pat their students’ shoulders with familiarity – the student would never be so disrespectful as to return the gesture. Hospice workers can overdo a good thing if their touching becomes intrusive.  Eye contact can also be too much of a good thing. Eye contact is culturally determined; some cultures view it as a sign of disrespect. Just about everybody needs some private time when face to face in conversation. Look away occasionally as the person gathers his/her thoughts or deals with a complex emotion.  Height is power. Get your head lower than the patient’s. Use a short stool; sit on the floor beside the couch, lean forward in your chair. Position your face so that you are looking up at your patient rather than down on him/her. Nurses, though much of their work is performed above the patient, can still find sixty seconds or so to crouch by the bed for some gentle conversation.  Your chin is the most powerful part of your body. When your chin is in the air, you are looking down your nose at someone. You appear superior, condescending, or confrontational. To give the family more power, ever so slightly drop the chin to your chest in each interaction.  People who take up a lot of space are more powerful – big gestures, wide movements, and arms akimbo (with hands on hips and elbows boxed outward) or on hips. You will empower the family if you tone down your gestures and keep your arms closer to your sides.  A pen is a power symbol, a reflection back to those days when our parents shook their fingers at us. Any sort of pointer operates as a symbol of authority.  The voice determines power – your tone, rate, volume, vocal variety, diction – all can intimidate or invite. A tentative, softer tone can be more calming than strong tones with a lot of vocal variety. However, if you sound sickening sweet with a confrontational style, you will drive them crazy.

70  Mirror the other person. Match his/her voice, posture, and gestures. Adapt to his/her nonverbal style and preferences to create extra empathy and trust.  Learn how to read deceit…and yes, the eyes do lie. We are very adept at masking our eyes and facial expressions to pretend that everything is just fine. We are not so adept at remembering to control other parts of our body. We might jiggle our feet or curl our toes; we might pull on our nose or cover our mouth when telling a falsehood.  If a person’s vocal message contradicts his/her nonverbal behavior, we believe the nonverbal portion. The caretaker looks down and sighs as he/she tells you that his/her career is not suffering.  How we touch ourselves is a good clue to our real inner state. Self-touches are “out of awareness”…we do not really realize that we are doing it, and therefore observing these touches can be very helpful for finding the person behind the mask. There are three main types: 1. Soothing self-touch: when I stroke my arm or hands, hug myself, or touch myself in other comforting ways when I talk – used when I want to calm myself, tell myself that things will be all right. 2. Stimulating Self-touch: when I touch myself in more erotic but not taboo places, stroking my own neck, thigh, or lips as I speak – used when I feel alert, happy, involved in the conversation. 3. Punishing self-touch: if exaggerated this self-touch, it would inflict pain, pinch ones own arm or bite ones thumb, slap ones hands together or chew ones lip – are used when feeling guilty or remorseful about something, often used when hiding the truth.

 Read these self-touches and adapt to them – back off or perhaps gently probe – you be the judge – when you see soothing or punishing behaviors. Avoid changing things when you see stimulating self touches; they are an indication that you are on the right conversational track.  Do recognize that these self-touches might not be relevant to the actual conversation you are having.  Jumping to conclusions is dangerous in any event. While nonverbal behavior does account for 65-95% of the entire message, it is highly subjective, culturally determined… and easy to misread. When assessing a person’s motivations or unspoken thoughts/feelings, look for corroborating evidence. Use more than one nonverbal cue and listen to vocal messages when drawing conclusions.

Managing Defensiveness and Conflict

71  Remind yourself and your clients that venting and anger are normal.  Managing conflict takes energy. One has to control emotions, listen well, and weigh words carefully. The higher you climb toward resolution, the greater your effort.  Managing conflict is complicated by the fact that different family members are at different levels of resolution.  There is a cost-reward ratio in choosing any communication behavior, but particularly in managing conflict. The rewards have to outweigh the costs, or the confrontation (behavior) will not occur.

Behavior= Reward Cost Some conflicts are just not worth arguing about. With others, it seems essential to lay the cards on the table. It would be easier if everyone agreed on the relative rewards and costs of having a given argument.

Before we can have a healthy confrontation, we first have to agree that engaging in the discussion will be worth it. 1. Fifty percent of all people adopt a flight style when dealing with conflict. Fifty percent of all people adopt a fight style:

Flight Easy going people who do not wish to hurt others, sometimes failing to be totally honest.

versus

Fight Forthright people who express emotion freely, sometimes without tact or discretion.

2. People in primary relationships often have different preferences – theirs is a complementary fight-flight relationship. There are periods of calm and storm – they fight about whether or not they should fight. 3. Sometimes two fighters are in a primary relationship. Theirs is a loud, confrontational method of conflict management. They are energized by argument and they fight about everything. 4. Sometimes both parties are flight-takers. Their relationship appears calm but under the surface, unspoken conflict still exits. They silently wonder if they should fight.

72 5. Fighters accuse flight-takers of “stuffing feelings” Flight-takers accuse fighters of making “mountains out of molehills” Neither method is better – they are just different. 6. Any time a person has a conflict, he/she has a 50% chance of dealing with another person who shares his/her preference for fight or flight. 7. People in conflict will inevitably behave defensively. 8. There is no need to apologize for feeling defensive. Any time we are scared or anxious, we defend and protect ourselves. Defensiveness is normal, and sometimes even helpful. 9. Would you take away the crutches from a person who has a broken leg? Similarity, do not try to “get rid” of a person’s defensiveness. We need our defense mechanisms at least at the moment of anxiety/fear/anger. Instead, be patient. 10. Rather than denying a person’s right to be defensive, learn to recognize specific defense mechanisms. This will help you to avoid intensifying them: a. The Rationalizer – finding reasons to justify an unhappy turn of events. “It is actually okay that my father is dying… he is old enough to have had a full and happy life.” Response: Do not discount the explanation/logic of the person, regardless how “crazy” or preposterous. “It is okay that your father is dying?! OH, come on now!” This will only make the person “explain” even more. Instead, just listen, nod…and be sure not to smile, which he/she would certainly find patronizing. b. The Ostrich – totally suppressing any feelings of defeat/conflict. Danger lies in the fact that repressed feelings explodes eventually. “Tina always seemed to be so cheerful and bright, until I found her sobbing hysterically in front of the TV last night. The sound was not even turned on. I was really scared…she was the one who was keeping me in control.” Response: Do not try to force the person to talk about it. “Tina, you are in denial – it is so obvious. You will feel so much better if you just talk about this.” No, she won’t…and if you confront her with this directly, she will squirm and probably wish she could run from the room. If you feel you must get her to open up, try to ask very neutral nonthreathening questions. “So, what kind of a day have you had today?” c. The Finger-Pointer: Blaming someone else to explain our own fears/failures. “How can I be expected to put together a decent meal

73 for everyone when I have to spend half the afternoon chasing after your father’s prescription?” Response: Do not try to get the person to accept blame. “Come on now, no one is looking for a gourmet meal and besides, the pharmacy is only ten minutes away”. This will only make the person deny responsibility even more vehemently. Instead say, “It is not really important how this happened…let’s just solve the problem. How about if we order a pizza?” The Compensator: “Treating” yourself when things are difficult, threatening, etc. – a basis for serious problems like obesity and chemical dependency. “The only way I can get through my evening visit to the hospital is to pop over to the mall afterwards. I have bought three pairs of shoes this month”. Response: Do not call attention to the treats. This will not eliminate them; it will only cause the person to hide them. Obviously, in severe cases such as bingeing, bankruptcy, or alcoholism, intervention is sometimes necessary. d. The Protester: Publicly taking a position that is the opposite of what you privately feel, because you think your private thoughts are wrong or taboo. “Why should anyone be afraid of dying? We have always believed that God has a better future in store for us!” Response: Like the Rationalizer, this person will only become more defensive if you point out inconsistencies and illogical statements. Avoid arguing and do not focus on what was said; let the statements slide. e. The Reactor: Taking out anger or frustrations on something unrelated to the conflict – hopefully an inanimate object, but not always. “Boy, Rita was really slamming the dishes around last night!” Response: Do not tell the person to calm down. This will only infuriate her even more. Instead, get out of the way. Later, calmly acknowledge apologies and try not to make the person feel any guiltier about damage that was done. Allow her some private time to clean up, repair, and replace. Obviously, in severe cases of physical/verbal abuse, intervention is in order. f. The Passive-Aggressor: Acting as if nothing is wrong, but secretly planning on revenge, often to be carried out later. “Paul has been so charming, even funny lately. Then last night he told me he would not be coming by once a week anymore. I wanted to talk to him about it, but he kept denying anything was wrong.” Response: This is one of the more slippery mechanisms because often the aggression will not occur until days, weeks, or even months after the

74 triggering event, so it is hard to see a connection. It is best to try to find the connection yourself…then directly address the aggression and mention a possible triggering event. “It seems like our relationship has changed. Does this has anything to do with that remark I made about your sister?” Unfortunately, you will not always receive a truthful answer, so you might remain confused. But sometimes just acknowledging the aggression or triggering event is enough to make the behavior stop.

Do not immediately argue with a defensive person. Contradicting him/her will make him/her even more defensive. Instead use nonevaluative feedback techniques. The best way to manage defensiveness is to expect it, acknowledge it, and avoid intensifying it.

Team Management  Hospice is unlike many other industries in that it operates on principles of collaboration rather than competition. We try to pool resources throughout our communities, rather than duplicating services. We draw together specialized experts and work in teams, each member bringing a unique perspective to the families we serve.  This approach is the beauty of hospice. It is also the cause of major frustration because these very different people have meetings at which they must effectively share information, determine common goals, mutually decide things, and sometimes defer to the judgments of others.  The team meeting is an event found behind the scenes of nearly every hospice  Every team has a personality above and beyond the personalities of its various members.  It helps to think about the attributes of our own work group.  Every group has rules and roles. Sometimes these group norms are formalized, sometimes they are not.  Most groups have deviants. Deviants are people who do not abide by a rule or role – and sometimes more than one rule or role. The greater the number of violations of the norms, the greater the deviancy.  Sometimes, we do not follow a rule because we do not realize it exists until after we have broken it.  Sometimes a deviant breaks a rule or role in open defiance.  On the helpful side, the deviant might actually turn out to be a change agent…the entire organization changes for the better.

75  But just as often, deviant behavior can splinter the team.  When a team member operates in a deviant manner, other members typically go through an indirect process of trying to eliminate the behavior – try to ignore the behavior, try to handle the behavior, open ridicule and sarcasm take over, and finally the group ostracizes the deviant.  Cohesive groups have a healthy balance of task and social orientation.  Leadership is earned, not assigned.  All leaders have their perfections, all have their flaw.  Many people mistakenly assume that a happy team is one that has no conflict. This is not true. A truly cohesive group is one that has experience with conflict. The team has weathered some internal storms – and they are still together.  Have participants determine the format of the agenda as well as its items and priorities, use the same format each time, share the emcee duties, be open to spontaneous agenda changes, begin and end on time, continue the meeting even when someone important is pulled away, begin meetings with a five minute cohesiveness ritual (sharing), encourage creativity, work – like talk – expands to fill the allotted time, save the most difficult topics for last, expect unfinished business, effective team members are aware that all members compromise, we are most motivated to do well when we feel invested in the decisions that affect us. The effective team gives every member maximum control. Effective teams are stable but fluid, work-focused while playful, easy-going though opinionated and treasured for their maverick originality, tempered by their willingness to blend in when necessary.

The Hospice Volunteer  The best place to find volunteers are local religious organizations and post bereavement groups.  Most hospices prefer volunteers who have experienced the loss of loved ones but wisely will not accept those with recent grief experience.  A hospice volunteer works within important constraints and boundaries – legal, ethical, and otherwise – he/she needs to support the hospice program’s case management decision without always fully understanding them – he/she does not have access to the patient’s medical chart, nor an in-depth perspective regarding state and federal regulatory issues. The good volunteer needs to be supportive and available to the family without getting caught up in their family system. He/she needs to be approachable, yet able to stand out of the way. It is extremely helpful if he/she is skilled at minding his/her own business.

76  A hospice volunteer will undoubtedly encounter moments when he/she feels ill equipped to do the job. He/she needs to remember that he/she can call the service 24 hours a day for advice.  This lack of expertise is also a major advantage, as a volunteer may discover within the first few weeks of this work. The typical hospice volunteer empowers the family far more than the paid staff – because the volunteer is the only team member who knows less than the family members do. This helps families bond with the volunteer in a way they cannot with those expert nurses. It is much easier for a volunteer to turn over control to the family.  Volunteers see families turn into two different people – volunteer vs. paid staff in the home. When the nurse is there, family is the student and nurses are the teachers. When the volunteer is there, families become the teacher, have power and authority, self-confidently educating about their illness and symptom management. Families are much stronger and much more powerful than they appear. Volunteers have no agenda.

The Visit  Call the family before your visit to confirm – this builds trust and spares inconvenience.  Also provides an additional opportunity to talk with patients and primary caregivers  Bring something to do.  Things to bring in your hospice bag – book, magazine, stationery and pen, gloves, lotion, handiwork, snack, journal, playing cards, tissues, emergency information.  Things to do on a visit – manicure, apply makeup, write letters for the patient, read to the patient, massage, tidy the bathroom or kitchen, walk the dog, do grocery shopping, pharmacy pickup, run errands, provide transportation to appointments, chum with the patient – cards, lunch, talk, country drives looking at old photographs, sharing hobbies, and etc.

Taking Care of Yourself  Pat yourself on the back for communicating at the very highest level possible  Engage in stress-release activities.  Hospice workers need respite too – let someone know if you need time and distance.  Avoid judging or second-guessing your own reactions when patients die – crying profusely is not necessarily over involvement, feelings of numbness does not mean that you are uncaring or burnt out.  Do not permit your own family and friends to put you on a pedestal because you are a hospice caregiver.

77  Do not worry about making mistakes.  Avoid feeling anxious even if it seems you are doing nothing.  Many times, it may seem as if you do not make a difference. But you do.

To generalize, one could state that a child has not yet reached the levels of emotional, psychological and intellectual maturity that are expected in most normal adults. Children’s actual levels of development between the ages of birth and eighteen years will vary much more drastically than adults’ levels between the ages of eighteen and ninety. Thus, children are less in control of their own situations in the world (the amount of control increasing with age) and are to varying degrees, dependent on a parental or other adult figure. For the most part children are much more egocentric than adults, demanding and needing much more individual attention. Children have not learned how to control the world around them as adults have, nor have they learned to conceptualize and objectify themselves and their situation. Again, these factors very drastically with age and state of development. One must keep in mind that growth, change, and development are the very essence of childhood, and it is for this reason that it is much more complex than adulthood. Although the distinctions pointed out above between child and adult are simplistic indeed, even these play a significant role in determining the different relationships child and adult will have with impending death and the different methods and care needed to deal with each.

In the past, children were practically never actively involved in their own treatment. The past few years have shown a tremendous change in understanding the attitude of dying children and have consequently altered the whole approach to the terminally ill child. We can now communicate with children in symbolic verbal and/or nonverbal language, which makes it possible for children to reveal their inner knowledge to the adults around them. The therapist or counselor acts as a catalyst and translator for the parents, facilitating communication between parent and child. In most cases, when all medical means have been used and all medical-scientific resources have been depleted; the children ask to be allowed to go home.

Children and their families’ needs differ from those of adults in several aspects, and a comprehensive program like that of a hospice could help fulfill those specific needs. First, children are not expected to take part (again, depending on age and maturity) in the decision making process of their own terminal care. It is usually the family of the child who takes the responsibility of decision making. Although the consequences will affect the child, thus a hospice’s customary practice of regarding the patient and the family as a single unit of care would especially be beneficial in caring for the dying child.

78 Since terminal illness in children is less frequent and seems more “unjust” than terminal illness in adults, families of young patients have even more difficulties in dealing with and accepting the situation. There are few human experiences so shattering as a child’s death. Therefore, the family would need trained emotional and psychological advice during, and most important, after the course of terminal illness.

Another important point about children is that their reactions to their own impending death understandably vary greatly. The difference between the reactions and the needs of two children of different ages or even the same age can be as great as that between child and adult. Therefore, an effective care program would require staff trained to deal with children not only on the medical level, but on psychological and emotional levels also. Because most children (depending on age and maturity) usually cannot be directly confronted with the fact of their own death, it is even more important that their daily lives retain as many aspects of their previous normal lives as possible. This, too, may put a greater burden on the parents, who may often feel the need to pretend that everything is all right with their child. Since the child is so dependent (depending on age) on the family and because of the need for a semblance of normalcy, it seems that, whenever possible, terminal care should take care place in the home. Something like the hospice home care programs, with the addition of specially trained staff to meet the psychological and emotional needs of the children’s terminal care. It is only in exceptional circumstances that home care is not sufficient at the end of a child’s life.

Inpatient hospice units can better serve those families with inadequate environments for home care, such as those with small, crowded quarters, those with many small children who also need care, those without an adult who could care for the dying child, or families with battered children. These relatively rare cases will require a hospice inpatient unit. These units are small set-ups and do not require separate buildings or administrations, which would make them economically unfeasible. The crucial and inherent bond between child and parent and the deep anxiety evoked in an adult by the dying child are two major factors that indicate the dire necessity to incorporate care for the family into the care given to the child. The dying child often awakens one of man’s deepest fears – death before fulfillment. The experience of a child’s terminal illness probably causes more psychological and emotional problems in the family that is aware of the situation without being able to share it with the child (again, this depends on the age and maturity of the child). The special needs of siblings of dying children must also be taken into consideration. They are often left out, while the dying child is spoiled with material things. Needless to say, these siblings grow extremely resentful,

79 bitter, and jealous of the terminally ill child, though they would not change places. This kind of behavior is frequently observed and can be prevented by an understanding counselor who encourages the parents not to overreact to their terminally ill child. Large quantities of material things, which the terminally ill child neither needs nor really appreciates, do not relieve the parents of their sense of impotence.

Physicians should be consciously aware of the common modes of adjustment used by parents, for only in this way will they be able to anticipate their needs, problems, and sources of anxiety. They should be able to give the parents emotional and psychological guidance and recognize the diverse forms of “coping behavior” that parents often manifest through denial. It is very important that doctors demonstrate their willingness to answer all the parents’ questions, that they clearly discuss the disease with the parents, and that they explain the various possible courses the illness could take.

The parents’ participation in the child’s care may also need to be guided; they may wish to stay with the child night and day in the hospital, or they may be reluctant to acknowledge how the child’s feeling (denial). Parents will naturally impose their own fears or preconceptions of death on the child, and physicians should be aware of this while helping them do the most and best they can. They should also help parents understand that it is common for such children to be angry that their parents cannot get rid of the pain and make them well. Finally, the relationship between the doctor and family should be a continuous one and not come to an end with the death of the child; the physician can be of great help to parent’s months after the death of the child by going over issues or answering other related questions.

The careful attention devoted to the family of the patient is similar to regular hospice procedures in caring for the terminally ill. Again, it seems that a hospice care program would be better equipped and coordinated to fulfill the needs of a dying child’s family than the over-burdened physician, who cannot be expected to be adequately trained in giving the psychological, and emotional care and advice that is of utmost importance, or to go into the home and guide the family’s treatment of the child. Where one or two physicians alone cannot be expected to give comprehensive care and guidance to both patient and family in and out of the home, a hospice program – could and does – for children and adults. With few additions to the existing adult terminal care programs, hospices have been able to guarantee to uphold the standards of care for dying children and their families. Maintenance of the family as a cohesive, supportive unit, provision for the relief of loneliness and separation anxiety, and symptom controls for the

80 maximum comfort and alertness for the dying child are the key objectives for an inpatient or home care hospice program.

Currently, many barriers prevent the provision of effective care for children who are dying. Health care professionals often receive inadequate training in the management of the symptoms of suffering. Spiritual needs are often overlooked and many health care professionals avoid open discussions of death with children and their families. There is also a prevalent attitude that discontinuing aggressive care and shifting the focus to palliative care means the caregivers and families are “giving up”. Another barrier to pediatric palliative care is that the federal Medicare model was used to create most state Medicaid hospice benefits as well as many private insurance benefits. The Medicare model restricts hospice admission to patients with a life expectancy of 6 months or less. Since it is difficult to predict life expectancy for children with life threatening illnesses, this stipulation may restrict the availability of hospice programs for children. Since hospice programs require that families agree to forego life prolonging or curative treatments, even the requirement for a “do not resuscitate” order is difficult for many families of children who are terminally ill. Recognizing these barriers is an important step in providing the care of children at the end of life.

The American Academy of Pediatrics has identified minimum standards for pediatric palliative care. These include: easy transition between health care settings, including one consistent caregiver, availability of palliative care at all times, and the availability of an interdisciplinary team to address the physical, psychosocial, emotional, and spiritual needs of the child and family.

The six recommendations of the American Academy of Pediatrics for palliative care of children and their families include the following: 1. Palliative care and respite programs need to be developed and widely available to provide intensive symptom management and promote the welfare of children living with life- threatening or terminal conditions. 2. At diagnosis of a life-threatening or terminal condition, it is important to offer an integrated mode of palliative care that continues throughout the course of illness, regardless of the outcome. 3. Changes in the regulation and reimbursement of palliative care and hospice services are necessary to improve access for children and families in need of these services. Modifications in current regulations should include: a. Broader eligibility criteria concerning the length of expected survival b. The allowance of concurrent life prolonging and palliative care

81 c. The provision of respite care and other therapies beyond those allowed by a narrow definition of “medically indicated”. Adequate reimbursement should accompany these regulatory changes. 4. All general and subspeciality pediatricians, family pediatricians, pain specialists, and pediatric surgeons need to become familiar and comfortable with the provision of palliative care for children. 5. An increase in support for research into effective pediatric palliative care programming, regulation and reimbursement, pain and symptom management, and grief and bereavement counseling is necessary. The pharmaceutical industry must provide labeling information about symptom relieving medications in the pediatric population and provide suitable formulations for use by children. 6. The practice of physician-assisted suicide or euthanasia for children should not be supported.

Nurses need to take an active role in promoting a well-designed palliative care programs for children with life-threatening illnesses and their families. The recent American Academy of Pediatrics statement on palliative care provides guidelines for the health care team to use when caring for children who are dying.

In modern society, we expect children to outlive their parents. Palliative care seeks to enhance quality of life in the face of an ultimately terminal condition. Palliative treatment focuses on the relief of symptoms and conditions that cause distress and detract from the child’s enjoyment of life. It also seeks to ensure that bereaved families are able to remain functional and intact. The goal of palliative care is the achievement of the best quality of life for patients and their families, consistent with their values, regardless of the location of the parent. Specific strategies for palliative management of pain, dyspnea, agitation, nausea, vomiting, seizures, depression, anxiety, grief, and other symptoms, can be found in other sources. The American Academy of Pediatrics calls for the development of clinical policies and minimum standards that promote the welfare of infants and children living with life- threatening or terminal conditions and their families, with the goal of providing equitable support for curative, life-prolonging, and palliative care. The following principles serve as a foundation for an integrated model of palliative care: 1. Respect for the dignity of patients and families – includes sensitivity to and respect for the child and family’s wishes. In consultation with the child’s parent and guardian, the plan of care incorporates respect for the terminally ill child’s preferences concerning testing, monitoring, and treatment. Consistent with the principle of respect, information about palliative care should be readily available

82 2. Access to competent and compassionate palliative care – in addition to alleviating pain and other physical symptoms, physicians must provide access to therapies that are likely to improve the quality of life. Such therapies may include education, grief and family counseling, peer support, music therapy, child’s life intervention, or spiritual support for both the patient and siblings, and appropriate respite care. Respite care, the provision of care to an ill child (in his or her usual state of health) by qualified caregivers other than family members, allows the family time to rest and renew, whether for hours or days, on a schedule, or intermittently as needed. Families may benefit from the provision of respite care throughout a child’s illness, not only near the end. Appropriate pediatric respite care is often lacking, but is considered by many families to be essential for their continued integrity and ability to care for the ill child, siblings, and themselves. Ideally, the patient’s pediatrician, family physician, pediatric subspecialist, or surgeon will offer to continue to care for the child, while making a timely referral to palliative or hospice care. The palliative care program should assist the child’s usual medical caregivers in maintaining an ongoing role in the child’s care. 3. Support for the caregivers – health care professionals must be supported by the palliative care team, their colleagues, and institutions in dealing with the child’s dying process and death. Institutional support may include paid funeral leave, routine counseling, with a trained peer or psychologist, and regularly scheduled remembrance ceremonies or other interventions such as inviting bereaved families to return and celebrate with staff the deceased child’s life. 4. Improved professional and social support for pediatric palliative care – regulatory, financial, and educational barriers often bar families from access to pediatric palliative care services. Professional and public education may foster awareness of the need for and value of, pediatric palliative care and lead to efforts to remove bureaucratic and economic obstacles to its availability.

An integrated model of palliative and curative treatment – are offered at diagnosis and continued throughout the course of illness, whether the outcome ends in cure or death. It is difficult to determine which children may benefit from palliative care. Time of death is often difficult to predict. Curative treatments seek to reverse the disease process, whereas palliative treatments focus on relieving symptoms, regardless of their impact on the underlying disease process. Physicians and family members may exhaust all curative options because they consider palliative care,

83 which delays the timely introduction of palliative care or referral to palliative care specialists. The assumption that there is no place for palliative care until all curative options have been exhausted may interfere with an early discussion of palliative issues, including of unduly burdensome interventions at the end of life. Parents and children may infer that a discussion of issues such as “do not resuscitate” or “comfort care” is equivalent to “giving up” Such interferences may inhibit family members from voicing fears and concerns about the burdens of life-prolonging interventions and the dying process. Communication with patients and families about these concerns must be done with respect and empathy. An explanation of the usefulness of specific therapies, such as cardiopulmonary resuscitation, and a discussion of the value of advance directives to ensure that treatments that have become burdensome are not used, can be comforting to families. The ability of health care professionals to communicate difficult messages well can be learned through directed education and practice.

Developing a palliative care plan – as no one person can provide all the necessary support for the child and family, palliative care is best provided using an integral interdisciplinary approach. The provision of palliative care for children involves a partnership between the child, family, parents, employer, teacher, school staff, and health care professionals, including nurses, chaplains, bereavement counselors, social workers, primary care physicians, subspecialty physicians, and consultants. Physical, emotional, psychosocial, and spiritual/existential domains of distress must be addressed. The child should participate to the fullest extent possible, given his or her illness experience, developmental capacities, and level of consciousness. Regardless of the prognosis, respect for the child requires that he or she be given a developmentally appropriate description of the condition along with the expected burdens and benefits of available management options, while soliciting and listening to the child’s preferences. For example, burdens may include time away from home and friends: benefits may include participation in research studies on an altruistic motive. The discussion should focus on what interventions, from the child and family’s perspective will be of most benefit. The relief of pain and anxiety is an essential aspect of palliative care, and should be addressed throughout the course of the illness. In some instances, pain relief may free a child to participate more fully in his or her final days, weeks, or months of life. Openness to the day-to-day experience of the child and flexibility in considering all options that may palliate distressing symptoms and conditions are essential when developing a treatment plan. The goal is to add life to the child’s years, not simply years to the child’s life.

84 Greater emphasis should be placed for palliative care for children as well as improving the quality of life for those facing terminal illness. Improving palliative care urges better pain management, physician education, and changes in Medicaid reimbursement and health plans. A child with a life threatening illness should be provided with the full range of support and palliative care at the point of diagnosis to the end of his or her life.

Chapter 6

The Dying Child

To Share Spiritually

85 Perhaps more than any other events, the impending loss of a loved one raises the most urgent issues about good and evil, reward and punishment, a theology of an afterlife. Your religion may provide you with a spiritual philosophy that helps you make some sense of death and life. Beware. Religion can be hazardous to your health, when you believe you have not prayed hard enough, and punishment is linked to death. Religion then becomes a tool for denial of real emotions and keeps you from releasing feelings of helplessness, guilt and anger. A mature, forgiving, open faith sustains these feelings, encourages expression, and allows your angry cry to heaven – “How could You, God?” Religion offers: no absolute answers, no guarantee of special treatment, and no extended length of time for your beloved. For many, faith does offer a glimpse beyond the fragile, transient life on earth, of an eternal life – of happiness and peace, and helps its believers to accept the unacceptable.

Dying Child Preferences change with the dying, just as they do with the living. Flexibility within reason is a healthy goal. When someone is dying and his/her world is getting smaller, he/she will notice and welcome a return to the simple pleasures of his/her five senses.

Comforting Sound Music can be very comforting for children and helps pass time. Keep a peaceful mood in mind, not something that changes tempo frequently or sounds frightening... The dying are often exquisitely sensitive to annoying sounds. You may want to screen out beeping watches, cell phones, barking dogs, loud noises, etc. Remember the sense of hearing may be present even if a child seems to be comatose, so avoid talking to others across the room as if he/she were not there. Watch for signs of anxiety or irritation, such as restlessness, extraneous movements, glancing about, facial or extremity tension, trembling, voice quivering, or purposeful activity. Also assure the child that if he/she is feeling drained; he/she has the right to end the visit. Take this opportunity to teach everyone to respect healthy boundaries.

Avoid tapes that suddenly change tempo, get spooky or loud or break the peaceful mood in any way. Some New Age music, some classical music, and the child’s personal preferences are good choices. If you are considering vocals, avoid those that the child enjoyed in the past but now finds depressing. Many survivors of near-death experiences or coma have reported details of disrespectful conversations they overheard. Some visiting and conversation may be welcome, but conversations involving more than two visitors can be confusing and exhausting for the child.

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Touching with intention People facing death need touching more than ever but may be unable to instigate it or even ask for it. Everyone has the power to transmit healing, soothing energy, even if it is not done according to a formal technique. Or if physical touch is no longer comfortable or pleasant for your child, you can hold their hand. You may also find that massaging an extremity may be helpful which may offer the following benefits: - reducing feelings of isolation - helping with changed body image - reducing stress - decreasing stress - decreasing pain and discomfort - stimulating blood and lymphatic circulation - enhances awareness of physical boundaries, which can be helpful when your child is sick and confused

Massage also enhances a child’s awareness of his/her physical boundaries, which can be helpful when he/she is sick and confused. Coach family members and friends to continue touching their loved one throughout the dying time. Simply holding someone’s hand is a profoundly caring act.

Changes in taste Make meals look appealing, maybe a candle, a flower, or a love note. Try tiny or small portions more frequently and only half filled glass of liquid. Try favorite foods. Check temperature of foods – watch so they are not hot or cold, especially drinks may cause intestinal cramping, gas or hiccups. The temperature of fluids seems important to everyone’s sense of taste. But preferences can change unexpectantly when someone is ill. Ice-cold or hot drinks may produce intestinal cramps, gas, or hiccups. Room-temperature drinks that are usually served hot or cold may trigger nausea. Food left out too long is often nauseating to a person without an appetite. Even if the child has not eaten anything, you should remove the tray and try again later. An exception would be soft mints or lemon drops to keep the mouth tasting sweet or to freshen the breath when visitors arrive. Water and ice chips at the bedside are a good idea, as your child does not have to ask for things frequently. Keep straws nearby, as well as towels for spills. Food preferences may also change drastically with illness or certain medications. Your child may experience odd cravings or want only one or two foods. He/she may ask for carbonated beverages even though they cause hiccups and gas. Experimenting helps and, as always, when in

87 doubt, ask.

Visual Surroundings Children enjoy seeing favorite objects that have personal or spiritual meaning. Color and light also are important in the dying person’s world. Color can be stimulating or soothing. Generally, soft muted tones are best. The “water” colors – greens and blues are soothing, as are the peaches and pinks found on the inside of a shell. Off whites and soft beiges are more pleasing than stark white. Avoid red, yellow, orange, and other “electric” colors because they can stir anxiety. Bright lights can be uncomfortable and may cause headaches with prolonged use. When possible, replace fluorescent lighting with natural light by tilting blinds or using an incandescent lamp. Shaded lamps at eye level are more comfortable than overhead lights. But if you place a lamp on the child’s nightstand, be sure the stand is high enough for him/her to reach needed items and low enough to divert light from him/her. By the way, your child can maintain his/her independence and sense of control by using remote controls and touch sensors for electronic devices.

A dying person spends much time with his/her eyes closed. Visualization can help improve his/her internal visual landscape or enhance physical, emotional, or spiritual healing. A helpful image is that of a “safe place”, a beautiful place in nature where the child can breathe in safety and breathe out fear... Reading peaceful and imagery works to a loved one increases intimacy and sharing at ever-deeper levels.

Shrinking World The dying child who is bedridden lives in a small physical world: the sickroom and perhaps the bathroom take on new importance while memories of the larger world outside begin to fade. As his/her surroundings shrink, the child may become more sensitive and easily irritated. Noise, perfume, cigarette smoke, and even chitchat of well-meaning visitors may make him/her angry or anxious. He/she may withdraw and become less communicative.

Of course, everyone has his/her own preferences. Some people hate the isolation of a back bedroom and really want their sickbed in the living room where the action is. Others dislike the hubbub of household activity and prefer quiet and privacy. Some enjoy kids and dogs in their beds; others shudder at the thought. And to make matters even more confusing for caregivers, preferences change with the dying just as they with the living. Flexibility within reason is a healthy goal.

88 When someone is dying and his/her world is getting smaller, he/she will notice and welcome a return to the simple pleasures of his/her five senses. It is a known fact that if someone is depressed, by putting them in a room with a window facing a living thing, a tree, lawn, a garden or the sky, their mood changes and they are not as depressed. This is valid for the dying person as well. Many people enjoy flowers, but make sure the fragrance is welcome.

Inner Landscape A dying person spends much time with his/her eyes closed. Visualization can help improve his/her internal visual landscape or enhance physical, emotional, or spiritual healing. Guided imagery is a form of visualization, and all it takes is a soothing and familiar voice. Encourage a family member to make an audiotape of guided imagery for your child by reading suggested scripts from the child’s personal preferences or a script made up by him/herself. A helpful image is that of a “safe place”, a beautiful place in nature where the child can “breathe in” safety and “breathe out” fear.

Reading imagery scripts to a loved one also increases intimacy and sharing at ever- deeper levels. If the dying person and his/her caregiver were formerly lovers, they can use these opportunities to find new kinds of intimacy when physical intimacy is no longer possible for them.

Good scents and bad Unpleasant odors undermine a healing environment. To banish unwanted odors, try these solutions: -open a window to fresh air -turn on a ceiling fan -use an air freshener -place a drop of perfumed oil on a cooled light bulb before turning on the light -burn incense

To introduce pleasing scents, consider aromatherapy. The practice of using aromatic essential oils for healing and soothing has been around for thousands of years.

Pets permitted Beloved pets can play an important role in the dying child’s world. Now adays, many health care facilities openly allow pet visits. The child’s love for a pet is much more

89 relevant than any concern about germs.

Bringing solace - what visitors can do for the dying child. People want to help their friend or loved one who is dying, but sometimes does not know how. You can help them give something of value by posting this list of suggestions: -sign up for a block of care giving time -organize friends to bring meals, share overnight care and send letters -bring pictures, decorative items, or any supplies that may be needed -bring gifts, such as a stuffed animal, rented movies, music, and etc. -offer to clean the house, mow the grass, take the car for service, walk the dog, write the checks, write letters, and take the children for outings, and etc. -share your talents for fixing things, singing, crocheting, and painting pictures, photographs of friends -hug the one who is ill, hug the caregiver, and hug yourself for caring

Children are special; we owe them the best care we can give.

Signs of a failing body  Changes in appearances – many dying people change dramatically in appearance, and they are naturally distressed by this. Some children are so uncomfortable with their appearance that they avoid seeing friends, cutting themselves off from an important source of emotional support. Help your child look his/her best by assisting with grooming, including shampooing, hair care, and mouth care. These interventions encourage self-care and convey your acceptance of his/her desire to maintain his/her appearance. Loss of interest in maintaining his/her appearance may signal depression. Ask a mental health professional to assess him/her if appropriate.

 Functional changes – although your child may envision weeks and months of living in bed, he/she may be up and around until the very end. Even so, however, he/she is likely to tire easily and experience a loss of stamina. Speak frankly, yet gently about making accommodations to his/her new limitations. For example, while he/she is still somewhat mobile, suggest that he/she keep a wheelchair on hand to use when he/she gets tired. This will make the transition to a wheelchair easier for him/her as he/she becomes more incapacitated.

As your child becomes incapacitated, he/she may have to accept care for private bodily functions. Maintaining his/her dignity during the dying time includes the

90 respectful care of these functions. Encourage him/her to allow him/herself to receive this care from others without shame.

Loss of the physical ability and desire to relate to another sexually can be very distressing. Provide opportunities for physical intimacy with his/her partner. Speak with them about changes in their sexual relationship. Acknowledge the role of sexuality in loving and healing and support them in their sadness when its lossed as it occurred.

 Healing the body In many cultures, death is acknowledged as a normal part of life, and even children are prepared for the end of physical existence. Many people in Western cultures, however, never contemplate the end of life until they are in dying time. This can be overwhelming. When curing is no longer a goal, healing becomes even more important.

Healing is a journey toward wholeness. To heal the mind, a child must learn to embrace fear and trust life to get him/her where he/she needs to go. One sign of a healing mind is an acceptance of what is happening to him/her.

To help your child heal, be frank and open about the fact that death is coming, but do not take his/her hope away. Convey to him/her that the future is any time beyond the present. As long as anticipating tomorrow is part of his/her life, he/she continues to have a future.

Actively listen to him/her. Asking him/her how he/she feels about what is happening and whether he/she wants help coming to peace with it is okay. One way to help him/her leave a legacy is to suggest that he/she write his/her life story in a journal or write letters significant in his/her life. He/she may want to have a friend or professional create a videotape of his/her talking to those he/she will be leaving behind. Any of these methods give him/her the gift of knowing he/she will be remembered, thus alleviating one of the fears of dying.

 Guilt and Blame: Facing Unfinished Business A dying child may be haunted by feelings of guilt and blame about the illness, unresolved issues in personal relationships, and his/her spirituality. Use active listening techniques to help him/her process his/her thoughts and release old feelings.

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Your child may believe that his/her life, illness, and death are random events – or he/she may believe that he/she is responsible for what happens and for learning life’s lessons. Either belief reflects his/her spiritual values and should be respected even if you do not agree. However, if he/she blames him/herself for life style choices that contributed to his/her illness, consider discussing the difference between taking responsibility for choices and blaming him/herself for illness, dying, or any of life’s circumstances. Remind him/her that we have all made choices in the past we would do differently today, given more wisdom and experience. Tell him/her, he/she is not to blame for the twists and turns his/her body is taking. After all, no matter what choices we make in life, we all die.

Relationship issues your child may wish to resolve could include making amends for past actions or inactions, asking forgiveness, seeking an apology or acceptance, or just putting an old disagreement to rest. Releasing the past is a necessary part of moving on in peace.

You may sense a moment when it seems appropriate to ask your child if he/she wants to talk to someone. He/she may ask you to act as an intermediary with a friend or family member. In a sensitive way, you can be present for this moment of healing. Just remember that this is your child’s conflict; resist the urge to “fix” things or judge right or wrong.

 Spiritual Issues Spirituality is not confined to a belief system or practice of worship. Spiritual issues are life issues such as finding meaning in suffering, forgiveness, grace, hope, and love.

When your child enters the dying time, he/she may feel very alone spiritually. Even though he/she may have led an active spiritual life, he/she may feel abandoned and forsaken. Whatever his/her religious or spiritual background, facing his/her own death means confronting some of the primary questions of existence. Where do we come from? Where are we going? What is our purpose?

As your child faces death, you will confront your mortality, too. This process can be a challenge to your own long-held religious beliefs. It can also be an

92 opportunity to expand your spiritual nature and to help your child reach peace of mind and soul.

Facing your own mortality is a profound way to prepare yourself to be fully present for your child. In that full emotional presence, you can create a dying time that is a time of healing and growth for all concerned.

 Seven ways to heal the mind Encourage your child to maintain a hopeful outlook throughout the dying time by cultivating these attitudes and strategies: 1) Do not retire from life before you have to. Develop the aliveness of your mind. Keep reading and watch or listen to educational programming on TV or radio. 2) Reconnect with what is natural. If possible, go outside in the sunshine and walk or sit in such a way that you have contact, even if only visual, with nature. 3) Allow your senses to come alive and stay alive. Appreciate textures such as bark, leaves, flower petals, fabric, or a child’s hair. Listen to the subtleties in music or the perfect quiet of stillness. 4) Do not stop being creative and productive. If you continue learning and inspiring yourself and others, you still have aliveness. You may have lost the physical ability to paint or write, but you can still use your imagination. 5) Redefine obligations. Do only what you choose to do. Talk only to those you want to talk. Finish responsibilities, as you are able, but do not take on any more that you do not want. 6) Recognize and honor that your perspective will naturally become narrower and narrower. However, try to maintain an interest in making key decisions that affect your comfort and well being. 7) Stop negative talk about yourself. Forgive yourself for your imperfections and mistakes in life. You may not have always done the best you could. But you did what you could given the circumstances, and the emotional and spiritual health you had at the time.

What is a Good Death? In caring for a child who is dying, knowing what would make the experience of dying good is an important goal for physicians and other members of the care teams. You just need to be sincere, patient and interested. Listen more and talk less. Try asking something like, “Knowing that all of us have to think about dying at some point, what would be a good death to you?” What children choose when they think about a good death for themselves is often beyond what medicine can provide. For instance,

93 an affirmation of love, a completion of important work, or a last visit with an important person. As a physician, I can not always make those things happen. But I can help the dying person get ready and in this way, contribute to a death that is decent.

What goals should I have in mind when working towards a decent death for my child?  Control of pain and other physical symptoms. The physical aspects of care are a prerequisite for everything that follows.  Involvement of people important to the child. Death is not usually an individual experience: it occurs within a social context of family, significant others, friends, and caregivers.  A degree of acceptance by the child. Acceptance does not mean that the child likes what is going on and it does not mean that a child has no hopes – it just means that he/she can be realistic about the situation, a medical understanding of the child’s disease. Most children, families, and caregivers come to physicians in order to learn something about what is happening medically, and it is important to recognize their need for information.  A process of care that guides a child’s understanding and decision making. One great physician does not equal great care – it takes a coordinated system of providers. How do you know someone is dying? This question is not as simple as it might sound. The SUPPORT study demonstrated that even for children with a high probability of dying, it is still difficult for a clinician to predict that a particular child is about to die. Thus it may be more useful for clinicians to give up relying on their predictive skills and look at the common clinical paths taken by dying children, and design medical care that includes “contingency plans” for clinical problems that a child with a incurable disease is likely to experience. Such contingency plans might include advance directives or DNR (do not resuscitate) orders, as well as lines such as, “You will probably die from this, although we can not predict exactly when it will happen. What is really important for you in the time you have left?”

What should I know about the hospice approach? In order to help someone towards a decent, or even a good comfortable death, the hospice framework is very helpful. Hospice started as a grassroots effort, as a view of dying that lets go of the possibility of cure. Instead, hospices emphasize symptom control and attention to psychological and spiritual issues. Pathophysiology becomes

94 less important and personal meaning becomes more important. Thus the framework analyzes a person’s day-to-day care plans for a child:  Pain – one of the things most feared by children with life-threatening illness  Symptom control-including dyspnea, nausea, confusion, delirium, skin problems, and oral care.  Psychological issues – especially depression, sadness, anxiety, fear, or loneliness  Spiritual or existential issues – including religious or non-religious beliefs about the nature of existence, the possibility of some type of afterlife.

Hospice care in Washington State is most often provided by multidisciplinary teams who go to patient’s homes. Medicaid covers the care for patients judged to have less than six months to live. Hospice care is generally underutilized, and even though most hospice teams feel that at least six weeks of hospice care is optimal, most patients receive much less because they are either referred very late or have not wanted hospice. A major problem in connecting hospice care to acute medical care is that referral implies a “switch” from curative to palliative medicine – a model that does not fit comfortably in many illnesses.

What you need to understand to care for the dying Written by Joanne Lynn one of the principal investigators of SUPPORT – she suggests 4 things clinicians must know to care for the dying:  The child’s story – including how that person has viewed his/her life, the other persons important to him/her, and how he/she could bring his/her life to a close in a way that would be true to him/herself.  The body – which covers the biomedical understanding of disease and what limits and possibilities, exist for that person.  The medical care system available for this particular child – knowing how you can make the system work for the child, as well as the relevant law and ethics  Finally, you must understand yourself – because you, as a physician, can be an instrument of healing or an instrument that does damage.

Relationship issues your child may wish to resolve could include making amends for past actions or inactions, asking forgiveness, seeking an apology or acceptance, or just putting an old disagreement to rest. Releasing the past is a necessary part of moving on in peace.

Healing Environment A healing environment is much more than a physical space. It is a soothing and loving

95 setting for the body, mind, and spirit. By paying attention to the details that enhance serenity, dignity, and peace, you apply the healing arts to your child’s dying time.

Core principles for end of life care Clinical policy of care at the end of life and the professional practice it guides should:  Respect the dignity of both child and caregivers.  Be sensitive to and respectful of the child’s and family’s wishes.  Use the most appropriate measures that are consistent with child choices.  Encompass alleviation of pain and other physical symptoms.  Assess and manage psychological, social, and spiritual/religious problems.  Offer continuity (the child should be able to continue to be cared for, if so desired, by his/her primary care and specialist providers).  Provide access to any therapy which may realistically be expected to improve the child’s quality of life, including alternative or nontraditional treatments.  Provide access to palliative care and hospice care.  Respect the right to refuse treatment.  Respect the physician’s professional responsibility to discontinue some treatments when appropriate with consideration for both child and family preferences.  Promote clinical and evidence-based research on providing care at the end of life.

The Eight Elements of Quality Care for Children in the Last Phase of Life  The opportunity to discuss and plan for end of life care.  Trustworthy assurance that physical and mental suffering will be carefully attended to and comfort measures intently secured.  Trustworthy assurance that preferences for withholding or withdrawing life- sustaining intervention will be honored.  Trustworthy assurance that there will be no abandonment by physicians.  Trustworthy assurance that dignity will be a priority.  Trustworthy assurance that burden to family and others will be minimized.  Attention to the personal goals of the dying person.  Trustworthy assurance that care providers will assist the bereaved through early stages of mourning and adjustment.

Studies show that a child diagnosed with a serious illness usually senses that he/she is never really the same child again. Parents, siblings, grandparents, aunts, uncles, teachers, and friends – virtually everyone the child has contact with – treat him/her differently.

While it may take time before that child understands the meaning of his/her illness,

96 almost all seriously ill children are remarkably cognizant about how others regard them. These youngsters know when they are being lied to, for example, and usually, whether their parents choose to tell them or not, that they are going to die. In these and countless other ways, terminal illness forces children to grow up prematurely.

Philosophical and spiritual approaches  Avoid offering definitions of death, the hereafter.  Try not to deny the reality of somebody else.  Remember that the famous five stages of death are ever changing – denial, anger, bargaining, depression and acceptance.  Just as they change physically – and sometimes drastically – week to week, children also change spiritually and philosophically. You do not see the same person today that you saw four days ago.  These philosophical and spiritual changes occur in loved ones, too.  Remember that each friend and family member has a unique relationship and carries a unique perspective regarding the dying loved one.  Do not attempt to share someone’s grief, and be wary of overdoing the empathy. People get very protective and possessive of their grief.  Accept human diversity 1. Culture determines what appropriate interpersonal behavior is. 2. Personality preferences play a part. 3. Communication styles will differ.  Become tolerant, if not comfortable and enthusiastic, about a wide range of rituals/beliefs surrounding life, death, and the dying process.  Examine our own philosophies.  In no way impose your own values, attitudes, and beliefs onto patients and their families.  Broaden your experience by exploring other cultures and their definitions of death and dying.

The End of Hope: Terminal Illness First Responses – the worst moment is the diagnosis. There were symptoms that puzzled you that rest, fluids and aspirin could not resolve. There were tests, too many of them - repeated finger pokes and blood draws - hours in impersonal waiting rooms, x-rays and CAT scans, and MRI’s - too many unfamiliar doctors, some kind or some brusque and mechanical. Then the appointment with the specialist, from whom you hoped that it has all been a mistake. You and your child can now go home. Instead, there are words that

97 blind, pierce, and sear. Most parents agree that learning of their child’s diagnosis is the worst moment. The doctor’s words come with the force of a death notice. The shock and disbelief that follow are much the same as that which other parents experience when they are told their child has died. Parents speak of hours and days of simply being unable to take it in, unable to comprehend fully what the diagnosis implies. Anger wells up quickly. It is outrageous and unfair for a child to die, and parents feel the rage. Because our culture allows men more latitude in expressing anger; fathers speak up more often, rage at doctors, drive too fast, or drink too much. Mothers’ fury burns just as intensely, but it is more likely to turn inward, into self blame. Scaldingly vivid in memory, these first responses give way very quickly to determination. By the time doctor’s talk with parents, usually during a second visit, about survival percentages and treatment plans, parents’ moods have shifted from despair and anger to a decision to fight. The stakes are nothing less than their child’s life. For their child’s life, they will make the fight of their life.

Helping Yourself Caring for a dying person is a demanding responsibility. You just cannot devote every minute of every day to vigilant watchfulness over your loved one. You need time.

To Relax Emotionally In times of stress, it is important you continue to live your life as normally as possible. You need interludes of emotional, physical, and spiritual rest, some space for Respite, reprieve and re-creation.

Try to find a quiet time for yourself each day, even “five minute vacations”. Wind down and try to relax. There is healing in solitude. A little withdrawal from the constant tension allows you to return to your beloved. You will feel refreshed, renewed, restored – a little different – from the distraught person you were.

To Relax Physically More than ever you should try to stay healthy. Do not skip meals. Proper nutrition is vital. Regular exercise releases pent-up feelings and keeps your body strong. Sufficient sleep fights physical fatigue.

You must maintain your health if you are to effectively take care of your beloved. Just as important as it is for you to be alone, so you need time.

98 Helping Your Loved One A Time to Visit Dying is one task that each person must perform entirely by himself or herself. That is not to say that your loved one should die alone. Visit frequently, if your loved one is not at home. Share news of the family. Seek your beloved’s advice, so he/she will know that his/her judgment still is valued. Bring small gifts. Especially, bring yourself. You may find it painful visiting a dying person, especially someone with an advanced disease. When a loved one’s features change markedly; it is hard to believe you are with the same person. It is difficult to keep eye contact. Words do not come easily. You try to act naturally, but you feel awkward. Suddenly, your beloved seems a stranger. Think of the person you knew. Inside he/she is probably the same.

A time to Talk Not with – “Snap out of it. Everything will be fine, you will see. Try hard to get hold of yourself”. Chattering is not communication. Neither is denial. Your loved one does not need platitudes and reassurances that you both know are false. These signal your beloved not to share, but to hide real fear and feelings from you. Do not try to make life normal” by pretending nothing is wrong. At the same time avoid saying “terminal” or “helpless”.

Such words make the dying person feel written off the rolls of the living. Stress that you and the doctors will do all you can to make your loved one comfortable. Look your loved one in the eye. Be open and straight forward. You allow an honest exchange of feelings when you say “it must be hard for you. Is it not so? I would like to help you, but I do not know what to do – what would you suggest?” Do not be afraid of admitting your anxiety, your indecision, and your pain. Even though no one can truly understand another person’s feelings, try to empathize and identify your loved one’s feelings. Ask yourself: “knowing my beloved like I do, aware that life will be cut short, how would I react if it were I?” The dying person may feel a need to talk not only about death, but also about the life that is past. A loved one needs to know that his or her life on earth did have an impact upon others. Consider: a tape recorder of the life for an oral history to be forever chronicled or an album of pictures and keepsakes. These records of one’s life reduce feelings of meaninglessness and absurdity.

A time to listen During moments of crisis, many people are so concerned about what to say, that they frame answers without hearing what is said. More important than your words is your ability to listen not only to what is said, but how it is said and what is meant, and to seize

99 the secret messages of silence. Listen between the lines – emotional content, body language, silences, and avoided topics. Eyes averted, turned-down head posture-shifts and the tone of voice may speak louder than words. Allow full expression of fears and nightmares. “Will there be torturous pain? Will I suffocate?” Tell your loved one: “It is normal to express these feelings. I am glad you shared your thoughts with me. Didn’t the doctor assure you that?” Dying may be a time when courage runs quite thin and faith is but a theological abstraction. Have the courage to listen to things that are not always pleasant to hear. Sometimes, all that is needed is your being there and saying nothing. Rather than a forced conversation, the best communication may be a thoughtful silence, and a tender touch. A dying woman said: “The person who helped me the most said very little. But I knew by his/her look and his/her manner that he/she knew what I was experiencing. There was an, “I know”, meeting of two hearts, especially when I saw tears glisten in his/her eyes.”

A time to Cry Tears are wordless messages, a vital part of grieving: Pain can be eased when people are able to weep together. Friends and family may believe that crying in front of or with a dying person can be upsetting to the loved one. Not true. A dying child said to his/her parents: “Aren’t you sad that I am so sick? Don’t you care? How come I have never seen you cry?” A time to touch Sickness can make a person feel very lonely and apart. A dying person needs more than ever to be close to the living. The sense of touch reduces the bleakest of all the feelings of abandonment. Holding your loved one communicates: “No matter how serious the illness, feelings toward me have not changed: I am not rejected. I am not untouchable.” Do not be afraid to reach out physically: a warm embrace, a firm handshake, a pat on the shoulder, the gentle stroking of the forehead, and a soothing and comforting message. When words fail, the touch of reassurance is vital. Hugging, holding, kissing, may be the best medicine for your loved one and for you. These actions communicate, “I love you.”

A Time to Laugh Dying people need lightness and smiles in their lives. People who have a good sense of humor during their lifetimes often maintain their sense of humor in their dying. Somberness will not make you or your loved one better. A dying person quipped: “My situation is hopeless but not serious.” Humor helped him/her manage feelings that were too great to deal with openly. The threat of his/her future was no less menacing, but it became easier to bear. Laughing together is one of the normal ways that people relate to each other. The fact that one person’s heart will stop beating does not mean that

100 another person’s heart will stop loving. Would you trade in your life’s experiences with your beloved because of all the pain and anguish you are now having? Your love can now grow knowing the limits of time, diminish because of the pain, and the impending loss. This is your real choice in anticipating grief – to grow or to diminish. “All persons are mortal. I am a person. Therefore, I am mortal. (But I do not believe it)”. Now you are beginning to realize your mortal nature, as you watch your loved one die. The slogan “Today is the first day of the rest of your life” is but a half-truth. Now you know the other half – “Today may also be the last day you will ever get.” When you face your own death realistically, you will, perhaps:  Plan for or revise your will.  Consider funeral procedures and arrangements for interment.  Design a program of insurance and planning for your estate.  Contact the social security office.  Put your important papers in order.

In short, when you actually prepare for that evitable moment, you will then see your life differently. There is a noticeable shift in your priorities, an intensive soul-searching for new meanings and the use of your energy for what is really important in your life. Death makes life precious. You realize that the two least important details are usually inscribed upon the tombstone – dates of birth and death. You will not be remembered for the length of your years, but the breadth of your sympathies for others. The depth of your appreciation for beauty, the height of your love. Love is stronger than the grave. You know that your love for your dear one will never die even after death. There are golden days you will never forget. Love has no rigid bounds. Love goes beyond the self, beyond a precious loved one - flowing freely, reaching out touching, as it flows. Love is hard, but it makes everything else easier. In the midst of death, your loved one is helping you to confront life, finding sympathy in your sorrow, comfort in your crisis, acceptance in your anguish, and love in your loneliness.

Look to this day: Look to this Day, for it is life. The very life of life In its brief course lies all The realities and verities of existence… For yesterday is but a dream, And tomorrow is only a vision. But today well lived, Makes every day a dream of happiness,

101 And every tomorrow a vision of hope Look well, therefore, to this day.

Am I going to die? Children are intuitive. They see changes in people around them and they, more than anyone else, are aware of how they feel. Many parents, families and others want to avoid mentioning death. Many people feel that to talk about death makes death possible. What is needed now is open honest discussion of what is going on and what we know and do not know. Do not waste your precious time with your child by avoiding this issue. Often, children ask about death before we know all the answers. “Am I going to die?” “When will we know. Are we still trying to find out?” “When will I die?” “We do not know for sure, but maybe in a month or before five months.” If possible, use time markers that are meaningful for children to understand (before Christmas or in the summer).

Overview of Children’s Concepts of Death  0-2 years of age - Death is perceived as separation or abandonment. Protest and despair from disruption in caretaking. No cognitive understanding of death.  2-6 years of age – Death is reversible or temporary. Death is personified and often seen as punishment. Magical thinking makes wishes can come true.  6-11 years of age – Gradual awareness of irreversibility and finality. Specific death of self or loved one is difficult to understand. Concrete reasoning with ability to see cause-and-effect relationships.  Older than 11 years of age – Death is irreversible, universal, and inevitable. All people and self must die, although latter is far off. This is abstract and philosophical reasoning.

Your support System Depending on your child’s illness, it is often helpful to find a parent organization or support group. These groups can be the source of valuable information - a voice of experience. You may find them very helpful during this time.

Stages in a Sick Child’s Acquisition of Information About his/her Illness

Stage of Acquisition Child’s Experience Required for Information Self-Concept Passage to this Stage At this Stage

First It is a serious Parents informed of

102 I was previously well illness child’s illness But now am seriously ill (not all diagnosis)

Second Know the names of Drugs used in treatment I am seriously ill medicines and their child in remission Will get better children talking to others in clinic

Third Purposes of procedures First relapse I am always ill and treatments. Relationship And will get better between procedures and particular symptoms

Fourth A larger perspective Several relapses Am always ill of the disease as an and will never endless series of relapses get better and remissions Fifth The disease is a series Child learns of I am dying of relapses and remissions the death of a ending in death ill peer

How long do we have? This is among the most difficult questions for physicians to address. In most cases, you will only have a general framework of time. Children’s responses to severe illness are variable. In most cases, your doctor will be able to give you an average prognosis. Keep in mind that these are only general estimates of life expectancy. Some children will die sooner, others later.

Fear of Death Death expectations and attitudes of people in the United States have been affected by four important conditions: 1. People tend to equate death with being old – to die, as a child is to die out of phase. 2. Persons who are ill and elderly tend to be removed to special institutions and communities.

103 3. The vast growth in scientific knowledge and applied technology in this century has created the expectation that death, too, can be defeated if enough time, money, and energy are applied to solving the problem. 4. People no longer participate in a society that is dominated by tradition, by lineage, and kinship ties, or by accepted dogma.

Fear of death - a complex group of related fears Death anxiety – the complexity of intertwined united of related fears constitutes death anxiety. Death anxiety can be subdivided into the fear of death as an event and the fear of dying, each of which has a multitude of subcategories. 1. Death as an event – fear of the unknown is very strong, and fear of death, the “unknown of unknowns” is even more so. The cliché “ignorance is bliss” does not apply - in this case ignorance breeds anxiety. The fear of the fear is merely an extension of the fear of the unknown. Ignorant of the fate of the deceased’s spiritual being, we come to fear the corpse. Modern aversion to the dead body is exemplified in stories of ghosts, haunted houses, and cemeteries. By making light of the subject, we are able to express our fear in a socially acceptable manner and thus alleviate some of our repressed death anxiety.

The dying person, forced to think in earnest about the separation death can bring, will often relinquish those things that are extraneous to enjoy the subtle pleasures. Maybe the dying can teach us to be more aware of life as it truly is, to take nothing for granted and to enjoy each day as much as possible. The fear of separation in death, then, has two main features: separation means loss of friends, family, and life’s pleasures, but it also represents a point beyond which no other chance will be given to enjoy life. Both features of separation lead to a fear of death. To an extent we are in control of our actions - we are capable of thought and our decision can substantially alter our fate. Death means a loss of consciousness, a loss of self- mastery.

Accompanying death is a loss of supremacy and uniqueness - death is the great equalizer. Since adults sometimes are unable to feel absolved from wrongdoing, they may feel guilty and wait anxiously for a punishment from God. With the loss of a loved one, family and friends become emotionally distraught - but the death also affects them in a more concrete way. The death of the head of the household will result in lowered family income and will affect the life style of the surviving dependents. People who support others (either financially or emotionally) frequently fear what will happen to their dependents. An important point to ponder is the

104 inevitability of death. If death were not inevitable, but “something that happened to an unlucky few”, then our entire death fear would be drastically affected. Specific fears people have about death as an event has been noted. They include:  Fear of the unknown  Fear of separation  Fear of losing self-mastery and uniqueness  Fear of punishment  Fear of leaving dependents helpless  Fear of the inevitable

2. Death as a Process Our society has a rather annoying tendency to label its members People are white or black, male or female, wealthy or poor. The “dying” are thought to be a minority who are not quite normal by our standards. This categorical separation is due in part to society’s communal fear of death; many of us have experienced an uneasy feeling when in the company of a dying person. We cannot face our own death let alone the dying agony of another person. In order to escape the uncomfortable, uneasy feeling we have for the dying; we too frequently isolate and separate them from our lives. When everyone begins to shun them, the dying feel abandoned. Subconsciously, we realize our tendency to isolate the dying and, therefore, fear dying ourselves lest we be abandoned. Dying is a very lonesome activity, a very personal affair. The fear of abandonment is magnified in this time of crisis when the comfort and support of loved ones is so desperately needed. The majority of people associate pain with the dying process, often because they know of somebody who died after a long, agonizing illness. Many feel that death is the ultimate injury or illness and assume that, since minor illness or injury can be painful; death must be even more painful. This need not always be true; however, since modern medicine is better able to control an individual’s pain, yet we instinctively avoid suffering and any condition that increases even the probability of pain.

When the process of dying extends over a long period of time, physical deterioration ensues. As the physical decline proceeds, the threat of immobilization and forced dependence increases. A man or woman accustomed to independence suddenly requires outside aid in what was once an easy task. Fear of disability and the need for independence and self-mastery combines to produce strong anxiety in the dying patient.

105 In an emergency situation, we hope our actions will be appropriate and not under the control of intense emotion. In the same sense, we hope to maintain composure and cope with the very strong feelings that accompany the process of dying. The fear that we will not be able to cope with these emotions is derived in part from the fear of abandonment - if the dying patient becomes too emotional, maybe this will drive others away.

Dying is a new experience each time it happens because no one is allowed a repeat performance. Like death itself, the dying process is a big unknown to all who have not experienced it. Not knowing what to expect next, we envision the dying process to be full of ”unpleasant surprises”. Knowledge of the illness involved is the best way to make the unknown known. Dying patients have the right to question their doctors about the nature of their illness, and physicians are duty-bound to answer to the best of their knowledge.

The fear of the dying process is composed of many related fears: abandonment, pain, and loss of independence, emotional upset, and the unknown. With such fears associated with the death process, it is no wonder many people admit to fear dying more than death itself.

Thus far, we have defined death anxiety in different terms. Only a few of the multitude of individual fears were mentioned and already the definition is complicated. Analyzing the origin of the fear of death is even more complex; many factors determine what one fears and to what extent. In addition, the analysis of death anxiety is confounded by our inability to distinguish cause from effect (the chicken-egg dilemma). Nevertheless, we can narrow the explanation of origin to two general headings: fear derived innately and fear derived through social interaction. 1. Death anxiety is innate – nearly every human being fears death. 2. Death anxiety is modified after birth – there is little doubt that the fear of death is affected by the society in which one lives. a. A correlation between fear of failure and fear of death has been hypothesized. Those with a great fear of personal failure often have an elevated fear of death. Failure is the inability to attain goals. Death is an infringement that denies us the chance to attain those ideal goals. It is understandable that such a correlation exists between the two fears. Females tend to be more afraid of death and its connotations than males. Although possibly genetically determined, a more reasonable explanation would include the effect of different social rearing. Boys are taught at an

106 early age that fear is cowardly. Girls, on the other hand, are freer to express their emotions in our society, and therefore, appear to have increased general anxiety.

Many other environmental factors that do not seem to affect the death fear have been studied. These elements include intelligence, socioeconomic status, marital status, number of children, and education. Not every aspect of one’s environment changes the death anxiety equally.

Terminally ill adults slowly separate from interest in this world as death approaches the time of letting go. At this time, the dying still want an assurance they will not be left alone, but they may not want a lot of visitors and there will be decreasing interest in the events of the world and activities of the visitors. Near the very end, they may want only nonverbal communication - the quiet holding of a hand or just the physical presence. Those who accept death tend to die without fear and despair, with a form of acceptance or resignation, especially when helped with the monumental task of separating from everything. Those who fight the disease and maintain a battle attitude until the very end may not have this acceptance. You may need to be cautious as caregivers to be aware of how you interact with the child.

It is essential that the child’s attitude guides all exchanges and that helper’s respect the child’s needs and style of functioning in the world. Caregivers who attempt to force their own beliefs or style onto a child would only make the ending much more painful. Even as they are letting go of their attachment to all they hold dear, many dying individuals express belief in a life beyond their existing form. This belief may be referred to as ‘going home’ to be with their God or loved ones, or it may be understood as existence through the effect one life has had on others. More frequently, this new awareness of the self continuing, although in some altered form, is expressed in a symbolic manner such as through dreams, art, poetry, or verbal references. These images indicate a new beginning, a ‘rebirth’. Being more conscious of this rebirth potential seems to help individuals cope with the impending and absolute separation while at the same time nurturing hope and love.

Suggestions for Helpful Interactions Many children who have faced life-threatening illnesses have provided insights about their daily contacts with other people. They value certain styles of communication and interaction with others throughout their illness and often find specific

107 expressive strategies to be effective tools for coping. In this section I will discuss descriptions of qualities and techniques which caregivers may find helpful with critically ill children. The techniques include creative and expressive opportunities such as guided imagery activities used for stress and pain management, discussions, writing and drawing. The personal qualities which were important to these children, included trusting people to be truthful, and feeling accepted in the moment, whether sick or playful. Lighthearted or philosophical, practical or spiritual and finally, living in an environment with hope (in an on-going although changing form) and of love, both received and expressed.

Personal Qualities 1. Truth – in Western culture there has been a tendency towards not telling children, and sometimes adults, too, the truth about their illness. This comes about for a variety of reasons such as a wish to protect, a belief they do not know, and would be further weakened if they were told, or that they do not wish to know the situation. Because these beliefs may be true for some individuals, it is critical to listen carefully to their questions in order to determine what their wishes are. It is equally critical that even when they do wish to know what the prognosis is, that they not be told in a blunt, or insensitive manner. Perhaps even more important is that information must always include hope - there should not be rigid certainty of outcome nor absolutes in time lines. Finding the right way to handle such difficult situations is no easy task. In fact, caregivers need an effective support group for themselves because such a group provides an experienced audience both for exploring options of how to share such difficult topics with a child and for addressing the personal pain caregivers feel when they cannot prevent the inevitable. Witnessing the final phase of a child’s journey in life can activate some strong issues for caregivers. To be most supportive, one must be aware of personal material, so as not to project it into the relationship with the child. One must also have an outlet for the inevitable strain, which at times arises from knowing the child’s physical and psychological state.

Should a child ask, “What will it be like when I die?” there is a clear indication the child already knows the outcome of the disease and is asking for honest communication. Because the intent underlying the questions can vary, a clarifying statement such as, “You are wondering, asking me what it is like to die,” helps direct further comments. Often what the child is really asking is: “Can I talk to you about what is happening to me?” It could be that the child simply wants someone to talk with about feelings, especially fears, as well as about beliefs and

108 physical condition. If this question is posed to family members, they may want to talk about personal beliefs of an afterlife, provided it is in a supportive manner. Presumably, no one would frighten a child at this point with punitive beliefs inherent in some faiths.

However, children often believe their disease is a punishment for a deed perceived as wrongful, and they need reassurance that God did not cause their illness because of some childhood act or thought. If the question is posed to professionals, they can suggest that the child may want to talk with a parent about family beliefs or they can explain the thoughts shared by other children; for example, they could say, “Some children have told me they think there is no more pain after you die and some have told me about going to a bright light where they will be very loved. Other kids have talked about going to meet someone they loved who died a long time before them.” Encouraging the children to describe what they believe is helpful. Such a discussion also allows them experiences to be explored and provides an opening for talking about those things, which are frightening or distressing.

Not only is the dying of a child terribly difficult for the adults helpless to prevent it; even the discussing of it can be devastating. With those caught in the taboo of never having explored personal issues about death, or with those too close to bear such a discussion, children usually know their difficulty and do not pose such questions. However, if a child has questions or thoughts which need openness, there should be someone available, and adults may need to specify who the child can talk to. For example, a parent could say, “Lots of kids who have this disease have questions about it and about what is happening to them. Sometimes they just want to talk. If you ever want to talk to someone here in the hospital, Doctor Smith will be honest with you.” This permits the child to ask questions of someone knowledgeable, who has agreed to be open, and who will have an opportunity to maintain an on-going relationship of trust with the child.

Young people indicate that having an adult to answer questions makes them feel ‘like we are partners’. Having skilled listeners available provides young people the certainty that there is someone ‘to confide in’ if there is something on my mind I can get off my chest”. Should a child ask a slightly different form of question, such as, “Am I going to die? It may indicate a need to explore the possibility of death, to test whether or not the adult will be truthful or even be a way to confirm the reality of what the child already knows. The response needs to be

109 honest and age-appropriate, but never as a blunt “Yes”. If the prognosis indicates the child will in all likelihood die from the disease, then putting that information in the context of all life forms may feel comfortable to the adult.

All the flowers die, all trees die, all the animals and birds die sometime. All people die, too. Great-grandma and Great Grandpa died a long time ago. Usually things die when they are very old, but sometimes they can get very, very sick and die when they are not so old. The doctors tell us what you have is very serious. They are trying all the medical things they can so you will not die, but right now they think that yes, you might die from this. We love you so very much and we will be with you all the time though. We will keep trying the medicines and ideas the doctors suggest.

It is important to note however, that parents must have the final determination of what a child is told. Parents need to be honest with themselves and with their child. Again, this is a very sensitive issue, and yet young people do want to know some things. If they have learned to protect parents, they may bring these questions to the medical community involved with their care. One child had borrowed a tape recorder. The youngster wanted to know the truth about what was happening, and resorted to taping an adult meeting. It came as quite a surprise to hear the warning to me the machine emitted, as the tape ran out. If parents are unable to talk about the probability of death with a child themselves, they may want to designate someone on the staff whom they trust to share appropriate, truthful information with the child. They may also tell the child to ask for more information from the staff or from a specific staff person. For example, they could say, “You may have more questions than we can answer, so you might want to ask Dr. Black or your nurse about some things. Such an opening then gives the child permission to bring concerns into the open and facilitates communication.

Prior to telling a child with whom to speak, the parents would, of course, have confirmed the individual’s comfort with the topic. There are also children’s classics such as The Secret Garden, Charlotte’s Web; Remember the Secret and Tom’s Remembrance gives warm, loving images of existence beyond the physical form. Books such as these can be read together with the child or at least made available to them with a statement such as, “Many kids who are sick like you find this book helps them. I will leave it here and if you would like to read it together or talk about it just let me know.” Such an opening allows honesty at

110 whatever level the child prefers, and this may be exclusively in the third person as characters from the book are discussed. There will also be some children who are not yet ready to explore their illness at all, but they know someone who will be truthful is available if they change their minds.

2. Acceptance – children who experience life-threatening illness have a genuine need to express their pain at times. Using swear words, for children who do not normally say these things, can have the powerful effect of releasing the tensions building in them. Their illness and all its resulting effects is an obscenity. By externalizing some of the rage and pain when these become overwhelming, rather than repressing them, children know they can continue to endure. Because such expressions are offensive to other people, certain parameters can be set, for example, swearing takes place only when loud music is playing or in a certain room, and perhaps certain phrases are not permitted. Such limitations provide a form of containment for the intensity of the emotions.

Other forms of expression can be used also: words can be written rather than said, old telephone books can be shredded or beaten, large cushions can be kicked or pounded, or foam bats can be used to hit a mattress. The important message for the children is that behavior normally not permitted is allowed under the present circumstances, but still within certain limits.

Children must also be allowed their sadness and fear also. The children themselves say things such as, “Hiding your feelings just makes you more scared. It is ok to cry. It is ok to feel sorry for yourself and to be mad at the world and everyone in it”. Permitting expressions of these feelings provides children with the opportunity to release the emotions with an adult, and sometimes with other children, who are not afraid to witness their intensity. This experience makes the feelings more manageable because they then know they can cope with the feeling and not be consumed by it. Once they have learned to release feelings and not block them until they are truly overwhelming, young people can move to a more positive mindset, one of having some control, of fighting the disease and of enjoying each day as fully as possible.

By the same token, children also need opportunities for joy and laughter also. Many hospitals have a humor channel or a children’s channel with humorous

111 programming for this purpose. Adolescents often use their own version of “black humor” as a coping technique among themselves. Favorite storybooks, playful activities, the retelling of funny family stories all help to balance the difficult times at home and in the hospital. The natural spontaneity of young people will provide these opportunities as long as the atmosphere permits. Those closest to the child will know the moods well. While some children will seem very calm or stoic through much of the illness, adults need to allow the grumpy, non-cooperative times, too. For some children, this aspect of their personality may need clear verbal permission or even encouragement. These feelings are often less accepted than more cheerful ones but they can be acknowledged in several ways.

The adult can initiate the topic by saying something such as, “You know, we all have bad days. It is okay to be cross and grumpy sometimes; you may want to talk with your teddy bear or throw crumpled paper balls. Even when you have a horrid day, we still love you”. Adults can provide books specific to feelings such as Alexander and the Terrible, Horrible, No Good, Very Bad Day as a springboard for discussion. If it is comfortable for the adult, the child can be helped to explore a fantasy about being upset. In a totally accepting tone, the adult can reflect and even enthusiastically extend the image. Sometimes outrageous exaggeration within the dialogue helps the child vent tension just by building the image to the point of laughter at the ridiculous scene created together. When necessary, the adult may also remind the child about what is and what is not permitted in the outer world. Adults should describe specifics which are allowed. And they can use examples from children’s books, movies, and television as well as from their own lives to describe emotions strongly felt and appropriately expressed.

3. Love – One of the more talked about feelings in much of the recent literature for health and medicine is love, specifically self-love. For children, feeling loved is always essential, but when they are vulnerable and fighting a life- threatening illness, love is critical. Feeling loved and accepted seems to nurture their spirit as well as their body, helping them cope with the struggle. While any sudden increase in or unusual expressions of caring such as an abundance of new toys generates confusion, children do enjoy frequent reminders of their value. This can be as simple as a hug or statement that they are loved. It can be expressed in a note tucked into a sock to be found in the morning or in a bedtime ritual of saying a poem together. Caregivers can be

112 sure they make eye contact, use the child’s name, and listen when asking how a child is. Taking a few minutes to share a common interest, such as bringing in a new stamp or tape or stuffed animal, or asking specifically about the outcome of a game or movie plot are minor in themselves, yet reflect caring about the child as an individual.

Children frequently indicate that it is little touches such as these, which make the difference in their sense of being cared for and being treated as real. Children need to be allowed to give love also, which will mean others are asked to receive this love. “When you give help and love to others, it makes you feel warm and peaceful inside”.

4. Hope may range from hope for a cure to hope of being accepted by God, and maintaining hope is essential. Hope acts as one of the key threads in the evolving tapestry of the child’s life; it provides the stability for life’s fabric to continue as new ‘fibers’ or experiences are introduced. Children who are facing life-threatening illnesses also express a similar belief in the need for hope. “You always have to have a little hope because if you run out of that, there is nothing worth anything. You might as well give up right then and there”. They indicate a belief that by modeling a positive attitude, they may be able to help others cope. “Hey, you know, maybe he/she is right, maybe there is hope”. They also come to recognize their own inner strength, “One thing I can say for sure is that now I know how to fight for my life and never give up hope”. For many of these children, faith, often expressed in prayer, was part of this hope, “Most of us found that praying was of great help. It made us not feel alone. It helped us find faith and hope that we were safe”. Sometime the hope expressed more symbolically as the rainbow, “And do not forget, when you have total Faith, that we are always connected to each other in love, you will surely find a rainbow on the other side of any dark cloud”.

Expressive techniques Expressive techniques allow unconscious content an opportunity to have form in the outer world. Dream images occur spontaneously once consciousness, or the ego, relinquishes control when the individual is sleeping. This, however, is a passive activity. Words should be drawn or painted whether you can do it or not. The material thus produced is an active process, strengthening the bridge between the conscious and unconscious. Most creative expression from the unconscious have some form of approval from the ego to proceed even if it is

113 only the volition to pick up a pencil and put a mark on the page, or even the permission to talk about certain material. The actual content released beyond this initial point is also influenced in varying degrees by conscious will. Because of this self-censorship, drawing seems to permit greater freedom of expression, especially for children who may not feel as comfortable with their written or verbal skills. The child’s clarification or descriptions, which are given following completion of a drawing, are often freer than verbal material alone would have been because of the release, which comes from the creative process itself. Words can then complement the visual image once it exists in the other world.

As with any relationship, it is important for both the adult and child to feel comfortable with the expressive activity being used. For some individuals enactment through play will seem most effective. For others, creating a changing world in the sand tray will be the best outlet. Some people prefer body movement or music and others enjoy the sensory experience of modeling clay or play dough. When seriously ill children become less mobile and less energetic, they may prefer other expressive activities. Instead of creative play using a full range of toys, they may benefit from using puppets or from just telling a story about them. These children often derive great pleasure from telling the story or giving captions to a book of photographs. They can use existing family photos and they truly enjoy taking photographs themselves for such a book. Other books can be collections of their work from a variety of sources simply compiled in scrapbook form. There is a clear visual representation of who they are when various graphics are bound together.

Audio and videotape recordings of their experiences and thoughts, some children like to direct in relation to themselves. The underlying consideration for all of these is to provide an opportunity for the unconscious to be expressed in the outer world in some valued way. Because it is evident that children do have an inner awareness of their prognosis, but may not understand it in the context of their concrete, confusing, and painful experiences, the adults who care for them can help by making some expressive opportunities available to them. Thus, consciousness can also develop some insight and comfort.

Discussions As indicated previously, an opportunity to ask questions is very important for

114 many children facing life-threatening illnesses. The responses to these questions can make an incredible difference in whether the child feels alone and fearful or supported and understood. At times, children will ask these questions of adults and other times of their peers. When an adult is responding, it is important to be honest, to use age-appropriate language, and to respond to what has really been asked. Clarification of what the question is about, allows the adults to be certain they are not projecting their own assumptions or concerns into the conversation. Letting the child be the guide to the duration and content of the discussion also indicates respect for the child’s needs. More structured group discussions also help young people with a variety of issues, which arise as a result of facing life-threatening illnesses. The sharing of common disease-related experiences and of coping strategies is of great value. “We found it helpful to find other kids who have similar problems and to meet with them. We have found that, as we helped each other, we have helped ourselves…It is helpful to find you are not alone, and that there are other kids just like you who are going through the same thing…Kids can be more helpful than adults because they talk your language. Kids can also understand without your having to use words”.

Writing Some children enjoy the use of words for self-expression and may find a great deal of release through written activities. This may include keeping a journal, writing letters or poetry, completing sentence stems or dictating stories. They may prefer to tell a story about pictures provided for them, about photographs of themselves and family, or about their own art work. Many children seem to feel most comfortable telling about their own creations. However, if there is no response to a request such as, “Can you tell me about the drawing?”, one must respect the importance of the picture for the valuable image that it is. Sentence stems are brief, flexible, and often reveal how the child views the world or what they hope to find in others.

Encouraging children to write or to dictate their creative works provides them with an outlet for some of the pain and turmoil they experience, as well as, for some of the wisdom and perceptiveness they develop.

Imagery and relaxation Another valuable technique is guided imagery, which can be used for relaxation

115 and pain management. Using a variety of relaxation and guided-imagery activities, which can be read or listened to on tape, the child learns a series of physiological responses within the body. Several suggested activities are useful in extending the expressive images and drawings are especially valuable to help caregivers understand the child. Children can also use this visual image in combination with a focus on their breathing during medical procedures. In some hospitals, a parent or clinician, to reinforce the image and to help distract the child undergoing difficult procedures creates actual soap bubbles. Another way of using imagery is in active imagination. Some children indicate, “We found that by using our imagination, we could picture in our mind a rainbow on the other side of a stormy cloud”. This helped give us hope and patience. Many young people also find visualizations or guided imagery useful to see themselves doing something or being somewhere they enjoy, for releasing distressing emotions, and for experiencing positive, loving scenarios. There is great value in having the mind create a desired situation within the individual.

Drawings Drawings can be done on a directed basis, where the adult suggests the child create a specific drawing, or they can be completely spontaneous where the child chooses to draw without any prompting. The latter can be in the presence of an adult or even while the child is alone. Although the discussion here is related to drawn or colored images, some children prefer to do collage work or use materials such as modeling clay. Drawings can be useful not only for what they indicate, but also as a mechanism for release. The drawn and written words created by so many children help caregivers grasp the depth of wisdom and insight these children experience by facing life-threatening illnesses. When the final outcome is a transition to a form of existence we know so little about, the young people seem to know that also. Their works help caregivers define ways in which to be most helpful and valuable to them while they are completing this portion of their journeys. By responding to what the children indicate is needed and desired, caregivers can honor their struggle. By providing more than the traditional physical support given so generously, by given expressive opportunities as well as love, hope, truth and acceptance, caregivers can ease the burden these young people find some form of meaning in their experience, often as the development of their own spirituality. These children become teachers of life and they leave a powerful gift.

116 The Child and Family – Facing a Terminal Illness 1. Psychological Impact of Life-Threatening Disease – living with a life- threatening disease requires psychological adjustments by the children and their family. These adjustments take place in stages and usually begin with the announcement of the diagnosis. 2. Dying Trajectory – discovery of a fatal disease marks the beginning of the dying trajectory. With different diseases, the dying trajectory may extend three to five years, though some survive for even longer periods. Both child and family have to live with the ambiguities of an uncertain future. The adaptational tasks of these families require the parents to maintain an investment in the welfare and the future of the ill child, while at the same time preparing for the death through anticipatory grieving. Parents need to maintain a sense of mastery, while at the same time knowing the terminal nature of the child’s illness. The child needs to integrate the losses and changes produced by the illness, while still fulfilling whatever personal potential for life exits. 3. Stages of Psychological Adjustment – the process of learning to live with a life-threatening illness takes place in stages. All involved - family members, the child, and health care members – go through a series of stages in which they assimilate the changes in the child’s status into their own concept of reality. The first stage is shock and disbelief, during which denial is a commonly observed pattern of behavior. Anger or guilt and a gradual awareness of the change in the child’s condition may occur next. One must reorganize relationships with other people, and one may attempt to strike a bargain with God to have death postponed. Resolution of the loss through active grieving must occur. There should also be reorganization of identity incorporating the loss of a loved one. These stages do not necessarily take place in a certain order or in an easy manner. People generally have to repeat the same stages each time the child goes through a serious episode of physical regression and/or hospitalization. People vary in their capacity to experience and openly display their anger, frustration, guilt, sadness, and grief. Persons who have been taught to openly express these emotions will usually move through the stages of psychological adaptation more easily than those who think of overt expression as a sign of weakness or loss of control. a. Awareness of Death – a problem of great concern for parents of a child with a fatal illness is how much the child knows, or should know, about the diagnosis and prognosis. The behavior of dying persons and their interaction with others is influenced by the “awareness context” in which it

117 takes place. Awareness context is defined “what each interacting person knows of the child defined status, along with his/her recognition of the other’s awareness of his/her own definition…it is the context within which these people interact while taking cognizance of it…it may change over time.” They define the types of awareness contexts as: closed awareness, suspected awareness, mutual-pretense awareness, and open awareness. In the closed-awareness context, children do not recognize their impending death, although everyone else does. The suspected-awareness context occurs when children suspect what others know and attempt to confirm or negate their suspicions. In the mutual-pretense context, everyone defines the child as dying, but each pretends that the others have not done so. In the open-awareness context, the child and all of the others are aware that death is imminent and express it openly. The impact of each type of awareness context influences the interaction between child, family, and staff. Actions and conversations are guided by who knows what and with what degree of certainty. They argue that action, talk, and accompanying clues cause certain awareness contexts to develop into other contexts. This occurs when one of the persons in the interaction violates the rules necessary for maintaining that particular context. A new context then develops. b. Mutual-Pretense Context - helps parents prepare for the final separation by pacing it out and allowing them to rehearse the separation in an acceptable manner. The children’s use of distancing strategies gives parents an excuse to leave without feeling they are deserting the child. Parents feel that protecting children means shielding them from knowledge of the disease, diagnosis, and prognosis. Parents who assume this context and let their children know it by nonverbal cues are also not put in the position of having to answer difficult questions. It also protects the family members temporarily against too much grief and the staff members against too immediate a scene. The dying person may be denied a closer relationship with family members and staff, which sometimes occur with open acceptance. c. Open Awareness – advocates of the open-awareness approach argue that children with a fatal illness and their siblings need an environment in which they can ask questions and can know what is happening. Those parents give the children information about their illness and their future. An awareness of impending death gives children an opportunity to close their lives in the manner they wish. Open awareness has disadvantages

118 too. Other people may not approve of the children’s way of managing their death and may attempt to change their ideas. Parents of these children are different from those who practice mutual pretense. These parents seem to derive most of their identity and sense of self-worth from sources other than the parental role. These parents are also more unconventional in their behavior and appear less concerned about society’s judgment of their beliefs. These parents also experience additional problems. Their peers and staff are not protecting their child from the facts that sometimes ostracize them. Staff members appear not to be as helpful to these parents. Parents are also faced with more concrete problems of how to treat and what to say to the child. Yet, these parents say that being honest with their child has helped them to cope with the prognosis. Honesty also has helped to bring them closer together. d. Conclusions – children practicing mutual pretense and open awareness behaved in the same manner. Both sets of children are preoccupied with death and disease imagery in their play, art, and conversation. They do not discuss going home and future plans, and they continue to practice distancing strategies. The question is not, “Should I tell the child that he or she is dying?” but “Should I acknowledge the prognosis to the child?” The needs of the child, family, and staff should be taken into consideration. The child needs to be allowed to maintain open awareness with those who can handle it and, at the same time, mutual pretense with those who cannot. It might be helpful to tell children only what they want to know, what they are asking about, and on their own level. The issue is not whether to tell children that they are dying, but how to tell them in a way that respects them and their needs. 3. The Terminal State – the terminal state is divided into three stages: a. The Terminal Phase – the terminal phase may last weeks or months. The child may have frequent relapses, difficult remissions, and numerous complications. This phase marks a renewal of bargaining for experimental procedures and finally for enough medication to relieve the child’s pain. Those involved with the dying child are often angry a time. Parents may become angry if others talk about their child’s future when it is so obvious that the child has none. Children at this stage often lose interest in the outside world. They may become more depressed with each discharge from the hospital because they have accepted the painful reality that they can no longer participate in and enjoy the activities of family and friends. Older children know they will never get well and may wish the death would

119 come. Rarely do older children resist to the end. Older children are usually resigned to their death before their family is and they often feel guilty. Many children thank their parents for all they have done for them or ask forgiveness for the problems their illness has caused. b. The Terminal Period – during the terminal period the inevitability of death is recognized and affirmed. This stage may be more readily reached when children are free from pain and appear at peace with themselves. Sometimes when pain is great, acceptance or resignation becomes easier. Parents may say that they accept the inevitability of the child’s death, but they do not always believe it. True acceptance means realizing that there is no hope for survival. When death is near, the family may have to make a decision about whether the child will die at home. Decisions must also be made about transplants and an autopsy. Children in the terminal period of their illness often, quite deliberately, will stop talking about discharge, returning to school, or making any future plans. They may become depressed or withdrawn. Some preschoolers with a perfect understanding of tenses have been noted to talk about their aspirations in the past tense. When parents and children have experienced a very supportive and close relationship up to this point, they may mutually “recognize” the termination of further energy resources. Such children may begin to help their parents to stay away or to transfer their interest to other people and things. The children may find it too painful to watch their parents mourn. They may bid their parents goodbye too soon and may be left alone to die. c. The Terminal Event – includes the hours preceding death itself. A child may rally before death and achieve a surprising alertness. Some parents regard this as a last treasured gift, others as a painful experience since they know so little time is left, and there is so much to talk about. The child’s death is generally taken calmly, but with the appropriate expressions of effect. Outbursts of uncontrollable grief of open expressions of self-blame are the exception. Usually there is some indication of relief that the child is no longer suffering. The death of the child does not appear to be a severe superimposed stressful situation but rather, an anticipated loss at the end of a long sequence of events.

Care of the Dying Child Terminal care is becoming an increasingly accepted practice in the medical community. As part of the terminal care program, the child’s house is often chosen as the place for continued care, as well as the site for death of the

120 child. This practice has been increasingly instituted with older dying children/adults and the terminally ill child. It had been a commonly accepted belief that better care and greater control of pain and other symptoms associated with the illness were available in the hospital. This belief, often felt by both the health care professionals and the family, failed to take into account the most important person, the child. Children’s feelings often are overlooked, and adults who “know best” make decisions about their well being.

The Dying Child’s Wishes Dying children often have a desire to talk to their parents about their impending death, but are known to keep quiet for fear of upsetting their parents. Most children can sense that they are dying and may struggle with fears that they are worse than reality. Many parents have found it best to talk honestly and openly with their dying children, and you will likely find the same to be true. Even if your children do not understand everything, they will feel that you have been honest with them, and will feel more open to talk about their fears. Some children want to talk about life after death and what it will be like. Some want to know that their family will be okay when they are gone, while others wish to talk about the process of dying. Discussing these issues can help bring peace of mind to the dying child. Some children also have last wishes. They may want to leave a favorite toy for someone or they may have special instructions for the funeral. These wishes are very painful to talk to your child about, and you may find it easier to have a friend, relative, doctor, or minister with you. Often, children accept their own death before their parents do, but hang on because they need permission to die. These children may need to be told by their parents that, although their parents will miss them, it is okay for them to go. When the moment of death occurs, you may not be there. You may have left for a rest or break, and you should not feel guilty about this. Your child will know that you cared and that you loved him or her. Your child will also know that you did all you could, and that you were there in mind and spirit.

Working with parents of dying children – while acknowledging uncertainty, a pediatrician needs to provide a realistic appraisal of prognosis and the range of time in which death is likely to occur. Pediatricians should support parental expression of the disappointment, anger, grief, and suffering associated with the child’s illness. Acknowledging grief is often the first step toward facing the reality of the child’s illness. Such acceptance may

121 help parents focus on the quality remaining of the child’s life. Most importantly, the pediatrician needs to reassure the parents and child of the continued involvement and support of caring, skilled clinicians throughout the child’s life, as well as after death.

Fear of abandonment and isolation, especially during a child’s long illness, is a major concern to chronically ill or dying children and their families. The place where death occurs, whether in an intensive care unit, another area of the hospital, another institution, or at home, depend on such factors as the wishes of the child and family, the physical layout and visitation policies of the alternative sites, the desire and ability of staff to remain involved, and the availability of other caregivers such as bereavement counselors and clinicians with palliative care expertise.

Whether death is anticipated or unexpected, pediatricians are expected to support parental grief and guilt as parents struggle to cope with their fundamentally incomprehensible loss. The family must have the opportunity to carry out important family, religious, and/or cultural rituals and to hold the child before and after death. Members of the extended family, friends, primary care physicians, and religious advisors are to be included, if the family chooses. These individuals can support the family and each other during this time of crisis and in bereavement. A handwritten note of sympathy from the physician or attendance at the funeral can be healing for the family and the physician. In addition, an opportunity for either organ and/or tissue donation when feasible, and an explanatory meeting with the pediatrician to share the results of a limited or full autopsy may provide some comfort for a grieving family.

The death of a child who has been chronically ill presents added challenges. Parents grieve the loss of the expected normal child from the time of diagnosis of a condition likely to result in disability and childhood death. Often, these parents may find it difficult to accept the reality of impending death, perhaps because previous predictions proved inaccurate. For some parents, continued hope for cure, no matter how unlikely, may be an important coping mechanism or may conform to deeply held religious or cultural beliefs.

Working with children – as many children with chronic, life-shortening

122 illnesses are now living into adolescence and young adulthood. The pediatrician needs to acknowledge the child’s own recognition of the likelihood of premature death, to help the child communicate his/her wishes, and to plan for the child’s death. The pediatrician should assist parents in understanding and supporting the siblings of the ill child, all of whom are affected by the child’s condition and eventual death. Parents are to be supported in attending to the needs of the ill child and siblings while acknowledging the sadness that results from life-threatening illness. The child should be assured that he/she has done nothing wrong and is not responsible for his/her own illness or that of a sibling. Children should be encouraged to talk about their feelings of anger, sadness, fear, isolation, and guilt, or to express themselves through art or music therapy.

Pediatricians should provide families with developmentally appropriate guidance about these difficult communications; a. encourage parents of older children and adolescents to talk together as a family about their feelings. b. encourage the sharing of memories to facilitate bereavement and healing.

Families may benefit from the pediatrician with a child: the disease experience and developmental level of the child; the child’s understanding of and prior experience with death: a. the family’s religious and cultural beliefs about death. b. the child’s usual patterns of coping with pain and sadness. c. the expected circumstances of death.

The appropriate time to start a conversation about a child’s impending death is difficult to determine, as cultural beliefs must be respected. Denial by family members may provide some relief from the overwhelming sense of loss and pain. However, avoiding this conversation ignores the fact that ill children and their siblings are usually aware of their condition.

Children may maintain silence out of a desire to protect their parents, while feeling painfully isolated from those they need most. Hints that a child wants to talk about death may be subtle. Open and honest communication is usually most effective in relieving the child’s distress, allowing for mutual support and personal growth during the final phases of the child’s life.

123 After Glow

I’d like the memory of me to be a happy one. I’d like to leave an after glow Of smiles when life is done. I’d like to leave an echo whispering softly down the ways, Of happy times and laughing. times and bright and sunny days. I‘d like the tears of those who Grieve, to dry before the sun Of happy memories that I leave When life is done.

Hastening Death – the decision to forgo life-sustaining medical treatment does not necessarily imply an intent or choice to hasten the death of a child. Although a child’s life may be shortened by foregoing burdensome interventions or providing adequate sedation in the face of otherwise unrelieved symptoms, the goal of palliative care is to optimize the quality of the child’s experience rather than hasten death. On occasion, the relief of severe, progressive symptoms such as pain or dyspnea may require a rapid escalation in the doses of administered analgesics and sedatives. If the child becomes obtunded and less responsive, parents and staff may feel that the medication is to blame, rather than the disease process – a misunderstanding that is reinforced by referring to the procedure of “terminal sedation”. The child’s progressive deterioration and death may be attributable to the disease process and not the medication. Rarely, the relief of progressive symptoms may require deep sedation.

Dying with dignity and without pain or distress is the primary goal. If the child or adolescent requests euthanasia, the health care team is to respond compassionately, with a renewed focus on determining and alleviating the source of distress, including perceptions of abandonment, depression, loneliness, physical symptoms, and communication problems. Parents and families are never to be prevented from forgoing burdensome life-sustaining medical treatment under appropriate circumstances – regardless of worry

124 that others may view such a decision as euthanasia or suicide. With the provision of competent and compassionate palliative care, including the use of adequate analgesia for the treatment of rapidly progressive symptoms, requests to hasten death are generally abandoned. The informed decision of an adolescent or young adult nearing death to refuse further life- sustaining medical treatment ought to be respected - such respect does not imply the right of a patient to obtain assistance to commit suicide. The American Academy of Pediatrics is concerned about reports of involuntary euthanasia of infants and young children and of physician-assisted suicide of adolescents. The American Academy of Pediatrics does not support the practice of physician-assisted suicide or euthanasia for children.

The Dying Adolescent I know it’s all too late in coming… But…there were always things I meant to say… Things I always thought we’d share Later… When we were old…

Dying is never an easy process; neither is growing up. The death of a young person always seems more tragic than that of an older person. Dying for a very young child is difficult in the sense that it is hard to understand what is occurring, but dying for an adolescent, a person just beginning to live an adult life, may be the most difficult of all. The mere process of adolescence can be traumatic enough without having to face the possibility of its cessation. From so many aspects, dying teenagers are the greatest mourners of their own fate. Adolescence is the age at which people take their place in adult society, and thus, it is the age of the formation of the personality. This is the point in people’s lives when they are planning for themselves a life program and generally have many plans of change, not only for themselves, but also for the world around them. Adolescents are arranging their scale of values, placing some ideals above others toward their life goals. The life plan of adolescents is also their assertion of autonomy and indicates their willingness to plunge into adult life, as well as, their image of themselves as the equal of adults.

The four major tasks a person faces during adolescence are:

125  To develop a psychosexual identity – which do adolescents varying views of social behavior, as well as that of their parents and their peers accomplish. The varying ideologies proposed by society and the media further complicate the issue.  To resolve the conflicts related to dependence and independence. This age is a difficult transition from childhood to adulthood. The adolescent may be treated alternately as a child and an adult, and thus, displays rapidly changing behavior – one moment needing to be cared for and nurtured, the next appearing assertively and aggressively “adult”.  The development of a system of values, is a complicated and stressful procedure in which young people are torn between the values of there peers and those of their parents, while observing a society in which moral values often appear to be more than empty words.  The choice of vocational goals – in today’s society, where rapidly advancing technology has made this a complicated task, options are quite varied, but there are limitations.

Along with, and closely related to, the psychological development of the adolescent is the physical development. Puberty marks the onset of adolescence. Puberty is signified in boys by an increase in testicular size as spermatogenesis begins. Later signs are growth in size of the penis and scrotum and the presence of thick, curly pubic hair. In girls, the first sign of puberty is the appearance of the breast bud. This is followed by the growth of sparse hair along the medial edges of the labia. After this time, menarche occurs, and breast development continues throughout puberty. Although the outward sex organ changes are the prime indicators of puberty, there are multiple changes occurring in an adolescent’s body. Adolescent males grow rapidly in height and weight, their voices change, they develop facial hair, and many other hormonally mediated events occur. In females, there are marked outward bodily changes accompanying menstruation and breast development. Because of these bodily changes, adolescence is a period of marked narcissisms. In Batten Disease, puberty seems to occur earlier than normal.

Adolescence is a period of great turmoil physically, psychologically, and socially. Adolescents have passed the stage of viewing death as temporary, and their ideas approximate those of adults. Young persons have come to perceive the reality, totality, and finality of death. Although adolescents fully comprehend the irreversible nature of psychological death, it is during

126 this time of uncompromised idealism and search for values and ethics that they may invest death with some sort of spiritual continuation. Malignancies and other terminal illnesses present a complicated issue for adolescents. Even if an adolescent does believe in afterlife, the impact of dying, with all its deteriorating functions, is particularly difficult for an adolescent to bear. Young people, just at the point of achieving adult status, and what they perceive to be the freedom of action and choice, are acutely aware that their impending death means the loss of everything. The adolescent’s loss of control and independence, consequences of serious illness, also create problems in the dying adolescent, as does the deterioration of physical and sexual integrity brought about by illness and chemical and surgical interventions.

Another point that must be addressed is the legal aspects of these cases. Many youths are capable of forming opinions and making decisions, but legally they are still subject to parental decisions. Although each case must be treated individually according to the maturity of the given adolescent, such questions as “Should they be told of their diagnosis?” “Should they be asked to consent to mutilative surgical procedures?” “Do they have the full confidentiality in the patient-doctor relationship?”. These must be answered. The psychological problems displayed by the dying adolescent fall into four general categories:  Alteration of self-concept  Alteration of body image  Difficulty in interpersonal relationships  Interference with future plans Specific problems include loss of self-esteem, loss of hair, loss of an extremity, difficulty with friends and family, and questions about career education, marriage and death. When adolescents first learn their diagnosis, they undergo an alteration of self-concept. At an age when belonging is very important, the knowledge that they have a disease that requires a long-term treatment causes a feeling of inferiority and a loss of self-esteem. Their immediate concerns are not about the possibility of death, but about how the disease will make them different from others their age. Adolescents frequently wonder how their friends will treat them and whether or not they will be rejected. Because of this, adolescents will often go to great lengths to conceal their disease.

127 The second major problem encountered by adolescence with a life- threatening illness is alteration in body image. Since adolescents’ images of their own bodies undergo rapid change as their body matures physiologically, any change secondary to therapy only complicates their adjustment to this change. For example – loss of hair or of a limb.

Another problem encountered in adolescent patients is the difficulty in managing interpersonal relationships. Normal adolescents generally have some difficulty with interpersonal relationships because of their struggle between dependence and independence, which is intensified in the adolescent with a fatal illness. They may interpret their forced dependence on their parents and physician as weakness. Fear of rejection is very intense in adolescents with a fatal illness. Not only will they be burdened with the thoughtless remarks of peers as to their differences, but they may also be subjected to the over sympathetic, solicitous attitudes of parents and peers. They wish very much to be treated like everyone else. Although their peers react this way out of fear and sympathy, it is difficult for adolescents with a fatal illness to appreciate these efforts, which further complicate matters. It will probably be necessary for ill adolescents to educate their peers as to the nature of their disease, and thus allow relationships to be established on an altered but more normal basis. Overprotective parents may also pose problems. The gifts and favors they bestow on the ill adolescent may help alleviate their fear and guilt, but they place the adolescent back into an independence-dependence struggle. The physician-adolescent relationship is also very important. The physician must be trustworthy and honest with the adolescent patient, but at the same time try not to frighten or depress the youth. The physician must also spend time talking and listening to the adolescent on an adult-adult basis.

Finally, there is a problem of adolescents’ questions about the future. Adolescents with a fatal illness will ask questions about a future career, marriage and death. Generally, adolescents who have adjusted well to their illness are encouraged to make plans for a realistic future, with the understanding that these may be interrupted at some future time for treatment of the disease. Many adolescents, especially girls, wonder about the possibility of marriage as they watch their friends marrying and beginning families and due to some necessary drugs or radiation treatments may result in sterility.

128

Adolescents’ first questions about death may come upon hearing the diagnosis, but when feeling better, they may forget the possibility. The next realization that death is near may come with a relapse or when adolescents realize their condition is not improving. Although the adolescents are struggling to be independent, impending death may be too great an anxiety for them to cope with, bringing about depression or regression to childlike stages, both of which involve withdrawal of emotional energy from life. There may also be rage, usually directed at themselves for being so weak and imperfect that they cannot direct their lives to fulfillment. Guilt may also be present in dying adolescents. Since adolescence is normally a time of emancipation and testing of limits of one’s freedom, death may be viewed as due punishment for sins they feel they have committed. During the time of approaching death, it is vital that physicians do not merely view this situation as a failure and therefore avoid it. Not only should they make sure the adolescent is receiving proper palliation and pain relief, they should allow the same concern, reassurance, and sympathetic ear that were offered earlier in the illness as an integral part of total care.

It is impossible to fully understand the scope of the problem of dying adolescents without also dealing briefly with family members. Since teenagers have begun, through various degrees of alienating and confrontational behavior, to emancipate themselves from their parents and family, they may find it distressing to be forced into a dependent situation. This is a time in which, more than ever, adolescents need caring from their mother and father, and they face special problems of understanding and meeting these conflicts.

The first reaction of parents faced with the prospect that their child is dying is one of shock and disbelief. They may openly admit that they do not want to believe the diagnosis and may continue to deny the reality as long as possible. As a consequence of this denial, the parents may take the ill child from doctor to doctor seeking a more hopeful diagnosis. Although this can be carried to excess, it is therapeutic for the parents to at least obtain a second or third diagnosis to reassure themselves that they have done everything possible for their child. As the parents begin to face the reality of the impending death, they anticipate the loss of a relationship that has been extremely meaningful. In facing this loss, they may become very sad

129 and show little energy in day-to-day tasks. Even though the family members are sad, they usually are not depressed. Depression is marked by a loss of self-esteem, and in realization of the care and help they can give this dying child, they may achieve a deeper feeling of self-worth.

Guilt again plays a very large part in the family reaction. Mothers and fathers berate themselves for not forcing the symptoms earlier and brothers and sisters may feel guilty that they were not better protectors. Very often the family’s anger may be vented toward the physician and other members of the caring team. The treatment team must realize that this anger may be merely an integral part of the mourning process. As part of the mourning process, family members must begin to reinvest emotionally. They must begin to change their goals and their plans. They must start to rearrange the family constellation. Although this is very important, in some families the parents and relatives may abruptly withdraw their emotional investments from the child and the child becomes isolated and alone. This can sometimes occur almost as an agreement between the family and the dying child. Most children care deeply for their families and do not wish to cause them pain. They will therefore encourage their parents and family members to drift away emotionally, so as not to hurt them. Although parents may be anxious and fearful about the hospitalization of their child, they also may be eager for the child to be placed in a situation where they can deny the possibility that the child may die and develop unreasonable hopes for a cure to be received in the hospital. The family may also be very apprehensive when the child has a symptomatic remission and is allowed to return home. They fear they will be unable to cope with the child, and they fear they may hurt the child in some way. The mother bears the greatest burden of these family fears, and she may become so overprotective that she isolates the child. During the child’s illness and after death, the sorrowing family is expected to be depressed and withdrawn according to social customs. If the mother wears an especially colorful dress to cheer her, or the father attempts to relieve his tensions through a golf game, or a brother or sister appears too cheerful, they may be labeled as socially bad. This enforced isolation may become almost unbearable, and the family members can hardly avoid blaming the child for having made their lives so difficult. Although each family and each situation is unique, this is always a stressful and complicated process to undergo.

130 Physicians and all members of the treatment team undergo many of the same reactions the family members do in dealing with dying children or adolescents. In dealing with adolescents, physicians must realize that they are dealing with people who usually are more adult than child. Communication is the key in the treatment of dying adolescents. Not only should the adolescents have treatments and procedures explained to them, but also physicians should listen to them, too. Physicians should not only answer academic questions, but they should listen to and help the adolescents deal with their feelings. Physicians, like many people, strive to maintain a comfortable distance from the realities of death. The approaching death of children or adolescents places a great emotional burden on doctors, and they will deal with the stress as they have dealt with stress in the past. This may come in the form of worrying, compulsion, or intellectualization. Like the family, doctors have an emotional investment in the child, and must go through a mourning process. They must also go through emotional reinvestment, and like the family, must guard against doing this before the death of the child.

It is important that physicians do not view the impending death as a failure, and therefore withdraw from the child or adolescent, feeling there is nothing else they can do. It is vital that they provide, especially to the adolescent, the caring and understanding that they did throughout the illness. Although the case of the dying adolescent is a truly complex problem, through teamwork between the treatment team, the family, and the adolescent, many of the problems can be thwarted with caring, listening and understanding.

Home or Hospital Death Will My Child Die At Home or In The Hospital? To care for children as they are dying is an act of love. And living through the days leading up to the death of your child can be a very frightening and tiring experience. Death is as natural as birth, but much of society has been sheltered from it, and people very seldom discuss the topic until they are directly affected. Because you probably grew up not being exposed to death, you may experience a lot of fear and anxiety in regard to the dying process. Your doctor, your pastor, or other parents who have lost a child may be able to discuss this with you to help ease some of your fears. A home death may not be for everyone, and some families may feel more comfortable having their child die in the hospital. Most hospitals offer the privacy of a special

131 room, which also allows extended family members to be with the child, yet offering the constant support of the medical staff. At home, stress and fatigue, a lack of help in caring for the dying child, the lack of in-home nursing or the lack of equipment may leave parents feeling that they have no choice, and that their child must die in the hospital. If you feel your family and child would be more comfortable at home, it is often possible to arrange to have the needed support and care provided in your home. Discuss your wish for a home death with your child’s doctor. Home visits by the doctor during the last days can be of great benefit in helping to control any pain your child may be experiencing, and can also provide considerable emotional support to you as a parent. Your doctor should also be able to help you obtain in-home nursing or support services. In most of Canada, as well as in the United States, and many other areas in the world, support services, care, and equipment are available to families who wish to enable a child to die at home. Pre-arrangements in these areas can be essential if your family and child choose a home death. You stand a better chance of having your families wishes carried out if you have an adequate network of support in place before a crisis arises. You may be more comfortable having the support of other family members, such as grandparents, aunts or uncles, at your home with your family and the dying child. Let your wants and needs be known, talk about what is right for your family, and ask for the help you need.

If your child dies at home, you will need to inform your doctor, who will come to your home and complete a Medical Certificate of Death. The doctor must officially record the child’s death before a funeral director can remove the body. Once you feel that you have had enough time and are ready to release the body, you can phone a funeral home. You can request that they pick up your child’s body or you can take your child’s body to the funeral home yourself, if you wish.

If your child dies in the hospital, staff should be available to offer support when needed, but should also allow you time to be alone with your child’s body. Once again, take all the time you need to say your final good-byes. Do not let staff make you feel rushed. This is your child and you may need several hours before you are ready to part. Your child’s body will be kept in the hospital until a doctor confirms that your child has died, completes a Medical Certificate of Death, and obtains your authorization to release the body to a particular funeral home. Before the funeral, feel free to ask to see your

132 child again, if you wish. Palliative care for children seeks to enhance the quality of life in the face of an ultimately terminal condition. Children benefit from palliative care when no treatment has been shown to alter substantially the expected progressive illness toward death. Psychological, social, spiritual and cultural issues need to be addressed in the end of life care. This includes relief of symptoms (pain, dyspnea) and conditions (loneliness) that distress and detract from the child’s enjoyment of life. There is also an effort in palliative care to ensure that bereaved families are able to remain functional and intact.

Chapter 7

The Death Process

Questions and answers from Parents “How will my child die?” “Is my child dying?” “Is my child afraid? Every parent wants to know what is likely to happen at the end. Most of them have never had the experience to be with a dying person before and they want to know what to expect. Doctors are usually evasive in dealing with parents about this subject. It seems social workers and nurses answer these questions more than doctors. Parents want to know as soon as possible when their child is dying. Any preparation they had about the changes likely to occur lessened

133 their fear. Those who were able to communicate openly with their children and those who were not able to discuss death with their children learned from remarks they had made to others or learned from parents not to fear death and learned that they were not afraid.

Key objectives for an inpatient or home care hospice program Will I use life-support systems? What will dying be like? Can parents be there while their child dies? Can they hold their child? Most parents at the end realize that to prolong their child’s existence once it is apparent that the body can no longer function on its own is selfish and life support would be a useless effort. In some way, parents feel they can “let go”, that they can give their child permission to die. They each have to find some acceptance inside in order to let their child/children go. This does not negate their grief, but allows them to experience some measure of peace of death. Parents somehow feel at peace and relief, especially if their child had been suffering. It sometimes is comforting to see their children without equipment, to see their faces uncluttered by oxygen or other apparatus. Parents need and want quiet time alone with their child’s body. For some it was the first opportunity in a long while to hold their child. When death occurs at home, parents have no difficulty getting time alone with their child, but when death occurred in the hospital - sometimes the parents are forced to insist on this. For most parents, this quiet time alone with their child is a peaceful interlude in the midst of the turmoil before and after their child’s death. Some of them would have liked more time with the child’s body and regretted not having asked for it. Also, many parents do not know that they are not required to have an autopsy performed on their child’s body. Part of a hospital’s accreditation is based on the number of autopsies performed, so doctors ask, but parents do not have to consent. Also, if the funeral home has a refrigeration room, parents are not compelled by law to have the body embalmed (though there may be variations from state to state). These are things parents are not told unless they ask.

Planning for your child’s death – the death of one’s child has often been referred to as the ultimate loss in life. When you have watched your child suffer for many years and then are facing his/her imminent death, your emotional and physical strengths are pushed to the limit. Once your child dies, you may feel so distressed that you find it difficult to make choices and decisions about your child’s funeral. Because of this, it can be helpful to do some planning in advance. Some families may find this possible, while others may find the death of their child too painful to think about it. This is something that only you and your family know. And although you may find your child’s death too painful to think about now, in time you may wish to benefit from the experiences shared in this book and consider the advantages of preparing in advance. First, however, you must be aware that you may

134 experience some feelings of guilt. It is common and perfectly normal to experience feelings of guilt when you think about your child’s death and funeral arrangements while your child is still alive. It is also unnecessary. You can ease your mind somewhat by recognizing that pre-arrangements help remove much of the stress of decision-making at the time of the death. This can help reduce the emotional strain on you. Some children have wishes regarding where they want to die, or something special they wish to have at their funeral to be remembered by. Difficult though these wishes may be to face, they are your child’s own advance plans, and they may help you get started on making the other arrangements.

Consider an advance directive – advance directives are of two types. All states have some form of health care advance directive law, which provides for either a living will declaration or a health care proxy or both. 1. A living will – a person who does not want to have artificial life-prolonging procedures used when there is no hope for recovery might consider signing a living will. It is called a living will because the document takes effect while the person is still living. Typically, the declaration must be signed in the presence of witnesses who are not relatives. Someone holding a power of attorney or a guardian cannot sign the declaration on behalf of another person but they most likely can make decisions for the patient. This declaration states a person’s wishes in the event that the person can no longer speak on his or her own behalf. If I have a terminal condition, and there is no hope for recovery, I do not want my life prolonged by artificial means. You may want to add more specific language if you wish or even declare that you do want your life artificially prolonged. Physicians are likely to want to know that all the family members agree with a decision to withhold or withdraw treatment even if a living will has clearly stated the patient’s desires. A living will is dependent on a family being unified in making sure the patient’s wishes are honored. The realities of these limitations of living wills emphasize how important it is to have an open, honest, family discussion about treatment choices.

A Living Will gives your Physician the authority to withhold all life-sustaining treatment and permit you to die naturally and take no action to postpone your death, providing you with only that care necessary to make you comfortable and relieve your pain. This may include writing a DNR (Do Not Resuscitate) order or withdrawing life-sustaining treatment such as CPR (Cardio-Pulmonary Resuscitation). Such “comfort care” also may include removing nutrition and hydration (food and water) that is administered through feeding tubes or intravenously. If you wish to give your physician this authority if you become permanently unconscious, there is a space on the Living Will form you must initial. If you want nutrition and hydration to be continued, regardless of the

135 circumstances, do not initial this space.

A living will is a written directive in which a person expresses his/her wishes to have life-sustaining treatment withheld in the event of terminal illness. Living wills are valuable because they allow people control over what kind of treatment they wish to receive, and thus avoid the prospect of lengthy, lingering deaths prolonged by modern medicine. Through a living will, you can ask not to be resuscitated if your breathing stopped, and can specify the conditions under which a “Do Not Resuscitate” order should be enforced. A DNR order should be placed on your medical chart. Such an order can also be requested orally or, if you are not able to make such a request, a medical surrogate or a family member can do it. A living will is not forever binding; it can be amended or revoked to reflect changes in your thinking. Deciding how to treat terminally ill people has become a complex question in this medically advanced age. Many people now worry about being kept alive by artificial means long past the point of what they consider to be a meaningful life. Other people do not have these concerns and would prefer to have their lives prolonged as long as possible. These views may change with time or circumstances. Some terminally ill patients may wish to continue treatment as long as their pain can be controlled but may change their minds about treatment if their pain becomes overwhelming. 2. A Durable Power of Attorney for Health Care – (also called a Health Care Proxy) – gives the person designated in the document authority to make any healthcare decisions on behalf of patients who cannot make decisions for themselves. It covers all healthcare decisions whether or not they relate to terminal illness. The job of the person designated to make decisions is to choose, as the patient likely would have decided. Many states now have standard forms to use, or you may want to contact a lawyer for advice regarding this document. Health Care Power of Attorney lets you appoint someone to make health care decisions for you if you become unable to express your wishes. This appointed person has the power to authorize and refuse medical treatment for you. 3. DNR – Do Not Resuscitate-a person who does not wish to have cardiopulmonary resuscitation performed may make this wish known through a physician’s order called a DNR order. A DNR order addresses the various methods used to revive people whose hearts have stopped functioning or who have stopped breathing. Examples of these treatments include chest compressions, electric heart shock, artificial breathing tubes, and special drugs. 4. CPR – Cardiopulmonary Resuscitation – Includes any or all of the following – administration of chest compressions, insertion of an artificial airway, administration of resuscitation drugs, defibrillation or cardio version, provision of respiratory

136 assistance, initiation of a resuscitative intravenous line, and initiation of cardiac monitoring. 5. Will – is a document for your home and personal affects and who you want to have control over how to dispose of your estate once you die. 6. The Federal Law of 1986 – Omnibus Budget Reconciliation Act states all hospitals that receive Medicare or Medicaid funding must have policies in place to identify potential organ donors and to inform families about the option of donation. But the laws do not require the consent of the family to retrieve organs if the donor has already declared his/her wish to donate – say, on a donor card.

Providers are often reluctant to act without a family member’s permission because they are afraid of being sued. Another reason is concern about generating bad publicity – accusations that a provider, hospital, or organ procurement organization (OPO) ignored a family’s wishes could harm the efforts of organ donation programs. To overcome these obstacles, some states have started to legislatively limit the family’s involvement in the donation process. Pennsylvania, for example, explicitly provides that organs can be retrieved based on a patient’s donor card alone; the family does not need to be asked for consent. (In practice, however, the family is still asked for their consent.) Texas and Virginia have enacted “mandated choice” laws, which require all licensed drivers to decide and publicly record on their drivers’ licenses whether they wish to donate their organs upon their death. In Virginia, they also have the option of declaring that they are undecided about donation. This information is binding and cannot be overridden by family members unless the donor granted them veto power.

Other less controversial laws have focused on more aggressively identifying potential donors at the time of death. Within the last several years, at least two routine referral laws – one in New York and one in Pennsylvania – have been enacted. These laws require providers to notify the regional organ procurement organization about all deaths when they occur or are imminent. These laws shift the burden of discussing organ donation from primary care providers, on whom it has traditionally fallen, to a representative from the OPO, who will determine whether the patient is a suitable donor and approach the family about donation.

Locating next of kin If a deceased individual has not made a decision about organ donation, certain family members have the right to give consent to organ procurement. The list of relatives in order of priority is as follows: 1. Spouse

137 2. Adult son or daughter 3. Parent 4. Adult brother or sister 5. Grandparent 6. Legal Guardian

Provide accurate information One principle that courts have universally upheld is that those seeking consent must provide the next of kin with complete and accurate information. Family members should be told, among other things, what organs will be recovered and how, the effect of organ recovery on the donor’s body, and the fact that they will not incur any financial costs for the donation – such as the cost to maintain the body prior to organ recovery.

Knowing What to Expect The numbness and shock parents feel when facing decisions surrounding the death of their child often leave them feeling too distressed to think constructively. It is important for them to know that they are not alone in their grief and confusion. It is also important for parents to be aware of some of the emotions they will experience. Among these are anticipatory grief, denial and shock.

Anticipatory Grief and Denial When their child is diagnosed with a terminal disease, parents often experience anticipatory grief. Anticipatory grief is experienced much as grief is after a death, with emotions of denial and eventually acceptance. Denial during a terminal illness can last much longer than it does after a death, especially if the illness lasts for years. A parent often maintains denial through feelings of optimism and hope for a treatment or cure. Over the years, these feelings alternate with periods of despair and depression. Acceptance of a terminal disease comes and goes. Denial is generally prolonged if your child looks healthy and if you retain feelings of hope. 1. Shock - Even though you have knowledge of your child’s impending death, you may not always have reached acceptance by the time your child dies, and thus, your first reaction may be shock. When a child dies unexpectedly, the shock to the family can be devastating. However, it is important to recognize that even if your child has a terminal illness, you may still react with shock when your child actually dies. 2. Saying Good-Bye - At the time of your child’s death, take as much time as you need to say good-bye. You may wish to hold your child’s body for some time. Do not feel rushed. You and your family should take all of the time you need. During these last

138 good-byes, some families like to dress their child in special clothes, take final pictures, or keep a strand of hair.

Treatment options versus goals – all too often healthcare professionals focus on treatment options with patients and families rather than the goals the treatments might or might not serve. At least four major problems result:  We run the risk of encouraging false expectations about prognosis or the outcome of treatments. For example – do you want CPR? Will it cure the patient, return lost functions, or merely sustain life? These types of distinctions are critical to reaching an understanding of the situation and making a decision.  We may encourage reductionistic thinking about limiting treatment. By focusing on specific treatments, a family or child (if competent) may infer that refusing one treatment means refusing all treatments. For example, one may refuse CPR, but accept antibiotics for pneumonia.  We fail to identify the goal or goals of treatment from the child’s perspective. We need to know what the child or family hopes to achieve whether it be mere biological existence at all cost, or to be kept comfortable and pain free in the last days.  We will increase the likelihood of uncertainty and misunderstanding later on. It is possible that there may be disagreements between the health care team and the family over what goals are worth pursuing, but at least the disagreement is out in the open. It is important to make an effort to maintain open, mutually respectful communication. This communication should clearly distinguish between technical, medical facts over which treatments work and which do not and the goals of treatment. 3. Spiritual beliefs and clinical decisions – Pain can negatively affect the whole self. Physically, the body is unable to obtain true rest. Emotionally, we are attempting to bring all our conscious energy into reaching some level of balance to cope with the pain. Spiritually, there is difficulty focusing on God and prayer. All three. 4. The Four Most Common Decisions – the “hard choices” are found in four questions that require treatment decisions:  Shall resuscitation be attempted?  Shall artificial nutrition and hydration be utilized?  Should a nursing home resident or someone ill at home be hospitalized?  Is it time to shift the treatment goal from cure to hospice or comfort care only?

139 5. Goals of Medical Care – what outcomes can we reasonably expect from medical treatment, given the current condition of the child?  Cure – almost all health care today is directed toward the prevention or cure of diseases. We become sick. The physician prescribes a treatment. We are cured.  Stabilization of functioning – many disease processes cannot be cured, but medical treatment can stabilize the functioning of a child or, in other words, temporarily stop the disease from getting worse. We have no cure for diabetes, but a person can take insulin injections for a lifetime and function fairly well.  Preparing for a comfortable and dignified death - this is the hospice “comfort care only” or palliative care approach. 6. Practical Help for Decision Making Treatment decisions are arrived at through an agreement among the physician, the child if able and the parents/family. The medical team needs to know what the wishes of the patient are in regard to treatment decisions. There are several things you can do to arrive at a treatment plan and to see that the plan is implemented. 7. Questions to help make a decision: a. What is the agreed-upon goal of medical care for my child at this phase of life? The three possible goals are: cure, stabilization of functioning, or preparing for a comfortable and dignified death. Remember the goals can be “combined” and will probably change over time, so this and all these questions may need to be revised from time to time. b. What does the patient want? Ethicists call this the question of autonomy. A patient with decision making capacity who can handle the emotional impact of these questions about life-prolonging procedures can answer without help. If the patient can no longer answer without help, then try to imagine what the patient would have said. To a family who knows the patient’s wishes but is hesitant to carry them out, you might respond by saying, “Sounds like your father has already made up his mind. The question is, are you going to honor it?” c. What is the best interest of the patient? This is the question of values. Some say it is best to keep a patient alive at all costs. Others say it is best to allow a patient to die and not prolong the dying process with artificial means. d. What are the prognosis and probable consequences if a certain treatment plan is followed? This is a question to discuss with a physician or experienced nurse. What are the chances of survival after using CPR? If the patient survives, what condition might the patient be in afterwards? Does the physician

140 anticipate just a temporary use of a feeding tube (or other machines)? Or might the patient live indefinitely, nonresponsive in a debilitated state? If we try a temporary use of the treatment and the treatment and the patient does not improve significantly, can the treatment be discontinued? Might death be expected, given the medical condition of the patient? If death would be acceptable and expected, might we try not to cure any condition but prepare for a comfortable and dignified death? e. Can I let go? If the answers to the first four questions point to treatment decisions arrived at through an agreement among the physician, the child if able and the parents/family. the medical team needs to know what the wishes of the patient are in regard to treatment decisions. There are several things you can do to arrive at a treatment plan and to see that the plan is implemented. 8. What to do: a. Discuss the issues – these issues need to be discussed by the patient, parents/family, and physicians who have the mental and emotional capacity for such a discussion. It is best to have this discussion before a crisis occurs that would require a decision in a time of stress. As with any treatment, you are entitled to a second opinion from another physician. If you have a difference of opinion with the attending physician, then you have a legal right to transfer the patient’s care to another physician. Likewise, a doctor who feels he/she cannot ethically carry out the requests of a family or patient may withdraw from the case. b. Make an intentional decision 1. You want all life-prolonging measures – after you have discussed the treatment options and decided you would like to have life-prolonging measures usually no special orders are required. These are standard procedures and will most likely be applied if there is no order restricting them. 2. Cardiopulmonary Resuscitation (CPR) – we need to ask ourselves a. How successful are efforts to restart a heart? b. Can we know ahead of time which patients are most likely not to be revived by resuscitation efforts? c. How do children let their wishes be known if they choose not to have resuscitation efforts? d. You do not want CPR – if you do not want CPR used, then ask the physician to write a “do not resuscitate” (DNR), “no CPR”, “no Code” order on the medical record of your child. If your child is at home

141 or a nursing home, you may also ask the physician to have it written on his/her chart in the office. 1. The evidence overwhelmingly shows that CPR is not able to restore most patients who are at the end of a life-threatening illness to their previous level of functioning; CPR is of no medical benefit to these patients. 2. The real choice is whether the patient will die a more peaceful death or one spent in its final moments with all the force of our medical aggressiveness attempting to reverse certain death. 3. But refusing resuscitation attempts is not giving up hope on life. It is facing the fact that there is no hope that CPR will save the life of the patient. 4. Most often the loving thing to do is to let him/her die in peace without the aggressiveness of CPR.

Children with the greatest chance of survival:  Those who experience a certain kind of abnormal heart rhythm – ventricular tachycardia or fibrillation).  Those with respiratory arrest only.  Those who were generally healthy and the cardiac or respiratory arrest was their only medical problem. Children with the least chance of survival:  Those who have more than one or two medical problems.  Those who do not live independently or, in other words, are dependent on others for their care or live in a long-term care facility like a nursing home.  Those who have a terminal disease.

Burdens of CPR:  Ribs may be broken, lungs or spleen may be punctured due to the necessary force applied during CPR.  If too much time has elapsed without oxygen – there may be brain damage and then changes in personality and intellect to possibly permanent unconsciousness.  Children may be permanently placed on a ventilator – he or she may not have wanted this to happen.  CPR reduces the possibility of a peaceful death.

142 CPR with Children:  Age is not a factor in being successful.  What makes the decision not to do CPR so difficult for parents is the overwhelming sense of loss for the parents and for the medical staff. It symbolizes the lost future of the child and lost hopes of the parents.  The most difficult part is letting go.

3. Ventilators When a patient’s breathing fails, a machine may be used to aid the patient. This machine is called a ventilator or respirator. a. Ventilators are commonly used to support respiratory function during and after anesthesia for major operations. When a ventilator is used, the machine is connected to a tube, which is inserted through the mouth and down the windpipe, allowing the machine to force air into the lungs. b. Sometimes the tube is surgically connected through the throat and directly into the windpipe – this is called a tracheostomy or trach. The tube is uncomfortable and often a patient’s hands need to be tied down or the individual is given medication to prevent pulling at the tube, which could dislodge it and cause harm, plus, there is always a great chance of infection/pneumonia with an open avenue to the lungs. These uncomfortable side effects are acceptable to most people, because the tube and ventilator are removed as soon as the need for them is gone. But for others, with a long history of disease, will have to face the possibility of being on the “vent” for the remainder of their life. You would then have to make a decision whether to leave them on the vent permanently or at some point make remove them and support them with oxygen and medication to address their fear of being short of breath. If you would decide to remove them from the vent, they may not die immediately, or again they may die immediately. If they do die immediately after the removal from the machine, the death is from the disease that caused the respiratory issues and not from turning off the machine. By removing the machine, we are allowing a natural death to occur that would have happened earlier if the machine had never been started. c. You do not want a feeding tube inserted – if you do not want a feeding tube inserted, discuss this with the physician. Generally, you

143 have several days to several weeks to make such a decision if a crisis does occur. d. You want artificial feeding withdrawn – again discuss this with your physician. You must prepare yourself, your family and friends emotionally to have such an order carried out. Any of these treatment decisions requires deep emotional involvement, but the decision to withdraw artificial feeding is especially trying. The question of artificial hydration and nutrition is not quite as clear. 1. As with any terminal condition, one has the right to refuse artificial feeding, just as one has the right to refuse CPR or a respirator. 2. Ideally, people should make an intentional choice either to accept or refuse artificial feedings. 3. Like the patients in a permanently unconscious state, artificial feeding for those with end-stage Alzheimer’s or other dementias may be a totally inappropriate treatment. 4. As in the case of CPR, treatment has become symbolic for the family and has little medical benefit for the patient.

Artificial Hydration and Nutrition: 1. What are some of the benefits and hazards of artificial feeding tubes? 2. What are some of the advantages of dying without the use of artificial feeding or IVs? 3. When a child can no longer take food or fluid by mouth, a feeding tube can sometimes be used to overcome this disability. Tubes usually come in one of two types. The nasogastric (NG) tube is inserted through the nose, down the esophagus, and into the stomach. The gastrostomy (GT) tube is a tube inserted surgically through the skin into the stomach wall. Liquid nutritional supplements, water, and medications can be poured into the tube or pumped in by way of a mechanical device. There is also the less common TPN, when a catheter (needle) is inserted in a vein, often in the chest, and a liquid containing nutrients is pumped directly into the blood stream, by passing the digestive

144 system. A common method of hydration, especially in hospitals, is the IV line. Through a plastic tube (catheter) in the arm, a patient can receive fluids and medications. The process of inserting the IV can be uncomfortable and may need to be changed fairly frequently to avoid infection and irritation. If patients pull at the tubes, their hands may need to be restrained.

The burdens of artificial feeding: 1. Pneumonia can develop if the tube becomes displaced or if regurgitated fluid (vomit) enters the lungs. 2. Ulcers and infections can result from a feeding tube. 3. A patient who constantly removes the tube will probably need to be restrained by tied hands or sedation. 4. Patients become prime candidates for bedsores and stiffening of the limbs from lack of movement. 5. Patients can become more isolated from personal interaction because there is no one to sit there and feed them three times a day.

The benefits of NOT using artificial hydration (for example, an IV or feeding tube) in a dying patient: 1. Less fluid in the lungs and, therefore, less congestion, making breathing easier. 2. Less fluid in the throat and therefore, less need for suctioning. 3. Less pressure around tumors and, therefore, less pain. 4. Less urination and, therefore, less need to move the patient for changing the bed and less risk of bedsores. 5. A natural release of pain-relieving chemicals as the body dehydrates. Some have even described it as “mild euphoria”. This state comes with no food intake also suppresses appetite, and causes a sense of well being. The medical evidence is quite clear that dehydration in the end stage of a terminal illness is a very natural and compassionate way to die. 6. Less fluid retained in the patient’s hands, feet, and the

145 whole body in general. Forcing fluids into a person whose body is shutting down can create an uncomfortable buildup of fluids.

The only uncomfortable symptoms of dehydration are: 1. Dry mouth and sense of thirst, both of which can be alleviated with good mouth care and ice chips or sips of water, but are not necessarily relieved by artificial hydration.

No matter what the treatment choice regarding feeding tubes, comfort care and freedom from pain are essential goals of any medical team. Just because extraordinary or heroic measures have been withheld or withdrawn does not mean that routine nursing care and comfort care are withheld. A patient will always receive pain medication, oxygen, or any other treatment deemed necessary to ensure as much comfort as possible.

The difference between withholding and withdrawing – from moral, ethical, medical, and most religious viewpoints - there is no difference between withholding and withdrawing. Emotionally, there is a world of difference. And as much as we would like to think physicians do not make decisions and recommendations based on emotion, it is difficult for them to suggest a change from using the tube to withdrawing.

Tube feedings will extend the life of a Batten child. A child can still eat solid food even though he has a tube (unless a Nisson fundoplication procedure has been done where the surgeon ties off the top of the stomach). You just need to be aware of any possibility of aspiration as the disease progresses and the inability to swallow worsens.

Tube feedings can also cause the following: Overfeeds Vomiting Reflux

146 Diarrhea Constipation Stoma care Keep hands off Uncomfortable first few days Pump versus gravity feed Residuals Extra water Medications Plugging the tube

No matter whether you choose for or against a feeding tube, you can find plenty of company. Religious leaders, ethicists, politicians, nurses, and physicians are divided on this issue. If the patient cannot make the decision, the family will have to decide on behalf of the patient. They will have to live with their decision, which may be a difficult burden to carry. I am convinced that this burden is heavy because of the emotional spiritual struggle of the family in letting go. Medicine, law, ethics, and morality all are affected by this emotional struggle. It is understandable that people struggle with this issue. We are letting go of someone important to us. Even when it makes perfect sense, from a medical viewpoint, to withhold or withdraw artificial feeding, it can still be hard. Feeding tubes can help many patients get through temporary times of eating difficulties and other patients choose to use one permanently after they have lost the ability to swallow.

When your child is unable to swallow medications a gel is available to reduce the symptoms of nausea, vomiting and anxiety at the end of life. It is a compound of ABHR – Ativan, Benadryl, Haldol, and Reglan. Tell the caregiver to wear gloves when applying the gel to the child’s inner wrist every 4-6 hours as needed.

Also ABH as above in a suppository. Levsin, Atropine, Scopolomine, and Hyoscyamine to lessen secretions.

147 Sleep agents: Restoril/Temazepam, Ambien/Zolpidem, Sonata/Zaleplon e. You do not want to hospitalize a nursing home resident or someone living at home – if you want to consider a “do not hospitalize” order, contact your physician. Explore options for keeping your child comfortable and reaching the medical goals without a transfer to the hospital f. You want a “comfort care only” order or wish to receive palliative care – this is an order the physician must write, so contact him/her to make it official on medical records g. You would like to consider participation in a hospice program – a physician may refer you to a hospice program or you may look in a phone book and find one yourself. 3. Hospitalization a. Sometimes it is necessary to transfer your child to a hospital, but most of the time a patient can stay at home if that is the wish of the patient and be treated just as well. 4. Hospice and the “Comfort Care Only” Order a. Changing Treatment Goals 1. Those who are making medical care decisions for a patient to the wide range of what is acceptable from legal, ethical, moral, and medical points of view need to be discussed with the patient’s physician. 2. Perhaps those who choose life-prolonging treatments for failing patients do so primarily out of an inability to let go and not out of moral necessity or medical appropriateness 3. Decision makers do not usually have a change of mind about ethics, law, morality, or religion. They have a change of heart. They finally come to the point of being able to let go. b. The emotional nature of the struggle- treating the wrong patient – sometimes it seems easier to aggressively treat patients, perhaps even for years, than to help families confront the emotional and spiritual issues that are driving the treatment choices. Indeed, physicians are trained to order medical treatments and not necessarily to help patients and families with the more difficult struggles in their souls. It is understandable that they would address a family’s emotional struggle by ordering aggressive treatment of a patient. The problem is, they are treating the

148 wrong patient! c. Can I let go? 1. A natural response to the possibility of losing someone is to hold on tighter or to try to gain more control. Ironically, this does not lead to a life of freedom and joy, the very things we were pursuing. 2. Letting go is a way of life that can be experienced throughout our lifetime. Grasping, controlling individuals tend to be so to the very end of life. Those who live life with a sense of lift and grace also tend to do so to the very end of life. How we die will be an expression of how we have wanted to live, and the meaning we find in our dying is likely to be the one with the meaning we have found in our living. A person who has learned how to let life go may have not only a richer and more flexible life, but also one that better prepares him for his decline. 3. The Spiritual Nature of the Struggle – after the breath of life has gone out and blood no longer gives vitality to the flesh, what is the meaning of this person’s life? Sadly most people spend much of their life avoiding this ultimate question. We need to either accept or not accept the certainty of our own death and the deaths of those we love – when making end of life decisions becomes, at bottom, a spiritual issue. 4. Giving Up and Letting Go – We die in trust and grace or in fear and struggle. Can we let go and live life out of grace or must we hold on out of fear? 5. Occasionally, a family member will say, “I know my father would never want to be kept alive like this. I know it would be best if he just died. I know there is no hope of his recovery. But I can’t let go”. Most often, the view of what is medically, ethically, legally, morally, or according to my religion, appropriate treatment is totally influenced by the question, “Can I let go?”

Giving Up and Letting Go

Giving Up implies a struggle – Letting go implies a partnership Giving up dreads the future – Letting go looks forward to the future

149 Giving up lives out of fear – Letting go lives out of grace and trust Giving up is a defeat – Letting go is a victory Giving up is unwillingly yielding control to forces beyond myself – Letting go is choosing to yield to forces beyond myself Giving up believes God is to be feared – Letting go trusts in God to care for me.

The Journey to Letting Go The Four Treatment Decisions

Getting help with end of life decisions – are decisions regarding life - prolonging procedures black and white? NO! They are often shades of grey. As you gather more information, the answers will become clearer. Physicians, nurses, clergy, and social workers are just a few of the people who can help you sort out the decision. The medical staff caring for the patient will be as supportive as possible, no matter what the treatment decision.

Cure sometimes – Comfort Always: ”Hospice, Palliative care, and the “Comfort Care Only” Order

When is it the “right time” to “prepare for dying”? What is hospice? How can I try to assure that there will be a peaceful death? What is appropriate care for end-stage? What are some of the issues one needs to consider when thinking about hospitalization, ventilator support, dialysis, or the use of antibiotics? How do I communicate my treatment wishes to the medical team caring for me? 1. What are some questions that need to be answered to help me make a decision about life-prolonging procedures? The burden of hospitalization for the nursing home patient or patient living at home include the following: a. Increased possibility of anxiety of contracting infection. b. Increased possibility of the use of restraints or sedation, especially for dementia patients. c. Increased possibility of aggressively treating any condition because that is

150 the ordinary practice in the hospital. d. Increased possibility of diagnostic testing that may be burdensome or painful and is readily available in the hospital. The testing may be especially burdensome if the patient or family already knows it would not seek treatment for any disease the tests might reveal.

2. Dialysis Kidney failure can happen in one of two ways. Persons who have had kidney (renal) decline for a number of years can eventually move into what is known as end-stage renal disease. Others may not have had problems before, but in a short time their kidneys fail in what is known as acute renal failure. Both are very serious conditions, and some patients may be helped with dialysis. In this treatment, blood is circulated from the body of the patient, through a machine that “cleans” the blood of impurities, and pumps it back into the patient. Recently one of our children with Batten Disease developed this condition. He was in the hospital for 45 days and on dialysis for part of that time, but was able to go home with his kidneys functioning again on their own.

3. Antibiotics Throughout most of our lives, antibiotics are routinely taken to cure infections. But toward the end of life, one might consider not using these medications to allow a natural and peaceful death to occur. Your doctor can help you sort through the pros and cons of withholding antibiotics. The physician can also find ways of assuring that the patient will be kept comfortable even though antibiotics are being withheld.

4. Pain Control Most life-threatening and terminal diseases have pain as a common problem. Fortunately, much can be done to reduce and eliminate any pain. Others factors besides the disease itself can make pain worse. Depression, spiritual distress, broken family relationships, or lack of sleep can all contribute to increased pain. Likewise, we know that many factors besides drugs can alleviate pain. These are just a few of the things that can contribute to less pain: spiritual counsel from clergy, family or friends; meditation; music; guided imagery; prayer; hypnosis; visits from family or friends; massage; and many others. When you assess your child’s pain, ask questions like these to get a full picture of his/her pain experience. a. Can you point to the pain or is it everywhere? b. Does it travel? If so, where? c. How do you rate your pain on a scale of 0 (no pain) to 10 (worst pain ever) d. How would you describe your pain (dull, aching, lancing, burning, sharp, itching,

151 throbbing, squeezing, or tingling)? e. Is pain always present or does it come and go? f. Does it come on quickly or build slowly? g. What relieves your pain? What aggravates it? h. What adverse reactions have you had? i. What treatments, including medications and complementary therapies, have you tried so far? How did each one work? j. What do you think is the reason for the pain? k. How is the pain affecting your life, your emotions, and your relationships?

Here are the facts regarding pain control: 1. Doctors and/or nurses should ask patients regularly if they are experiencing pain. Never accept pain as inevitable. Always inform your healthcare providers if you are experiencing pain. 2. It is important to take pain medication as prescribed. The goal is to stay “ahead of” the pain not just respond when the pain gets unbearable. 3. Many patients remain clearheaded while taking pain medications. Others may experience some drowsiness. 4. The drowsiness associated with some pain medications usually decreases after several days of taking the medicine. 5. Medications used to control the pain DO NOT become addictive to people who have not had addiction problems in the past. 6. Physicians usually increase doses of narcotics, like morphine, until they find the level needed to control pain. This increasing of dosages is called “titrating”. Pain medication that is titrated slowly WILL NOT shorten the life of a patient no matter how high the dosage.

Some patients may choose to be completely sedated (made unconscious by medications) in the last hours or days of life if it is necessary to control pain or other symptoms.

Pain Management in Children with Batten Disease Pain is defined as an unpleasant sensory and emotional experience arising from actual or potential tissue damage or described in terms of such damage. Pain includes not only the perception of an uncomfortable stimulus but also the response to that perception. Approximately one half of the persons who seek medical help do so because of the primary complaint of pain. Pain may arise in nearly any organ system and have different characteristics in each. Musculoskeletal pain often is exacerbated

152 by movement and may be accompanied by joint swelling or muscle spasm. Myofacial pain is marked by trigger-point tenderness. Visceral (internal organs) pain often is diffused or vaguely localized, whereas pain from the lining of body cavities often is localized precisely, very intense and precisely and exquisitely sensitive to palpation or movement. Neuropathic pain usually stings or burns. Colicky pain fluctuates in intensity from severe to mild and usually occurs in waves. Referred pain results when an injury or disease occurs in one part but is felt in another.

Several factors influence the experience of pain. Among these are the nature of the injury or illness causing the symptom; the physical and emotional health of the patient; the acuity or chronicity of the symptom; the social milieu and/or cultural upbringing of the patient; neurochemistry; memory; personality; and other features.

Most Physicians need to know several things before prescribing pain medications. This list includes a description of the following: the character, onset, location, duration, what exacerbated and what relieves the pain?

Three Ways To Hurt 1. Acute pain follows an injury and should end after healing. Patients experiencing acute pain may be anxious and may have vital sign changes such as tachycardia, nausea, diaphoresis, or hypertension. Acute pain serves only to warn the body that it has been injured. Beyond that, it has no value. If it is allowed to persist, pain can cause permanent changes in the central nervous system and the patient may develop a chronic pain condition. Current recommendations encourage health care providers to treat acute pain aggressively and to avoid deferring analgesia, even if a diagnosis has not been made. Be alert for under treated acute pain and work with the health care team to relieve it. 2. Chronic or persistent pain lasts beyond the normal healing period. Previous definitions considered pain chronic if it lasted more than 3-6 months - the new definition is more flexible. A debilitating condition, chronic pain is surprisingly widespread: 42% of U.S. households report one or more persons with chronic pain. Common complaints are low back pain, arthritis, fibromyalgia, and neuropathies, but many people report pain who is also suffering without a specific diagnosis. Someone with chronic pain who is also suffering acute pain may be especially challenging to treat because of the physiologic changes that occur over time with persistent pain. 3. Neuropathic pain is chronic pain caused by nerve damage. The patient may describe it as burning, tingling, numbness, or shooting pain.

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As long as our children with Batten Disease can tell us where they are having pain, we can treat them and keep their pain levels adequately controlled. But when the disease process begins to deteriorate and the child has difficulty speaking, we, as parents, may begin to question if what our child is telling us is exactly what they mean. So, we as his/her parents, have to take the initial steps to make sure that our children our pain free to the best of our ability. When the latter stages of Batten Disease seen in all of the forms, there may be many reasons at this stage why our children could be having pain, which may include the following to mention a few. a. Extremities become stiff and rigid possibly contractures and spasms. b. Scoliosis, which can involve respiration if severe enough. c. Brittle Bones – may involve dislocated hips . d. Pressure sores on buttocks, elbows, feet, ears, etc. e. Infections – pneumonia, urinary tract, around feeding tube. f. Inadequate nutrition, hydration.

Depending on each individual child with Batten Disease the following lists may be some indicators of how our children can tell us how they are having pain. Vocal a. Moaning, whining, whimpering (fairly soft). b. Crying (moderately loud). c. Screaming/yelling (very loud). d. A specific sound or word for pain.

Social a. Sociable. b. Not cooperating, cranky, irritable, unhappy. c. Less interaction with others, withdrawn or depressed. d. Seeking comfort or physical closeness. e. Being difficult to distract, not able to satisfy or pacify.

Facial a. Does not smile when usually smiles. b. A furrowed brow. c. A change in eyes, squinting of eyes, eyes wide open, eyes frowning. d. Turning down the mouth, not smiling. e. Lips puckered up, tight, pouting, or quivering. f. Clenching or grinding of teeth, chewing or thrusting tongue out.

154 G. Looks worried or frightened. h. Normal for INCL (Infantile Batten Disease) or LINCL (Late Infantile Batten Disease to thrust tongue – would be significant for JNCL. (Juvenile Batten Disease)

Activity a. Not moving, less active, quiet. b. Jumping around, agitated, fidgety, or restless. c. Self-harm – biting self or banging head. d. Twisting and turning, tosses head, writhes or arches back. e. Startling incidents.

Body and Limbs a. Floppy. b. Gesturing to or touching part of the body that hurts. c. Protecting, favoring, or guarding part of the body that hurts. d. Flinching or moving the body part away, being sensitive to touch. e. Moving the body in a specific way to show pain – head back, arms down, or curls up. f. Resists being moved. g. If normally floppy, then suddenly becomes stiff, may be significant. h. Curling up can also be significant in specific cases.

Physiological a. Shivering. b. Change in color, pallor. c. Sweating, perspiring. d. Tears. e. Sharp intake of breath, gasping. f. Holding breath. g. Flushed face.

Sleeping a. Disturbed sleep. b. Naps for short periods. c. Barely sleeps. d. Sleeps more than usual – significant on an individual basis.

155 How do we fit into this list? a. Vitals – BP, Pulse, respirations. b. When was the last bowel movement. c. Fluctuations in body temperature. d. Increase in seizure activity. e. Menstrual cycles. f. Weekly vitals for baseline. g. Vomiting/diarrhea. h. No expression.

Barriers to effective pain management a. Pain in children is often under treated – reason may be a myth about pain and pain management may prevent the timely and appropriate treatment of children. b. Fears held by parents and health care professionals of too much pain Medication or addiction issues. c. Inappropriate pain assessment tools. d. Correct knowledge of pain assessment.

Goals of Pain Management in children with Batten Disease a. The child can sleep undisturbed by pain. b. Side effects from pain medication will be prevented or minimized. c. The child is pain-free when at rest. d. The child can move about or be handled without discomfort. e. The family is educated regarding the pain treatment plan. f. The family is involved in choosing the most effective and appropriate pain manager for the child. g. The family is able to identify increasing pain and provide analgesics to relieve the pain in a timely manner.

Principles for Managing Pain in Children with Batten Disease a. Consider the concept of complete pain control at all times and conduct a thorough bodily assessment of the pain. b. Titrate pain medications as needed. c. Avoid unnecessary delay in treating the pain, especially if it is severe. d. Consider adjuvant therapy at all stages. These drugs have little or no

156 intrinsic analgesic activity but produce useful pain relief either alone or as an adjuvant to standard analgesic drugs. These include: corticosteroids, antidepressants, anticonvulsants, muscle relaxants, and anxiolytics. e. Give drugs by the least traumatic route available. If your child can no longer take oral medications, consider alternative routes of administration such as dermal (skin), subcutaneous, rectal, or IV. f. Use appropriate conversions when changing routes (please check with pharmacist to make sure dosages are correct). g. Use round the clock dosing to provide consistent pain relief. Provide extra doses for management of escalating or breakthrough pain. As needed or PRN doses are only useful for breakthrough pain, not as the primary management. h. Frequently reassess your child’s pain, particularly after adjusting dosages or adding additional drugs. If pain is severe, reassess every 30 minutes and continue to modify doses until pain relief is achieved. Seek consultation with other pediatric specialties or home palliative care professionals. I. Anticipate side effects associated with analgesic therapy and treat them prophylactically when possible. Manage any distressing symptoms aggressively as they occur. Our main goal for pain management is to keep our children as happy and comfortable as possible with whatever means is available to our disposal throughout their lives with Batten Disease. If that means medicating our children in the last stages of Batten Disease every hour, then that is something we need to consider along with our health care professionals.

What would the parents tell another parent going through this? Most parents emphasized the need to speak up and urge their peers not to intimidated. Ask to read your child’s medical record if you want to. Most parents did want to, but did not think it was allowed. Question the treatments and procedures if you have doubts. Be honest with yourself and your child whenever you can. Let yourself learn from your child. Forget once in a while that you are the parent, the authority, and let yourself go through the experience with your child as a fellow student, both learning together.

What would parents like to tell medical personnel and treatment centers? Remembering you are treating children, fragile human beings, and not machines. Show your humanity. Give the child, no matter how young, some explanation of what you are doing. Your

157 efficiency will not suffer if you relate to the child with a smile or a word. Remember that the child, no matter how old, may be frightened by machinery and tests, and that fear does not aid healing. Relaxation and trust promote healing, and you can help by making the event less fearful. Include the parents whenever possible. Make your treatment areas less grim. Have puppets or mobiles or something for kids to look at during the tests. Cheerful, soothing music could help too. These are not too expensive or time consuming suggestions, but could be easily incorporated by medical personnel. Above all, take the time to answer questions, even if you have answered them before. Many parents are under such stress that they may need further explanation. Neither you nor the parent are alone in wanting what is best for the child. You are working together for the child’s well being.

One of the hardest kinds of death to accept is that of one’s child. You wonder why not me, why him/her? It is a rude reminder that death follows no predictable timetable, but chooses its own time and place. There are two choices when a loved one dies – to live in grief, remorse, and guilt, or to face those feelings by working through them, emerging with an acceptance of death and a commitment to living.

Terminally ill children and their families need long term support – physically, socially, psychologically and spiritually. More home care and hospice programs need to become available and accessible to dying children and their families. . The Roles of the Health Care Professionals – in the hope that care for the dying child will change and home care will be used successfully, the role of health care professionals must also change. Pivotal in its success is acceptance of the concept of terminal care by the health care staff. This may be especially hard for the pediatrician, who probably had very little training in dealing with the death of a patient. The overall rate of pediatric mortality has been decreasing, but there still has been as increasing number of pediatric cases involved with chronic illness, which can be expected to be terminal. Thus, the necessity for this type of training exists. In view of this, the health care team, and in particular the physician is still not receiving the proper orientation to work with the dying child. Most physicians receive the greatest amount of gratification from treatment success, their achievements being measured by the rehabilitation and restoration of the patients’ health. When confronted with the dying patient, the physician may believe he or she has little to offer and may become unavailable for continuous treatment. The matter is even worse when the physician continues to treat the child until the last minute of life, believing that everything should be done medically until the time of death. Last minute

158 heroics usually are not what are called for. Rather, the health care staff, as well as the family, should be concerned with making sure the child is comfortable when dying. Extremely important in achieving this goal is proper management of pain medication for the dying child. There is no reason why any child, especially the terminally ill child should be in pain. No effective medication should be withheld. Often both the physician and nurse need to be reminded and supported in this regard, though they may hesitate to deviate from the standard dose and its usual applications. To be able to institute successful pain control at home, the physician needs to allow the nurse and family flexibility in pain management. This can be done by prescribing a wide range of doses. Although some people may still look upon home care for the dying child with pessimism, there are appreciable benefits. The family and child who decide on home care seem to be better adjusted to the child’s fate. These psychological and social benefits stem from the environment of love and security that the home provides. By providing these comforts, it helps promote the honesty and openness that is truly needed by the dying child. At home, the child gets the attention and love is so often lacking in the hospital. The family’s desires to actively participate in the care of their child are also better fulfilled. And all these advantages – improved satisfaction with the environment and the health care delivered – are available at a reduced financial cost.

Preparing for Approaching Death

When a person enters the final stage of the dying process, two different dynamics are at work which are closely interrelated and interdependent. On the PHYSICAL plane, the body begins the final process of shutting down, which will end when all the physical systems cease to function. Usually this is an orderly and undramatic progressive series of physical changes which are not medical emergencies requiring invasive interventions. These physical changes are a normal, natural way in which the body prepares itself to stop, and the most appropriate kinds of responses are comfort enhancing measures.

The other dynamic of the dying process at work is on the EMOTIONAL – SPIRITUAL – MENTAL plane, and is a different kind of process. The spirit of the dying person begins the final process of release from the body,, its immediate environment, and all attachments. This release also tends to follow its own priorities, which may include the resolution of whatever is unfinished of a practical nature and reception of permission to

159 “let go” from family members. These events are the normal, natural way in which the spirit prepares to move from this existence in to the next dimension of life. The most appropriate kinds of responses to the emotional – spiritual – mental changes are those which support and encourage this release and transition.

When a persons body is ready and waiting to stop, but the person is still unresolved or unreconciled over some important issue or with some significant relationship, he or she may tend to linger in order to finish whatever needs finishing even though he or she may be uncomfortable or debilitated. On the other hand, when a person is emotionally – spiritually – mentally resolved and ready for this release, but his or her body has not completed its final physical shut down, the person will continue to live until that shut down process ceases.

The experience we call death occurs when the body completes its natural process of shutting down, and when the spirit completes its natural process of reconciling and finishing. These two processes need to happen in a way appropriate and unique to the values, beliefs, and lifestyle of the dying person.

Therefore, as you seek to prepare yourself as this event approaches, I want you to know what to expect and how to respond in ways that will help your loved one accomplish this transition with support, understanding, and ease. This is the great gift of love you have to offer your loved one as this moment approaches.

The emotional – spiritual – mental and physical signs and symptoms of impending death which follow are offered to help you understand the natural kinds of things which may happen and how you can respond appropriately. Not all of these signs and symptoms will occur with every person, nor will they occur in this particular sequence. Each person is unique and needs to do things is his or her own way. This is not the time to try to change your loved one, but the time to give full acceptance, support, and comfort.

The following signs and symptoms described are indicative of how the body prepares itself for the final stage of life: 1. Coolness – the persons hands and arms, feet and then legs may be increasingly cool to the touch, and at the same time the color of the skin may change. This is a normal indication that the circulation of blood is decreasing to the body’s extremities and being reserved for the most vital organs. Keep the person warm with a blanket, but do not use one that is electric. 2. Sleeping – the person may spend an increasing amount of time sleeping, and appear to

160 be uncommunicative or unresponsive and at times be difficult to arouse. The normal change is due in part to changes in the metabolism of the body. Sit with your loved one, hold his or her hand, but do not shake it or speak loudly. Speak softly and naturally. Plan to spend time with your loved one during those times when he or she seems most alert or awake. Do not talk about the person in the persons presence. Speak to him or her directly as you normally would even though there may be no response. Never assume the person cannot hear; hearing is the last of the senses to be lost. 3. Disorientation – the person may seem to be confused about the time, place, and identity of people surrounding him or her including close and familiar people. This is also due in part to the metabolism changes. Identify yourself by name before you speak rather than to ask the person to guess who you are. Speak softly, clearly, and truthfully when you need to communicate something important for the patient’s comfort, such as, It is time to take your medication, and explain the reason for the communication, such as, so you won’t begin to hurt. Do not use this method to try to manipulate the patient to meet your needs. 4., Incontinence – the person may lose control of urine and/or bowel matter as the muscles in that area begin to relax. Discuss with your Nurse from Hospice or Home Health Care or myself what can be done to protect the bed and keep your loved one clean and comfortable. 5. Congestion – the person may have gurgling sounds coming from his or her chest as though marbles were rolling around inside; these sounds may become very loud. This normal change is due to the decrease of fluid intake and an inability to cough up normal secretions. Suctioning usually only increases the secretions and causes sharp discomfort. Gently turn the persons head to the side and allow gravity to drain the secretions. You may also gently wipe the mouth with a moist cloth. The sound of the congestion does not indicate the onset of severe or new pain. 6. Restlessness – the person may make restless and repetitive motions such as pulling at bed linen or clothing. This often happens and is due in part to the decrease in oxygen circulation to the brain and to metabolism changes. Do not interfere with or try to restrain such motions. To have a calming effect, speak in a quiet, natural way, lightly massage the forehead, read to the person, or play some soothing music. 7. Urine decrease – the persons urine output normally decreases and may become tea colored referred to as concentrated urine., This is due to the decreased fluid intake as well as decrease in circulation through the kidneys. Consult with your Hospice or Home Health Nurse or myself to determine whether there may be a need to insert or irrigate a catheter. 8. Fluid and Food Decrease – the person may have a decrease in appetite and thirst,

161 wanting little or no food or fluid or unable to tolerate tube feedings. The body will naturally begin to conserve energy which is expanded in these tasks. Do not try to force food or drink into the person, or try to use guilt to manipulate them into eating or drinking something. To do this only makes the person much more uncomfortable. Small chips of ice, frozen Gatorade or juice may be refreshing in the mouth. If the person is able to swallow, fluids may be given in small amounts by syringe ( ask your nurse). Glycerine swabs may help keep the mouth and lips moist and comfortable. A cool, moist washcloth on the forehead may also increase physical comfort. 9. Breathing Pattern Change – the persons regular breathing pattern may change with the onset of a different breathing pace. A particular pattern consists of breathing irregularly, i.e., shallow breaths with periods of no breathings of 5 to 30 seconds and up to a full minute. This is called Cheyne-Stokes breathing. The person may also experience periods of rapid shallow pant-like breathing. These patterns are very common and indicate decrease in circulation in the internal organs. Elevating the head, and/or turning the person onto his or her side may bring comfort. Hold your loved ones hand. Speak gently.

The following indicative of normal emotional – spiritual, and mental end stage signs and symptoms: 1. Withdrawal – the person may seem unresponsive, withdrawn, or in a comatose-like state. This indicates preparation for release, a detaching from surroundings and relationships, and a beginning of letting go. Since hearing remains all the way to the end, speak to your loved one in your normal voice, identifying yourself by name when you speak, hold his or her hand, and say whatever you need to say that will help the person let go. 2. Vision-like experiences – the person may speak or claim to have spoken to persons who have already died, or to see or have seen places not presently accessible or visible to you. This does not indicate an hallucination or a drug reaction. The person is beginning to detach from this life and is being prepared for the transition so it will not be frightening. Do not contradict, explain away, belittle or argue about what the person claims to have seen or heard. Just because you cannot see or hear it does not mean it is not real to your loved one. Affirm his or her experience. They are normal and common. If they frighten your loved one, explain that they are normal occurrences. 3. The person may perform repetitive and restless tasks. This may in part indicate that something still unresolved or unfinished is disturbing him or her, and prevents him or her from letting go. Your nurse will assist you in identifying what may be happening and help you find ways to help the person find release from the tension or fear.

162 Other things which may be helpful in calming the person are to recall a favorite place the person enjoyed, a favorite experience, read something comforting, play music, and give assurance that is OK to et go. 4. Fluid and Food Decrease – When the person may want little or no fluid or food, this may indicate readiness for the final shut down. Do not try and force food or fluid. You may help your loved one by giving permission to let go whenever he or she is ready. At the same time affirm the persons ongoing value to you and the good you will carry forward into your life that you received from him or her. 5. Decreased Socialization – the person may only want to be with very few or even just one person. This is a sign of preparation for release and affirms fro whom the support is most needed in order to make the appropriate transition. If you are not part of this inner circle at the end, it does not mean you are not loved or not important. It means you have already fulfilled your task with your loved one, and it is the time for you to say Good-bye. If you are part of the final inner circle of support, the person needs your affirmation, support, and permission. 6. Unusual Communication – the person may make a seemingly out of character or non sequitur statement, gesture, or request. This indicates that he or she is ready to say Good-bye and is testing you to see if you are ready to let him or her go. Accept the moment as a beautiful gift when it is offered. Kiss, hug, hold, cry, and say whatever you most need to say. 7. Giving Permission – giving permission to your loved one to let go, without making him or her feel guilty for leaving or trying to keep him or her with you to meet your own needs, can be difficult. A dying person will normally try to hold on, even though it brings prolong discomfort, in order to be sure those who are going to be left behind will be all right. Therefore, your ability to release the dying person from this concern and give him or her assurance that it is all right to let go whenever he or she is ready is one of the greatest gifts you have to give your loved one at this time. 8. Saying Good-bye – when the person is ready to die and you are able to let go, then is the time to say, Good-bye. Saying Good-bye is your final gift of love to your loved one, for it achieves closure and makes the final release possible. It may be helpful to lay in bed and hold the person, or to take his or her hand and then say everything you need to say. It may be as simple as saying, I love you. It may include recounting favorite memories, places, and activities you shared. It may include saying I’m sorry for whatever I contributed to any tension or difficulties in our relationship. It may also include saying, Thank you for…..

Tears are a normal and natural part of saying Good-bye. Tears do not need to be

163 hidden from your loved one or apologized for. Tears express your love and help you to let go.

9. How Will You Know When Death Has Occurred? – Although you may be prepared for the death process, you may not be prepared for the actual death moment. It may be helpful for you and your family to think about and discuss what you would do if you were the one present at the death moment. The death of a hospice patient is not an emergency. Nothing must be done immediately.

The signs of death include such things as no breathing, no heartbeat, release of bowel and bladder, no response, eyelids slightly open, pupils enlarged, eyes fixed on a certain spot, no blinking, jaw relaxed and mouth slightly open.

A Hospice nurse will come to assist you if needed or desired. If not, phone support is available.

The body does not have to be moved until you are ready. If the family wants to assist in preparing the body by bathing or dressing, that may be done. Call the funeral home when you are ready to have the body moved, and have the person identified as a Hospice patient if so. The police do not have to be called. The Hospice nurse or Home Health nurse will notify your Physician.

The Gift of Life 1. Organ donations – Does your child have potential to be an organ donor? Not everyone can. A discussion with you, your child, and your health care providers is important. There are a number of implications in the care process if your child is a potential organ donor and if you and your child are in favor of organ donation. You should talk with your child’s doctor about what steps need to be taken if your child is to give the gift of life to others. Children who are potential organ donors have never had an opportunity to do so. Often, physicians and other health care professionals feel uncomfortable about bringing this issue up with them and their family. You and your child now have an opportunity to discuss organ donation with your doctor. You can become a donor by filling out the Donor Registry Enrollment Form when you apply for your License in your state. This means that you are authorizing the use of any of your usable organs, tissues, or eyes for any purposes authorized by law. You are not agreeing to donate your entire body. If your name is in the registry, donation will

164 move forward at the time of your death. And also specific organizations have organ and tissue programs already set up for you should you wish to participate. BDSRA has a program as well. Call us if you are interested in participating. 2. The Brain Bank – In addition to organ donation, donation of a child’s brain after death is an immeasurable gift. Surprisingly, for many common diseases the lack of opportunity for researchers to study brain tissue has severely limited our knowledge of cause, treatment, and what we all hope for, prevention of these conditions. Researchers not only need to study the brains of children with mental illness or neurological disorders, they also need brain tissue from children who do not have these conditions and have died from other causes. This is an issue for you to think about and discuss with your doctor if you are so inclined. Brain donation is done at no cost and will not interfere with your child’s appearance at the funeral.

Brain Death Should Determine Death Many states have passed laws that define death as the total cessation of all brain functions, or brain death. Of all the acts of physicians, a declaration of death has the most irreversible and profound consequences. Accuracy in diagnosis is of the utmost importance. The criteria that physician’s use in determining that death has occurred should: a. Eliminate errors in classifying a living individual as dead. b. Allow as few errors as possible in classifying a dead person as alive. c. Allow a determination of death to be made without unreasonable delay. d. Be adaptable to a variety of clinical situations. e. Be explicit and accessible to verification

1. The Uniform Determination of Death Act, (UDDA) proposed in 1981, and its predecessor, the Uniform Brain Death Act of 1978, gave legal expression to a concept that had been developing over the previous 25 years. There was a consensus that the traditional heart-lung standard for determining death was no longer adequate because mechanical ventilators and other medical interventions despite a loss of all brain functions could maintain circulation and respiration. It was recognized and accepted that an individual was dead whose loss of brain function was complete and irreversible. The UDDA states: “An I ndividual who has sustained either a) irreversible cessation of circulatory and respiratory or b) irreversible cessation of all functions of the entire brain, including the brain stem, is dead. A determination of death must be made in accordance with accepted medical standards.” These guidelines for the Determination of Death stated “the medical profession, based on carefully conducted research and extensive clinical experience, has found that death can be determined

165 reliably by either cardiopulmonary or neurological criteria.”

2. Two types of Brain Death - there are two ways in which the brain can selectively die in the absence of serious damage to other organs: a. Severe head trauma with direct and total destruction of the brain. b. More common type of brain death begins with a cerebral insult that leads to a vicious cycle of cerebral edema and reduced cerebral perfusion, which mutually exacerbate each other until blood flow ceases. In the process, the brain becomes so swollen that it herniates from cranial compartment into another or through the opening into the spinal canal, destroying itself in the process. This can happen selectively to the brain even after a systemic anoxic - ischemic insult, such as drowning or cardiac arrest, because the brain is the organ most sensitive to lack of blood flow or oxygen. If the insult is not so severe as to damage all the other organs irreparably, but severe enough to initiate this sequence of events to the brain, selective destruction of the brain can result. Ordinarily, as soon as the brainstem becomes affected, either directly from the initial insult or from the process of brain herniation, the person stops breathing. The resultant lack of oxygen leads quickly to cardiac arrest. However, if breathing is supported mechanically, the heart can continue beating on its own, despite total brain destruction. This condition is described as “brain death” The remainder of the body’s cells can be kept alive for some time if ventilation, fluids, nutrition, and intensive nursing care are provided. The longest recorded time is 201 days. However, during this time, the dead brain tissue softens, liquefies, and eventually entirely disappears, leaving a bag of scar tissue full of watery fluid. Almost always, patients are disconnected from artificial life support long before this stage is reached. “Respirator brain” is the pathological term used to describe the early stages of this liquefactive necrosis.

Guidelines for the Determination of Brain Death When the requirements of criteria 1, 2, and 3 are fulfilled, the patient may be pronounced brain dead by a licensed physician: a. Coma of established irreversible cause or exclusion of reversible cause of coma: 1. The patient must have a known irreversible structural of systemic disease causing coma. 2. There must be no chance of drug intoxication or significant hypothermia contributing to the cause of the coma. 3. A six-hour period of observation during which tests of cerebral and brain stem function are performed and documented is sufficient when the nature

166 and duration of coma are known. 4. Longer periods of observation and more testing may be necessary under some circumstances and when the nature and duration of coma are not known. b. Absence of cerebral function: 1. There must be no behavioral or reflex response to noxious stimuli indicative of function above the level of the foramen magnum. 2. Although, not a requirement, an isoelectric electroencephalogram for 30 minutes is confirmatory of brain death. c. Absence of brain stem function: 1. The pupils must be fixed, unreactive to bright light. 2. There must be no oculovestibular response to ice water tests in both ears. 3. There must be apnea for 10 minutes during apneic oxygenation or when a PaCO2 is greater than 60 mmHg in the absence of metabolic acidosis. These tests of absent breathing should be performed following hyper oxygenation on mechanical ventilation. Note: Systemic circulation may be intact. Spinal reflexes and some limb movements may be intact.

Permanent Vegetative States When total brain death occurs, there is cessation not only of higher cerebral functions (consciousness, awareness, control of important voluntary and involuntary actions), but also of all brain stem functions. Persons who are in a permanent vegetative state are not totally brain dead because their brain stems are relatively intact. They thus demonstrate a number of normal brain stem functions, such as cycles of sleep and wakefulness (with eyes open), the ability to breathe and maintain blood pressure unassisted, papillary responses to light, the utterance of unintelligible instinctive grunts or screams, sporadic movements of facial muscles and non-paralyzed limbs, and gag and cough reflexes. In addition, cardiorespiratory activity, swallowing, and digestive and other nonneurological vital functions are usually preserved to an extent that standard nutritional and supportive measures will sustain life indefinitely.

Nonetheless, persons in permanent state demonstrate a total loss of cerebral cortical functioning; they are permanently and irreversibly devoid of any awareness, thought or feelings. Thus, for these patients, “personality, memory, purposive action, social interaction, joy, satisfaction, and pleasure are forever gone.” Moreover, each patients do not and will never experience pain or suffering.

What is an autopsy?

167 An autopsy or post-mortem is the examination of a body after death. A coroner in the Pathology Department in the hospital normally performs an autopsy. Reasons for Autopsies: 1. Help increase understanding of the disease, which may advance research and enable children to be helped in the future. 2. Many parents feel a sense of gratification in being able to help the medical profession learn more about a specific disease, However, when you are asked to give permission for an autopsy to be performed on your child, do not feel that you have to agree. This is not always a legal requirement and if you do not feel comfortable with the idea, you have the right to say no. Ask any questions that may help you decide. 3. In some cases, you have no choice, and an autopsy must be done, usually if the death is uncertain, or if the death was occurred suddenly.

An autopsy does not mean that you cannot have an open casket at the funeral, and it usually will not cause a delay in the burial of your child. If your child is terminally ill, if you wish to have your child die at home, and if you do not wish to have an autopsy performed, prior arrangements can be made with your doctor. Your doctor can contact the coroner to eliminate the need for an autopsy because the illness is terminal. Some parents have unanswered questions about their child’s death or illness. Often they wonder if there was something more they or someone else could have done, there may be details surrounding their child’s death that they do not fully understand. It can help to ease parents minds to address any resolved issues with the child’s doctor a few weeks after the death. If you chose to have an autopsy performed, this can also be a good time to discuss the results.

Medical Certificate of Death must be completed after a death. The doctor confirms that your child has died, or the coroner, makes out the Medical Certificate of Death. This document states your child’s name and age, and the cause and date of death. The Medical Certificate of Death must be completed before an autopsy can be performed or before a funeral director can remove the body from your home of from the hospital.

Statement of Death You will also need to complete a Death Registration form or Statement of Death, which may be obtained from Vital Statistics or from your local Hospital Registrar. If you have chosen a funeral director, he or she will complete Statement of Death. This enables the child’s death to be registered, and then your Provincial Division of

168 Vital Statistics or your local hospital registrar will issue a burial permit. All the other arrangements can be made at your own pace, and there is no need to rush into any decisions. It is important that the plans you make feel right for you and your family.

After your child’s Death After death, most parents and families may want to spend some time alone with their child. This is often easier if you can take time to let the nurses unhook the equipment that your child was using. You should feel free to spend time with your child either by yourself, with your partner, or with members of your family if you so desire, so that you can say goodbye and pray. Your child’s body will then be transferred to a funeral home where funeral arrangements will be made.

Dealing with our loss Are you married? Do you have a partner? How will you deal with your loss? How will the two of you deal with your loss? The death of a child is among the most stressful of events people will ever encounter in their lives together. For some couples, this tragedy brings them closer together. For others, this is not the case. You will need to talk with each other about this. Often one partner wants to talk, the other does not. Sometimes people begin to work longer hours. If a drug or alcohol problem is present; it can worsen during these times. Depression is common and may need treatment either by talk therapy, medication, or both. This will be a loss that will change your life. Be good to yourself and others. In the first month after this death, make an appointment to see someone for counseling. Take your partner and your children. These are important issues that need to be discussed, not only with each other but also with your health care providers. They can be very helpful in problem solving and helping you find help. In some cases, other issues may arise. These may involve work, financial or legal issues. If you have questions, write them down and begin a discussion with the people on your health care team. One of the first things to know is that there is not a usual or typical way people deal with the death of a child. Everyone does it differently. For some people, little things remind them of their child for years. Some people see and talk with their children after death. This may occur for months. You may need to talk about it over and over as you deal with and accept this loss. Most children need time to talk and deal with the death of a sibling or friend. For children above the age of 5 and up to about 12 years of age, there is a very helpful book, entitled, “When Someone Special Dies”. Many people may need counseling, but only a few actually go and get treatment. Remember, everyone does

169 this differently. If after six weeks, you cannot work, and after two months, you have problems of low energy, poor appetite, crying several times a day, or a feeling of sadness that does not change, ask for help. See your doctor, see a psychologist, and seek help from a support group, and ask your minister, priest, or rabbi for help. Many people can and want to help you. Your child has a different life now. You can go on with a different life. Each ending is also a beginning.

Coping With Grief What is Grief? – Grief is an emotional reaction, which encompasses many feelings, such as disbelief, loneliness, fear, anger, guilt, regret, sadness and despair. Most people who experience a death in the family suffer the emotions of grief, but bereaved parents probably experience grief the most severely. The death of one’s own child may be the most devastating and intense loss a person will ever experience.

Dealing With Your Own Grief As a bereaved parent, you may experience physical symptom. You may find that you are very tired and want to sleep all of the time, or that you cannot sleep at all. You may lose your appetite and may not feel like looking after yourself, or you may become irritable. Doctors sometimes suggest medications to help you cope; discuss the pros and cons thoroughly with your doctor before going ahead. If mediation numbs the pain too much, you may find your grief much harder to deal with at a later stage. Some parents feel that they want to escape the death. To deny the reality of the death, they escape through the use of sedatives, alcohol, or other drugs. Some parents choose to move immediately after the death or to give away all of the child’s possessions, so that they are not reminded of their child. These are not solutions and are often regretted. You cannot escape grief. It is normal and healthy, and you must experience it to heal. Grief is an expression of one’s love, and to grieve is to have loved. Try to face each day and make decisions as they arise. However, try to avoid making any major decisions too quickly after the death of your child. The shock experienced after the death of your child may last from several weeks to several months. Several months after your child’s death you may find that the pain becomes even more intense. Deep feelings of loneliness may encompass you, as the rest of the world appears to go on with living and you feel left alone with your pain. These feelings of emptiness maybe more intense if you were used to spending large amounts of time caring for your child, and were doing so over a long period of time. This is because your way of life is gone as well as your child, and you have a larger void to fill.

If you spent many years caring for your sick or disabled child, you may feel a sense of

170 relief or thankfulness that your child’s suffering is over. Along with these feelings you may also feel gilt. All of these feelings are normal and are experienced by many parents.

Understanding the reactions of others Understanding other people’s reactions to your grief can be another trying experience for you. For example, in addition to your grief, you may have the feeling that people are avoiding you, usually because they feel uncomfortable talking about death and feel at a loss for words. Most people have not been exposed to death, because our society tends to deny it or avoid contact with it, rather than accept it as a normal part of life. Partly as a result of this, some of your friends may say things to you, which you find hurtful. People with no knowledge or understanding of grief always make these seemingly thoughtless statements with good intentions, usually. Most people do not realize that the healing process is a very long and slow one. They may not realize that, even though you knew your child was going to die, your grief is no less than it would have been if your child’s death had been expected. Your child was a part of your life and always will be. It may seem that society expects you to forget that your loved one ever lived, but that will never happen. As a bereaved parent, you are still a parent and your child will always parent and your child will always be a part of you. No one can take that away… your child’s memories will undoubtedly always live on in your heart.

Different Ways of Grieving There is no right way to grieve. Some parents express their grief openly and have the support of those around them. For some, crying tends to ease the pain of grief for a short time, while for others, crying freely is difficult. It is common for couples to grieve differently and at different paces. Remember that each person will grieve the relationship they had with the child, which will be different than the relationship you had with the child. Some parents may find it very difficult to express their pain and may internalize it. Some will escape into their work, while others will need to talk.

Getting Help With Your Grief As a parent, you may experience such intense grief after the death of your child that you wish to seek assistance in dealing with your feelings. You may find you need the understanding and empathy of other bereaved parents in order to feel fully understood. Although no one can take your pain away or lessen the intensity of it, many parents have found it helpful to be able to discuss their feelings and pain with other parents who have suffered the death of a child. Grief can escalate into feelings of hopelessness, despair, depression, and the loss of interest in life. These

171 feelings can overwhelm you and interfere with the positive resolution of your grief. If you are experiencing these feelings, strongly consider getting professional counseling. Many parents have found it advantageous to use the services of a psychologist or bereavement counselor. Resources that offer support and that help parents In the positive resolution of their grief are available in most areas. Such groups or organizations can give you more insight into the feelings of grief and help you recognize whether you should seek professional counseling. In some areas they offer bereavement programs led by professionals. These programs provide a small group atmosphere that can be helpful in working through and understanding many grief issues. The sessions are usually held weekly and run for several months.

Another opinion you may wish to consider is attending a self-help group led by and consisting only of bereaved parents. At these group sessions you may find comfort and understanding through sharing with other parents. What can be particularly helpful is that parents who have worked through their own grief can offer support and understanding to the newly bereaved. You may find you need to talk about your child and such a group is a safe place to talk and express your feelings. These meetings are usually held monthly. These groups will have literature available on many aspects of grief and the emotions involved. You may wish to contact organizations for more information on their groups. If you have specific religious beliefs, you may wish to talk with your minister or priest to help deal with some of the emotions you are experiencing. Most hospitals offer pastoral care. If your child has died in the hospital, you may feel comfortable speaking to one of these people as you deal with grief.

Siblings and Grief Siblings should be included in the events surrounding their brother or sister’s death, if they so wish. They, too, experience grief. They know that their sibling has died, and they may need to have things explained to them. Prior to your child’s death, you may want to talk to your other children about death and dying. Many parents find it easier to explain death to children by using nature and simple explanations to show that death is part of the cycle of life, as is birth – and that flowers and leaves, birds, insects and people all die. Also helpful are books about death and dying, written especially for children. You may wish to read one to your children. Your children may want to say goodbye to their sibling after the death has occurred. Allow your children to do this and to participate in the funeral service if they choose. Shutting children out can leave them feeling anxious about their brother’s or sister’s death. A sibling may have at one time wished that their sibling was dead, and may now feel somehow

172 responsible for their brother’s or sister’s death. It is important to give surviving children the opportunity to express their feelings of grief and, especially, any feelings of guilt, and to assure them that their wish was in no way responsible for the death. When your children are grieving, they may need someone other than a parent to talk to. Children often internalize their own grief, for fear of upsetting their parents. In most areas, there are bereavement programs for siblings.

Communication can make the child feel more supported. One of the most basic needs of adolescents is a need for personal security, which he/she gains through positive, constructive appraisals from others who the adolescent respects. Acknowledging the child’s role can contribute to his/her self-concept. Caring, at this juncture in treatment, means helping the whole family cope with a difficult decision. Clarification of treatment goals for all parties concerned, whether the goal is to provide comfort or to pursue additional treatment is an essential element of quality patient care.

Ways of Communicating: 1. Never decide today what you may be able to decide more peaceably tomorrow. We’ve delayed big decisions when we could not agree; using the time to gather more information, go for a second opinion, talk it over some more. 2. Try one parent’s approach for a limited time. My husband felt the therapy our son received at school was adequate, and the expense for private therapy was too great. We came to an agreement to give it a trial period. After a few months my husband was in full agreement to continue with the private therapy. 3. When the disagreements span over a wide range of issues, and a longer period of time, agree to allow one parent – perhaps only temporarily-to be the child’s “case manager”: Let the parent having more responsibility for raising the child make the basic decisions and support him or her in every effort to obtain the best environment and education for the child with open discussions as to how best to achieve the selected items chosen by the spouse having primary responsibility for the child. 4. Agree on an “emergency procedure”: When a situation must be handled on the spot, allow the party who seems most determined in a specific episode, to take control. Afterward, definitely talk rationally about the episode – not in front of the child – and keep an open mind. Usually a mutual understanding for the future can be decided.

Allowing one parent to become the decision maker, whether in an emergency or, as “case manager”, over a longer period of time, does not mean making that parent the

173 sole caregiver. Too often the responsibility for nurturing the disabled child falls automatically, and entirely, on the non-employed mother. I work hard and come home dead tired, the father says, and who is to deny it? But there is not work fathers do that is more tiring and tension producing than having to care for a disabled child for a large part of the day. In a “who’s tireder”? contest, do not bet against the mother. Whether or not it is a two-paycheck family, the father who cares about the child has to be willing to share in he care of the child. That does not necessarily mean splitting every chore fifty-fifty, but it does mean looking for ways to lighten the mother’s load to whatever extent possible.

Many adults find it uncomfortable which usually is intensified when death involves a child, whether that child is grieving a loss or is terminally ill. Many people avoid the topic with children, believing this avoidance protects the child. Other people think children do not understand death and so there is no need to talk with them about death issues. While children’s understanding of death does depend on many factors such as age and experience, they do know some of what has happened and will create their own version of circumstances when not told. Perhaps even more disconcerting is the thought that children do know when they are dying. If no one talks to them about it, what can they use to fill in the blanks; what frightening experiences do they create in their imaginations? In response to concerns such as this, many people are beginning to look at ways of gaining greater insights to children’s experience of life-threatening illness and to what is helpful for them. Several children worked together and came up with the following about their experiences. These children had potentially fatal diseases. “It was hard for most of us to talk about how we felt inside. And it was hard for us to find someone who would really listen without being afraid. Sometimes the questions we were afraid to ask were: ‘Am I going to die?’ “What is dying like’? We knew certain questions would bring tears to our parent’s eyes so we learned not to ask those questions. All of us seemed to want to protect our parents. At the same time, we wanted to be physically close to our parents most of the time. Lots of times we did not want them out of our sight”.

Another example was of a two year olds final hospitalization; he was able to tell his mother “I’m going to be a little bird soon and fly off. I wish you could come with me, but you can’t. A few weeks later, this same child indicated he wanted a kiss on either cheek from Dr. Siegel, a privilege never before permitted his doctor; he died fifteen minutes later.

174 Grief Will the grieving parent ever be happy again? Can the family ever have good times again? What was the meaning of my child’s life? Will grief ever go away? Many parents go through deep grief after a child’s death. The year’s pass and most of these people are able to have good times with their families again. Sometimes they feel a lightness of heart they would have thought impossible after their child’s death. Yet all of them find the sorrow does remain, even after years. Sometimes it comes so unpredictably, they enter a situation feeling well able to handle it and find themselves sobbing again. The only suggestion is for parents to be patient with themselves. Do not tell yourself, “I should be over it by now.” There are no time limits. But neither should you let yourself think that joy and laughter are over for you and your family. They are not. Each parent feels meaning, deep meaning, in his or her child’s life, no matter how many months or years it lasted. All of them were grateful to have known their children were grateful to have had them at all, even for a little while. Had any of them known of the pain and suffering they and their child would go through, and had they been able to prevent their child’s birth, they all say they still would have chosen to have their child. The parents learned so much from their children (when they let him/her teach them) and saw so many lives touched and deepened by them. They saw their children, even very young children, deepen and grow from their experience. Often their wisdom was amazing. They gave their parents love and trusted them with their lives. Parents did the best they were capable of doing and feel grateful to their children for the time they spent with them. For most parents their children are still alive in some way. They are alive in the hearts of those who loved them. They are alive in the lives they touched. They are alive in the totality of the cosmos, for as science tells us today, nothing is ever lost, just transformed. No particle of energy is extinguished, just converted. Those with a belief in an immortal soul feel that their child is still living and growing.

175

Chapter 8

Funerals

Professionally Arranged Funerals Can Help The Grieving Prior to the death of your child, you may wish to ask friends and relatives to recommend funeral homes. Listen to their experiences with particular funeral homes and funeral

176 directors before making your choice, as there can be a great variance in the service obtained and the fees charged. Many families have very positive experiences using the services of a funeral director. However, some bereaved families who have turned over the arrangements for their child’s funeral to a funeral director have found that it led to a service that they felt was impersonal. If you do choose the services of a funeral director, that person can help guide you step by step through all that has to be done. It is important to know, however that although you have hired a funeral director, you can still be involved in every aspect of arranging the funeral. A good funeral director will allow you and your family to be as involved as you wish. Too many families, under the impression that they were not allowed to participate in the arrangements, have ended up feeling that the service was not a meaningful tribute to their deceased child. Although participation in the funeral can be very painful for the family, it can also serve as a valuable outlet for the deep, intense feelings, which need to be expressed. Some ways in which your family can participate in arranging your child’s funeral include dressing your child and placing him or her in the casket; reading at the service; serving as pallbearers; and finalizing the burial or the placement of the ashes. Allow your other children to participate in the funeral if they wish. They are grieving as well, and may find contentment in participating. Again, this can be a way of showing their love and expressing their deep sorrow.

A funeral or memorial service may be religious or non-religious, and does not have to be held at a place of worship. Some families choose to have a ceremony at their home or in a beautiful garden. Services can be as unique as the individual they are honoring. If you have specific beliefs and customs, you may want the service to be conducted according to those beliefs. If you belong to a specific church, you may wish to hold the service there or you may have your priest or minister conduct the service in the chapel at the funeral home. If you do not belong to a specific religious association, but wish to have a minister or priest conduct the funeral service, the funeral director will be able to put you in contact with an appropriate individual. A funeral or memorial service helps to finalize a death, which is an essential step in a family’s grieving and healing process. It helps the family comprehend its loss, which can be a very difficult experience.

Making the Service a Meaningful Tribute Many decisions surrounding the funeral or memorial service can be made prior to the death of your child. You may find a favorite poem you would like to read, or your child’s siblings may wish to participate by reading a poem. You may also wish to ask teachers, or relatives to read something special at the service. The music you choose may be your or your child’s favorite music rather than hymns, or a combination of both. Many parents choose helium

177 balloons to fill the chapel rather than flowers. Parents sometimes place teddy bears or special toys with the child in the casket. Even in religious ceremonies, these options are available. Talk with your priest or minister about your wishes. Families often have a book for people who attend the service to sign. You may purchase this book from the funeral director, or you may wish to supply a special one yourself. Some parents find comfort in using the funeral service as an opportunity to celebrate their child’s life as well as to mourn their child’s death. They make the service a meaningful tribute and a reflection of the child’s life. It is never easy to accept death. After hearing that a loved one has died, we may feel angry, confused, or emotionally numb. We may not know how to express our feelings of loss, or how to say good-bye to the person who has died. But we do need to work through these feelings, and that is what makes a funeral so important. A funeral is a ritual that can help focus our emotions and brings meaning to the experience of death. A funeral gives mourners “permission” to express feelings of sadness and loss. Funerals also stimulate mourners to begin talking about the decreased, one of the first steps toward accepting the death. In fact, people who do not attend the funeral of a loved one because they want to deny the death or suffer from unresolved grief several months later. To resolve their grief, mourners need to accept the reality of death not only on an intellectual level, but on an emotional level as well. It is for this reason that funerals in our culture are usually preceded by an open-casket visitation period.

Arranging a Funeral on Your Own There is no right or wrong way to have a funeral, as long as you abide by the specific laws within your state/province. Although it is not an easy task, it is legal to prepare a body and arrange for cremation or burial without the assistance of a funeral home. If you choose this route, resources such as memorial societies and vital statistics offices are available to assist you, and are listed in the phone books.

The Role of a Funeral Director A death in the family burdens family members with grief and disrupts their normal life. With everything else, these mourners may not want the additional responsibility of thinking through and then planning and coordinating all the details of the funeral. Fortunately, they do not have to. From the hour of death until the deceased person’s final disposition, a professional funeral director helps families through their time of crisis. The funeral director is the one person who, at various times, serves as advisor, administrator, supporter and caregiver. When the funeral director is called after a person dies, one of his/her initial responsibilities is to bring the deceased person’s body to the funeral home. He/she also secures information for the deceased person’s death certificate, which he/she then completes and files with the proper legal authorities. The funeral director

178 meets with the family to discuss arrangements for a visitation, if the family requests one, and a funeral. In accordance with law, custom and especially the family’s wishes, the funeral director helps them make choices that meet their needs. These choices may include a traditional funeral service and visitation, a memorial service without the body present or immediate disposition. Should the family choose to have some type of service, the funeral director helps them choose the place and time for a service and the clergyman or other person who will preside at the service. He/she also provides information to help the family choose a casket or other burial container, a memorial stone or appropriate marker and the means of final disposition – usually burial, cremation or entombment.

On the day of the funeral, the funeral director attends to a number of ceremonial and administrative details, as well as to logistical matters such as transportation. Both before and after the service, the funeral director helps the family complete necessary paperwork, including obituary notices, claim forms for social security, veteran’s and union benefits, and insurance. Because the emotional impact of death often makes it difficult to concentrate on the details of legal forms, the funeral director’s help in this area is especially appreciated by grieving families. The funeral director’s role is not limited to logistics and paperwork. He/she is also ready to help families work through any concerns they may have resolving their grief. Today’s funeral director is trained to answer questions about coping with death, to recognize when a person is having difficulty accepting the loss of a loved one and to recommend sources of professional counseling for those who need it. Many funeral directors play an active role as caregivers outside the funeral home. They may be involved with nursing facilities, hospices, and with self-help groups. In essence, the funeral director’s role in serving bereaved people is similar to the general medical practitioner’s role in serving the ill. Taking care of their basic needs and helping guide them to specialists when extra care is required.

We should live with full awareness and die, when the time comes, with dignity and lightness, “in good spirits”. In this way, our loved ones will not only be inspired to live well but be able to visualize their own deaths as a time of outreaching peace and openness. A caring society’s task is to create conditions that render such a death not only possible but also commonplace. Whatever technology we employ in terminal illness should be directed toward aiding “a good death”; first, however, we must rid ourselves of the debilitating and despairing dogma that death is an unmitigated evil and absolutely final condition.

Cremation or Burial The decision between cremation and burial is a very personal one. You can have a full funeral service with your child’s body present, in a casket, and the cremation can follow

179 later. With this type of funeral, your child’s body will usually be embalmed. This procedure preserves the body, which enables you to have a viewing prior to the funeral, or an open casket at the service. Another, less expensive, alternative you may wish to choose is to have the cremation done first, followed by a service. Many parents choose to have the urn containing the ashes at the services, along with a picture of the child. If you decide to have a service with a casket before cremation, you then return to the funeral home, a few days later to collect the ashes. Do not feel that you must purchase an urn from the funeral home, as you may decide you prefer a special type of container more suited to you child. If you do not purchase an urn, the ashes will generally be placed in a plastic urn by the crematorium. Some funeral homes include the plastic urn in their fee, while others charge you an extra fee. What you do with the ashes is your choice. The funeral home will issue you a permit for burial, in case you want to bury the ashes at a later date. Most cemeteries have a section for the burial of urns and placement of a grave marker. Cemeteries usually allow urns to be buried in an existing grave of another loved one. Many families choose cremation because they do not like the thought of burial, and so do not choose to bury the urn. Some cemeteries have above ground locations, referred to as columbarium’s, where niches may be purchased to keep the ashes. Parents sometimes choose to scatter the ashes. If you plan to do so, it may be wise to wait awhile, as you may feel differently at a later date. Funeral homes often have temporary columbarium’s where the ashes may be kept until you decide what you would like to do with them. There is usually a fee for this service. If you decide to scatter the ashes; one option may be to find a cemetery that has a scattering garden. You can scatter your child’s ashes there and then place a plaque, which will state your child’s name, birth, and death dates, at the garden. This option allows you a place to visit if you choose. Some parents find comfort in keeping the ashes at home. Other parents have planted a special tree, at home or in a particular location, as a living memory of their child, and have buried or scattered the ashes around the tree. Do not rush your decision on what to do with the ashes. Remember, you can rent space at the funeral home for as long as you like, until you decide.

If you decide you would like to have your child buried, you will need to purchase a plot at a cemetery, which can be municipally, privately or church-owned. Buying a plot at a cemetery is usually not too expensive, but will vary from town to town and city to city. You may wish to purchase a family plot, if you would like to arrange for other family members to be buried alongside the child at a later date. Most cemeteries offer a section that only contains children’s plots., which are often less expensive. Whatever your decisions, it can be made before the death of your child. Some cemeteries require the use of an outside container, sometimes called a burial vault, in which the casket is placed just before burial. These containers can be constructed of various materials, including concrete, metal,

180 fiberglass or wood. Burial vaults range in price and can be purchased from the funeral home. You will need to inquire about the regulations governing what type of headstone will be allowed. Some cemeteries allow upright headstones, while others only allow headstones that are level with the ground. Most headstones are very expensive, and they can always be purchased at a later date. Most often, the cemetery supplies a grave marker, which can be left in place until a headstone is purchased. Before the burial takes place, you will be required to have a Burial Permit, which can be obtained through the funeral director. If you have not used the services of a funeral director, take the death certificate to the nearest Vital Statistics office or to your local hospital registrar to obtain a Burial Permit. People have different customs and wishes concerning burial. Some have prayers said at the graveside and then leave before the coffin is lowered. Others stay until the coffin is lowered and then place flowers on top.

Flowers and Memorial Tributes Flowers – most friends and relatives send flowers to the chapel or to the home of the bereaved. When flowers are sent to the chapel, the funeral director gives the family the cards that were attached to them. At a later date, you may wish to send thank-you notes to your friends and relatives.

Donations to Charities Because families often receive large amounts of flowers, many of them request that people make a donation in memory of their child to a specific charity or fund, in lieu of sending flowers. families may make this request in the funeral announcement or in the obituary, which is placed in the paper or aired on the radio. The charity will normally send a notification to the bereaved family, stating the names of individuals who made the memorial contribution. Again, you may wish to send thank-you notes for any contributions.

Memorial Funds Other families choose to start a memorial fund in the name of their child. Funds have been set up to assist other families in similar situations or to further research into the particular disease from which the child has died.

After the Service Coffee and Luncheon Gatherings – many families have coffee and a small luncheon after the service, which enables all to pay their respects and express their sympathy to the family. A room is often available at the funeral chapel to accommodate this, and a fee is usually charged for use of the room. You may wish to hold the luncheon in a room at the

181 church and to hire the church’s ladies group to prepare it. Many families choose to hold the luncheon at their homes, with friends and family preparing the food.

Funeral Costs The cost can vary largely between funeral homes, so do not be afraid to ask about costs, and do not allow yourself to feel forced into anything. Remember that you do no have to agree to an expensive funeral; your love for your child is not measured by the expense of the funeral. You can show your love with a simple funeral, and all funeral homes should offer this option. Ask funeral directors for a detailed list of the services they provide and the cost of each. You may find that there are arrangements you or your relatives can make yourselves, instead of paying the funeral home to make them. These types of things can range from placing obituary ads in the paper to purchasing the flowers. Do not feel guilty about not buying the most expensive casket or urn. Question issues such as whether you should purchase an expensive casket for the funeral ceremony, if it will later be cremated. If you plan on scattering your child’s ashes, should you purchase an expensive urn? Far too often, families are left with very large financial bills to deal with on top of their grief. If your family cannot afford to pay for the funeral, the Department of Social Services within your state offers programs that will pay for the funeral service. If you choose this option, the government agency will determine the type of funeral, as they have a set fee, which they will pay to the funeral home for the funeral service. Ask your funeral director for the necessary forms to apply for this assistance.

How does attendance or nonattendance at a funeral influence children’s reactions to death? Denying children the right to attend a funeral tends to reflect the anxieties and concerns of the adult rather than the children’s actual ability to cope with the situation. By attending the funeral the reality of the situation will be reinforced in the children’s mind and prevent them from developing unrealistic ideas or fears about the death of a loved one. Parents and relatives should not be distressed that children attending a funeral will be exposed to crying and grieving. It is at times like these that children learn that having and expressing such feelings are normal. The facts of life are that adults do cry. Funerals are an accepted means of group mourning. They allow the bereaved an opportunity to be supported while expressing their grief. The community acknowledgment of the death provided by the funeral also acts to prevent excessive denial. The important question, then, is at what age, or stage of development can participation in a funeral is supportive of children’s capacity to recognize, accept, and work through the death of a close person? Prior to the second half of their first year, infants are not able to see themselves separate from their surroundings. Funerals will have no direct meaning at this age. This is not to say that the death for them to a parent or sibling has no emotional

182 impact on infants. The impact, however, is indirect and comes through the mourning survivors’ inability to provide infants with their usual care. Until children can grasp intellectually the meaning of a funeral, the event is likely to be an additional emotional burden for them to bear. It would be wrong to base one’s decision about funeral attendance solely on developmental considerations. Death perceptions precede death conceptions, and the attitudes of important figures in children’s lives may have a greater impact on their response to death than will their intellectual understanding. The less able children are to grasp intellectually the meaning of death, the more dependent they are on the emotional climate provided, and the more likely they are to misinterpret it. It is unusual for children under the age of six or seven years to experience funerals as a useful psychological event.

The funeral should be explained in terms that describe how the family views it. The decision to go or not should be the adults’, but around the age of six to eight, children should be asked if they wish to attend the funeral. If the child does not wish to go, that decision should be respected. Children who wish to go but are not allowed sometimes exaggerate the mystery of the funeral. Whether children go to the funeral or stay home, someone who is not so involved should accompany them and can give them undivided attention. How children will react if they do attend the funeral will be predicted by their past experiences as well as their present support. Children who have been active in arranging funerals for pets or discovered dead animals often seem better able to experience their passive roles at the real thing. If the deceased is a distant friend or relative, children are usually better able to handle the funeral than if the death is of a parent, sibling, or someone else to whom they are very close. How often they have attended church or temple and how comfortable they are with the services are also important considerations.

183

Chapter 9

Death and the Well Child: The Psychological Aspects

The particular circumstances of the death of a loved one are additional factors that influence children’s reactions to the death. Variables such as quickness or slowness, painfulness, or painlessness, will have their effect. If the death took place under

184 honorable or dishonorable circumstances, accidentally or from old age, in the child’s presence or absence, the result and reaction will be different in each case.

Death caused by such unexpected disasters as tornadoes, floods, or earthquakes has a shocking effect on children. When the death of a parent is caused by a sudden accident, the shock can be overwhelming. If a member of the family, a son perhaps, indirectly caused the accident, he may never forgive himself. The family may either blame him outright, or may try to protect him from his influence on their reaction. Different effects and reactions can be observed in the case of the loss of a mother, father or sibling. The death of either parent uproots the entire family and deprives it of emotional and financial support. Children may feel lost without the loved parent to turn to for guidance and affection. The death of either parent influences the role they must play in the family and society. Children need their parents at all ages, but their age and the degree of their dependence make a difference in how much the loss affects their lives. Younger children feel deprived when they see their peers participating in activities that include fathers, such as Boy Scouts. They are definitely affected by the loss, and they envy other children who have a father. The teenage son who is faced with his father’s death has to be helped to find his rightful role in the surviving family. His mother wants him to be the “man of the house” and his siblings expect him to take their father’s place at a time when he himself needs a father as a guide. Opportunities for education, social and recreational experiences that are a part of youth and growing towards maturity – all may be greatly altered by the father’s death. The son becomes angry and depressed that joy and freedom have gone out of his life and left sadness and sorrow. His is filled with confusion, resentment and guilt.

The surviving family needs to help every member share in the responsibilities that arise at the death of a father; no child should be expected to give up his or her own right of self- fulfillment. The death of the mother in a family is very traumatic to her children. Their age is important in the way their mother’s death affects their future and development. Children who have been deprived of mothering and who have formed no personal human bonds during the first two years show permanent impairment of the capacity to make human attachments in later childhood. The type of mothering they receive from the substitute will influence their future development. In some adults, the disturbance caused by loss in childhood is hidden but is damaging to their lives. They are unable to feel close to anyone. Their relationships are shallow and meaningless. A portion of affective life is cut off because they do not want to become involved and be hurt by another loss.

185 In summarizing the nature of children’s reactions to a parent’s death, children in comparison to adults, do not pass through a mourning that includes the gradual and painful emotional detachment from the person who has died. Two major contributions to the childhood parent-loss area hold that mourning is found in children. Even these two claim to observe mourning in children only under exceptional circumstances, which involve active clinical efforts to facilitate the mourning process and intensive counseling of significant adults in the children’s lives. Promoting the expression of sad effect and do not claim that the processes of internal emotional decathexis actually occurs in children. Reaction to parental death in childhood is not mourning but rather a complex series of defensive responses aimed at denying the reality of the event.

Children’s reactions to the death of a sibling are different than to the death of a parent. Guilt and fear are the two most common reactions observed. Some sibling rivalry is part of every family, and children may experience the loss of a sibling as the result of their feelings of envy, or their anger at the intruding child. This then arouses guilt and anxiety about being punished for having caused the death. The parents can help children cope with the loss of a sibling by realistically indicating what happened to the deceased child; being aware that the children are going to form some explanation of why the death occurred and helping with the feelings associated with this; and assuring the children that their feelings were not the cause of the death. Children’s everyday encounters with life and death can also influence their responses and attitudes toward death. Their seems to be a difference between rural and urban children’s experiences with death and points out the effect this difference in exposure may have on children’s reactions to death. Rural children have more opportunity than urban children to witness the birth and death of living things so that the meaning of death becomes more a reality to them. Country children are close to nature. All around them they see living and growing things. They watch the sprouting seed and the growth of flowers and fruit. They see the birth of calves and other animals. Just as they experience life through close contacts, they are also exposed to death. They learn to accept death as a reality and part of life. City children, on the other hand, are separated from nature by the walls of houses and cement. Although schools sometimes have animals in the classroom, it is not enough. When death occurs, city children may be surprised and shocked because they are far from nature and its constant cycle of life and death. In conclusion, it may be said that children’s reactions to death are influenced by numerous factors. Of all the factors discussed the most important influence on how young children act around the time of a death is the response of their parents and other adults around them. When a sibling dies, children temporarily lose their parents too, in the psychological and emotional sense, since the parents may be so overcome by their own loss that they have little emotional support to give to the surviving children. Unable to

186 understand the permanence of death, young children may consider adults’ behavior excessive. On the other hand, children’s developmental inability to mourn in a manner similar to adults often disturbs relatives and friends. They may find the children’s frequent hyperactivity, concern for concrete matters such as food, and lack of sadness as irritating signs of insensitivity. Since guilt is one of children’s typical reactions to death, when they are scolded for not acting in a way they are not able to, their confusion and guilt will only be increased.

Children’s “mourning” for the death of a significant person in their lives requires a good deal of understanding patience. Like adults, children have a need to work through their grief and anxieties. They should share their feelings, both positive and negative, about the deceased with the family. Their recollection of the dead person should be encouraged, as should participation in discussions with the family about the future. Normal, emotionally healthy children can successfully cope with the experience of losing a sibling or parent through death. With patience and consideration, children can be aided in healing with such an opportunity to talk about their loss; they must be helped to realize that life around them continues, and they must contribute to in spite of their loss. Their life style may be changed, but with the proper help they can adapt to the changes. The suffering that children undergo with the death of a family member can be a growth experience if handled properly by the adults around them.

Death and the Child – The Psychological Aspects – in the past, death was a very important part of family life. Loved ones died at home, where adults and children both shared in the death experienced. Death has changed from being an expected and accepted part of a child’s life to a somewhat rare occurrence. Children today usually graduate from high school without ever experiencing the death of a loved one. Death has become an other-related event rather than a self-related event, because neither children nor their parents are in immediate danger of dying. In fact, only about one in twenty children suffer the loss of a parent, through death, by the time they are eighteen years old. Children, by seeing dead animals and watching television, become aware of death at a very early age and may even inquire about it. When adults avoid talking about the subject, children interpret this to mean the subject is to be avoided. Children come to the conclusion that death must be bad if their parents will not discuss it with them. In effect, adults cause children more grief by not talking to them about death. This causes children not to tell adults how they feel about death. A delicate balance must be found that will allow children to express their ideas about death. This is necessary because a child might not be able to psychologically handle the subject of death. In trying to find this balance between avoidance and confrontation, adults have to:

187 1. Try to be sensitive to children’s desire to communicate when they are ready. 2. Try not to put up barriers that may inhibit children. 3. Offer children honest explanations when we are obviously upset. 4. Listen to and accept the child’s feelings. 5. Answer the child’s questions, instead of putting them off by telling them they are too young.

The person who is keenly alive, and whose capacity to experience feeling is highly developed, can best cope with death, though the loss will be felt deeply. Children need to express, in some manner, the intense emotions they feel about death, rather than letting them accumulate and explode at a later time. Children and uneducated adults base their reasoning abilities on what they see. Some of the logical conclusions derived from these observations are: 1. The body and soul are two separate entities. This reasoning is based on the observation that while asleep, they see and feel things that are not dependent on body participation. 2. Time is not constant. It is also observed to be progressive and never digresses for anyone. 3. All living things observed by a child die. Flowers and animals eventually die.

Another factor influencing children in the formulation of their ideas is that the language they are learning to use has many strange references to death. The car will not start because the battery is dead. In a dart game, while killing time, someone throws one dead center. An exasperated father yells to kill the light after he has come home dead tired, because he has spent all day with deadbeats who are trying to make a killing in the market. On the other hand, adults try to avoid the use of the words dead or die when death itself is actually the subject. So we put pets to sleep, and people pass on or we are lost or expire “when we really mean they are dead”. When children reach the age of ten, they usually view death much as adults do. They also may start to question death rituals and customs. The major influences on how children perceive death are their developmental stage and their life experience. From the age of ten through adolescence, children begin to realize that death is a one-way process that is inevitable. Some children try to develop philosophical views of life and death, while others react to their fears by taking daring chances with their lives. The rate at which children experience life, express and handle feelings depends on the individual. Some children may not be affected by the death of a grandparent, but will react deeply to the death of a pet. Children often feel guilty about the death of a close relative and sometimes think they caused the death. We must realize

188 that anger is an important part of grief reactions. Therefore, children should not be scolded for expressing feelings of anger.

Grief reactions in children take on many forms, and it is extremely important for a mourning child to exhibit some type of grief reaction. Some possible reactions to death are: 1. Shock – many people experience shock when told that a loved one has died. Their mind appears to be elsewhere, as they lose touch with reality. 2. Somatic Symptoms – it has been found that when people experience acute grief they often exhibit a change in body symptoms. Some of the common symptoms of bereavement are shallowness of breath, fatigue, insomnia, and loss of appetite. 3. Denial - the first step in the mourning process is testing and accepting the reality of the loss. Children’s denial of death is the result of their unwillingness to accept its finality some typical denial responses are: “I don’t believe it.” “It did not happen.” “It’s just a dream.” “He can’t die, he’s my brother.” 4. Anger and Guilt – grieving children often have reactions of anger. They might aim their hostility at innocent bystanders because they have not experienced the same loss. Many children have feelings of guilt because they think they caused the death of a loved one. Children often blame doctors and nurses for not using technology to its utmost to save their loved one. Hostile feelings are even directed at the deceased person for causing so much grief and loneliness. 5. Embarrassment – many children experience embarrassment when a parent or sibling dies. They know that they did not cause the death of their mother, father, or sibling, but they still feel uncomfortable and are humiliated when the topic comes up. 6. Depression – depression is experienced by most children who are grieving. They often feel hopeless and emotionally drained. 7. Fear – children who have experienced death often fear that death will strike again. Children who have lost a parent ask some of the following questions concerning fear: “Who will take care of me now?” “Daddy used to bring home money for food and toys.” If a sibling dies the child may anxiously wonder, “Will I die, too?”. 8. Children are naturally curious about death and they will openly show their curiosity until, through adult influence, they learn that the subject is considered taboo. 9. It is common for children to feel sad after a death of a loved one. When this happens, they are unhappy for a while, but they quickly become happy again. The intensity of grief may be too much for the child to bear for a prolonged period. 10. Replacement – Grieving children might try to substitute the love of others for that of the deceased parent or sibling. They may ask for reassurance from the surviving parent or substitute another child for the lost sibling.

189 11. Assumption of mannerisms of deceased – children often emulate the deceased parent. A boy might try to assume his deceased father’s mannerisms by talking and walking like him. The child may adopt characteristics of the dead sibling, such as taste in clothes or hobbies. 12. Anxiety - can grow into widespread phobias of all kinds and cause the child to withdraw from many normal activities. He/she may become emotionally disturbed, be unable to concentrate on his/her schoolwork, or insist on staying home to see that nothing happens to his/her parents.

The death of a parent, brother, or sister is the hardest for a child to cope with. As a result, emotional and mental problems may occur. There is a thin line between normal psychological mourning reactions and unnatural mourning reactions. Unnatural reactions might be a continued denial of the death even months after the event, apathy, prolonged anxiety and bodily distress, persistent hostility to the deceased or others, and excessive idealization. There is no clear cut way of determining when a child may need outside help. Professional help should be sought if the following symptoms occur: regressive changes in bowel and bladder control, persistent sleep problems, excessive aggression, hyperactivity, prolonged loss of ability of concentrate, and wild alterations in emotion or expression of thought, which seem markedly different than the child’s previous behavior. Caution should be taken if mourning never occurs in a child. Some of the effects that may occur as a result of delayed or unexpressed grief are: 1. Problems in school. 2. Juvenile delinquency. 3. Sullen withdrawal. 4. Promiscuity. 5. Unwillingness to make friends.

Coping with the inevitability of death, and expressing our feelings and reactions when someone we love dies, helps us to survive. The best rule for adults to follow is to be honest when talking to children about death. The use of euphemisms should be avoided when explaining death. Telling children that a dead person has gone to sleep might cause them to fear going to sleep. Or children who are told that God took someone in death might become angry or fearful of God. Death is an integral part of life, and a healthy attitude toward it can only enhance life. Childhood experiences are often the foundation for how adults view life. Early positive death education is essential for children.

Bereavement – following the death of a loved one, three phases of grief occur: a. Phase I – Shock and Disbelief – during this phase the bereaved are intensely

190 preoccupied with the image of the deceased. Mourning commonly experience somatic distress that occurs in waves lasting twenty to sixty minutes. They experience an empty feeling in the abdomen, lack of muscular power, a feeling of tightness in the throat, a need for sighing, and choking with shortness of breath. The bereaved are also strongly preoccupied with feelings of guilt. They magnify incidences with the dead one in which they may have been negligent. b. Phase 2 – Developing Awareness – the bereaved experience a disorganization of personality in this phase. They feel a persistent and insatiable yearning for the dead person. Pain, despair, weeping, and a feeling of helplessness characterize this phase. c. Phase 3 – Resolving the Loss – the bereaved recognizes and accepts the loss of the dead person and begins to form new relationships with other persons. Mourning or grieving is successfully completed when the bereaved can remember completely and realistically the pleasures and appointments of the lost relationship.

Reintegration of the family - after the child’s death is related to several factors. These factors include attitudes developed before death and activities engaged in prior to death. Families that remained actively involved in the child’s care and the decision-making process seemed far able to resolve their grief after their child’s death. The maintenance of their role as parents during the dying trajectory seemed to strengthen their view of themselves as parents and individuals. Fulfilling their role expectations seemed to also strengthen the appreciation of husband and wife for one another. After the child’s death, the family faces a new identity and members of the families are faced with new roles. They are no longer a family with a terminally ill child. There is a dramatic difference in the mobility and flexibility of the family without such a child. Families find few friends or relatives willing to talk about the dead child. Peer-support groups that have been established before the death of the child seem to help. Groups started after the death appear to some families as “therapy” and are rejected unless desperately needed. Most family’s experience what would be considered to be a normal grieving process, but the relief of knowing that the child is no longer suffering tempers these. Sibling reaction to the death must be considered in reference to their age and concept of death. Religious beliefs sometimes make it easier to explain the death to a sibling. Their parents overprotect most remaining siblings.

Siblings Help the parents help their children Surviving children may be puzzled by their parents’ behavior. They will not understand why they are not allowed to cry around Mommy, or why Daddy does not want to play ball anymore. Unable to verbalize their own sadness and fears about death, and seeking the

191 attention their grief-stricken parents are unable to give them, they may develop somatic complaints or act out by becoming bullies. Other may retreat into a private world of dark thoughts. Some may contemplate suicide. The sibling’s relationship with the deceased and with his/her parents has a major impact on how he/she grieves and heals, so does his/her age and developmental stage. A child under 2 understands the concept of separation, but not death. To him/her, the person he/she loves is here, and then not here – as in a game. A child between the ages of 2 and 5, on the other hand, sees death as temporary and not quite real. Between the ages of 6 and 10, a child grasps the reality of death and becomes curious about its biological aspects. He/she often wants to talk about the details of burial or cremation. Beginning around adolescence, the child’s concept of death resembles an adult’s.

You can help parents help surviving siblings by gently offering some suggestions. First, encourage them to be more open about their own grief. Tell them to encourage their children to express their emotions, too, and to reassure them that negative feelings they may have had about their sibling are common and nothing to feel guilty about. Books can be a great stimulus for children to begin talking about their loss. Advise parents that if surviving siblings want to attend the funeral service, they should be allowed to do so. Also tell them that their children may wish to write a letter to the deceased, or draw a picture to be placed in the casket. Art, aggression, and play therapy can help siblings, too. How children think about death – to help a child through feelings related to a sibling death, you will first want to teach parents about the thoughts and behaviors that are common in the child’s age group. Then encourage them to follow through with the appropriate interventions:

Infancy – thoughts – no concept of death. Reacts to parents’ emotional state. They sense when things in the family routine are different. Experiences separation anxiety. -Behavior – Crankiness, clinging and crying. May stop eating, vomit or break out in a rash. May become very “clingy” -Interventions – Wrap infant in a warm blanket. Offer reassurance by holding the child. Keep his routine as normal as possible. If you are too distraught, have a close friend or relative feed, bathe, or put the child to bed so that he feels cared for during these important times. If necessary, seek professional help.

2-5 Years Thoughts – very curious about life and death. Sees death as temporary, reversible, and measurable in degrees. Believes people will come back, that death is not forever. They will connect events that do not belong together (old people die, Daddy is very old, Daddy may die too) Believes death only happens in magical terms and may think

192 that dead people live underground. Child may think that sibling died because he once wished the sibling dead, he is responsible. They may play “dead” or “funeral” -Behavior – May show little concern. Child may regress to Infantile behavior and fear separation. Child may also make inappropriate comments such as “My brother was bad and he had to leave us”. -Interventions – Tell the child what to expect, using correct terms such as dead or death. Respond to child’s need for security by holding him and reassuring him. Allow the child to talk about the fact that his sibling has died.

6-9 years – Thoughts – Has clearer understanding of death and becomes aware that he too can die. Realizes that death is final and people he loves can die. May begin to fear death. May be interested in the biological aspects of death. They need more detailed explanation of why the person died. They connect death with violence. -Behavior – Crying and anxious, with grief reactions that ebb and flow. -Interventions – Refrain from such clichés as “God was lonely and wanted your brother.” If the child is cranky, be responsive without punishment or judgment. Reassure the child that everyone will work together to get him through this rough time.

10-12 years-Thoughts – Death is personal. Child has a realistic view of death. They realize that death is inevitable. They need encouragement to discuss the subject because expressing their feelings is embarrassing. -Behavior – May experience separation anxiety. May be fearful and reluctant to leave home and parents. Day dreaming and poor grades are common. May lose some manual skills. Child often tries to fix the situation the situation by offering to do extra work to comfort the grieving parents. Child often distances himself from others. -Interventions – Ask the child if he is scared that he may die at the same age as his sibling. If this is a concern, reassure him that just because his sibling died at that age does not mean that he will. Provide child with honest explanations of death. Give him permission to attend the funeral and allow him to participate in funeral plans. Listen attentively to how he feels hug him often, and do not reprimand him for poor grades.

Adolescence-Thoughts – Able to think about death and dying. Understands how fragile life is, yet still has feelings of immortality. -Behavior – Becomes preoccupied with death. May express anger and aggression. Takes risks such as driving recklessly and trying alcohol and drugs. May perform a suicidal gesture such as pretending his hand is a gun and cocking it at his temple.

193 -Interventions – Engage the child in conversation without ridiculing or criticizing thus encouraging him to open up. If necessary, ask someone the child has a special relationship with to begin such a conversation. If the child’s behavior begins to get out of control; try loving confrontation, using words such as: The things you have been doing lately concern me. I love you, but I am not happy with your behavior.” If necessary seek professional help.

The Family Undone: What Children Lose The Bonds Children Share Brothers and sisters share a special bond. After the connection with you, the parents, the bonds children share with their siblings are the strongest and most constant in their lives. Especially for young children, siblings are a continuing daily presence. They are playmates, confidants, competitors; they may also be protectors, tormentors, or special responsibilities. Siblings know each other more intimately than anyone else. Siblings know, as no one else in the world does, what it is like to grow up in your particular family. Relationships with a brother or sister help children know who they are and how they fit in the family. The bonds between siblings are woven into the fabric of each one’s life. As we did with parents and children, we can examine the fibers that make up the bonds between siblings, to understand what children lose when a sibling dies. These bonds are so much a part of your family’s life, so self-evident that you may not even speak of them. But they are worth restating here because when a child dies and the bond is severed, all the fibers are left hanging. To understand what your surviving children have lost; it helps to look again at what they have had. 1. A constant, daily presence – especially when children are close in age, a child may simply never have known a life without brothers and sisters. Preschoolers eat together, play together, fight together, take baths together, and go to sleep together. Although differences in gender and temperament and changing developmental needs soon place them on diverging paths, children see their siblings as ever-present and an important part of their lives. A four year old watches for his sister to get off the school bus; her return is a marker in his day. A high school freshman comes home from basketball practice and even as he heads for the refrigerator; he asks where his ten year old brother is. A sibling is so much a piece of the family and a part of a child’s life that life without him or her is unimaginable. 2. Playmate, Confidant, Competitor – because brothers and sisters are there, they are a child’s first and most constant play mates. They share toys and compete for them, and they collaborate in weaving the stories and fantasies that shape so much of children’s play. Siblings introduce each other to new skills and songs, new friends, to

194 off-limits places and forbidden games. They keep each other’s secrets stand together against parents. As in any intimate relationship, the bonds between siblings are threaded through with rarely exposed to others, and then only to a very few. A sibling and later, a spouse, a best friend, are usually the only ones ever trusted enough to be allowed a glimpse into the core of one’s self. Although all parents wish to peer deep into the inner recesses of their children’s minds, children as we know, often hide their true feelings from their parents. A brother or a sister is much more likely to know one in this most basic sense. 3. To have another person know you that well is indeed a form of intimacy. To lose the person who knows you that well is to lose a piece of your self. 4. Only a sibling knows what it is like to grow up in that family – children share the inside view of their parents and the private knowledge, both good and bad, of what life is like in their family. If there are only two children in the family and one child dies, for such children to lose their sibling makes them an only child, a sole survivor. The child they grew up with, who lived through their childhood with them, their witness is gone. 5. Relationships and siblings help children define themselves – through their interactions with brothers and sisters; children come to define their place and their value within the family and in their own eyes.

What children lose Childhood is the kingdom where nobody dies – this is an illusion – one of the essential illusions children require to grow up psychologically healthy. Although these ideas are not always consistent with the facts, they provide young children with a sense of comfort and safety. I am safe, and my family is safe. My parents will always take care of me. Nothing bad will happen to any of us. Nobody I love is going to die. As the canopy of illusions arches over children, it furnishes them with the raw materials and time they need to build their own internal sense of safety. Overtime, these illusions crumble under the weight of children’s own experiences. The loss of illusions, necessary losses, always hurts. But if the canopy has lasted long enough and the children have had time to establish reliable internal structures of their own, then the crumbling of illusions will not undo them. In children for whom those illusions are never fostered, however, the internal structure does not get built. Children who lose their illusions too early and too harshly will have significantly damaged the capacity to feel safe. Part of feeling safe is the conviction that people you love do not die, at least not until they are old. 1. Children do not die. Least of all your brother or sister. When a sibling dies, the whole bright canopy over children comes crashing down. They feel exposed,

195 endangered. 2. The burden of guilt – even children who were not directly involved in their sibling’s death will feel magically responsible. Brothers and sisters quarrel. They fling insults and angry words. They feel envy and hate. When a child dies, the living siblings, left with their angry words and secret wishes, may believe that their anger caused the death. Even adults easily slip into believing that angry thoughts cause harm. Usually our capacity for reality testing is sound; we check ourselves and remember that our thoughts do not make things happen. The younger children are, the less their life experience and the less established their reality testing, the more susceptible they are to their own guilty conviction that their thoughts killed their sibling. When a child’s death is violent and sudden, the odds are higher that the surviving children will hold themselves responsible. Children who believe that their thoughts or actions caused a sibling’s death carry a crushing burden of guilt. They are unlikely to reveal their belief directly; it is too awful. Their guilt will show up in changes in mood and behavior. They may isolate themselves from friends or deprive themselves of activities and pleasures they once enjoyed. 3. No one to talk to – A sibling’s death isolates children from their friends. Although they care about the survivors and can empathize with their sadness, usually friends cannot talk with children about what they are going through. The younger the children and their friends, the more this is so. Death is frightening, and young children do not seek out their painful and uncomfortable feelings. Whatever happened to the child who died might be contagious. Even adults think so – often adults force their children to avoid a bereaved family. When the cause of death was leukemia or a car accident or drowning, this notion seems irrational, but it is how young children think. Friends can comfort children, and they can offer relief from grieving that young children need and welcome. But children cannot look to other children for help with their grief. Bereavement groups for children are different. A bereavement group recognizes the isolating effect of grief and counteracts it by inviting children to share their stories. Hearing other kids talk is enormously valuable. Especially for young children, who feel like they are the only person in the world who has lost a brother or sister. They get in there and hear other kids talking about what happened, and you can practically see them starting to think. 4. A double loss – when a child dies, parents and siblings are stricken at once with the same grief. Although the fantasy is that they will cling to each other and comfort each other, what happens is often sadly different. Parents are so overwhelmed by their own grief that they cannot comfort their children or help them grieve. In such situations the surviving children suffer a second loss. Not only has a sibling died, but also they have lost their own connection with their parents. The younger

196 the children are the more devastating the loss will be and the more profoundly it will affect their development. Young children’s sense of safety and well being arises from their sure ties to the people who take care of them. When any important caretaker is absent, the surviving children feel abandoned to their own resources.

Preschoolers, unable yet to comprehend the irreversibility of death, feel the depth and breadth of their loss primarily through the change in their caretakers and in the quality of the relationship with them. By trying to hide your grief or making no mention of it, you do not protect the surviving children. Instead you deprive them of your help. You help them more when you allow them to see your grief. Expressed and explained in ways your children can understand, your own grief holds no terror for them. In fact, what you do will serve as a model for their own efforts to grieve. Children of grade school age and young adolescents feel their sadness so intensely that they cannot bear it alone. If they do not have an empathetic adult to talk with, they may suppress it. While they may push their grief out of consciousness, it does not go away. The struggle with guilt and ambivalence, and, more often than parents realize, confusion about the facts: what actually happened to the child who died. The parent’s withdrawal from the surviving children and their reluctance to hear their children’s pain and to help them make sense of what they feel, leave youngsters feeling abandoned and at risk.

A Climate for Children to Grieve As a parent, you want to help your children deal with the loss they have suffered. The last thing you want is to compound the loss. Yet three factors conspire to make it possible for parents not to see the extent of their children’s grief. 1. One powerful factor is our adult reluctance to know our children are suffering brings with it the obligation to help. If you know that your children are hurting as badly as you are, then you must do something. When your own pain immobilizes you; you simply may not have enough strength to help anyone else. It may be easier to believe that the children are too young or do not understand. 2. Children’s more limited capacity for verbal expression is a second factor that makes it easier not to see their grief. Children are simply not as articulate as adults; the younger the children, the less capable they will be putting their feelings into words. Young children may feel their loss as intensely as their parents do, yet never speak of it. Surviving children may feel forbidden to speak, or they may simply be unable to find words for what they feel. Children also take breaks from grieving; they can play with their friends or become

197 absorbed in a TV show, or beg to go to the circus even in the midst of their own intense grief. What for children is a necessary respite from overwhelming sadness may look to their parents as evidence that they simply do not feel the loss. 3. A third factor that tends to obscure children’s grief from their parents is children’s exquisite sensitivity to their parents’ tolerance for painful feelings. If children sense that a parent cannot bear to hear their feelings, then the parent will not hear them. The children will suppress their feelings, even at considerable cost to their own well being. Children can begin to deal with their own loss when you, as parents, grieve, allow your children to know of your grieving, and can hear your children’s feelings.

It is essential that grieving children maintain their connection with their parents. When families can come together and share the grief experience, quite positive changes are likely to accompany the distress, strengthening the family unit and all members …Families can develop a clearer sense of life priorities, an increases valuing of relationships, and a heightened capacity for intimacy and empathy. Achieving these positive changes requires time and hard work; grieving is indeed a long haul.

How Children Grieve Four general principles: 1. Grief is a natural and expectable response to loss. 2. Each individual carries within him/her an innate capacity to heal. 3. The duration and intensity of grief is unique for each individual. 4. Caring and acceptance are helpful to a person in resolving grief.

Inherent in these principles is the conviction that grieving children know what they need – we do not heal them – kids heal themselves. 1. Three perspectives on your child’s grief. a. Cognitive Maturation – children’s cognitive capacities – how they make sense of the information they have, how they understand time and the irreversibility of events, what distinctions they make between feelings and fact, between fantasy and actual event, and how large their fund of information and life experience is -all of these aspects of their thinking will shape how they understand what has -happened. As they mature and their cognitive capacities expand and change, their understanding will change. A child who is five when her baby brother dies makes sense of her loss as best she can, given what she knows about death and how she thinks. Five years later, this same child will have used the

198 significant changes in her thought processes that occur between five and eight years, her increased fund of information, and greater verbal skills to rethink what happened, ask new questions, and come to a more refined and elaborated understanding of her loss. b. A safe and helpful climate – your surviving children’s relationships with the adults who take care of them – how safe they feel to reveal their feelings, what kinds of support they need and what they can feel hopeful of getting, how much they believe they must take care of you, the parent, or spare you pain – shape what you will see of their grief. The quality of support and understanding your children receive from you and the other important caretakers also will determine how safe it is for them to feel. The younger children are, the more their own intense emotions threaten to overwhelm them. For children to feel safely allow their sadness and anger to emerge, they must feel they have a reliable, understanding adult to help to help them. If children do no feel that safe presence, they cannot allow themselves to feel. It is too dangerous. Instead, their intense feelings will lie unexamined and un-understood. They may find expression in chronic anger and aggressive behavior, or in depression, or in unconsciously driven self-punishing behavior. c. Your Children’s Individual Responses – who each particular child is and how he/she responds to events is the third line, the one you know the best. Whether a child is quiet and introspective or tends to show and magnify his/her feelings, whether he/she must seek a reason and an explanation for everything that happens or can accept events as explainable, whether he/she sees the world as full of hope or danger, whether in the face of stress he/she withdraws or gets active: characteristics like these are aspects of temperament. They are innate, part of who your child has been since the day he/she came into this world. From your experience as a parent, you know that although what you do can amplify or tone down aspects of children’s temperament, you cannot change who they are. Each child’s unique way of dealing with life also will shape how he/she grieves. 2. Children’s Understanding of Death Changes as They Grow – a chronological understanding of death. As any developmental timetable, the ages, the ages are not absolute, but consists of ranges; for others, these capacities will develop over the span of time. a. Zero to two – although at this age children do not understand death, they are aware of the absence of a familiar sibling. If they can talk, they may say the child’s name, asking for him/her. They experience loss most sharply through the change they sense in caretakers: their grief and withdrawal and in shifts

199 in the emotional climate: who is gone, who is available, and the quality of their involvement with them. Lacking words to frame questions, they will express their awareness of the changes through behavior. They may become fussy or harder to calm, or develop sleep problems, including nightmares. They may become more clinging or fearful, especially about separations from you. Maintaining your children’s usual rhythm and routines, within the limits of your ability, will reassure them. Be prepared to offer more physical comfort: rocking, holding, and whatever soothes them. Keep separations brief; you are their source of comfort and well being - your absence for more than a day will increase their anxiety. Remember that as they develop language, children’s comprehension runs far ahead of their ability to speak. They understand much of what you say, even when they cannot frame the words themselves. Use simple words that you have used before, and explain in a way that makes sense for a child. “Mommy is crying now. She feels sad. Aaron is gone, and Mommy is so sad.” b. Three to Five Years – young preschoolers have some concept of death but do not understand its irreversibility. Because, in their eyes, adults are omnipotent; they see death as temporary, an inconvenience that the grownups can fix. You will see your children wrestle with the concept of death’s finality again and again. This is the nature of all learning at this age; the repeating, the going over and over an idea. Just as your children love to hear a favorite story every night or like to watch the same video over and over, they need to ask you the same questions about what happened and think and talk about it again and again. Your children’s questions will be very concrete. They will want to know about the facts and the practicalities of death and burial, of what happens to bodies. When you provide your children with straight forward answers, you help them to know what happened. When they know what happened and know you will help them make sense of it, you have helped them begin to find a way to live with their loss. Because their life experience is so limited, preschoolers need continued clarification and reassurance that what happened to a sibling will not happen to them. They probably know that you can catch colds and the flu from other people; they need your assurance that they will not catch heart disease or sudden infant death syndrome or a car accident. They need to know that their parents will be there for them and will continue to take care for them. Your assurances and your patience with your need to go over the facts with you, again and again, are the threads from which they will reweave their own protective canopy. In the best of times, caring for preschoolers is hard work. When you are overwhelmed by

200 your own grief, especially early on, you may very well want a brief respite from the tasks of caring for young children. As you make your plans, try to look at things from the children’s perspective: Something terrible has happened to their brother or sister, and it could happen to them. Nothing feels right. Mommy and Daddy are sad all the time. They say the children will be at Aunt Peggy’s for a week, but what does a week mean? To children at this age, leaving the family feels as if they will be lost forever. At three to five, children’s sense of time is very different from yours. When Amanda said “next week” she meant some time in the future, it might refer to any future time, close or distant. She did not have the same sense as an adult has, of what seven days are, how long a day and a week feels, and how you count them off. A month after her baby sister died, Amanda’s mother decided she needed some time all alone, and her sister offered to take Amanda for a week. Amanda loved her cousins, and she had visited with them often. But she remembers the week at her aunt’s as endless, and she believed it meant the end of her family. I was scared my Mom and Dad had died too,” she remembers. c. Five to Seven Years – this is a time of enormous change in children’s thinking capacities. Between five and seven – roughly between the beginning of kindergarten and the end of second grade – your children’s thinking shifts from a primarily magic and fantasy mode, in which wishing makes things happen and the world is populated by ghosts and dragons and dream figures, to a more reality-based mode, organized around time awareness, rules and expectations, and a greater interest in how the world works. A seven to eight year old does not think like an adult, but the outlines of adult thinking are taking shape. These changes are reflected in children’s understanding of death. They now understand that death is irreversible. Their life experience now includes the deaths of insects and birds, of a pet, perhaps the deaths of people they have known. They know that death brings sadness and a sense of helplessness. Their emerging moral sense makes them question the fairness of death. They may voice their anger and outrage or express it in explosive physical activity. Conscience develops in this era, and it tends to be harsh and inflexible. Children are likely to examine their own actions and may well hold themselves responsible for a sibling’s death. d. Eight to Eleven Years – in these years, children refine and develop their understanding of cause and effect and their skills in logic and problem solving. Their store of information and experience expands, including their knowledge of death. They have learned enough about disease and accidents and violence

201 that they conceptualize causes of death much as adults do. Yet elements of magical thinking persist in the tendency to believe that one’s thoughts and wishes can cause harm. Children of this age see death as all powerful, something that can come to get them. At the same time, their thinking is still sufficiently self-centered and magical that they hold themselves responsible for failing to stave off death. “If I would said my prayers every night it would not have happened.” Frequently children of this age will see their sibling’s death as their fault. Inaccurate as this conviction is, it causes them great pain, and it seems impervious to parents’ efforts to convince them otherwise. What helps children more than reassurance or them dismissing their idea is simply to ask them to tell you more you more about it and them to listen respectfully. By understanding that you take them seriously and appreciate how bad they feel; children gain the room they need to rethink things. Between ages eight and eleven, children’s capacity for empathy expands: they are able to see their parents and others as specific individuals, with specific strengths and needs. Children learn to attune themselves to their parents’ feelings, often reading the adults moods with astonishing sensitivity. Children’s increased empathy is a double-edged sword. At best, it indicates a new level of maturity and the development of a vital means of connectedness between people, a trait with an immature and still often inaccurate reading of your needs, children’s sense of your pain may make trouble for them: If they feel that you are too much awash in your own grief, they may protect you more than you wish or need. Sensing your pain, they may decide that you could not bear to hear theirs.

They may be right. But they may misread you and shut down the connection with you that they need in order to sort out their own feelings. There is a balance to be struck. Children need to see your grief. If you were to deny it or suppress it, they would know that there was something desperately wrong and that you were not dealing honestly with them. Your expression of your grief, and your efforts, over time, to come to terms with your loss and your life, offer your children powerful models. The balance – and it is not a one-time thing, but a continuously evolving equilibrium – has to do with letting your children see enough of your sadness that they feel they know and share your experience, but not so much that they fear for you or feel overwhelmed. You will not get it right the first time. No one does. But if, over time, your children know both the measure of your pain and that, most of the time, you

202 can table it and be available to them, and then you have taken a significant step toward creating the safe climate they need. e. Eleven to Fourteen Years – in this age span, children gain the capacity to think about ideas and abstractions as adults do. They understand death as adults do and now struggle to integrate this understanding with their emerging religious and philosophical concerns, such as causality, eternal life, good and evil. Many young adolescents find this kind of mental activity very attractive, because it enables them to use their developing powers of abstract thinking. When they have experienced a loss as painful as a sibling’s death, adolescents also find that philosophical discussion helps them distance themselves from the pain they feel and their unbearable sense of helplessness. Early adolescence is also the time when children are beginning the natural but demanding process of detaching themselves from their family. In order to grow toward psychological independence, they must loosen the ties of dependency that have bound them to parents all their lives. This is a long process; one that proceeds by fits and starts over the next ten years. As they begin to pull away, the prospect of sharing with you the intense and painful feelings that the death of a sibling stirs up may feel dangerously regressive: It threatens to pull adolescents back into the very dependency they are working so hard to outgrow. They need and want to talk about their feelings – but with anybody but you! Your children very likely may find another adult, or a friend of the same age, and do much of their grieving and soul searching with that person. They may or may not let you know that they are doing this. As a parent, you may see a child who is aloof and remote with you, who gives you no clue about him/her efforts to grieve. You face a complex question. Does your teenager’s refusal to grieve with you mean that he/she cannot grieve, or simply that he/she does not grieve with you? His/her withdrawal from you and his/her refusal to make use of the help you offer may well feel like yet another loss, and your feelings may be hurt. If that last statement sounds to you like a description of the facts of life for parents of young adolescents, you are right. In many areas besides grief, youngsters of this age seek their supports and discuss their concerns anywhere but home. It takes a good supply of self-confidence and a bottom-less well of tact to watch as your children spurn your best efforts to help. As a parent, you are now called upon, and will be increasingly so, to give up the familiar pleasures of care taking in favor of the less predictable rewards of watching your children seek their own way. When normal development proceeds on course, it inevitably brings with it losses. Time will be your ally in determining whether your child is grieving his/her loss. As the weeks and months pass, if

203 he/she returns to his/her usual level of functioning in school and with friends, and if you see he/she finds pleasure in his/her accomplishments, it is likely that he/she is finding ways to come to terms with his/her brother or sister’s death. The shadow of that death will not be dispelled lightly, or soon; as with you, his/her life will never be the same again. But if you see, in general, a return to his/her old strengths and pleasures, it is likely that he/she is doing what he/she needs to do. On the other hand, if you see him/her stuck in pervasive depression, or anger, or withdrawal, or turning to antisocial behavior, including substance abuse, then you have cause for concern. f. Fifteen and Up: Older Adolescents – by high school age, adolescents’ view of death is increasingly like that of adults. Like us, they recognize the possibly of children’s dying, and like us, they recoil in shock and outrage at the unfairness of it. Their thinking tends still to be highly self-centered; they often find it hard to see beyond their own experience and their own pain. Developmentally, older adolescents are focused on launching themselves into adult life. Their activity, in school and in their social life, aims at gaining the skills that they will need to function as adults. A sibling’s death can be such a wrenching loss that it saps a young person’s will to launch himself/herself. If you have an older adolescent, you already know that what you can do for him/her is increasingly limited; you can support his/her own efforts to grow and to grieve. Occasionally you can point the way to warn of pitfalls. You can be available when he/she decides to talk with you. Although this feels like precious little compared to all that you did for him/her when he/she was small, both your self-restraint and your availability can feel valuable indeed to him. g. Reworking Their Understanding – children’s understanding of a sibling’s death will change with time as surely as their size does. As they mature and the way they think is transformed, they will use their new capacities to transform their understanding of what has happened in their lives. It is as if you had an immensely complicated set of mathematical equations to solve, and at the outset all you had was a pencil and all you knew was addition. You’d do what you could, but you could not get very far. As you learned new mathematical skills and acquired a calculator, then a computer, and then fancier software, you would bring each of your new gains to bear on your task. Each new gain in knowledge and equipment would enable you to make more headway: You would come to understand the equations in greater depth, and you would think about them in different ways. Something like this process of continual reexamination and revision of understanding goes on for children as, over time, they develop a more sophisticated understanding of death. Two ages in childhood are marked

204 by especially dramatic changes in children’s thinking processes: five to seven and eleven to thirteen. If you have watched children move through either of these, you know how different their understanding is toward the far end of the age range, in contrast to the beginning. When children who have worked out an understanding of a sibling’s death enter a new development era, they will need to rework their understanding with their new intellectual tools. They are likely to bring up all sorts of questions – about what the sibling was like, and how they got along; about the death and dying and funeral arrangements, and about whatever religious explanations you have offered. For parents, this new round of questions can feel like something out of left field. It can stir up old pain. It may make you wonder whether the surviving children understood any of what you had worked so hard to explain. The process can be uncomfortable, but it is cause for reassurance, not worry. You can take children’s questions as evidence that they are growing, maturing intellectually. Their willingness to raise the questions with you offers further reassurance: It is evidence that you have created a safe climate, one in which they feel safe to reveal their concerns. h. A Lifelong Task – When your child dies, nothing will ever be the same again in your children’s lives. Their brother’s or sister’s death will cast a shadow across their lives as much as it does across yours. For the rest of their lives, your surviving children face an additional psychological task, of mourning their sibling, honoring him, and yet finding ways to move on with their own ways. Young people do not get over their grief, they live with it. To say that grieving is a lifelong task does not mean children will always be in mourning. The whole aim of grieving is to enable bereaved people to move on with their own lives. This is especially so for your other children, who have so much of lives ahead of them. Yet children, like you, will need a good amount of time – more than our culture usually allots – to come to terms with a sibling’s death. Some group meetings last for 15 months for teenagers. For your children, as for you, regrieving takes as long as it takes. In the wake of your child’s death, as you make your explanations to surviving children and offer them comfort, you are wise to regard your efforts as a beginning, not an end. The younger your surviving children, the more they will need you to help them understand and grieve, and the longer they will need your help as, maturing, they rework their understanding. Helping children to make sense of what has happened to a sibling and to all of the family, helping them to grieve, and helping them take the measure of their loss as their lives go forward – these are long-range tasks. These tasks will not always stand in the center of their lives, or yours, as they do now. But neither will their loss ever wholly recede from their awareness. As you and your children work on these

205 issues, it will help you to know more about the significant differences between children and adults in how they experience their grief.

How Children Grieve Differently from Adults After talking with a lot of parents who are concerned that their children are not feeling anything from a loss or are not grieving, but hearing what the kids are doing or talking to the kids, it is clear that the kids are in great pain and are grieving. Too often parents expect a child to respond at the same time, with the same intensity, and in the same emotional style as the parents. Kids just do not work that way. Children do grieve differently, and the younger your children are, the more pronounced the differences will be. Here are some of the principal ways in which children grieve differently from adults and some recommendations about how you can help your children. 1. Children are more physical – children tend to experience and express intense feelings in physical ways. Your children may need opportunities for active physical expression: playing sports, riding a bicycle, pounding nails into a board. You need not prescribe the activity; children will know what they need and will find the outlets that work for them. Physical symptoms are another form of expression. Your children may complain of headaches or stomach aches, may sleep much more or much less, or may show changes in appetite. Whatever your children’s familiar patterns of physical response to stress, you are likely to see them now, in the face of this particular severe stressor. If a sibling has died from an illness, one child may experience some of the same symptoms his/her sibling did. For parents, this can be especially disturbing. You should understand that the reproduction of his/her sibling’s symptoms is not intentional or under his/her conscious control. Nonetheless, the symptoms need to be evaluated, so that both you and your child can be reassured about the nature and severity. Usually, when you can reassure your child that he/she does not have what killed his/her sibling and empathetically appreciate his/her sadness, the symptoms will fade away within days. 2. Children are less verbal – even the most verbally competent child is likely to experience difficulty putting such intense and overwhelming feelings into words. The younger your children, the more this will be so. You can help your children by offering simple statements that name feelings: “You are feeling so sad about Jamie.” “It does not make any sense why Pete had to die, and it makes you furious.” Such statements leave children free to agree and say more, or deny it, or ignore it. Even if they seem to ignore what you say, you have done something important: you have let them know that you are aware of their pain

206 and are offering a connection. They may not respond this time or the next, or the tenth time you say something. But you are establishing a climate of understanding that will make it more possible for them to talk when they feel ready. Children’s imaginative play offers another avenue through which they can deal with strong feelings. Charlie lost his sister to SIDS- sudden infant death syndrome when he was five and over the next year his Mom watched, as he played alone or with his friend, always revolved around rescues. He was the brave lifeguard who saved the drowning child, Superman who scooped a baby off the ledge of a burning building, Donatello the Ninja Turtle who thwarted a pack of villains and rescued a lost puppy. Once, watching him play, his mother said to him, “You sure are good at rescuing. I bet you wish you could have rescued baby Kate.” Charlie said, “Yeah”, and kept on playing. Rebecca remembers it felt like I was talking to the garage door. But a few weeks after that, he started asking a lot of questions about why couldn’t we save Kate. Rebecca said she and her husband told him about DIDS, in language he could understand. I think what helped the most was Rick and I talked about how helpless we felt, that we could not rescue her. 3. Children express their anger very directly – your children may have a period of more fighting, or quarreling, or simply being mad at everything and everybody. It will help them if you make the distinction that their feelings are important and expectable, but must not be expressed through violence. Corey was five when her sister died of genetic anomalies with twenty-four hours after her birth. Her parents offered her clear explanations and helped her grieve appropriately. Yet when a pregnant friend came to pay a condolence call, she was “greeted” at the front door by a wordless Corey, who took one look at her abdomen and punched it. Corey’s parents talked to her about hurt and angry feelings that were real and important but could not be expressed through violence. It got better. A few weeks later Corey and her Mom saw a friend with a baby who had soft curly red hair (as Corey’s sister had). Corey turned away quickly. Susan asked her how she felt. “I feel jealous”, as the reply. Words had replaced blows. 4. Children needs Respites – from a bereavement group at a Hospice Center, “we can not grieve all the time, we need beaks, we need time to go be with our friends and do our stuff, we wish our parents could understand”. When a child watches cartoons and laughs, when he shoots baskets or goes to a party or sleeps over at a friend’s, it doesn’t mean he is not grieving. It only means children and adolescents cannot, does not sustain the full-time focus on their loss that adults can and do. Just as you have found the situations and the

207 people with whom you can grieve, you can trust that your children will find theirs. They will not necessarily be the same as yours, as their grieving styles will not be the same. When you visit the cemetery and feel your heart fill with sadness, they may be over at the fence, picking flowers or talking to a stray dog. Their times for grieving may be days or weeks apart. They may be able to follow your feelings, or they may need to flee from them. Like you, they will experience blindside reminders, those moments when a place, or a song, or a smell trigger a flood of memories that threaten to swamp them. You may hear about these times, or you may not. 5. Children attune themselves to parents’ needs – more often than we realize, more extensively than we usually appreciate, our children read our moods and our feelings and accommodate them. When you are awash in your own grief, your surviving children may make a judgment about how much of their feelings you can tolerate. You will see then that much and no more. The downside risk about their effort to protect you is that although they may read you accurately, they also may not. On a particularly awful day, you may indeed be unable to tolerate your other children’s sadness and may need to wall it out. But that may be true only that bad day or month. As your tolerance and staying power grow, the children may not revise their assessments. Children have a way of keeping the old, inaccurate pictures of parents in their heads for decades. There is a risk that they may continue for years concealing their grief because they believe you cannot bear it. If you suspect that this is going on with your children, you need to speak up. Without confronting them head-on (children have a horror of that kind of spotlight), you can let your children know that you are more available than they had thought. Something like, “I know the last few weeks I have been pretty unavailable to you. I have been so sad about Timmy it was like I was the only person that existed. I just wanted to let you know that I am in better shape now. I still feel terrible about him, but I also know you have been feeling terrible too, and I want to take care of you. When you are thinking about him, I can hold you, or we can take a walk. I might cry, but your sadness is not going to hurt me”. Expect that your brief, carefully worded speech may be met with silence or grunted acknowledgment. That is okay. It does not mean you were not heard or that what you said did not matter. Children often need to absorb what their parents say and get back to it on their own time.

How you can help your child Children know what they need to do. They just need some help from the adults

208 around them so they can do it. The most important help you can offer your children is making a climate in which they feel safe to grieve. Some of the specific steps you can take to create that climate are: 1. Give your children clear and specific information about what has happened to their brother or sister. Answer their questions honestly and in plain language: When your sister was born, some parts of her brain were not made right and her heart was not put together the way it needed to be to pump blood throughout her body. She lived for two weeks, but then her heart just stopped.” “Donny was driving home from his game, and another car came up beside him, and one of the boys in the car opened the window and shot him. The car swerved into the guard rail and flipped, but the doctors think he died right when the bullet hit him.” For the questions to which you do not know the answer, say that you do not know. Children can live with your honest admission far better than with an evasion or a lie. 2. Reassure them that you will continue to protect them and take care of them. All of us deal with pain better when we know that the people who are important to us will stand by us. You can let them know that it will take a long time for all of you to deal with what has happened: Maybe right now we are all so shocked it is hard to know what to say. But we are going to be living with what happened to Jody for a long time, and there will be times when you will want to talk about her. I just want you to know I am here for you when you want to. 3. Keep your children with you, and include them in family and religious observances: viewings, funerals, burials, wakes, and the like. The question of at what age children should attend funerals comes up frequently. Talking, he/she may or may not be able to explain. You may need to have someone available to take care of your young child or be with him/her if he/she cannot maintain the appropriate behavior. But the presumption that, as a member of the family, he/she will be included is in itself helpful and reassuring to a child. 5. Include your surviving children in discussions about what to do with their brother or sister’s clothes and possessions. They are likely to have strong feelings and wishes about specific items and about what to do with their sibling’s space. As parents you will have the final say. But hearing out their wishes and honoring them when you can will do much to create the climate of respect for their feelings that will help them grieve. 6. Include your children in all rituals and ceremonies, whether religiously prescribed or of your own devising. Your own rituals will probably come on anniversaries: your child’s birthday, the day he/she died. They may be as

209 simple as lighting as candle, visiting your child’s grave, saying a prayer. Structured observances such as these give your other children a sense of order and comfort, reassuring them that the adults are taking care of things. 7. Allow your children to see your grief. A stiff upper lip and an absence of feeling will leave them mystified and helpless. Seeing you cry, hearing you talk about their sibling will help them appreciate what you are going through. You can reminisce about your child in ways that invite his/her brother or sister to join you: “We are going to have macaroni and cheese tonight. Remember how Jimmy used to hate it, and he would always sneak his to the dog?” None of this comes easily, especially in the early months. But remember that your grieving offers them a model they will draw on as they deal with their own feelings. 8. Principles are sound: grief is a natural and not a pathological state, and individuals do carry within them the capacity to heal. After the death of a child, most parents and siblings find a way to do the painful work that they need to do. But for about a third of those who lose a child, the path through the wilderness of their grief becomes too hard. Temporarily or permanently, they lose their way. They experience serious psychological difficulties and pathological distortions of the grieving process.

Telling a child about a loved one’s serious illness should be an on-going process, and it is best not to give too much information at one time. The rate at which it is done and the amount and type of information given will depend largely on the age of the child as well as the rate of progression of the illness. The choice of words used is important – clear, correct, and precise words are best, so that misunderstandings are prevented whenever possible. Trying to explain to children about a serious disease such as Batten Disease when you do not understand what is happening yourself may be one of the reasons why you put off doing it. Finding the right words to use can be difficult. Start initially by referring to things the child already knows about his/her sibling – that he/she has trouble walking, or seeing. Explain to your child/children that you have taken your “sick” child to the doctor and that as time goes on the walking will get worse or that he/she will become totally blind. You may want to explain a little more or this may be enough for this time, but you have brought the subject out into the open and sharing the fact that the disease is not a taboo subject, but one that is safe to discuss. Gradually, give more information about the illness and its effect. If you include something about how the illness may progress, it also helps the child to feel you are in control, but stress how variable Batten Disease can be. Talking about the

210 practical steps you have in mind to help the family manage is also important. Children may become frightened by the changes in their sibling with Batten Disease. They see him/her not being able to play as he/she used to and to be more dependent on Mom and Dad, becoming more unable to do things. Thus he/she can become angry and irritable caused by intense frustration may worry the other children especially if they do not understand the cause. Time spent giving a simple explanation will help children to cope. Children are acutely aware of differences” and may be embarrassed by the way their sibling has changed since the illness has begun. They need to be helped to understand that. Close friends also need to know what is happening and be encouraged to continue coming to the home as much as possible. Telling a child that someone they love has an illness from which they will die is hard. Just thinking about it may cause you great distress, and you will probably feel you want to protect the child from similar feelings or yourself from the child’s distress. What you say needs to reflect the stage of Batten Disease. Children’s understanding of time scales is very different from adult. If it appears likely that their sibling will not die in the near future, and then the child needs to be told that the death is unlikely to happen for some while.

Children’s understanding about death depends not only on their age and own experience but also the family’s religious beliefs. Some parents may have had an opportunity through family bereavement or the death of a pet to explain how natural it is to feel sad when a loved one dies, but also show that happy memories can live on after the sadness gets less.

For some children, the only experience of human death is of the violence reported on television news or on films. They may have come to believe that all deaths are like this and need reassurance that this is not so.

We must be open and honest with children about death. We must give them the freedom to grieve in their own way and time. If children are not given an explanation of what happened or if they do not understand the explanation they will form their own opinions of why others are upset, maybe even for something they think they did. As adults we are surrounded with lots of support from friends, co-workers, and loved ones, but often children are left out thinking they are okay because they do not really know what is going on anyway. One way to know what your child is thinking is to listen to them explain what happened to another child. If there is a long illness before death, it is good to tell the child the progress of the disease, i.e., getting worse; that can prepare them so it does not

211 seem like a sudden tragedy.

Children grieve differently than adults. Instead of intense distress, many children first deny death, and then grieve intermittently for many years. All ages react differently to death: Ages 2-6 – believe death is reversible (you die, then you come back), after all television and cartoon characters do. Some really fearful statements to avoid with these ages are: died in his/her sleep, got sick and dies, and died because he/she was old. Ages 6-9 – look upon death as a taker – something violent that comes and gets you like a burglar or ghost; or something contagious. Ages 9-12 – look upon death as a punishment for bad behavior. They are also more interested in the biological details of what happened. They are caught up in questions of relationships – who are going to take care of grandma now; grandpa will not be able to go fishing with me anymore, etc. Teenagers unlike younger children know death is universal, inevitable, and irreversible; teenagers need someone to talk to – they may be feeling guilt, responsible, and anger. In all ages it is important to let your child know you are there for them to talk to and answer any questions: that crying is normal. Nightmares, hearing voices, and even seeing the dead person are also normal in the death of someone so close. If the adult encourages the child to grieve, let him/her know how much the dead person loved him/her and what joy the child brought to him/her, the youngster will be better able to cope. Also try to keep life relatively stable. Let the child know who will take care of him/her if you die. Some common reactions to grief: exhaustion, dependence, feelings of unreality, panic, preoccupation with the dead person, hyperactivity, destructive behavior, and regression. For many the grieving process can be a delayed reaction after the numbness wears off. After the death, you need to prepare the child for the events of the following days, i.e., visits from friends with food and flowers, the wake and what the person will look aspects of ourselves make up the whole person.

Approaches to Support Grieving Children 1. Always Be honest – untruths hurt now and later. They disallow children to have the support for their feelings, questions, concerns and fears. Protecting children from reality ill prepares them for life. Children need loving, compassionate, trusted others to face the painful experience of life. Children know when we story to them. They are abandoned and isolated when we do not tell the truth, often leaving them to feel shame and guilt for their conceived culpability for the illness or death. Children handle reality better than fantasy. When the truth

212 is distorted, even out of love, a child learns not to trust others and ultimately, tragically, his/her own perceptions. He/she then relies on his/her immature imaginations, other children, or possibly inappropriate others. Children in their natural honesty, inquisitiveness, and caring may appear blunt and uncaring. They are not!!!! Children ask questions when they are ready, not necessarily when you are. 2. About Feelings – Live your feelings. We are models for children to learn that it is OK (even though painful) to cry, be sad, angry, confused, hurt, afraid, and to survive those feelings. Feelings are not: right/wrong, good/bad, positive/ negative, they are responses to a person, event or experience. Judging feelings makes a child go into hiding, again feeling shame, guilt, and fear. DO NOT ENCOURAGE STOICISM. NEVER TELL A CHILD NOT TO CRY OR BE SAD. This will create serious problems for children dealing with loss and grief, perhaps, for the rest of his/her life. It isolates them in their grief. Feelings are real and present whether we bury, hide, distort, deny, or shame ourself “out” of them. They will surface at another (usually when we feel safe) time. Sadly, this may be many years after many accumulated, buried, and ungrieved losses 3. About Your Beliefs – making up beliefs, suddenly grasping at beliefs and clichés to “help your child” or yourself is confusing and cuts off communication to a child. It is OK for a child to know you are trying to grasp and understand the magnitude of the questions of life, death, and afterlife. It is OK to tell the child, “I do not know”. You will not lose respect. Ask others for help. Discourage glamorizing death. Clichés such as, “God took Billy because he was so good”, can turn a child into devilish behavior to prevent being kidnapped by a supposedly loving creature in the sky. Include the child in the care, communication, grief, questioning, decision-making (as appropriate), and rituals of the family. Children want and need to be involved in family experiences. Excluding children makes them feel not wanted, worthless, shamed, and/or guilty. Encourage questions, remembrances, and feelings. Making the grieved-for loved one perfect, disallows the child to share the good and bad times with his/her loved one’s entire perfect humanness. Encourage the child to be him/her self and not replace his/her grieved-for loved one. Encourage children (you can do it with them) to draw, write, or audio tape their memories, perceptions, grief, and feelings. It is often easier for children to “act out” their grief rather than talk it out. Grieving children are not always quiet and reserved. It is OK for them to play and not feel the pain at times. Make a small album of pictures of the child and grieved for loved one for the child to have as his/her own. A legacy all adults, whether diagnosed with a life-threatening illness or not, can give children are audio/tapes

213 sharing their memories, life experiences, and love for the children in their lives. You can make fingerprints of the grieved-for loved one and clip locks of hair as physical imprints of his/her life that are forever in the child’s and your encouraged, nor forced, to see their grieved-for loved one after his/her death. This can dispel fears, answer questions and allow the child to grieve the reality of his/her loss. Let the children touch his/her body if they wish, even if adults do not. This viewing should be a private time with only those close to him/her for support. At some point the casket should be opened completely to dispel fears, even of adolescents, about the wholeness of his/her body. They can place drawings, letters or gifts, in the casket. This time is more important than attending the funeral. Choose caring adults who can care for and take out the young children who get restless during the visitation and/or funeral. I have never had a child or adult in therapy, who was lovingly prepared to see their loved one after death, regret that viewing. I have had hundreds very angry that they were protected and not allowed that final goodbye and face the reality of their sacred painful loss. In reality, illness, pain, suffering, and death are incomprehensible mysteries to us all. Be gentle with yourself and your grieving children. I bid you peace in your individual sacred journeys.

Children are often the forgotten mourners. As caring parents and Professionals, we tend to shield them from situations that may be painful. Unfortunately, in our society, children are constantly confronted with the reality of death. Children are capable of understanding death.

Guiding children through death and grief: 1. If possible, discuss the death before a crisis occurs. 2. Listen and give your individual attention – get on the child’s level (sit on the floor, speak in words they will understand). 3. Do not use clichés – do not use references like “going to sleep”, “going on a trip” or saying that God needed the loved one. 4. Allow the child to be involved in the funeral experience. Prepare the child for what he or she can express. 5. Allow the child feelings, including anger, frustration and hostility. 6. Recognize that children feel guilty and often think they are at fault for the death. 7. Create a ritual to help with the grief, such as a memory book, planting a tree, or making an ornament in honor of the deceased. The most important thing you can do to help is to be there for the child, to

214 support, comfort, and listen.

Three myths that have a strong hold on our society prevent children from getting the support and understanding they need when they are suffering from a loss. 1. Death is not a part of life. 2. Children do not mourn. 3. We can protect our children from grief.

If we deny loss, conceal it from our kids or do not value what they tell us about their grief they may possibly suffer emotional problems, and even as adults they may have trouble making close relationships or be stuck in a chronic depression. When kids can mourn a loss successfully they develop the skills and confidence that they will need to handle future losses.

Aid in understanding 1. Adults first responsibility to grieving kids is helping them understand what has happened. Kids need to make sense of death or other major stress as much as they need food or warm clothes. Understanding means knowing what happened to the person who died and why. In the case of a non-death loss, understanding means knowing what situation caused the loss and why it happened. To understand the death of an important person in their lives, kids need to know what “being dead” means. Parents should not use euphemisms, instead they need to use a simple direct explanation such as “Billy’s body was so sick his body stopped working, and it cannot be fixed. A dead person’s body cannot move, think, talk, breathe, or go the bathroom, and it cannot feel anything. 2. Tell children the truth about all deaths, including stigmatized deaths such as suicides. The kids will eventually learn the truth in any case, and if they have been misled, will not be able to trust important people in their lives after that. 3. The most helpful thing an adult can do for a child faced with a loss is to be a role model of healthy grieving so the child sees it is all right to feel angry and sad. The adult should also reassure the child by saying, “I am very sad, but I can still take care of you”. 4. Parents are encouraged to talk with children about the physical causes of death – we can explain our family’s beliefs about what happens to the person’s spirit – we feel that Billy’s spirit – the part of him that made him love and laugh is now in heaven with God forever. This kind of a response is clear, loving and truthful.

As for adolescents, even though they have an adult understanding of they feel

215 invincible and immortal. The death of a friend shatters that fantasy if only for a short while. When adolescents experience a loss they want to have their parents nearby, but they only want to talk about their grief with their friends.

After one of their parents has died, children of all ages want to know what will happen to them if the other parent dies. Do not tell the child “You do not need to worry about that”. Instead, the surviving parent should make a careful plan and tell the child something like; “I am very healthy and take good care of myself, so I probably will not die for a long, long time. But if anything happens to me, Aunt Betty and Uncle Harry will take care of you”.

The child bereavement Trust from the website www.childbereavement.org.uk

“Tasks of Mourning” for children 1. To accept the reality of the loss. 2. To experience the pain or emotional aspects of the loss. 3. To adjust to an environment in which the deceased is missing. 4. To relocate the dead person within one’s life and find ways to remember the person. 5. Children and loss, death is a fact of the world in which children live, and grief is a normal and deeply felt human emotion. However, death remains a subject about which children receive very little information and if directly affected by it, they are often offered little help or reassurance with their painful and confused thoughts and feelings. 6. Children often fail to receive help because adults think they do not understand death. The child’s silence, lack of questions or apparent indifference may be interpreted as a lack of awareness or a state of coping that should not be disturbed. 7. Children who experience the death of someone close to them need support from the adults around them The way in which we help children to deal with loss will have a profound impact both on their future development and their ability to cope with all sorts of crisis. 8. The bereaved child arouses strong feelings in all of us. We are reminded of ourselves as children, of our own children, or the children we hope for. 9. Working with children experiencing loss involves adults in considerable pain. Part of our anguish results from our knowledge that we cannot make it better. We cannot prevent children from experiencing sadness, but our help can mean that children are supported, rather than alone, as they experience that sadness. It is important for

216 us all to remember that children do survive the trauma of loss and discover that life will continue and can be fun. 10. Children have an amazing capacity to deal with the truth: offered it with love they can grow and respond creatively to the challenge of bereavement.

Children’s Understanding 1. Adult’s, both parents and professionals, want to protect children, but in doing so often exclude and isolate them. To protect children from the truth is to leave them confused from their fantasies and unsupported with their feelings. 2. We are often inhibited by anxieties about doing or saying the wrong thing, about making things worse or causing lasting emotional damage. Such fears may mean children do not get the help they need. 3. It is impossible for parents not to communicate with children. Children quickly sense when something is happening – they read body language, overhear conversations, notice changes in routine and observe physical changes. The issue is not whether to talk to children or not, but who will do the talking, when and how. 4. Children acquire components of the death concept gradually, moving from concrete to abstract. Most children are said to reach a full understanding of death at the age of around nine to eleven years, realizing it to be permanent, inevitable and universal. However, it has been shown that much younger children already know more about death and are more capable of processing additional information than most adults find it comfortable to accept. 5. We should always remember that children’s capacity to understand events may well be much greater than their ability to articulate that understanding. 6. The only certain way to find out what children understand about the circumstances in which they find themselves is to ask them.

Children’s Needs 1. Children’s needs as they face loss through death are much the same as those of adults, but they may express them differently as they lack the adult vocabulary of grief. Children need information, reassurance, an opportunity to express their feelings and adults who share their feelings. They need clear, simple, truthful and repeated explanations. They need to know what has happened and why, and what will happen next. It often helps to link explanations to things children have noticed already. 2. We must always respect and enquire about family culture and belief systems, but in general, simple, factual explanations of death are helpful to children.

217 3. Do not feel you need to have an answer to every question? Children will accept “I do not know” or “I am not sure about that”. 4. Children understand that the normal patterns of their family life will be disrupted by the serious illness or death of someone close to them. Practical anxieties may well be at the forefront of their mind, and they need the security of knowing what will not change. 5. Children often have particularly strong “magical thinking” and need to be told expressly that nothing they did or said made the person get ill or die. Children also often worry about whether they themselves or a surviving parent or family member will also become ill and die. They are living in a world, which has suddenly become unreliable and unsafe. They need explicit reassurance about this. 6. Children learn how to grieve by observing others. They will respond to the rules demonstrated in the environment and their family about what behavior is acceptable. 7. Ideally, children need to be involved in the rituals of death and dying to the extent that they and their parents feel comfortable. They should be given information in advance about what to expect and should be involved in the choice. Children need to be listened to and their decisions need to be respected.

Understanding Bereaved Children and Young People The way in which children are communicated with and involved at the time of the death of a parent or a sibling will affect how they are able to grieve at the time and how they manage loss in the future. When talking to bereaved children it is important to remember that each child is an individual and may well react differently. What they need is information and the chance to ask questions to be answered honestly and to be given the opportunity to express how they feel.

Children’s response to bereavement – how children respond to the death of an important person in their life depends on a number of factors. 1. Their age and consequent understanding of death. 2. The nature of their relationship with the person who has died. 3. The circumstances of the death. 4. The reaction of other family members to the death. 5. The overall effect on the family unit. 6. Their culture and family’s spiritual beliefs. 7. Their self-esteem and self worth.

Communicating with children – the decision is not whether to talk to children or not, but who will do the talking, when and how, as it is impossible for parents not to communicate

218 with children. They read body language, overhear conversations, and notice how adults behave. Momentous situations in a family cause changes to happen and children quickly sense when something serious is happening.

Ideally parents are the best people to talk about sad news with their children, but if they are unable to do this then a close relative or friend known to the child would be most helpful, although sometimes this difficult task falls to the health professional caring for the person who is dying or has died. It needs to be sensitively explained as soon as possible so that the children do not find out inadvertently from someone else or are left for hours anxiously wondering what has happened. It is important to try and find out what the children already know or have been told. Ideally a place that is free from disturbance needs to be found with sufficient time set aside to explain what has happened, to answer questions and to offer comfort and reassurance.

When talking to children it is important to remember that touch is a valuable way of communicating and to recognize the comfort that physical closeness can bring. Try to find the right moment with children when they feel more able to listen or to concentrate on what you are saying. Pick up on their cues or wait until they ask a leading question. What is said will depend on the age of the child, but particularly with younger children what has happened needs to be made very clear so there is no chance for misunderstanding. Euphemisms such as “gone to sleep” or “Daddy has passed away” are not helpful.

The rate at which information is given should be varied according to the children’s level of understanding and open ended questions can be used to encourage them to respond and ask questions. Picking up on particular things the child has said and asking them more about what it means to them, helps to ensure the child has understood what has been said. The information given must be truthful and consistent. Children do not need long detailed information, but easy to understand explanations. Children and young people like adults will experience shock and disbelief and may not take in everything at once. They will listen to as little or as much as they can bear at any one time. They are likely to need repeated explanations with spaces to enable them to understand the information. They may want to spend some time on their own. Young people need to be told what is likely to happen next and who is going to be there to help them. If the death has occurred in the hospital setting, clear information needs to be given about the opportunity or returning at a later date to ask questions from the nurses and doctors they have met.

Children’s reactions can vary from deep despair to denial or active protest. Whatever their reactions, it is important that they are allowed to express their feelings without

219 being stopped or urged to “be brave”. When deciding whether children should see the person who has died, parents may be concerned that frightened memories of the dead person will be powerful and children will be more upset – this is unlikely to be the case, especially if the children have been prepared for what to expect. Experience shows that children focus on the positive aspect of a person who has died and work to build up an image of them they can carry with them into the future.

Factual explanations of death are helpful. “When people die it means their body does not work any more and although they will look like they are asleep, they are not asleep, they are dead, because when you are just asleep your body works very well”. It is useful to explain that when people are dead they may feel cold to touch and there may be other noticeable differences. “I was glad I was with my brother/sister when he/she died. I was scared, but I wanted to be there to say goodbye”.

Reactions to the death – children’s capacity to sustain sad emotions increases with age and maturity. Apparent lack of sadness may lead adults to believe they are unaffected by the loss. Normal signs of grief in children, particularly young children, include bed wetting, loss of appetite, tummy upsets, restlessness, disturbed sleep, nightmares, crying, attention-seeking behavior, difficulty concentrating, increased anxiety, and clinginess. These only become a cause for concern when they occur over a prolonged period of time.

Older children often display changes in personality and alterations in psychosocial functioning including depressive mood, sleep and appetite disturbances, angelic behavior, rudeness, learning problems, lack of concentration, and refusal to go to school. School work may be affected by underachieving or overworking. Boys, particularly teenagers, are likely to experience academic difficulties in the early months following parental death, but bereaved children do not necessarily develop long-term learning problems.

In adolescents, bereavement can cause a regression to a younger more dependent stage in their development. Emotions may be suppressed, resulting in a display of apparent indifferences or lack of feelings. In a search for love and affection, they may develop premature new sexual relationships. Some teenagers start truanting upheaval in their life. This is more likely in adolescents who have lost their mothers, particularly girls. Others become silent, withdrawn and self critical. Many young people will grieve privately and shed their tears in solitude of their own rooms, maintaining a brave face in society. In an attempt to numb the pain, some youngsters develop self destructive behavior such as excessive drinking or drug taking. Reactions to the fear of death may cause, turning to

220 petty delinquency or begin shoplifting as a general protest against law enforcement and some teenagers take unnecessary chances with their lives. By confronting death they try to overcome their fears and demonstrate their control over their own mortality. Some children will assume the role of a parent taking on heavy responsibility causing them to mature rapidly and denying himself/herself the opportunity or permission to grieve. Others will take this experience in their stride.

Often after a major bereavement children suffer some form of depression and a loss of confidence and it is important to help build up their resilience. Life has dealt them a terrible blow and they may feel incapable of carrying on. They need help to examine their own skills and acknowledge the things they are good at, to focus on the positive things that they can do, however small, to improve the situation. Although they may have lost an important person in their life, they can usually find other support mechanisms, such as a favorite relative, a close friend, a special teacher and draw strength from them. This will all help to bolster their self esteem and self efficacy and enable them to face life again. A suicide in the family is a particularly difficult type of bereavement – all the normal grief reactions are likely to be intensified. Because suicide carries a stigma, it makes it especially difficult to talk about. It is common for children whose parent has died by suicide to feel responsible in some way for what has happened or to think that they could have prevented it. Living with this burden of guilt may cause them to become depressed, passive, and self destructive. Children suffering bereavement through violent death (murder, suicide, etc.) are more likely to need specialist professional help, both at the time of the death and also in the years to come, as they mature and reflect on the death and why it happened.

The importance of Memories –memories are vital to the grieving process. Talking about the dead person, revisiting places they used to go together, looking at photographs, handling clothes they used to wear and evoking familiar smells all help to keep the inner image of the person alive. Young children find it difficult to call up memories without contextual cues and protective adults may fail to provide these in an effort not to remind children of their loss, but this can inhibit their mourning. They need something that belonged to the dead person as a memento of their relationship to keep the dead person present in their lives, and opportunities to recall them on special days and anniversaries and add to their memories. As children mature it is normal for them to experience new feelings about the person who has died and miss them in different ways at different times in their life.

Attending the Funeral – everyone comes from a culture, not only a national culture and a

221 religious culture, but a family culture as well. The bereaved family may be agnostic or atheist, Catholic or Church of England, Muslim or Jewish, Hindu, or Sikh. Each group will have its own traditions that need to be honored. The best advice is to assume nothing and when in doubt, ask and people outside of the family should refrain from forcing their personal beliefs, which may contradict those of the parents. It is important to recognize also that adolescence is a time of questioning and challenging, and young people may not share the same beliefs as their parents.

Although some parents and grandparents may feel that children need to be protected from being present at the funeral, children usually find it helpful to be included in the family’s rituals of mourning. The funeral is an opportunity for them to witness friends and family shows their respect for the dead parent or sibling and for the family together to start to learn to live without the dead person. To be excluded from these events can widen the gap between the grieving parents and the child. However, a child who is frightened about attending a funeral should not be pressured or forced to do so. Some other way needs to be found for the child to say goodbye to the dead person – such as putting a letter or flowers in the coffin, lighting a candle, choosing a poem or visiting the grave.

If children wish to attend the funeral, thought needs to be given to preparing them for what will happen and the service needs to be child-friendly. They need to be told that people will be sad and cry, and be given the opportunity to ask questions. They may like to take an active part in the service by choosing a favorite song or reading. It is often a good idea to arrange for a caring adult of their choice to be responsible for looking after them during the service so that the parents do not have this responsibility.

How to Help Children Manage a Bereavement Children Need: 1. Age appropriate factual information. 2. Clear, honest explanations, which may need to be repeated. 3. Adults who are able to show their feelings. 4. A chance to ask questions more than once. 5. Help to express their feelings – through talking, playing, drawing. 6. Advice on how to cope with other children’s questions and adult’s expressions of sadness. 7. A break from the company of grief stricken relatives. 8. General support. 9. Help with other losses. 10. A familiar routine, to establish a feeling of normality.

222 11. Regular reassurance a. that the death was not their fault. b. that they are loved and wanted. c. that life will go on and not always be sad. d. that feeling angry and upset are a part of grieving. e. that their surviving family members are healthy and are not likely to die until they are much older.

It helps: 1. Not to make assumptions. 2. To remember children almost always understand more than we think. 3. To realize children read emotions around them, respond to body language and overhear snippets of conversation. 4. To understand children experience loss and death in many ways. 5. To include them. 6. To allow them to contribute To encourage them to say “good-bye” by allowing them to view the body, attend the funeral, visit the grave etc., providing they want to do so and have been prepared for the experience. 7. To talk about the dead person. 8. To create and reinforce memories over the years on anniversaries and special says. 9. To let them know you will not suddenly disappear – explain carefully if you are going away. 10. To understand that bad behavior is a symptom of confused emotions. 11. To accept them as they are. 12. To encourage them to build up their own resilience and self worth by telling children what you value in them. 13. To give them something special of their own to love and take care of, such as a pet. 14. To give permission for them to have fun.

What can Inhibit Children’s Grief: 1. A parent’s or prime carer’s inability to grieve. 2. A parent’s inability to tolerate painful memories. 3. A parent’s overwhelming grief. 4. Lack of a consistent caring adult, unstable family life. 5. Fears about parents’ vulnerability and a desire to protect them. 6. Concern about their security – (death of a single parent). 7. Ambivalent feelings towards the dead – perhaps a parent who abused them or was

223 very strict, or a sibling who had received a lot of attention before death and of whom they were jealous. 8. Lack of opportunities to share feeling – no sympathetic adult, teacher or friend. 9. Inappropriate roles assigned – “you are the man in the house now”; having to assume all the parents’ expectations for their dead child. 10. Other losses – loss of money, have to sell home, move school, leave friends, etc.

Needs of Young People The adolescent years are a particularly difficult time to lose a parent or a sibling. It is a time of great change, both physically and emotionally. The teenager is struggling to achieve balance between a desire to be independent and free thinking with feelings of low self esteem and lack of confidence. Although they may look and seem like adults, physical development does not equate to emotional maturity and coping with a death on top of the normal psychological, physiological and academic pressures they face can prove very difficult.

The death of a parent may destroy their sense of security and alter family life, taking away the one thing they could rely on in a changing world. Fears for the future become very real and suddenly they have to start worrying about things most people of their age never have to consider. They may well resent the upheaval in their life and these selfish thoughts will lead to guilt, which will be difficult to acknowledge. If they had been going through a bad patch in their relationship with the dead person or sibling this can also cause feelings of enormous guilt, or perhaps they may feel the wrong parent or person has died. Although very difficult to talk about, it is important that teenagers understand that these feelings are normal, and that they are normal. Communicating effectively with teenagers can be hard for adults at the best of times and often because teenagers appear prickly and unresponsive, adults may back off leaving them to grieve alone with very limited support.

Young people may also be reluctant to talk freely to their friends, realizing that death is a taboo subject and is likely to embarrass their peer group. Their friends may be extremely supportive or just not know how to respond to the situation or how to comfort and support them. But it is important that they find someone, perhaps a family friend, teacher, sports leader, doctor, or minister that they like and trust, to unburden themselves to. Having information about a counseling service to call, and contact with and talking to other bereaved young people, may also help a teenager feel less isolated.

224 They may prefer to express their emotions through writing a journal, composing a poem, drawing a picture, or acting out a scene in a play, rather than talking directly about how they feel.

Adolescents Need to Know That It Is OK to: 1. Cry and feel depressed. They have lost a great deal. If their feelings get too overwhelming they should find a caring adult or a friend to talk it over with. 2. Copy some of the activities and interests of their dead brother, sister or parent, but they need to retain their own life too. 3. “Live in the past” for a while. It can help to keep alive the memory of a parent, brother or sister, but they should not let life pass them by 4. Have fun and enjoy life, to laugh again. 5. Forgive themselves for the fights and arguments and nasty things they said to their dead parent or sibling. 6. Go on living.

But it is NOT OK to: 1. Use drugs or alcohol to dull their senses. This can only hide the pain, not heal it and it will take longer to accept the hurt. 2. Act out their frustration with reckless driving or skipping school. 3. Do things out of anger to hurt other people because they are hurting themselves. 4. Experiment with sex just to get close to someone. 5. Hide their feelings and not talk about what is bothering them to protect their parents. 6. Act as the scapegoat or “badguy” to appear tough.

Signs that a Young Person May Need Extra Help Include: 1. Prolonged deterioration in relationships with family and friends. 2. Risk taking behavior such as drug and alcohol abuse, fighting and sexual experimentation. 3. Lack of interest in school and poor academic performance. 4. Signs of chronic depression, sleeping difficulties, and low self esteem. 5. Dropping the things that once meant so much to them.

As they get older, children and teenagers may need to look again at the details surrounding the death the death of someone important in their lives. This is not necessarily unresolved grief, but the experience of different feelings at a later stage

225 in life.

If we listen to children, they will tell us what they need. There is clear evidence that children can survive the pain of loss providing they are loved and cared for.

Talking to Well Children Avoiding explanations would be okay if no one was adversely affected. The trouble is that burying such information only leads to more difficulties that can damage well siblings and their lifelong relationships. If children know that talking about the condition is taboo, then irrational, guilt-ridden, and unsettling thoughts grow unchecked. These ideas can manifest themselves in serious fears and resentments or an inability to form intimate relationships down the line. When parents do explain what happened, brothers and sisters may feel bad, but at least they have some grasp of what is going on. Siblings in the know grow to understand the family dynamics more completely and ultimately admire their parents’ fortitude and abilities.

No Way to Feel Right Once you have decided the how’s and whys of your special child’s condition, it is critical for well siblings to know that their feelings – the guilt, the embarrassment, the resentment – are all real and acceptable. Remember, the situation can be emotionally intense. Chances are everyone has mixed feelings. There is no one right way to feel. Often kids complain about a sibling’s behavior. “It is frustrating when Jill acts that way in public. And even though you understand why, it can still be embarrassing. The problem is, this is where she is at now. We need some fresh ideas for how to help her”. By engaging the creativity of the well siblings, everyone in the family is strengthened.

Periodic family meetings are good settings for discussing feelings. You can do this with or without professional intervention. The sessions give everyone a chance to air his/her thoughts. Parents will hear what their children have to say about a brother or sister with special needs. When there is stress, feelings can be overlooked and become dangerously overheated. Minor irritations can quickly escalate into major problems. It is best to try to set things straight out on a regular basis. Family meetings can also help dispel the rage siblings often feel toward their affected brother or sister because of what they perceive as a unique tie between you and your affected child. Sometimes the “well child” will wish he/she had a problem to get more attention from his/her parents. Parents automatically take extra time with their affected child – between visits to the doctors and other professionals, it cannot be

226 helped. But the other children can perceive this as favoritism. Commonly, the well- siblings vies for parental attention by either pretending to be sick or actually hurting himself/herself so that he/she can see the doctor with Mom and Dad too. He/she wants reassurance that he/she is loved as much as his/her brother or sister. This is frustrating for parents, especially when they are wound up over their unhealthy child. One of the most reassuring ways to let the nonaffected children feel valued is to spend time alone with them.

Easing Bad Feelings There are ways to help ease bad feelings, too. You can physically express attention for the well siblings with extra hugs or kisses and remind them of how great you think they are. Reiterate that the reason you spend more time with your affected child is not because you love him/her more but because he/she has different needs. You can also say you can understand why that makes other children in the family feel ignored or angry. Ask him/her to be sure to tell you if he/she is ever feeling ignored so that you can let him/her know how very special he/she is to you.

Anger Certain kids can and do discuss their anger, while others cannot and do not. When kids cannot express their rage; it gets communicated in some other way. The well sibling can become aggressive, mercilessly teasing his/her affected sibling about his/her deficits. With this comes enormous guilt, leading to other problems. Sometime they will pick fights at school, become sexually permissive, or talk about and even try to hurt themselves. Many children become angry with their parents because they feel neglected. Often well siblings do not fully come to terms with their anger until adolescence or early adulthood.

Embarrassment The affected sibling can embarrass kids. It is a normal part of growing up. Everyone gets embarrassed once in a while. So do not blow it out of proportion. If your healthy child feels the need to distance himself/herself from his/her sibling, it is probably a good idea to let him/her do it. Forcing kids to stay together can have negative effects later. If kids are allowed space when they need it, they will often reintegrate with their family later on. One way to help a child deal with his/her feelings is to acknowledge them. Socially, it is extremely difficult for well siblings, especially teenagers, to cope with a brother or sister who is different. We all know that preteens and teens are extremely narcissistic. It is a time when appearances mean everything, when fitting in is of supreme importance. So when there is a

227 brother or sister who stands out, it feels beyond horrific to the teen. Often kids can understand if their sibling cannot read or write well, but they have a lot of trouble with a sibling who acts out, says the wrong thing, or is generally socially inept. They are also embarrassed if their peers do not consider their sibling acceptable. It is as if the sibling’s “uncoolness” rubs off on the well sibling. Experts suggest helping the child understand how he/she socially misfired and teaching him/her better options. You are teaching your child with special needs to see there is a better way to deal socially. It is crucial that parents explain to well siblings that the child’s behavior is as much out of control as his/her academic skills may be. Doing this often makes the unaffected child more sensitive to his/her brother or sister’s circumstances.

Guilt Guilt comes in various forms. Siblings may feel that they did something to cause the disability. They may feel as you undoubtedly do, that the affected child does not deserve the problems he/she is having. They can feel guilty for being angry with their sibling for something he/she did, or for affecting their lives in ways they do not like, or for teasing their sibling. Older and younger siblings may feel guilty when they surpass a disabled older sibling academically or athletically. Sometimes, the younger sib squelches his/her own achievements. He/she does not want to outshine his/her struggling brother or sister. He/she must learn to separate from his/her sibling and his/her problems. Parents must reassure well siblings that their success has nothing to do with their affected brother or sister. Naturally, communicating information about the special child’s issues alleviates some guilt. Secrets create confusion and bad feelings. If you know how your disabled child became ill, explain that to the sibling who is feeling responsible. To help your child deal with guilt, try to explain to him/her that you understand that he/she may feel guilty. Here you are, able to do it all, and your brother/sister, has Batten Disease and can barely hold his/her head up. Nobody wanted this. He/she did not want this. I did not want this. You did not want this. If we could wave a magic wand and get rid of it we would. But we need to remember what your brother/sister can do and appreciate all the things he/she is able to do and have faith he/she will continue to do the best he/she can.

Acting Out Stopping hurtful behavior is essential. Parents must not allow a child to physically or verbally treat his/her affected sibling unjustly. Even though brothers and sisters should work out their disagreements without parental interference, if the well sibling attacks the special child’s deficit, either verbally or physically, the parent must stop him/her. Parents can become compassionate listeners who validate their children’s

228 feelings to support them. It is okay to be angry at the problem, but not at your brother or sister for having one.

Sibling Rivalry We cannot wish sibling rivalry away. But the degree to which it is expressed is something we often can control. Parents will improve familial relations by not comparing children to each other. Treating the special child as the youngest person in the family even though he/she is the oldest is another mistake. If you always treat a person with special needs as the youngest in the family, it robs him of some dignity and keeps the youngest child from his/her role, too. Parents should avoid dumping too much responsibility for the compromised sister or brother on the well sibling. Although siblings can help care for a special child in a family, it is enormously unfair to burden a child with the physical and emotional responsibilities of your child with special needs. Children can help, but parents need to be responsible for their offspring. Sometimes, even all that is not enough to make the well-sibling feel better. There are situations where well siblings have to remove themselves temporarily from the family to regain their perspective and sense of themselves.

Twins and Other Multiple Births Experts agree that though they experience the same emotions as individual brothers and sisters, their feelings are more intense. While they can each be the other’s best support, twins can also feel enormous jealousy of and rage toward one another. One child may be jealous of his/her brother/sister’s freedom relative to his/her own confinement, while the other is jealous of the time and attention given his/her differently abled sister. What’s more, a well twin can have survivor’s guilt, wondering why this happened to his/her brother or sister and blaming himself/herself for the problem. Twins can also fantasize about having the ideal friendship with their co-twin and the loss of that romantic dream makes them feel more isolated and alone. It is crucial to remind your well twin that he/she will not have the “perfect” twin relationship. As parents of differently abled twins, you are in the unusual position of de-emphasizing their twin ship. This is not to say that you devalue the relationship – instead you emphasize their individuality as a means of freeing both from the burden of comparison.

Well Siblings A sibling can influence a person’s feelings about himself/herself, his/her perception of others, and even how much he accomplishes in his/her life. Pretty powerful. Well siblings have a myriad of mixed emotions about their affected brothers and sisters.

229 Studies show that in addition to feeling protective and loving toward them, the affected child can feel angry at, guilty about, or even embarrassed by his/her special brother or sister. If the healthy sibling feelings are overlooked or ignored, serious problems can erupt in their lives. Young children may even believe their mother intentionally made their sibling sick. Parents who ignore a child’s comments or questions and refuse to give them sincere answers only beget confusion and anger. There can be more nightmares and fears. They can eventually poison the parent-child relationship and destroy the child’s sense of trust. Kids – especially school-age children - also fear that they will catch their sibling’s condition. Older kids may worry that their offspring will inherit what their sibling has. They need enormous reassurance that they will not get their sibling’s illness. First, explain your special child’s problem. Even if it is genetic, most childhood genetic conditions are uncommon. Offer hope that by the time the older kids become parents, doctors will probably have a way to treat the condition.

Support Groups Support groups have been shown to help well sibs too. It is good to be in a positive atmosphere with people who have similar situations.

A Gift of Understanding Parents who worry about the success and well being of their unaffected children should know that studies show that brothers and sisters claim to have been enriched by the experience of having a sibling with special needs. Although none would have chosen the circumstance, the positive experiences it helped bring about have shaped their lives. First, most siblings feel they are more mature than their peers. Siblings of individuals with challenges are usually well adjusted and responsible beyond their age. Experts believe their maturity comes from sacrificing and dealing with issues other children do not confront. Well siblings often have a deeper understanding of life and will see past a disability, appreciating others as human beings. They become more compassionate and able to always look beyond the outer appearances. They are usually more accepting of differences than other children and people. They are tolerant of people acting differently. Brothers and sisters of children with special needs appreciate good health more than other people. They also appreciate their parent’s child-rearing efforts because they realize how hard everyone worked to achieve family goals. Many siblings of children with special needs go into service type professions and/or volunteer their time to help others.

Siblings usually have goals and direction in their lives. They focus on their brother or

230 sister’s abilities instead of inabilities. Unaffected brothers and sisters protect their affected sibling by challenging misconceptions about the disabled. All in all, well siblings, like parents, believed that even though they struggled with the ups and downs of having a special family member, the experience positively influenced their lives.

Thoughts to Remember 1. Explain facts about your child’s disability and what caused it to well siblings. It is okay to say, “I do not know how this happened.” 2. Reassure children that they will not catch their sibling’s issue, and that in the future doctors will probably know how to deal with the condition. 3. Keep communication open. Have periodic family meetings to get a handle on everyone’s feelings. 4. Give mega doses of love. 5. Acknowledge and accept the well-siblings’ feelings, even the negative ones. Let family members know that you are all in it together. 6. Allow the child to distance himself/herself from his affected sibling. 7. Stop harmful behavior between siblings. 8. Spend special time with your well sibling away from the child with the issue. Explain that more doctors do not mean more love and that he/she needs to tell you if he/she feels neglected. 9. Find a sibling support group through your local school, place of worship, or medical facility. 10. Keep competitiveness to a minimum by avoiding comparisons between siblings. 11. Allow the youngest to remain the youngest in the family. Encourage trading off responsibilities between siblings. 12. For twins and multiples, emphasize their individuality and help them to see that each has strengths and weaknesses. 13. Teach well siblings to review poor social behavior with the affected child to help him/her see there are other social options. Tell your unaffected children that the affected sibling is still unable to control his/her social behavior. -

231

Chapter 10

Friends

Family and Friends – how can they help? Should parents accept help? What advice can

232 parents give so that friends and relatives can help constructively? There are so many ways to help. There is a role for everyone, and though all are not suited by temperament to give the child direct care; there are still many services the family needs. If you have a neighbor or friend who offers help, and you feel comfortable with that person, accept thankfully. Give choices. Perhaps you have a small list of needs, such as help with siblings while you must care for the sick child or be at the hospital, grocery shopping, errands, help with the house or meals, picking up prescriptions. If it is someone the child is comfortable with, you can accept help with the child’s care and perhaps take a break yourself. Friends and relatives can help best by tactfully accepting the situation. All of the parents receive unnecessary though well-meaning advice. Sometimes people do have valid suggestions, but they must offer them tactfully, because the parent of a very sick child is emotionally vulnerable. Friends and family can also help by refraining from adding burdens; this is not the time to recite woes and complaints. The parents are preoccupied with their own concerns. Help from family and friends once the child has died. Often, individuals who have not experienced a death do not feel comfortable contacting you, because they are afraid they will not know what to say or do. Many will tell you to let them know if there is anything they can do. They truly do want to help. You can make them more comfortable by reaching out to them and telling them what you need. There are many things they can do that may be very helpful to you.

In the weeks and first few months following the death of your child, you may find that you have no interest in life and are drained of energy. You may find it difficult to cook meals, clean the house, and care for your other children. Husbands and wives may find they need time to spend together, away from the other children. You may feel very lonely at times and need someone to listen to you while you talk about the death of your child. Friends and relatives can help fill many of these needs. During the few weeks after the death, when friends and family ask what they can do to help, suggest they bring your family a casserole. Casseroles can usually be frozen, and you can keep them for the days when you are not up to cooking. Friend and family may also help with household chores, vacuuming or laundry, or watching the other children so that you have some time alone or together with just your spouse. Perhaps you just need some company, Don’t be afraid to call on someone to come to your home. You may find it difficult to reach out and you may have to force yourself to do so. Although no one can ease your pain, friends and family can certainly help lighten your burden.

A Letter To A Friend Please dear friend Don’t say to me the old clichés

233 Time heals all wounds God only gives you as much as you can bear Life is for the living… Just say the thoughts of your heart I’m sorry, I love you, I’m here, and I care Hug me and squeeze my hand I need your warmth and strength.

Please don’t drop your eyes when I am near I feel so rejected so by God and man Just look in my eyes and let me know that you are with me.

Don’t think you must always be strong for me. It’s okay to cry It tells me how much you care Let me cry, too It’s so lonely to always cry alone.

Please keep coming by even after many weeks have passed When the numbness wears off the pain of grief is unbearable. Don’t ever expect me to be quite the same How can I be when part of my being is here no more? But please know, dear friend, with your love, support and understanding I will live and love again and be grateful every day that I have you – dear friend.

Mary Bailey

Helping our Friends – the help of loving our supportive friends can be immensely valuable in the long and painful process of trying to build a new life without that special person loss seems insurmountable. But because we feel uneasy around those who are grieving, we usually spend less time with them at the precise period in their lives when they need us most. We can become a very useful and significant source of comfort for our friends who are bereaved. In our often fruitless search for the right thing to say, we frequently forget that there are lots of things that we can do to help our friends through a period of mourning and readjustment. 1. Be there

234 2. Listen 3. Send a note 4. Give a gift – something small, a book of poems, etc. 5. Extend an invitation – for a dinner – gives the bereaved something to look forward to.

A Friend Is…

A friend is helpful A friend is kind A friend is loving A friend is gentle A friend is willing A friend is welcoming

To share with Friends “I have so much on my mind. Just doing those things that need to be done consumes every moment. I can’t think of being with anyone else.” Yes, you are tired and weary. But you need other people like never before. Don’t escape into loneliness. Share with trusted friends your thoughts and fears. Choose carefully those friends, who will accept and understand, who will not fault you or deny your feelings. Emotions that are denied expression grow in isolation. People need people and friends need friends because we all need love. Don’t “lock up your hearts” and fail to heed the outstretched hand of a kindred spirit willing to share your burdens. As you relax physically and emotionally consider also a time.

Reason, Season, Lifetime People come into your life for a reason, a season, or a lifetime. When you figure out which it is, you know exactly what to do. When someone comes into your life for a reason, it is usually to meet a need you have expressed outwardly or inwardly. They have come to assist you through a difficulty, to provide you with guidance and support, to aid you physically, emotionally, or spiritually. They seem like a godsend, and they are. They are there for a reason; you need them to be. Then, without any wrongdoing on your part or at an inconvenient time, this person will say or do something to bring the relationship to an end. Sometimes they die. Sometimes they walk away. Sometimes they act up or out and force you to take a stand. What we must realize is that our need has been met, our desire fulfilled; their work is done. The plea you sent up has been answered and it is now time to move on.

235 When people come into your life for a season, it is because your turn has come to share, grow, or learn. They may bring you an experience of peace to make you laugh. They may teach you something you have never done. They usually give you an unbelievable amount of joy. Believe it. It is real. But, only for a season!

Lifetime relationships teach you lifetime lessons; those things you must build upon in order to have a solid emotional foundation. Your job is to accept the lesson, love the person/people anyway and put what you have learned to use in all other relationships in your life. It is said that love is blind but friendships are clairvoyant.

Author Unknown

Chapter 11

Coping With Death: Teacher and Child

Most teachers at some time will have to deal with the painful experience of helping a child in their class cope with the death of a family member or friend. The quality of the child’s interaction with adults is one of the vital factors that determine how well

236 they will cope with death. Because teachers are vital adults in the lives of children in their classrooms, it is essential that they learn how to help children cope with death. If teachers and counselors are to be helpful to children, it is important that they reexamine and come to terms with their own values and beliefs regarding death. The psychological effects of death on children can be long lasting. Consequently, death should be emphasized more in the primary and secondary education curriculums. This education could be extremely beneficial if presented informatively and straightforwardly. Teachers can have a great impact on how children see death, because the first thing presented to students is the teacher’s experience with death. It is important for teachers to know where a child is in regard to their own level of thinking. Children go through the grief cycle much differently than adults do. We must expose children to the fact that death is very natural, something that happens to everyone. Grade-school children are particularly interesting. This is a time of great vulnerability and innocence. It is a very crucial period concerning a child’s curiosity with death and dying. Solutions and recommendations for the teacher are also an important part of the process in dealing with the grieving child.

It would also be helpful to the teacher to know little about Batten Disease, through written literature or the parent or sibling, if old enough, being able to explain it to their teachers each year. It would make a big difference to the child, if the teacher could show interest in the feelings of the child, on the daily, weekly updates on how the sibling with Batten Disease was doing, and in the event of the sibling’s death, the teacher can then be much more supportive when the child returns to the class setting. In children aged seven to nine, death is understood as final, but personified as a skeleton, bogeyman, or otherwise. The personification is external, so running away or hiding can escape death by recitation of magical thinking. Children of this age do not commonly express their grief verbally, but speak to us in symbolic language, using fantasy play or acting out feelings for which they have no words. A teacher should try to identify the uncharacteristic behavior for a child and for the developmental stage of that child. Any marked change is enough to suspect that it is a grief response. Grief is more apt to be worked out in the child’s behavior. Some reactions to grief are those of hostility, guilt, fear, and displacement. They will show grief through anger. They feel deprived of something important in their lives, and because they cannot understand what has happened; they relate their feelings to the rest of their experience. Hostile feelings result from the feeling of being left or separated from the loved one. Children often feel that the death was a result of their misbehavior. This often leads to the child’s misbehavior in the classroom. Another

237 common feeling is one of guilt. Grieving children often feel guilty when a parent or loved one dies. Guilt plays an important role in grieving. However, with children it is often egocentric in nature. Their capacity for grasping enlarged ideas has not fully developed. Ideas are still focused upon themselves, their lives, and their feelings. In anger, at some point, children may have wished the death of the now deceased. When death occurs, they feel it is their fault. Children who have said “I wish you were dead” do not know the full meaning of their words, but they may well be overwhelmed by their feelings about the magical power of their words if, shortly thereafter, that adult should die. They quite naturally feel that it is their fault.

Fear is also present when a child is grieving. “Who will be next?” Fear derived from the tentativeness and fragility of life is an extremely natural feeling. Teachers need to explore those fears with the child and must, therefore, be in touch with their own feelings. Age’s seven to nine is when a realistic conception takes place, namely death as a permanent biological process. They cannot yet differentiate between wish and deed, and there may be a great deal of remorse.

Children who are not permitted to show feelings of grief over the loss of something or someone important to them have no choice other than to fall back on more primitive measures of defense, more often the denial of the pain of loss. Children have a right to grieve without apology or shame. Teachers should be aware of the possibility of a change in interest in grieving children. Many display their grief by displacing their feelings in other situations. School is a main focus for such displacement. Activities that once interested such children are abandoned. A grieving child needs a supportive adult who will help them find new reasons for continuing to learn and play. Some of the symptoms one should be aware of are: 1. The child cannot concentrate on schoolwork. 2. The child has no desire to play with friends. 3. The child is antisocial and despondent.

Psychological, physical, and social problems are common to children in terms of death and dying. Grieving children experience obvious deficits in their ability to cope. It is very important that a child is noticed. Teacher’s efforts with the grieving child are of great importance. They spend a great deal of time with the child, and their perception of the situation, and ways of dealing with it, are very important. Psychologically, the child is having a very hard time. There is really no way to prepare psychologically for the loss of a loved one. Studies have shown that when the subject of death is not handled well by adults, the child may be deeply injured.

238 Often this shows itself by what is said, as well as by what is done. Circumstances of the death and what preceded it must be considered. By age seven, children’s perceptions of death have grown quite clear, and they show curiosity as to the causes. In addition, children have their first inkling that “I” may die, which should prompt calm assurance from the teachers. It is very important to make children understand that they are entitled to have and express feelings and that it would be wrong and perhaps harmful not to do so.

At ages seven to nine, children see death as occurring mostly to the old, but they are beginning to sense that it can occur to adults like their parents and possibly even to children like themselves. A teacher should note that the child may lapse into long periods of apprehensiveness. The child must realize the weeping is okay and very healthy. Make the child understand that crying is for the one who will be missed so much. A seven to nine year old still has a limited vocabulary for use during stressful situations, and it is good to release these intense feelings. Children will often have violent outbursts accompanied by tears. They may seem to be in a dazed withdrawal and often this internalization will lead to physical ailments or collapse.

Social isolation is another common problem. Searching is a very common reaction to death. The task of testing reality has started. Children often find it hard to believe their loss and will search for the absent object. In the process, they will have shut out any outside contacts. Teachers should be aware of their students’ willingness to discuss their feelings in the classroom. They should consider the social maturity of the student. Facing the reality of death may lead to overwhelming anxiety for a particular student. To cope, the individual may use avoidance behavior toward the denial of death. A teacher who sees this should not try to eradicate this coping pattern. Most researchers agree that honesty is essential when discussing death with children. It is also very important to use direct language when discussing death. Many children suffer because adults try to soften the reality with euphemisms. “She’s gone away.” “Daddy’s in heaven.” “He’s gone to sleep forever’” The use of such terminology with young people serves only to perpetuate the confusion that these sorts of words can hold. The teacher can greatly aid a child who is grieving by just being a friend, a friend who will listen and honestly answer questions. The teacher can help children work through their feelings.

Mental health depends upon the frank acknowledgment of the denial of tragedy. Thinking and talking about death need not be morbid. Ignorance and fear of death overshadow the life, while knowing about and accepting death erases this shadow.

239 Most studies have found that it is more helpful to permit young children to inquire about death, to share memories, observations, and feelings with adults in response to the death of a significant person. Questions should be answered honestly or not at all. Honest responses convey all the emotions from the sadness of loss to happy memories and remembrance of the joy that person brought into our lives. Holding children when they need to express their grief is a genuine act; children need to feel love and caring when they must face the loss of a well-loved person. Talking, silence, and tears, each in their time, may be therapeutic. Children should be encouraged to express what they feel, as apposed to being told how they should feel or act. Further, they also need to know that adults in their lives grieve; this may be the best basis for accepting their feelings as natural. It is important for children to know that it is okay for them to feel the way they do. It is crucial that the attitudes of teachers help in recovery from the crisis of loss. All mourners need special sympathy and support from the people around them. To tolerate separation anxiety and to mourn are signs of the healthy personality who is capable of deep attachment. Only when the lost person has been internalized and becomes part of the bereaved, a part that can be integrated with the bereaves own personality and enrich it, is the mourning process complete.

Another issue a teacher must deal with is that of the other children in the class. The teacher can help the other children also in coping with death. When one child is grieving it affects the entire learning environment. The teacher must also help the other children overcome their fears. Children are curious about, and perhaps fearful of, a child with a life-threatening illness. Teachers can do much to allay such fears and satisfy the curiosity of the class by their acceptance of the ill child and by facilitating a dialogue between the ill child and classmates. Children and their teacher can learn much by a dialogue: to accept the possibility of illness and death for everyone, and to see the child with a major illness as essentially the same as themselves. Teachers should confront their own feelings and thoughts about death and death education. They should be good listeners and elicitors as well as skillful dispensers of information. What teachers say, how they say it, and how they strive to widen the understanding of students are of continual importance. Children should not feel that the adult is evading their questions. Educators have a need for, and benefit from, a seminar on death. As long as there is life, there is death. They should be aware, knowledgeable, and able to help in dealing with death. The changes we grieve as loss, as well as our grieving patterns themselves, are established in childhood. We have to teach children that loss is natural to life and that people and objects do not have permanence. A teacher should make it obvious that grief

240 feelings are normal. A reflective listener is very important to the welfare of the grieving child. One must realize that grief has its own unique rhythm and flow, which cannot be directed or contained by our willpower.

Talking feelings out are one of the best cures. Grief cannot be intellectualized away or thought through. Talking puts us in touch with our feelings. Time is the best healer. It takes much living, thinking and feeling to come to some understanding about death. Everyone’s reaction to and understanding of death is unique and personal. A teachers’ greatest gift in helping a child cope with death is their own ability to cope. This, however, is not an easy task. It can be a valuable learning experience for those who choose to pursue the subject, and I feel it is a necessity. I have seen the problems of children who were inadequately dealt with after a death. Children, as all people, need love and a sense of security and empathy when trying to cope with the loss of a loved one. Teachers are in the ideal position to help children grow through this experience of grief.

Coping with Death: Teacher and Child Most teachers at some time will have to deal with the painful experience of helping a child in their class cope with the death of a family member or friend. The quality of the child’s interaction with adults is one of the vital factors that determine how well they will cope with death. Because teachers are vital adults in the lives of children in their classrooms, it is essential that they learn how to help children cope with death. If teachers and counselors are to be helpful to children, it is important that they reexamine and come to terms with their own values and beliefs regarding death. The psychological effects of death on children can be long lasting. Consequently, death should be emphasized more in the primary and secondary education curriculums. This education could be extremely beneficial if presented informatively and straightforwardly. Teachers can contact with the bereaved child’s parents, informing them of how their child is managing at school. It is normal for changes in the child’s behavior to occur; however some may need special attention: 1. Vulnerability and a tendency to tears at the least little thing 2. Mood swings 3. Becoming withdrawn and daydreaming 4. Psychosomatic symptoms 5. Lack of concentration 6. Poor school work 7. Overworking

241 Changes in behavior may not occur immediately after the bereavement but may manifest themselves months or even years after the event – children revisit grief at different stages of their development. Teachers need to be aware when the death occurred and be sensitive to special days, which may be difficult for the child (anniversary of the death, Father or Mother’s Day, Christmas, or birthdays) Initially, some bereaved children may refuse to go to school at all because they feel they cannot face their friends and the possible questions, which will be asked. They feel different and are unsure about the reception they will receive. They may also be clinging obsessively to their remaining family members in case someone else should die. This may lead some children to truant. Others may adopt bullying behavior as a protest against their painful emotions. These children need additional help and support, time to adjust to the situation and an opportunity to talk about what is bothering them when they are able to talk about their sibling or loved one.

Chapter 12

Parents: Coping With Grief

Thank You, Zane

242 You handsome, handsome little person; eyes blue like God’s glorious sky. A big sideways smile goes straight to the heart. Ears close to that blond hair flying in the air, and magnificent big hands worthy of being carved in marble. With great feet giving promise of leaving huge footprints wherever you step. And you have wonderfully used these great gifts as God evidently intended, to touch the hearts of us all! Our eyes are opened to see the beauty of every little human sent here to us. Our ears hear with joy both the wonderful baby laughter and crying! We treasure every move of your little fingers, and resolve to do more with our own. We promise you Zane, to walk more carefully, choose our paths with discretion, and remember to thank God for all these gifts! We love you Zane! You are doing a great job. We recognize your very worthy, special life! Nurturing yourself “I was really stressed out when Jenny was first diagnosed. A friend convinced me to give yoga a try, and I have been doing it ever since. Even five or ten minutes a day of simple stretching at home helps me feel much more balanced and strong.”

As the parent of a seriously ill child, you are likely experiencing a wide range of thoughts, feelings, and physical symptoms. Taking care of yourself is extremely important so that you can continue to care for your child and family. Below are some suggestions for you to consider. Nourishing your mind, body, and spirit  Meet your basic needs for food and sleep.

243  Remember feelings are just feelings; they are neither right nor wrong. Sharing feelings with a trusted friend or counselor can bring relief.  It is not uncommon to experience physical symptoms as a result of the stress in your life right now. If these symptoms are significant, contact your own health care provider for evaluation and possible treatment.  Make time each day to nurture your spirit in some way. Look at the stars, take a walk, pray, watch a funny movie; eat ice cream…even a few minutes can restore your spirit.  Take two slow, deep breaths at least three times a day.  Realize that everything can seem harder when you are dealing with an impending death. Thinking, decision-making, even routine activities can be harder than usual. Allow yourself to function at a slowed pace.

Getting the help you need – and deserve  Realize that people really do want to help, but do not always know how.  Make a list of the kinds of help and support you could appreciate from others (meals, house cleaning, errands, and yard work, taking your well children out for a special event). When friends and family ask if there is anything they can do to help, say “yes” and refer to your list.  Identify a friend or family member to be the primary contact for organizing help and support for you and your family.  Recognize that support from others can be helpful, but also overwhelming at times. Set limits on visits and/or phone calls when needed.  Identify a friend or family member to be a primary contact for taking messages. Some families put a brief message on their answering machine thanking callers and updating them on their child’s condition. Use email or web sites to communicate if it is convenient for you. Consider talking with a parent who has been through a similar experience.

Caring for your family  Recognize that people cope with stress differently. What works for you may not work for others in your family. For example, you may find it helpful to talk to someone, while your spouse may choose to be alone or stay busy with work. Communicating what you want and need in order to cope can help you avoid conflict.  Make time for enjoyable moments with your child. While much of your time will be spent providing physical care for your child is sure to make time for activities such as reading stories, singing songs, back rubs, etc. This can be nurturing and supportive for both of you.

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Remember that this is a difficult time for all members of the family. Spending special time with your other family members is important. “May you find peace in trusting yourself and in knowing that you have done the best you could do with the difficult circumstances you have been given”

There is something unnatural about the death of a child. Children are expected to outlive their parents, so when a child dies, the family is devastated by grief.

Distraught parents may turn to you for help. Be there for them and listen to their concerns. Touch the mother or father with a hug, pat on the back, or handshake that conveys what words can not. Tell the family how sorry you are and allow them to share information about their child with you. To guide them through the difficult time that lies ahead, you will need to be familiar with the grieving process, appropriate intervention, and available counseling services.

Helping parents Navigate through the stages of Grief Though their outward responses to a child’s death may differ, men and women go through the same stages after the loss – shock, depression, anxiety, hostility, guilt, reconciliation, and relief, plus others. These stages are fluid: individuals may skip some and repeat others. Transitions from one to the next are by no means smooth or easy; rather they are fought with emotion.

The Child-Parent Bond The ties of love and hope that bind parent and child are the most powerful in human relationships. We can tear apart the strands and identify five factors that charge that bond with its special importance. 1. Children invite our love, and they return it richly. From infancy, by their physical helplessness and their intense need for interaction, our children invite us into a mutually loving relationship. Many parents freely acknowledge that the love they enjoy with their child is the richest, most satisfying, least ambivalent in their lives. Young children adore and idealize their parents. Preschoolers know that their mommy is the prettiest, sweetest, wisest mommy and their daddy is the strongest, bravest, kindest daddy. Children’s experience with our actual shortcomings do not shake their conviction. This kind of unqualified, no-strings love is heady stuff for parents, one of the sweetest rewards of

245 parenthood. 2. Our children carry the hopes and aspirations that are most precious to us. A child embodies deeply valued parts of the parent’s self. Helping his/her child grow, watching his/her potentials unfold, fulfils a parent’s hopes for himself/herself. 3. We create our child in our mind. A child exists as a real and separate person. Equally real is the child we create in our mind, a part of our self. Even before a child is conceived, parents have fantasized about it, endowed it with their hopes and longings. Our sense of our own self, both good and bad aspects, interweaves with our growing knowledge of our child to form this internal image. 4. Your child gives you a job and an identity. There is no question that raising a child is a job. Especially in the first six years, children require enormous investments of time and energy from their parents. No matter who works outside the home, no matter what the child care arrangements, parents are the bottom line. 5. From the day your child is born, you commit to protecting him/her. In no other relationship do we feel such a strong commitment to taking care of another. When our child comes into the world, we enter a compact with our newborn. We promise him/her and ourselves that we will keep him/her safe and provide him/her with all he/she needs to grow up. Our commitment has nothing to do with class, or income, or race; it is simply what parents do.

To my child

You are the trip I did not take, You are the pearls I did not buy. You are my blue Italian lake, You are my piece of foreign sky. You are my shining moor, You are my glistening sun. You are my inner peace, You are my abundant fun. You are my roaming land, You are my wavy sea.

246 You are, and always will be, everything to me.

Coping With Grief What is Grief? – Grief is an emotional reaction, which encompasses many feelings, such as disbelief, loneliness, fear, anger, guilt, regret, sadness, and despair. Most people who experience a death in the family suffer the emotions of grief, but bereaved parents probably experience grief the most severely. The death of one’s own child may be the most devastating and intense loss a person will ever experience.

The absolute finality of death creates a kind of loss that is unlike any other. This loss can be the most profound experience of life and also the most painful. Grief, as the expression of that pain, is part of a healing process enabling us to survive loss and to continue to function in the world. Grief is essentially a private experience. How each of us responds to the death of someone we love is uniquely our own personal response. However, the way in which we express that private feeling is influenced by what is acceptable in the larger society. Mourning ceremonies (funerals and memorial services) are models for the culturally accepted form of grieving, setting the tone and defining the manner of our expression. When the funeral or memorial service is over, grief is often just beginning. The disorienting feelings that arise in bereavement can become quite intense and last a long time. If unexpressed and unresolved, they can lead to serious emotional difficulties resulting in self-destructive behavior or an impaired ability to function. Thus, it is important to acknowledge bereavement, to experience and resolve grief, and eventually to find a way through the pain.

What do parents lose when a child dies?  The loss of a piece of yourself. Our time, our efforts, and our hopes – these are our most precious commodities, the materials of our selves. We invest them lavishly in our child. The more we have invested, the more we lose. How much of ourselves we have invested, is not measured by how many months or years your child lived. A stillbirth or the death of a newborn is as great a loss as the death of a young adult. The death of a child is an event that occurs in the parent’s inner and outer worlds.

247  The loss of illusions. Our belief that we can protect our children too often turns out to be an illusion. We elaborate other illusions as well – such as “If I behave right and play by the rules bad things will not happen to me” or “This is a good neighborhood; my kids are safe.” or “Cancer happens to other people.” These ideas sit in the back of our minds, seldom invoked; yet powerfully reassuring. Illusions indeed, as any reading of the daily paper prove. But they are necessary and helpful ones that even the most sophisticated and cynical of us weave for ourselves. They enable us to get about out lives. When you cannot protect your child, you lose the canopy of illusions that has sustained you. Your child’s death delivers a staggering blow to your self-esteem. Your job as parent was to protect your child, and you could not. No matter what the circumstances of his/her death, no matter how impossible to prevent or beyond your control, you hold yourself responsible. If what happened to your child happened in another family, you would not hold those parents responsible. Yet you hold yourself to a different measure.  The loss of the future. A child’s death robs you of your future. Your child is woven through the tapestry of your future, an integral part of the design. When death rips your child from the tapestry, the design is changed, damaged past repair. You loose the pleasure and pride that comes from watching him/her life unfold and his/her potentials flower. You loose the pleasure of his/her company. Holidays and birthdays turn into hollow, exquisitely painful reminders of his/her absence. Parents hold on to fragments of their tapestry. Your child grows up in your mind. When your child dies, you loose simultaneously on so many fronts. You loose the embodiment of your special hopes and you loose your second chance. You loose someone who loved you and whom you loved, perhaps more extravagantly than anyone else in your life. In your own eyes you have failed, because you could not protect your child. You loose a job and a piece of which you know yourself to be. You are cheated of the natural order of time and generations. The tapestry of your future has been torn and forever altered. Facing the awful catalog of your losses, you still must look to your other children, who still need you and need your help to grieve.

The Work of Grieving Grieving is the hardest work we do. Simply put, grieving is the work of coming to terms with the fact that the person we loved is dead. The person who loved us back, whose needs gave shape and focus to our days, is dead. No longer here. We will never have him/her back. What we most want we cannot have. It is terrible work, and utterly necessary. The unconscious gives up nothing willingly. As human beings

248 we give up nothing easily. When we loose someone we love, our own lives stop. Our loss immobilizes us. If we do not grieve, we stay frozen in pain; only by grieving can we enable our lives to continue. Grieving families learn their own measure. What they once felt they could not bear for a day, parents find they can bear every day, only because they must. Acute grief, with its disorganizing symptoms and loss of function, slowly gives way to the long, long haul of mourning. This long haul is the work, simultaneously, of building a life in which the child does not live and in keeping the child alive in your heart. or another, for the rest of their lives. Life itself happens all at once, and these tasks will come at you sometimes all at once, seldom as simply as one at a time. When a child dies, bereaved parents must:  Face the finality of the loss;  Remember past memories and experiences with their child;  Sort out what aspects of their child they can keep and what must be let go;  Deal with a sense of failure and personal diminishments; and  Build a life for themselves without their child.

The list is daunting. Perhaps it looks impossible. Perhaps as you read it you felt a surge of pain, or rebellion, or sheer unwillingness to give up so much that has been a part of you. Keep in mind that this is not a list for a month or even a year. These are not items that get checked and put behind you. The work goes on intensely for the first two years and then off and on, as you need to, for the rest of your life. People take each task up, as they must, as the flow of their lives demands.

Why must we grieve? The spiritual song “Rock of My Soul” So high, you can’t get over it, So low, you can’t get under it, So wide you can’t get around it, You must go through that door.

When you lose someone you love, your world changes forever. When you lose a child, it falls to pieces. Nothing can ever be the same again. through grieving you must resemble a world in which you can live. This new world is not built in a day or a year. Parents say they work with these tasks intensely for two to four years and, one way work on one or several until they find a measure of resolution, enough room to go on. Their grief recedes for a while as other pieces of their lives claim them. They will return to the same tasks again and again. Imagine climbing a spiral staircase. You come again and again to the same point on the spiral, but each time you reach that

249 point, you have moved to a new level, and you see the point from a different perspective. 1. Facing the Finality of your Loss Immediately after a child dies, especially if his/her death is unexpected, you simply cannot face the loss all the time. You find yourself in periods of denial. There has been a mistake. It cannot be true. Parents bob and weave with what they know. Denial and fantasy become problematic only when they interfere with a person’s ability to get on with his/her life. 2. Remembering past memories and experiences with your child. Remembering is the work of a lifetime. Sometimes pleasurable, sometimes intensely painful, usually both, remembering your child is the very essence of grieving. Every memory of the child who has died must be summoned up, with all its feelings, and reworked with the new and painful knowledge that your child is gone. This is one of the most painful aspects of grieving, the releasing of your love. We love the dead differently from how we love the living. As you live with the reality of your loss, your love must recognize the changed reality and change itself. You will never stop loving your child. But in order for your life to move again, for you to be able to welcome any good thing into it, you must release some portion of your love from your child who has died. Remembering, bringing up feelings and memories, is what accomplishes this painful task. Remembering comes in many ways. Most troublesome are the waves of memory and feelings that sweep over you, unexpected and unbidden. This happens most in the early months after your loss, as mind and heart and memory still grapple with disbelief. Over time, as you live with your loss and your life shapes to the fact of it, the floods of memory come less often. Their intensity will diminish often.

Holidays, your child’s birthday, the anniversary of his/her death all will bring memories flooding back. Because your child continues to grow up in your mind, times that mark what would be a new piece of his/her life will be especially poignant. Often you will remember your child when you choose to, spending time that is both comfort and pain, replaying the times you had together. Sometimes you will want to remember him/her in the privacy of your own thoughts and while alone, and sometimes you will want to share your memories, especially with the people who knew him/her. Your child’s possessions, photographs and videos, songs and smells and special places all bring back the memories. Take the time. Spend the hour in his/her room. Look at the things that reminds you of him/her. The remembering helps you with the work of releasing love and of holding to what you can keep in the first couple of years after your child has died,

250 remembering he/she will be the center of your days and of your life. It needs to be this way. It is through the remembering that, slowly, you will allow your head and heart to know what has happened to you. This is the central work of grieving. Only as you do a great deal of this work, over more time than you imagined, can you lift your eyes to what else might enter your life. Conversations with parents who have lost a child inevitably come around to their experiences of their child’s continuing presence. Your child may appear to you in dreams, once or many times. 3. Sorting out what you can keep and what you must let go. You keep the child in your mind. He/she is yours for all your life. What you cannot keep is the child in the real world who has now been taken from you. While your child was alive, the distinction between the two seldom showed and hardly mattered. Now, when one is gone and the one who remains feels like a pale shadow and poor consolation, it becomes all the more important to find out who is left for you. Closely interwoven with remembering, the work of sorting out becomes a way to claim all that you can of your child. Parents report that they find themselves taking on some aspects of their child, usually aspects that they admired and shared. What parents describe so frequently as their child’s growing up in their mind, we can also understand as a vital, active holding on to the child who lives in their mind. Just as with a child still alive, the internal image changes, reflecting what would be the current child’s age and size and staying faithful to his/her character. 4. Dealing with a sense of failure and personal diminishment. A child’s death leaves parents with a profound sense of failure. As a parent, your first commitment has been to maintain the bright canopy of love and protection arching over your child’s life. When that canopy fails, no matter what the reason, you feel it as your personal failure. The blood clot that drifts blindly into the placental artery, the white cells’ insane multiplication, the driver so drunk he/she lurched across the center line, this horrible disease called Batten Disease; they are events out of your control and you would never hold another parent accountable for not protecting them. But because you could not protect your child from them, you may feel yourself less capable, somehow less reliable, and guilty of some unspecified failure. You feel a terrible helplessness. You could not stop the clot, slow down the white cells’ reproduction, changes the path of the car, or know that you carried these genes. Nor could you keep your child always at home or always out of the path of every dangerous thing. If other people’s carelessness or viciousness led to your child’s death – if indeed it might have been prevented – then rage and outrage compounds your helplessness. If your

251 child’s judgment, or your own, was unsound, you are likely to turn the torment and rage against yourself. For many parents, feeling that they failed to protect their child and feeling the helplessness that comes with their child’s death combines to create a sense of personal diminishment. The conviction so many bereaved parents voice that they are not very good or competent or worthwhile people. This is one of the most painful aspects of mourning and, for many parents, it is one of the slowest to resolve. What seems to help the most is your own decision that you will sit with your pain, even the pain of your own self- reproach, and not attempt to avoid it. You must go through that door. At times parents’ sense of personal diminishment gives rise to thoughts of suicide. For some it is a fleeting thought; for others, a preoccupation that haunts them for months and years. Other parents speak of their thoughts of revenge on the people whose actions led to their child’s death. These are powerful feelings, and frightening. They claim your time and your thoughts; no other work of grieving can occur when you are held in their grip. You should know that in the first months after a child’s death, such thoughts are not unusual; if you find them persisting, or if you think seriously about acting on them, that is cause for concern. Although you may not believe it, you will not always feel the way you do now. As you grieve and find your ways to live with loss, your sense of personal worth will slowly rebuild. You likely will find things you can do that help you feel less helpless and, in fact, help you feel like a worthwhile person. Often these take the form of a memorial to your child or work you may do in your child’s memory. 5. Building a life for yourself without your child. Your design for your future never included the possibility of your child’s death. You had no contingency plan, no instructions. For the first year or more, you will not know how you can even imagine a life for yourself. Parents who have preceded you in this dark country say that the future is not the first concern. The more urgent tasks of reckoning with finality and with memories will claim you. The other claims on your life tend to continue: partners, other children, jobs, and other family. Although the demands that these make are frequently more than you can meet, they also provide a structure that your life desperately needs. Parents who have been there caution you to preserve the relationships you have and make no decisions hastily. If you have a partner, you both will have to find a way to support and respect each other’s grieving. Your styles of grieving will differ. Men frequently keep their grief to themselves. Your partner’s obvious sadness or his/her request that you talk about your grief may feel like an assault on your all too tenuous hold on yourself. For women, your partner’s reserve does

252 not necessarily mean that he/she does not care, but rather that he was schooled to deal with his/her feelings very differently, much more inwardly. It is inevitable that you will be out of phase with each other. One of you will be ready before the other to resume aspects of your relationship that gave you pleasure: meals together, sex, social life, sports, vacations and the like. Whether you are ahead of your partner or behind, working out what you will do and when requires tact and a willingness to hear each other’s needs. The shape your life will take emerges slowly. It will come from your gradual understanding that you look at your whole life differently since your child died. After a child’s death, parents feel that their priorities have shifted, in the direction of relationships, connectedness, making a contribution in the lives of the people they value. Conventional markers of success – money, promotions, possessions come to matter less. Many parents search for a way to honor their child by making a difference in the lives of other people. Facing the finality, remembering, holding on and letting go, dealing with your personal sense of failure, building a life for yourself without your child: the work of grieving for your child is a long haul, work for a lifetime.

God Saw You Getting Tired

God saw you getting tired, When a cure was not to be. So he wrapped his arms around you, And whispered, “Come to me.”

You didn’t deserve what you went through, So He gave you rest. God’s Garden must be beautiful, He only takes the best.

And when I saw you sleeping, So peaceful and free of pain I could not wish you back, To suffer that again.

Author Unknown

Acute Grief

253 Emergency Responses Shock – For most people the first response is shock. Shock is a physical and psychological emergency reaction, a way of slowing everything down, of warding off facts too horrible, too overwhelming to take in. It is an involuntary response. Shock is no more under your control than is running a fever in response to infection. A person in shock cannot “snap out of it” nor will the condition away. It will dissipate within hours or days. It can take the form of a physical immobilization. In shock you may be unable to move or speak coherently; people report that they cannot think.

Shock responses may also be active and intense; you may have screamed, or run from the room, or physically attacked the bringer of the news. All of these behaviors are means of shutting down, of distancing yourself from a reality that you do not yet have any way to deal with. As you look back, your behavior may seem bizarre and totally out of character for you. Remember that your entire world had been knocked out from under you. You were in free fall, and your first task was to find a way to stop the fall.

Shock normally begins the grieving process even if the bereaved expected the death. Parents may act as if nothing is wrong or respond to events in an almost superhuman manner. Later, they may feel guilty about their behavior – or angry that no one saw past their façade. Shock usually wanes in four or five weeks if the death was sudden or violent. The parents of a child who dies after a chronic illness may emerge from shock sooner, or experience it less acutely.

Initial shock and denial – The first reaction to death, especially sudden death tends to be shock, numbness, and often, denial. It is the psychological equivalent of the kind of psychological reaction we experience when we suffer a serious physical trauma - our body goes into shock, slowing down all nonessential – functions until basic equilibrium can be regained. Emotional shock and numbness allow us to delay the realization of death until we are capable of taking it in. The magnitude of loss inflicted by the death of someone we love is often so great that we cannot comprehend it all at once. Because immediate realization of the totality of the loss would overwhelm us, shock permits the masking of truth, at least in part. It allows us to recognize just a small piece of the truth at a time. All of the physiological symptoms of shock, fear, and anxiety may show themselves during this initial period. A racing heart, dizziness, or even faintness, appetite loss or stomach trouble, restlessness and insomnia, are all common symptoms of this reaction.

254 Physical shock and psychological denial are also a way of protesting us against reality. Denial is our way to try to discredit the information, to cancel the news, to keep it away. Depression - frequently follows shock. Many parents describe themselves as feeling emotionally numb for many months. This is when the bereaved are likely to see a doctor, who may prescribe antidepressants. Unfortunately, these drugs may only prolong the grieving process, by preventing the parent from working through the pain and confronting the loss. If the parent slips into clinical depression, however, antidepressants can help stabilize him/her for grief counseling. A common response to loss often is characterized by profound and painful sobbing. Parents report that at times it feels as though the tears will never stop. There is a rest, but then for no apparent reason, waves of despair and anguish wash over the parent once more. Between the tears, one can sit alone, staring silently. Those periods of silence can last well beyond the periods of tears. The thoughts of depression take over, thoughts like: What is the use in trying, it is all over” or nothing I do matters. Because nothing will change what has happened to my child”. Depression is subtly rejected and judged as pathological by much of our culture. When people display such feelings, they are often told to “cheer up”, given medication or offered distractions. Such responses are inappropriate, for depression is part of normal, necessary, and growthful grieving. It attends to another aspect of a basic human struggle that loss stirs. As we mature, we develop and modify our definitions of the following words: competence, capability, value, and potency. They are words of profound personal significance. They are the criteria that people use to decide if they are OK or not. What criteria does a person have to meet to feel like a competent parent, a capable worker, a valued friend, or a strong person? Each person determines these standards privately, even secretly. When parents are confronted with an impaired child, whatever definitions they held for competency, capability, value and potency usually no longer applies. How does a mother feel competent when she has a retarded daughter? She cannot use the measures of her peers, like having a daughter graduate from college, or be homecoming queen. What is the worth of a father who cannot “fix” what is broken in his impaired son? Out of this struggle of defining one’s worth come the frightening feelings of helplessness, hopelessness, and haplessness. Faced with loss, a parent feels unable to act effectively (helpless) unable to imagine that things will ever get better (hopelessness), and unable to believe that their lives are touched by good luck (hapless).

Such feelings are terrifying for both the parents and those around them. For that

255 reason, it is hard to see that depression is a normal and necessary part of the grieving process. Depression is the medium that helps parents come to new definitions of what it takes to be a competent, capable, valuable, and strong people, even though their child has impairments that they cannot cure. Anxiety is the next stage, producing feelings of abandonment, helplessness, hopelessness, and loneliness that can not be resolved, even within a marriage. At this point, parents often become overly protective of surviving children, sometimes smothering them emotionally. The marriage may also begin to suffer because of a breakdown in communication. When a person loses a dream that is central to their being, they are forced to make major changes within themselves and within their environment. To deal with having an impaired child, parents go through dramatic changes that affect their attitudes, priorities, values, and beliefs, as well as altering day-to-day outlines. Such changes require a great deal of energy. Anxiety mobilizes the energy needed to makes these changes. Further, it gives focus to that energy so that the changes can be actualized. Anxiety is the inner source of the need to act. Anxiety is generally seen as hysterical, inappropriate, and unacceptable. The culture’s message is clear. As a rule we advise anxious people to “calm down”, to take medication, or to use alcohol as a “solution” for the “problem” of anxiety. These unsolutions keep the parent from changing and often make things worse for all concerned. Realities must be faced, stressful as they might be. It does not take long for most parents to become aware that they, not some professional, are their child’s medical, educational, and therapy managers, even though they may have minimal knowledge of these areas. That alone should drive home the urgent need for energies to be mobilized and focused by the crucial feeling of anxiety. Anger – you may also find yourself getting angry with and being rude to the people who most want to help. Their very presence becomes an irritation; what you most wish is that they would leave you alone. Your feelings puzzle you, scare you, and make you wonder if you are losing your mind. You are not. You are so spent, so depleted, that you have nothing left, even for friendship. It is worth saying again. You will not always feel like this. The same symptoms and behaviors of acute grief that claim you and make you someone you hardly recognize are working to help you. They are protecting you as you take in the news. They are the evidences that all your energies are concentrated on getting the painful reality into your head and your heart.

Anger, for many people, is the most disconcerting of the feeling states. It too is a natural and necessary part of the grieving process. Parents feel anger at the harm done to their child and the shattering of their dreams. When one encounters a significant loss, it is likely that one’s internal sense of justice is severely

256 challenged. To continue to trust in the world, one must have a sense of justice that confirms an orderliness and fairness to the way the world works. A parent can righteously demand to know why he or she has an impaired child: “Why me. Why not you!” Implicit in the question is the notion that there must be good reason that such a thing happens to one parent and not another. A parent’s concept of justice, like value and worth, is another unique product of that individual’s thinking and development. When confronted with the traumatic loss of a dream, that internal sense of injustice, the parent develops new ways to look at justice in the world. “What, after all, is fair, if this can happen”? Anger is the medium through which a parent redefines fairness and justice. It integrates new beliefs within the deepest emotional levels of the grieving parent. Unfortunately, anger is an emotion that is actively rejected by the culture at large and by people closest to the parent. The angry parent experiences rejection by others, confusion about feeling anger and acting out the feeling, the feeling of being out of control. All of this makes it very difficult for this important feeling to run its course. Anger also poses other dilemmas. Unlike the other feeling states of grieving, anger is directed toward someone or something. Who (or what) is the object of parental anger? This question deeply distresses most parents; because the honest answer is often so troubling that many people avoid asking themselves the question. The unacceptable answer, of course, is that the impaired child is the object of anger. After all, who has entered the parent’s life, disrupted it, caused immeasurable pain, and drained the parent’s time, energy, and money.

Most parents were raised to believe that feeling and expressing negative feelings about one’s child is taboo. The child never asked to be handicapped. Let alone to be born. How can one be reasonably angry with this child? If the child is blameless, then it must be unreasonable to feel anger toward the child – even though one does! The conflict between what parents feel and what they can permit themselves to express can cause a return to denial. Another outcome of this conflict is that the parent can displace the anger onto others. Spouses, non- impaired siblings of the impaired child and professionals are all possible targets of this displaced anger.

The anger can be recognized and vented in appropriate ways. The sense of guilt and disappointment can be explored and expressed so that harsh self-accusations can gradually yield to self-forgiveness. There can be a gradual giving up of the attachment to the lost dream – the dream of a fantasy child – and reconciliation with the reality of the actual child’s impairment. The sense of helplessness can be

257 examined. What cannot be modified can be accepted for what it is, but this acceptance can be paralleled by the mobilization of problem-solving efforts on behalf of the child and the family. Hostility usually stems from unexpressed anger. If the child died suddenly while under the care of one parent, the other may accuse the mate of wrongdoing. You can play an important role here by stressing the need to express anger in a proper manner. Suggest two techniques that can be safe outlets for these feelings. The first is to take several ice cubes outside, find a concrete wall, and throw the cubes at it, one at a time. The cubes shatter, and there’s nothing to clean up. The second technique is to have the bereaved person take a regular size pillow and put it in a kingsize case. Grasping the excess material like a handle, the parent can swing it to hit the bed or some other object. Do not be surprised if you hear parents express anger at God. They may feel rejected by a higher being who lacks compassion. As a result, some parents will turn away from religion. However, others become deeply religious and will be able to find comfort in their faith.

Fear - As anxiety mobilizes people to deal with change, fear is a warning that alerts the person to the seriousness of the internal changes that are demanded. One’s sense of balance and order are dramatically challenged when one confronts a meaningful loss. The parents experience the terror of knowing that they will be required to change on a fundamental level, against their will, with full understanding that the process of internal change is very difficult.

Significant losses produce a profound sense of abandonment and vulnerability. We have a number of sayings to cope with this level of fear, for example, “It is far better to have loved and lost, than to have never loved at all” Each person must find their own words to confront the sense of abandonment and vulnerability generated by a significant loss. Most parents experience the fear of vulnerability about having more children after they have had an impaired child, or about “over- protects”, the gut wrenching fear of permitting their impaired child to do anything that feels risky. Given the ways that this part of grieving is manifest, it should not be difficult to see that fear is the medium that encourages the struggle to reattach, to love again in the face of a loss.

Reconciliation occurs when death is accepted emotionally as well as intellectually. Reassure parents that this type of healing does not happen quickly. It can take up to two years or more. Relief follows reconciliation. With professional help, couples

258 may strengthen their marriage, improve parenting skills, and build closer bonds with their surviving children. However, feelings of guilt can flare up again.

Numbing - Parents may say, “How horrible of me for going an entire day without thinking of my child.” The truth to that is – like shock, numbing is an emergency response to a reality too painful to deal with. Unconsciously imposed, it buys some time until you can take hold of your loss. After a death, many people report feeling in a fog, doing what is required of them with no connection to their feelings. Their numbness may last for a few days, or it may persist for weeks. The numbness may cave in suddenly, or it may ebb slowly and return from time to time when the full measure of the loss becomes unbearable. Protected from pain, you may believe that you are handling things rather well. As the numbness ebbs and you begin to realize fully that your child is gone, the realization can come like a second blow, a psychological aftershock.

Denial – as shock fades, and your mind and body reclaim their control, you start to take in the news. But it still may be too much; you move in and out of denial. Lasting for hours or sometimes days, denial is another way of retreating from a reality too painful to bear. Denial says that it cannot be true. Someone is lying. There has been a horrible mistake. The phone will ring, the door will open, and he/she will be standing there, grinning his/her wonderful grin. At any moment the doctor will step back into the room with new test results and you can all pack up and go home together. As irrational as it may seem to others, denial serves a necessary purpose. It is a psychological emergency measure, a temporary forestalling. You are not yet ready to confront your loss head-on. Denial is a fragile and temporary respite, a warm but where you seek shelter briefly before plunging into the artic night. It buys you some brief time in which to gather yourself for the awful work to come. If your partner or child has relied on denial; you know how uncomfortable it can make you. You also know that it does not do much good to challenge denial directly. Denial is brittle but remarkably tenacious; people cling to it for as long as they need it. To the person denying, challenge feels like an assault on the only comfort he/she has. Time and events will work to erode it. Brittle, unreal, denial still serves an important purpose. It cushions your mind and heart against truths too horrible to face all at once. Even as you deny what has happened, at some level you know it is so. Gradually the denial gives way, crumbling, under the weight of its own unreality. Gradually you find the strength to look into the awful face of your loss. People who deny are considered stupid, obstructionists, dull, or deliberately irritating by many who have to deal with them. None of that is true. Parents of impaired children manifest

259 denial as a normal course of trying to deal competently with loss. It is impossible to live life fully while maintaining an awareness of the awful things that can happen to people. Most people routinely shield themselves with such thoughts, as “the terrible things that happen to other people cannot happen to me because….” This system works fine as long as nothing terrible happens, but when it does, no one is prepared to deal with it. This is where denial in the service of grieving comes in. Denial buys the time needed to blunt the initial impact of the shattered dream, to discover the inner strengths needed to confront what has really happened, and to find the people and resources needed to deal with a crisis for which one could not be prepared.

Self-esteem - In the family with a disability, loss of self-esteem comes from many sources. From the first time we begin thinking of conceiving a child, most men and women have doubts about the outcome. But these are usually dispelled by the assumptions we make about our capabilities, often without much conscious thoughts. Most of us expect to contribute unflawed genes to the embryo, which will cause it to develop into a healthy baby. Both parents expect themselves to surround their child with a cocoon of care and protection to ensure its happy and healthy development, to ensure the fulfillment of at least some of their daydreams.

A child’s impairment, whether inherited or acquired confronts us with a sense of having failed to live up to our expectations. We are helpless to undo the faulty development and our sense of competence and self-regard can be shaken drastically. Loss of self-esteem is fed by guilt. Most parents painfully review any acts of omission and commission that might have caused the child’s impairment. We review our thoughts and feelings as well. Any negative feelings about the pregnancy or about the child before his/her problem developed can seem unforgivable. A parent can experience guilt and remorse over any mixed feelings. Only secretly do parents allow ourselves to recognize the anger we feel at moments toward the disabled child because he/she is afflicted. Such anger can feel totally unacceptable. All too readily we find cause to accuse ourselves, since we are all imperfect. When the sense of guilt is unbearable; it may be expressed as hostile blame of others – doctors, nurses, our own parents, and quite often our spouses.

Even as the hostility is felt and expressed, the internal critic that operates in each of us – our conscience – may judge the hostility to be unjustifiable, even unforgivable. How can we feel that way towards our own children? So from still another quarter, the self-esteem is lowered. From a sense of inadequacy or blame,

260 feelings of helplessness, guilt, and hostility, the boom is lowered on our faltering self-regard. Depression enfolds us. The intensity and the duration of our grief and depression will vary. Each new major disappointment and loss that we experience through a lifetime tends to re-kindle the feelings associated with earlier losses and disappointments.

The consistency of our self-esteem varies among us. Self-esteem is nourished in childhood by our parent’s love and acceptance; it is shaped by their expectations of us, and the capacity and desire to meet those expectations. Self-esteem reflects the congruity or the incongruity – the fit, in other words – between the ideal selves we aspire to be and the actual self we experience in reality. When we have come to accept both our limitations and our capabilities, when our ideal selves are in reasonable harmony, our self-regard is likely to be secure and resilient. It can absorb some bruises. Those who lack adequate nourishment of their sense of goodness and worth, and who have transformed critical judgments from others into harsh self-judgments; those who cling to ideals of power and perfection and who depend on extraordinary performance and external recognition to feel worthwhile – such people have precarious self-esteem. When gaps between their ideal and actual selves are exposed, when they are threatened by helplessness, they plunge. In each people, normal feelings of depression, which everyone feels from time to time, may develop into depressive illness.

Guilt - Parents of impaired children manifest guilt through the normal course of grieving and are often criticized for doing so. Guilt is a feeling state that has become so identified with being neurotic that people feel guilty about feeling guilty. Since sharing such feelings often evokes negative judgments, it can be difficult for a sophisticated parent to talk about guilt freely. On the surface, guilt ridden people may appear not only neurotic, but also superstitious, ignorant, and primitive. They are often viewed as unpleasant, uncomfortable people to be with and therefore are dismissed or treated harshly by friends, family, and professionals. Generally, parents of impaired children express guilt in one of three ways. One way is by telling a story that explains how they are responsible for their child’s handicap. Their story is often accurate and, on the whole, persuasive. The current emphasis on the prevention of birth defects has brought many parents to feel that they have caused their child’s impairment. The issue is not the logic, but the feeling of guilt. Another way that guilt is manifested is in the conviction that the child’s impairment is punishment for past inappropriate thoughts, feelings or actions. One of the more common “guilt thought” is

261 regretting the pregnancy sometime during gestation. When something goes wrong after that thought occurs, “it’s all my fault” becomes a natural outcome. Lastly, guilt can be expressed through the parent’s belief that good things happen to good people, and bad things happen to bad people. Because parents have an impaired child, they must be bad people, and consequently feel shame and guilt. How can such painful explanations of tragedy be useful to bereaved individuals? Guilt “explains” the unexplainable.

Human beings begin to question the “why” of things from very early on in their lives. What are the rules, which govern the way of things: cause and effect as well as right and wrong? A most important” why” concerns one’s “right” or “wrong” actions affect one’s life. What difference does it make that a person is moral, ethical, legal, caring, and ambitious? How is it that one does or does not influence the events of one’s life? Some of us found early and easy answers to these questions and have not considered them since. After a loss, such questions cannot be answered in an ordinary fashion. Rather, they must be addressed through the kind of grief-related struggles addressed here. When people confront a loss, the beliefs they held regarding cause and effect, right and wrong, and their impact upon life is deeply shaken. The order of things is totally upset when an innocent child suffers. The parent experiences deep pain, pain that can be used to reorder the rightness of the world. Guilt is the feeling state that facilitates this struggle to reorder. Basically the guilt-ridden person is saying that they are accepting responsibility for everything. It feels better to do that than to believe that they have no influence on anything. Guilt, in this sense, helps one to redefine the issue of cause and responsibility in the light of loss.

Some parents are unable to tolerate the grief and depression precipitated by their child’s affliction. Sometimes, there actually may be an absence of grief. Although to outsiders this may seem to express courage (smiling in the face of adversity, keeping a stiff upper lip), in fact, it does not serve the parent of the family well at all. When the conscious experience of grief has been postponed, it is likely to erupt unexpectedly and inexplicably at a later time. Or it may be completely avoided, but the avoidance can draw the parents’ emotional energy away from family and friends. A parent may become distant and detached, absorbed in work and emotionally unavailable to the other spouse who may want support for his/her own struggles with the situation. Even those who can tolerate their grief and depression proceed with the work of mourning slowly and unevenly to protect themselves from being overwhelmed, and to preserve their capacity to function in

262 daily life. Grief can smolder, to be rekindled again and again. Each time it flares; steps toward mastery can be taken.

Changes in perception, concentration, and memory – when the emergency measures of shock and numbing and denial give way, you are left with the most painful of all human experiences, acute grief. In the midst of acute grief you cannot concentrate or make decisions. Reading a newspaper is beyond you. Memory fails; you forget the simplest things. Thoughts of your child crowd out everything else in your mind. Every chore and act you perform evoke memories of her/him. Every person you meet, every place you go floods you with reminders of his/her presence and of your loss. You see him/her in the next aisle in the supermarket, at the movies, in a car passing you. These experiences of mistaken identity, of seeing your child, can be so intense, feel so real, that they make parents fear they are going crazy. You are not going crazy. You are hard at work. Your mind is actively, intensely, engaged in the hardest work that human beings must ever do: coming to terms with loss. The essential work of grieving is the facing, day to day, memory by memory, the new, awful reality that your child is gone. This is the agony and the escapable task. When you find your mind flooded with thoughts of your child, know that you are at work, taking care of yourself, doing what you must do. When you see him/her on the street, you are not crazy, you are at work: remembering, longing visually, doing the work of grieving. When you cannot think clearly, cannot remember the simplest thing, you are at work. Like a computer churning away at a huge, complex equation, your mind has focused all its energies on the painful, multifaceted, exhausting work of grieving. You do not think or remember very well simply because all your processing capacity is in use. There is not enough left over for the requirements of routine concentration and memory. Increased dependency because you are overwhelmed, the ordinary routines of your life now feel like staggering chores. What did automatically before now requires concentration and energy, exactly what you do not have. You may find yourself relying on other people to do things that you would usually do for yourself: planning meals, getting the car serviced or clothes washed, making routine arrangements for yourself and for your other children. Interactions with other people are the most difficult. Even the simplest interactions – greeting them, making conversation, telephone calls, seeing friends and coworkers – feel like more than you can manage. A relative or a close friend who can step in and help with these will be of enormous value. You are wise to let that person help.

Lowered Expectations – you will not always feel the way you do now. The first

263 six months are the worst, the most disabling, for this is when you are struggling so hard to get your heart to accept the worst of all losses. In this period all your psychological energy is consumed just with coming to know that the loss is real. You live in constant, severe pain. During this period you must lower your expectations of yourself. Physical symptoms – acute grief is an intensely physical experience. If you have previously had trouble falling asleep, it now becomes ten times worse. When you do sleep, dreams of your child haunt you and wake you. Later on dreams will become a source of comfort and a connection to your child. But now, as you are struggling to accept the new reality, dreams are more likely to be filled with images of his/her death. Or you may sleep ten hours and awake as tired as if you had not slept. Your strength and energy desert you. Walking up a flight of stairs becomes a taxing chore. Everything you lift feels heavier; the simplest tasks leave you fatigued. Chronic fatigue and exhaustion become constants, often as long as a year. You hear yourself sighing. Breathing hurts. You may lose all interest in eating and even loose awareness of hunger. Food has no taste. You eat only because someone tells you to. Swallowing may become difficult. Your stomach may feel empty, or it may feel full and your whole digestive tract, slowed down. Your whole body misses your child, aches with your sadness. You may have a generalized, all over aching or a localized pain. Grief seems to lodge in the chest and the gut: a strong, dull ache like an iron hand around your chest or a hollow pain in your stomach. Localized pain will give way to a more diffuse but still intensely felt sense of emptiness that may last for a year or more. Mothers who have lost a baby or a very young child frequently get “aching arms”, a heavy ache, especially in the upper arms. Their arms cry out for the child they can no longer hold. Searching – you may find yourself searching for your child. Many parents remember from the early weeks and months a driven, unfocused restlessness. You wander from room to room, especially to your child’s room, not knowing what you are searching for or even that you are searching. You walk past your child’s school, visit his/her playground, the places where he/she hung out. You may drive to where the accident occurred, or maybe you just drive. Guilt and self- blame – guilt and self-blame occupy much of your thinking. Thinking about the days and weeks before your child died, you fix on the things that you did and on what you failed to do. If you listen to other parent’s talk about what they did, you would want to hush them, reassure them that nothing they did, or failed to do, could have changed what happened to their child. But when it is you, and you have lost your child, always in the first months there will be the guilt. It has to do with helplessness. The worst thing is that nothing you did or failed to do could have changed what happened. This is the most painful part: for all your love and caring,

264 for all the times you protected your child and taught him/her how to protect he/she, for all you did to preserve the bright canopy over him/her, still he/she died. It is easier, in the first months, to find yourself guilty of some sin of omission or commission than to know how helpless you truly are. Guilt feelings come with any death; people blame themselves by saying, “I should have said this,” or “I ought to have been there.” Guilt and anger often feed off each other. Parents may become angry at the child for dying, and later feel guilty for having felt that way. The cycle of anger and guilt must be broken before healing can take place. This is especially important because guilt destroys self-esteem, relationships, motivation, and for some, the will to live. To break the cycle during a period of guilt, a parent can see a grief counselor or a member of the clergy, who may make it easier for him/her to forgive him/herself. During a period of anger, aggression therapy is an option. This treatment helps individuals understand why they are angry and how to vent those feelings without doing harm.

It is now well recognized that psychological growth and development continue throughout our life times. We bring to each new crisis the unresolved conflicts and the emotional baggage from our past. But each new crisis involves the reopening of a book, so to speak, and the chapter endings can be rewritten. When considering the feeling states of grieving, especially the feeling state of anger, logic and reason are irrelevant. Where is the logic behind cursing a rug that one has just tripped on? What is the purpose of kicking a flat tire? What good does it do to admonish anyone after they have already done the wrong thing? Expressing simple anger clears the way to getting on with the task at hand. Expressing anger opens the way to address the meaning of justice (though enacting angry behavior sidetracks the parent from the task at hand). While there is no logic; there is purpose and function to the expression of angry feelings. As events occur that violate one’s sense of justice, the outrage must be expressed. Those expressions help to redefine one’s concept of fairness and justice. The parent of an impaired child separates from dreams that were shattered by impairment through grieving. Denial, anxiety, fear, depression, guilt and anger all emerges. If they are shared with other people there feelings help parents grow and benefit from what might be the worst tragedy of their lives. Grief must be shared deeply and fully until the underlying issues are revealed. The reopening of these issues changes the parent’s world view. New perceptions of themselves and their world serve as a solid foundation for coping with the disability and for personal growth. Yielding to the grieving process help parents find the inner strengths and external support needed to face

265 profound loss: to mobilize and focus the energies needed to change their lives: to reattach to new dreams and loves in spite of feeling abandoned and vulnerable: to redefine their criteria for competence, capability, value and potency: to reassess their sense of significance, responsibility and impact upon the world around them: and to develop new beliefs about the universal justice system that makes the world a tolerable place to live, even though terrible losses can occur. The culturally rejected feeling states of denial, anxiety, fear, depression, guilt, and anger may be used in surprisingly positive ways when the feelings are fully shared.

Yearning or searching for the lost person – as the initial shock subsides and the survivor begins to grasp reality, many psychologists have remarked that survivors seek to retrieve or locate the dead person. This searching phase may involve calling out to the deceased, even expecting a response. The bereaved may become preoccupied with thoughts of the loved one or repeatedly recall painful memories. Persistently hoping for the return of the deceased is a common feature of this searching phase. We search not only for the one who has died but also for the role in their absence. During this time, a grieving person may move as if on remote control, retaining the numbness of the initial shock. In the wake of death, survivors frequently feel lost themselves, “abandoned” by the deceased, and confused, insecure, fearful, and alone.

Disorientation and despair – As the bereaved begin to accept the fact that the deceased is never coming back, the pain of the loss can really hit hard. Increasing awareness can bring the release of any number of very powerful emotions – anguish, despair, depression, hopelessness, anger, and guilt. In many cases, the most powerful and prominent emotions will be anger and guilt. This is a normal reaction. Feeling that something has happened we may seek someone to blame. Anger can be directed at anyone. It may be directed at the deceased: you may feel he/she has abandoned you. But in all likelihood you will serve as the primary target of your own anger. Many people find it much easier to be angry with them than at others. In confronting the death of someone they loved, survivors sometimes reproach themselves for their failings in the relationship. You might have thoughts such as “I should have” done this, or “if only” I’d done that he/she would still be alive. This kind of second guessing guilt can become especially severe in circumstances such as accidental death or suicide. Guilt and self-blame are common reactions and can be the most difficult aspects of grief to overcome.

266 Adapting, acceptance and recovery – acceptance of loss comes slowly and inconsistently rather than all at once. The bereaved may feel better for a while and then very much worse. It takes time to accept the reality of the loss emotionally as well as intellectually. Depression and emotional swings may last as long as several years. A kind of recovery is achieved when the bereaved can finally think of the dead person without overwhelming sadness and invest energy in other thoughts and activities. As the new reality is acknowledged and assimilated, grief fades into treasured memories. Adapting to a death and being able to function in the world, eventually forming new bonds is the goal of the grief process. However, as the above pointed out, “A new identity and social role are achieved, but recovery is never complete”. Some effects last a lifetime, and waves of grief may return for many years on birthdays or the anniversary of the death. These phases, as defined by mental health professionals, are loose guidelines for discussing the nature of grief. Such a model may or may not describe your particular experience, but most people do find a way through the difficult early disorientation to some form of acceptance or adaptation. The way each of us responds to death depends on many factors, including age, gender, maturity, intelligence, cultural conditioning, and ethnic or religious influences. The manner in which someone dies also has a significant impact on the way in which survivors experience grief. Psychologists call this “the death surround”. Factors here include the location, the reason, and type of death, and the degree of preparation. Sudden or accidental death and suicide generally involve more bereavement complications than a death that has been long expected…

“You can’t prevent birds of sorrow from flying over your head – but you can prevent them from building their nests in your hair.”

Unfortunately, many parents who have lost children let their nests grow very large. Bereavement, to parents, is a shattering of their world, a violation of natural law: the parents have outlived their child. No longer will they be able to muse about the future of their progeny or wonder what color their grandchildren’s eyes will be. Walks in the park, first dates, and the shine of the child’s eyes when opening a birthday present – none of this will happen again. Never. Death will inevitably mean a change in life style for the parents, regardless of their age or the amount of time separated from the child. A great-grandmother in her eighties can grieve for her lost daughter with the same severity as can a young parent mourning the death of an infant. The change in life style can result in destruction of a parent’s previous relationships and further family crisis.

267 Drunkenness, separation, divorce, and social alienation are frequently the aftermath of a child’s death. A continuum of psychological and behavioral symptoms also follows in the wake of bereavement; they include somatic distress, such as diminished appetite, insomnia, and nausea; preoccupation with the image of the deceased; hostile reactions; loss of patterns of conduct; social alienation; and guilt, the most tormenting accompaniment of death. But why would parents implicate themselves in the death of their child? The answer is not simple; guilt is a complex phenomenon, involving hostility, powerlessness, and religion. In the psychological sense, an individual sense of badness or evil, with a fear or expectation of punishment, and it is experienced when one feels responsible, through action or inaction, for separation, stress, or disintegration. In grieving parents, this reaction is pathognomonic for their situation. They search the period of time before their child’s death for any small indication of failure to meet the child’s needs, accusing themselves for gross negligence and exaggerating any omission they might find in their care of their child. Frequently, they rationally conclude that some unrelated incident caused the fatal illness. Another manifestation of parental guilt uses God as a mediator; some parents consider that the child’s death is an act of retribution by God for some transgression that they feel they might have committed, from an infrequent church attendance record to marital infidelity. Self blame affords a handle with which bereaved parents can retain a grasp on their lives and that of their families. To the parent in grief, this lack of control is intolerable; powerlessness to protect offspring is contradictory to basic parental instincts. Religion offers the bereaved a means of adjustment to the stressful reality. Parents are thus relieved of the intolerable state of having no control over their families welfare. To many parents, religion is a source of comfort, something tangible to deal with and serves the purpose of providing a means of atoning for the guilt a parent feels. Acute grief can have strong manifestations. It may include shortness of breath and frequent signs, loss of appetite, and empty feelings in the abdomen, lack of strength and feelings of exhaustion, along with restlessness and aimless activity, a loss of warmth and detachment from other people, irritability, anger, and guilt. Most parents experience depression, as an expectable response to significant is appointment and loss - the loss of a dream. It is a psychological state marked by helplessness and loss of self-esteem.

Grief is intensely painful. But psychological distress that is experienced and mastered results in the growth necessary to deal effectively with life’s adversities and also to experience its joys. The lost dream can be transformed

268 into a new vision. I was taught that the way to deal with pain or adversity was to “tough it out”. If you could avoid showing the pain, then you had “beaten the rap” and dealt with the problem competently.

Parents, all parents attach to their children through dreams, fantasies, illusions, and projections into the future. Children are our second chance, our ultimate “life products”, the reflection and extension of our very being. To know that a human life exists that grows from our genes, our bodies that is a result of our existence, brings a measure of spirituality into the most hardened individual. Something basic to our sense of being is stirred when we witness the miracle of the continuity of life. What happens when the core experiences are marred irreversibly by disability? How does a parent survive the devastation of a handicap in their child that shatters their heartfelt dream? How do they go on?

How can they help their child, their other children, themselves? Parents attach to children through core-level dreams, fantasies, illusions and projections into the future. Disability dashes these cherished dreams. The impairment not the child irreversibly spoils a parent’s fundamental, heart felt yearning. Disability shatters the dreams, fantasies, illusions, and projections into the future that parents generate as part of their struggle to accomplish basic life missions. Parents of impaired children grieve for the loss of dreams that are key to the meaning of their existence, to their sense of being. Recovering from such a loss depends on one’s ability to separate from the lost dream, and to generate new, more attainable dreams.

As disability bluntly shatters the dreams, the parents face a complicated, draining, challenging, frightening, and consuming task. They must raise the child they have, while letting go of the child they dreamed of. They must go on with their lives, cope with their child as he or she is now. Let go of the lost dreams, and generate new dreams. To do all this, the parent must experience the process of grieving. Grieving is an unlearned, spontaneous, and self-sufficient process. It consists of states of feeling that provide the opportunity for self examination, leading to both internal and external change. The grieving states that facilitate separation from a lost dream are as follows: denial, anxiety, fear, guilt, depression and anger. The word “states” is used instead of “stages”, to emphasize grieving in not a step-by-step process that evolves through discrete stages. This depiction of what a parent goes through is a presentation of theory, not irrefutable fact. It is meant to help people find their own ways of dealing

269 with the unspeakable. I look at it as a map, not a recipe. A recipe tells people what to do if they desire a particular result. A map, on the other hand, is one person’s partial impression of reality that can be used by another to help them get to where they wish to go.

When theories of grieving are used as a recipe to produce acceptance, two false premises are inflicted on parents. The premise that grieving should move through a specific order is flatly inaccurate. A consistent pattern is not evident in people dealing with loss. Worse, when people believe that they are supposed to grieve in a certain way; they often end up thinking they are doing it wrong. Secondly, the concept of acceptance is totally unfounded. In almost thirty-five years of working with bereaved people, as well as dealing with my own losses, I have never seen anyone achieve acceptance of loss, only knowledgement. Belief in the concept of acceptance leads parents into feeling like failures for not being able to attain it. Any use of grieving theory as a recipe is strongly discouraged.

Though the feeling states of grieving do not adhere to any strict order, there is a loose pattern that can be detected. Denial is always first, but may remerge again and again, as often as the parent needs to experience it. Anxiety generally follows denial, but it can follow other feeling states as well. It is not uncommon for two or more feeling states to be experienced at the same time. Different families are more or less comfortable with showing certain feelings while discouraging others. In short, each person who goes through the grieving process experiences each of the feeling states, but does so in their own unique manner and order.

It is clear that this spontaneous, unlearned grieving process is central to the well being of the child and parent alike. It is the only way that one can separate from a lost, cherished dream. Many people do not make it. They have their dreams shattered by disability and collapse emotionally under the assault. Resisting the grieving process, they hold feelings in, blame self or others, become embittered, dependent, or even bizarre in their interactions. They can range from the selfless crusader to the deserter, from the alcoholic to the workaholic, from the outrageously high-strung to the person who barely moves or talks. However they manifest their stuckness, these are the people who have become worse, not better, in response to loss. These are the people who could not or would not experience the feelings of grieving. Many of them resisted the process because the subculture (their family, neighbors, church,

270 schools, and friends) sent out a consistent message: the feelings of grieving are not acceptable! Others floundered because they were stuck emotionally before they had their impaired child. Regardless of background, people become worse if they resist experiencing and sharing the spontaneous feelings of grieving. Each feeling state, no matter how negative, serves a specific and helpful function. To separate from a lost dream, one must experience and share denial, anxiety, fear, guilt, depression, and anger in whatever order or manner the feelings surface.

Perhaps you can see now why I think that experiencing and sharing the pain is the solution, not the problem. Through my life I have experienced many losses. For many years I have dealt with these losses by stifling feelings, being a workaholic, toughing-it-out, and innumerable other ways that kept me from experiencing what had happened to me. I became one of the “walking wounded” that I was committed to helping. Ironically, it was not until I myself had a child with impairments that I began to take the advice that I had so freely given to other parents. I started to yield to the natural and necessary process of grieving like everyone else. I discovered that only now am I growing with the impact of the loss. I will continue to grieve and to grow as my child and I develop and experience new losses and new strengths. More general observation maintains that satisfaction with one’s accomplishments in life decreases the fear of death. Those “in love” with life are less afraid than those who simply live life without stopping to smell the flowers. The way in which people perceive themselves is definitely affected by their environment and ultimately reflected in their attitude toward the following: 1. The impact of religion on an individual is contradictory. Studies find that religion either increases or decreases the fear of death. 2. It appears the more strongly people believe in an afterlife, the smaller their death anxiety. Perhaps, this explains why Catholics, in general, fear death less than Protestants, who in turn fear it less than Jews.

Good Grief – when psychologists talk about “resolving grief as a goal of the bereavement process”, they are speaking of reaching a point where loss has been acknowledged and accepted and the survivor is able to function in the world. This is not easy if you have lost someone you love. Initially, you may have trouble getting through the day – or the night. Simply coping with the practical requirements of life may be a tremendous challenge. But eventually, if grief takes its course, you will be able to think of the deceased without crying or suffering

271 unduly, to express regrets without feeling guilt, and to love others without a fear that you are betraying the deceased. For many bereaved people, being able to remember the deceased without falling apart provides the first big sign that they are beginning to move through the process. Other signs include being able to forget the deceased for a while without feeling guilty, being able to enjoy yourself without feeling guilty, looking forward to the future, and seeing the death in perspective. In the case of the death of a spouse or partner, forming new friendships signals a turning point in recovery. Although this goal may seem impossible or even undesirable when you first begin to grieve, new friendships do signal a willingness to resume life without the deceased. Successfully working through grief does not mean that you forget the deceased or that you stop missing him or her. It does mean that you can live your life in spite of your loss.

Making Decisions Your child’s death disables you psychologically and simultaneously confronts you with tasks and decisions and demands for action. What is to be done with the body? What kind of funeral do you want? When? Where? How will you let people know? If your child died violently, police want to talk to you. Right behind the police come the reporters, print and television, which will insist you talk to them. What to do with his/her clothes, his/her possessions, and his/her room? You are blind with pain and you cannot even breathe. You do not know how you will get from now until lunchtime. How can you deal with all this? Well, you can’t. And you shouldn’t. You need a triage. In a hospital emergency room the triage officer is the physician or nurse who looks at every patient coming in and sorts out who needs what, by urgency. You need someone you trust, who knows you well, to help you triage. Together, you sort all these demands with a simple triage system of four D’s: Delegate, Defer, Decline and Decide. Every question, every request for a decision, every demand for action should be triaged by 4-D.  Is this something I can delegate? You do not have to do everything yourself. Times like this are what friends and family are for. Someone you trust, who knows you well, can shoulder many pieces of the load.  Is this something I can defer? Other people’s senses of urgency should not be your obligation. Many things can wait. Many should wait. Especially about your child’s clothes and possessions, you need to allow yourself time.  Is this a request I would rather decline? Some things you must do, by law and by dictates of religious practice. Beyond these, there is very little that you are required to do. If you do not want to talk to the media or support a cause, you

272  Is this something I must decide or want to decide? For some issues the answer to this question will be yes. Here is where you focus your efforts. Let the people who care about you deal with the rest.

Practical Matters After you have delegated, deferred, and declined, in the midst of your grief you still face some decisions that only you, as parents, can make. Chief among these are decisions about your other children and about a funeral. You know your family and your particular needs, and you alone can decide what will work best. The ideas that follow reflect what other parents and brothers and sisters have said about their experiences. Brothers and sisters say that no matter their age, no matter how awful the death, they want to know what has happened. They desperately need their parents to talk straight to them. They want to be with their parents. Being sent away does not feel like protection; it feels like being shut out of their own family. Their own parents even in shock or in tears, are far more comfort than anybody else. Almost always they want to attend their sibling’s funeral. Always they want to have that choice. Even toddlers who barely understand what death means know that something terrible has happened. They need to be with their parents. You may need help in caring for your young children, and you may need to have them away from you for some periods. But siblings need to know that even when things are bad, especially when things are bad, they are still part of their family. Your decisions about funerals will be shaped by your religious convictions and your own experience with funerals. For many parents, planning their child’s funeral, deciding about music and readings and who would speak, became the first counter-measure they could take against their helplessness. A funeral or memorial service allows other people a chance to show you that they care.

How long does this go on? How long will acute grief last? It will last as long as you need to get through the first coming to terms with your loss. For many losses, a six to eight week period of acute grief is expectable. For the loss of your child, this is grossly inadequate. Your timetable must be your own. How long your acute grief lasts will have to do with the facts of your child’s death, your relationship with your child, the quality and strength of your other relationships, your own life history – especially your prior experience of loss - and the circumstances of your current life. Many parents remember some shift in their grieving at around four to six months. Most parents describe a gradual change, and this is in fact how most people experience the change in their grief. Acute grief,

273 with its intense, unrelenting pain and its losses of function, slowly begins to ebb.

Although the pain is still the center of your days, you find that you are given respites: first minutes, then hours when you can breathe, and think, and focus on other pieces of your life. The dark time is a long way from over. You still live with pain so intense it blots out the sun. Your body still aches and the problems with thinking and memory come back again and again. Where your child was, where your life was. There is a bombed-out crater. You do not know how you will live, and some days you cannot think why you would want to. But a day comes when you notice that the breeze feels cool on your face. Or you smell the pavement after a rain. Your own capacity for response surprises you. It is like opening the door to a room in your house that has been shut for so long that you would have forgotten what was in it. You do not know yet how you will live with your loss. But for the first time you believe that you will. Acute grief begins to recede, and the long haul of mourning has begun.

Put parents in touch with community resources. A large number of counselors and support groups specialize in family bereavement. Even if your facility offers such services, you might still explore local resources by contacting hospices, churches, and other hospitals. That way you can offer parents as many choices as possible. Compassionate Friends is one national support group with many local chapters. Before making a referral, check the local group who offer these programs and ask about their qualifications. Find out if they are certified by the American Academy of Bereavement or the Association for Death Education and Counseling – two reputable national organizations.

Keep in mind, though, that families cope with bereavement, in many different ways. By putting parents in touch with resources and teaching them about the grieving process, you can help the family through this time of crisis. But never judge how a family chooses to mourn.

Growing through Grief has a two fold interpretation: growing out of grief and growing because of grief. Each is important and each has an important place in this article. Growing through grief takes time - more time than the average person realizes.

To the grieving person Your whole world has come crashing down. The one you loved so very much is gone. Whenever you lose a dream, in the form of a loved one, there is always a lot of pain and usually a lot of change. It can produce a ton of bitterness, agony, and sometimes bring

274 about illness. But if you can get the support of others who have gone through, or are going through the same loss and learn from them, we can change that bitterness and that illness into growth and healing.

There are some serious results of unresolved grief. People who will not permit themselves to grieve run the risk of physical and emotional problems in the near future. Retaining the stress of unresolved grief seems to affect a person’s immune system in that it does not seem to function properly. The grieving person may find themselves hospitalized or worse. There is an alarming rate of high incidents of second deaths. There is also a noticeably high occurrence of divorce among those having a child or parent die and not resolving the death together – or not fully understanding the grief of their mate. Until the grieving process is fully gone through, it will be extremely difficult to resolve later losses. No two people grieve alike and so it is very difficult to say that you should be at a certain point of grief at a certain time. Keeping in mind that everyone grieves differently there are some feelings you can look for:  Disbelief – will probably be your first overwhelming feeling  Denial  Anger – is the result of unfulfilled expectations and may be one of the more prominent of the feelings you have in your grieving.  Confusion – the simplest task seems difficult to accomplish  Lack of concentration  Loss of memory  Emptiness and loneliness – these will probably be the strongest and will usually last the longer than any of the other feelings you will have. They may never fully leave you, but please believe me; they will definitely diminish over time.  Cheated and deprived – of something you cherished  Jealousy – that your friends still have their mates or children  Hallucinations – you may see the face of your departed spouse or child in a crowd. A person may speak and you will be sure it is the voice of your loved one or child. You might have dreams or even nightmares about your loved one. It may not seem like it at all at the time, but even these things are normal during the grieving period.  Insomnia – may be a major problem you face  Restless and fidgety  Lethargy – where you do not feel like doing anything  Poor appetite – one of the most common  Personal hygiene – may suffer  Sore, tired muscles – for apparently no reason

275  Lack of saliva  Lump in your throat  Pressure in your chest  Fear and despair – how can I face the future when the one I was going to face it with is gone?  Guilt – if only I had done things differently, they might still be here  Despondency  Disloyalty  Crying spells  Sighing  Talk about the one who died – strong urges  No desire whatsoever to talk of them – because it hurts too much

All of these feelings are normal during the grieving period. Allow them to happen – do not try to block them out. You may feel that because of them you are losing your mind, but you are not. You are healing.

Helpful things for you to do  Get more rest and sleep  Go gently, do not rush around  Go ahead and cry – it is cleansing  Tell yourself, “It is okay to allow others to support and comfort me” you do not always have to be strong  Turn your regrets into happy memories  Invite a friend or friends to dinner  Be open to new people, new ideas, places and experiences  Develop new interests  Do something for someone else  Get daily exercise – walking, biking, or swimming  Eat good nutritious meals  Do not make any hasty important decisions

Some Grief Relief Goals 1. Believe and accept that the person is really gone. You may believe your loved one is gone but still not accept the fact. Until you accept that the relationship is over, you will not be able to go any further in your grief relief. Denial in the early stages of grieving, is normal and healthy. To deny that the person has died in these early stages becomes sort of a self-defense mechanism. It only becomes detrimental

276 when we deny it for a long period of time, and this is usually the result of a poor support group. 2. Be willing to experience the pain. Most people have the mistaken idea that allowing themselves to experience the pain will cause the pain to get worse. This is NOT TRUE! As you allow the pain to happen, the pain begins to mellow. In an effort to avoid this pain; some people will try to run away. a. We may try to occupy our time by keeping busy, busy, busy. Well-meaning friends and relatives will “help” in this effort by getting us involved in doing “things”. This only lengthens the healing time. b. We sometimes try to escape our pain by fantasizing. To “see” the face of our loved one in a crowd or to “hear” their voice as someone else speaks is a fairly common occurrence among the grieving. Going out to look for that person in the hope of finding them still alive is a fantasy that will only delay the healing process. c. Some of us will try to run away from our pain by assuming dangerous and risky tasks. One friend, following a divorce, took up mountain climbing and sky diving…a rather extreme means of avoiding emotional pain. She has emotionally matured and physically survived to remarry and leave the risk activities to a younger generation. 3. We need to adjust to the environment in which we once lived with the person who is now gone. This could well be the most difficult of these goals to accomplish. How can someone who has been married to the same person for over a quarter century suddenly adjust to them being gone. How can a parent suddenly adjust to going to that child’s bedroom and be overwhelmed with the realization that their child will never be coming back? How can they be suddenly adjusted to any great loss? Well, it cannot be done suddenly but it can be done. 4. We must withdraw the emotional energy we have invested in the relationship and re-invest it in other relationships. For most, this is the long-range goal. The withdrawal of emotional energy is the simple part; but reinvesting it? Well, not for awhile, thank you. However, this re-investment of emotional energy does not.

You Can Go On You can shed tears that they’re gone, OR, you can smile because they’ve lived.

You can close your eyes and pray they’ll come back, OR, you can open your eyes and see all they’ve left you.

277 Your heart can be empty because you can’t see them, OR, your heart can be full of the love they’ve shared.

You can turn your back on tomorrow and live yesterday, OR, you can be happy for tomorrow because of yesterday.

You can remember them and only that they’re gone, OR, you can cherish their memory and let it live on.

You can cry and close your mind,

Be empty and turn your back, OR, you can do what they would want; Smile, Open your eyes, Love and go on.

Author Unknown

Ask any parent who has lost a child, and he or she will tell you that it is the ultimate pain. Dealing with the numbness and shock, followed by the anger and guilt, the loneliness, the loss of future plans and dreams, overwhelming sadness and heartache, torment, the bereaved parent. Coping and surviving after the death of a child is a never ending struggle. You are always missing their smiles, their voice, their laughter, their hugs, and their special ways; the little idiosyncrasies that make each child uniquely their own. Unfortunately the road through the Valley of the Shadow is a long one with no shortcuts. The most important thing for bereaved parents to know is that their children will always be theirs, that they will never be forgotten.

Questions for Life-Review in Reflection. You can use these lists to adapt to almost any age. Take the time to fill in the blanks. It is a fun thing to do!

Firsts My first car… My first job… My first day of school… My first success… My first failure… My first best friend…

278 My first kiss… My first trip… My first major illness… My first memory… My first time away from home…

Favorites My very favorite things to do… My very favorite place… My favorite hobbies… My favorite sports… My favorite foods… My favorite movies… My favorite books… My favorite TV shows… My favorite actors/celebrities… My favorite songs… My favorite people… My favorite colors… My favorite time of day… My favorite day of the week… My favorite season… My favorite year… Family My mother… My father… My siblings… My grandparents… Mother’s family was… Father’s family was… A favorite birthday celebration … When I was little, we celebrated major holidays by… My ancestry and ethnic heritage… Our family’s religious traditions were… A question I have about my family is… The major values my parents tried to instill in me were… When my spouse and I met… I decided to get married because…

279 Our wedding was… After my spouse and I had been married about ten years, I… Some of the major tests of our marriage have been… When I had my first, second, third etc. child, I… When I was a young mother/father, I…. On Holidays and birthdays, we used to… When the kids were little, I was really scared when… Some funny or special stories about my children are… Something about parenthood that has surprised me is… Being a parent during the sixties, fifties, thirties, eighties, etc. was… When my kids were teenagers, I thought… When I became a grandparent I… The way I feel today about my marriage is… The major values I’ve tried to instill in my children are…

Growing Up My hometown… Growing up in (place) was… Being born in the twenties, thirties, fifties, seventies, etc. meant that…. The house/s where I grew up was (were)… Our neighborhood was… When I was growing up, girls and woman were… When I was growing up, men and boys were… As a child, some traditions that were always in place were… On weekends we usually… My earliest ambitions were… Some childhood heroes were… A secret place I had as a child was… When I was little, I always dreamed that one day… My parents usually disciplined me by… I got in lots of trouble when… My memories of my early school days are… My favorite subjects in school were… A favorite teacher was… When I was little, something that really scared me was… My favorite things to do as a kid were… When I was a teenager, I used to… The “fashions of the day” when I was young were…

280 When I was in college, I … Some of my romantic interests have been… Smells that remind me of my earlier years are… Places I associate with my growing up are… The special pets I remember are… My best friends from elementary school were… My best friends from high school were… A childhood vacation I remember is… A major embarrassing moment from childhood was… A hard lesson I learned as a kid was… A regret about my early years is… When I was young, my family never knew I… The people who helped me most when I was a young adult were… When I was little, older people always said that I would… When I was growing up, I always excelled at… One of my fondest memories of childhood is….

Who am I? Five adjectives that describe me are… Other people would describe me as… Friends who have known me for years say… The issues and causes that get me stirred up are… As I have grown older, I have changed in that… If I could have a perfect week, it would be… The way I prefer to dress is… The way I look has changed over the years in that… My voice… In a group I usually… Things I find funny… If I could have anything in the world, it would be… If I could give any one thing in the world to any person in the world, I would give (thing) to (person) because… Spiritually, I think of myself as… The most important values I hold dear are… If I could give one thing to the world, I would give … If I could give one lesson for my children, it would be…

281 The passing of a dear one often leaves us wondering “why, God, why?” If we knew that death is the beginning of a new mystery, a new adventure to unfold, we would feel joy for those who leave this earth and joy for those yet to leave.

Our society instills in us the belief that death is the end that is to be dreaded. God tells us this is not true. He never promised that while on earth we would have a rose garden, but He has promised that our greatest blessings will come after we die..

Just because God’s way of helping us is different than we hoped or expected, it does not mean he is indifferent to our cries for help. We must believe that he knows what is truly best for us and is actively doing what is best for us.

Dealing With Your Own Grief As a bereaved parent, you may experience physical symptoms of grief. You may find that you are very tired and want to sleep all of the time, or that you cannot sleep at all. You may lose your appetite and may not feel like looking after yourself, or you may become irritable. Doctors sometimes suggest medications to help you cope; discuss the pros and cons thoroughly with your doctor before going ahead. If mediation numbs the pain too much, you may find your grief much harder to deal with at a later stage. Some parents feel that they want to escape the death. To deny the reality of the death, they escape through the use of sedatives, alcohol, or other drugs. Some parents choose to move immediately after the death or to give away all of the child’s possessions, so that they are not reminded of their child. These are not solutions and are often regretted. You cannot escape grief. It is normal and healthy, and you must experience it to heal. Grief is an expression of one’s love, and to grieve is to have loved. Try to face each day and make decisions as they arise. However, try to avoid making any major decisions too quickly after the death of your child. The shock experienced after the death of your child may last from several weeks to several months. Several months after your child’s death you may find that the pain becomes even more intense. Deep feelings of loneliness may encompass you, as the rest of the world appears to go on with living and you feel left alone with your pain. These feelings of emptiness maybe more intense if you were used to spending large amounts of time caring for your child, and were doing so over a long period of time. This is because your way of life is gone as well as your child, and you have a larger void to fill. If you spent many years caring for your sick or disabled child, you may feel a sense of relief or thankfulness that your child’s suffering is over. Along with these feelings you may also feel gilt. All of these feelings are normal and are experienced by many parents.

The Long Haul of Mourning

282 Holding on and letting go To move toward a life in the present requires you to find ways both to hold on to your child and to let him/her go. It is a long haul because getting it through your head and your heart that your child is no longer here is such a huge and awful task that is cannot be accomplished quickly. It is slow work, accomplished a day at a time. It is painful work because it is facing the reminders of his/her absence that drives your work. Reminders of him/her are everywhere. 1. Your child’s room and possessions – practical questions force the issue. What will you do with his/her room and his/her things? What will you keep that reminds you of your child? How will you use his/her room or his/her space? How soon will you move to sort out his/her things and decide what to do with them? If space is tight in your house, the question of what to do with your child’s room will come up sooner. No single approach works for all families. Your family may do better keeping everything just as it is, untouched, for months. Or it may feel right to give away things slowly, as you feel ready. What helps, parents say, is to open these questions to everyone in your family, from toddler to parent. When all of you talk together about what to do, you may find significant differences among family members about timing and what feels comfortable. It will probably take more than one round of talking to get everyone’s wishes and feelings heard. Decisions may not be unanimous. Like most matters in families, parents’ views will probably carry more weight than children’s. But the experience that each family member’s feelings and wishes were invited, were listened to respectfully by everyone else, and were considered in arriving at a decision helps everyone’s grieving. Every member of your family faces the task of sorting out what he/she can hold onto of your child and what he/she must let go. Your child’s clothes and books, sports equipment, games, tapes, things he/she made, Trophies, prizes and souvenirs, photographs of him/her – anything that was his/hers – have the potential of helping the people who loved he/she come to terms with their loss. His/her friends will also welcome things that belonged to him/her. The feelings are in the details – feelings are lodged in the details and the daily routines of our lives. You can talk about large, abstract topics such as loss and parenting and grieving and not feel a thing. But talk about when you were folding a load of clothes and there were your son/daughter’s jeans, and your jeans, and your feelings well up. Sorting through your child’s possessions is the kind of practical task that brings up feelings, requires you to think about what has happened. Folding his/her jeans, stacking his/her tapes, you are reminded again and again of what will never be. In the face of these hands-on reminders, the most tenacious denial gives way. Sometimes, months after the rest of your family is ready to go ahead, you or your partner refuse to allow any change in your child’s room. You may refuse because you

283 cannot bear to face his/her sneakers in the closet or the scrunchies on her bureau that tell you how things are now. If you are refusing to allow change in your child’s room is part of a larger refusal, or inability, to deal with the new reality, then you have cause for concern. 3. Holidays and anniversaries – holidays and anniversaries sharpen our vision of our families, focusing our awareness of what we have together. As we go about our familiar observances and rituals, we contrast what we do this year with what we have done in past years. Doing what we have done before reassures us in our own eyes, confirms that we are still here. When you have lost a child, you with a terrible acuteness of all that you have lost. You remember how he/she made the apple pie last year, with only a little help from you; how he/she practiced so he/she could ask the four questions at Passover. The calendar is relentless. Christmas shows up every December 25 no matter what you feel like. So do Passover and Thanksgiving and Ramadan, and so does your child’s birthday. What will you do on his/her birthday? What will you do this Christmas? There are no packaged answers; your family and your loss are unique, and only you can work out the solution that fits. What helps the most is for parents and children to talk together and listen to each other: what you are feeling, what you want to do. As parents, you acknowledge that things are painfully different this year, and because of that you all need to think and talk together about what you want do. The first year, the first time through each holiday without your child, is the worst. You are in a place you have never been and never wanted to be. Reminders of your child crop up constantly; his/her favorite foods, the placement he/she wove, and the rituals he/she loved, the presents you would have bought him/her. Over and over you stumble into things that remind you of your loss. Know that the first time will be hard, and awkward, keep your expectations low.

Blindside Reminders – a term for the unexpected, unforeseeable event that seizes you unaware and floods you with memories. Sometimes the trigger is clear: a child who looks like yours or a song on the radio that you always associated with him/her. Sometimes you cannot explain why the way the grass lies flattened after a rain or the display of hand tools in the hardware store window crushes your chest and leaves you gasping. You feel exposed; you do not know how to protect yourself from these unbidden memories. Every parent will tell you it has happened to him/her. Over time, the blindsides seem to come less often. Most parents find that by the third or fourth year, as they are rebuilding their lives, the blindsides have subsided. It is not simply the passage of time that makes the blindsides happen less. Your efforts to rebuild your life are what make the difference. The blindside reminders arise from your own awareness of the huge hole that the loss of your child has left and how helpless you

284 feel. Whatever you do to feel less helpless works towards rebuilding your life. Everything you do toward rebuilding your life reduces your sense of helplessness. As you rebuild, the blindsides happen less often. You will never recover the easy comfort that was there before the canopy fell down. But you can get to a place where your memories come more often when you want them to and less often when you do not.

Holding your child in your mind Although your child has died, he/she stays intensely alive in your mind. Part of what makes grieving such a long and painful haul is this jarring discordance. In your mind he/she is a vital presence, and you love him/her more than ever. Yet every day a hundred things remind you that he/she is not here. How to make sense of these two? How can you possibly sweep up the heart and put love away? From your experience of other losses. you know that the person you loved stays forever with you but slowly recedes from center stage. As time passes, you find ways to hold on to what you loved best about the person, notice the ways in which he/she has become a part of you. As these shifts occur; you gradually recover your capacity to invest in relationships, to allow another person onto center stage. The way your child stays with you, woven through your thoughts and your imaginings, marks the loss of a child as different from any other loss. Resolving your grief and moving toward healing will take longer than with any other loss. Your child was so much a part of you – all that he/she inherited of looks and temperament, all your hopes and plans for him/her, all the hours and nights of care taking, all your pride in what he/she had done and what he/she would become – that losing him/her has meant losing a large piece of you. You will find ways to keep your child. You will find ways to keep the parts of you that have wrapped themselves around him/her. He/she will grow up in your mind. You will see who he/she would have become. You will sense his/her presence, find him/her in your dreams, and talk to him/her. In your mind you will fashion a bright room where all that you loved of him/her still lives, where all that was good about him/her can become a part of you. Slowly, as you are ready to have it happen, you will move him/her from center stage. But he/she will never be unseen. You will have him/her for all of your life. 1. Talking about your child – more than anything else, what helps you hold your child in your mind is talking about him/her; with your partner, with your other children, with your family and friends who knew him/her, and if your child was older, with him/her own friends. 2. Talking with your family – the people you live with, who know you best and knew your child best, are the people who most need to talk with. Like you, they also hold your child in their minds, and like you, they are groping their way toward what they can

285 keep of him/her and what they must let go. Even though you all feel depleted and helpless, you have within you the capacity to help each other hold on to the child you have lost. You do not have it every day or all the time. Remember that living in a family is a percentage game. You do not have to bat a thousand to make it works. If you muff an opportunity – and given how you are feeling, you are bound to muff some – a dozen more will present themselves. The talking that helps the most will probably. – come out of your daily routines and the reminders they bring.

How Groups Help Groups for parents can make all the difference. As you live with your pain, you realize that very few people in your life can understand the magnitude of your loss. A child’s death is such a profound loss, one that so disrupts and changes your life, that the people who can best understand what has happened to you are other parents who also have lost a child. Another bereaved parent understands how much you need to talk about your child, how you need to remember him/her aloud with people who care about you.

Another bereaved parent knows how much pain you feel and understands why you cannot stop remembering. Another bereaved parent does not require any explanations. Groups for parents are usually one of two kinds. Bereavement groups, run by a hospital, mental health clinic, a church, or a hospice, are led by a professional or by a volunteer trained in bereavement work. Usually they are open: bereaved parents can come or not as they wish and attend for as long as they want. A call to a local hospice or mental health association can help you get connected. Self help groups are run by members, with the assumption that bereaved parents can help others most knowledgeably. They are open meetings, usually once or twice a month, with parents serving as leaders and policy makers for the group. Sometimes there will be a speaker or a specific topic; usually there is opportunity for parents to talk and remember their child with others who know their needs Compassionate Friends is the largest and best-known self-help group for parents who have lost a child. It was started in 1969. They began their work to establish an organization, which could offer understanding, friendship, support and care to other bereaved parents. The National headquarters is in Oak Brook IL – 708-990-0010. Volunteers staff the phones and can help you get in touch with a chapter nearest to you.

Suspended in Pain: Barriers to Grieving and Their Resolution Your child’s death plunges you into a wilderness of pain. No matter how much help and

286 support you have, you must find your own way through your private wilderness. The path you make will have false starts and trials that lead nowhere. For most parents, some combination of their own efforts and the passage of more time than they imagined enables them to build a path that leads toward a life they can live. As excruciating as your loss has been, as derailed as your life has felt, you find your way through. Grieving and healing are natural parts of the human endowment. But about a third of parents lose their way. Temporarily or permanently, they get lost in their private wilderness. They despair of ever finding a path or they cease to believe that there can be a life for them beyond their loss. Their lives narrow down to the compass of their loss. In many respects, their lives stop. This condition is called unresolved grief. For people stuck in unresolved grief, and for their partners and children, who need them, it is if when the child died, a great part of them died too. 1. Unresolved grief – as you grieve for your child, you will find it helpful to know something of unresolved grief: what it looks and feels like, what kinds of life experiences and personality structures put people more at risk for it, and what you can do if you see signs of it in yourself or your partner. Unresolved grief takes several recognizable forms: chronic grief – the inability to give up the child; delayed grief – in which life events claim a person’s energy and attention and interfere with efforts to grieve; distorted grief – characterized by the person’s focusing so intensely on anger or guilt that he or she cannot deal with other necessary aspects of grieving; and somatized grief – in which grief gets expressed chiefly through physical symptoms. 2. Interferences with Grieving – what factors influence our capacity to grieve and to heal? Why do some people experience more difficulty than others in dealing with grief? Which personality traits and life experiences combine to enable one person to grieve? Which other traits cause people to bog down? Psychological researchers have identified a number of factors that may interfere with grieving.  A previous history of significant losses, especially losses in childhood  Severe stressors in your current life  Drug or alcohol abuse  Negative or otherwise unsupportive responses to your loss from family and friends  A stormy, highly ambivalent relationship with your child  Personality traits that make it difficult for you to trust other people

The experiences of parents to be described illustrate how each of these factors can have a powerful impact on their efforts to grieve. a. Previous losses – people who lost a parent or a sibling in childhood and have

287 been unable to grieve their earlier loss often feel fragile or depleted. Their new loss sets off resonances of the earlier pain, and they cannot bear to feel it all. b. Severe stressors – stressors that will not resolve with time (such as disabling chronic illness, living with a substance-abusing partner) require so much energy just for survival that there may not be enough left over for grieving. 1. Substance abuse – use of drugs, including alcohol and some prescription medications, disables the brain. The work of grieving demands the full use of your thoughts and feelings. Grieving requires you to examine your life and the place your child occupied in it. Healing asks you to build a life that no longer holds your child. Even with a fully functioning brain, these are hard tasks. For a disabled brain, they are impossible. As long as you are using chemicals to anesthetize yourself, you are sentencing yourself to unresolved grief. If you want to heal from your loss, your first job must be to get clean and sober. It will not be easy. As you stop using, your grief will flood you. The temptation to turn back to your old anesthesia will be intense. Living with your grief will be intertwined with the work of maintaining sobriety – two very demanding tasks. 2. Negative response from family and friends – a painful loss leaves a person more needful of family and friends’ support and vulnerable to their disapproval. If the price of staying close is suppressing your grief, you may not be in a position to object. 3. A highly ambivalent relationship with your child – not all children are easy to raise, and no parent-child relationship is without mixed feelings of love and anger, devotion and resentment. When the mix of feelings between you and your child has been particularly stormy and intense, you will experience more difficulty in your grieving. 4. Personality traits that interfere with trust – although each person grieves in his or her unique way, all of us share this human commonality: To heal and rebuild we need the help of other people. To bear the intense pain and disorientation of acute grief you need people to help you with the mechanics of your life, buffer you from the world, listen to your story, appreciate the depth of your pain, and assure that you are not going crazy. To rebuild your life you need people who understand the magnitude of your loss and the size of the job you face, who respect your journey, no matter how halting or detoured. If you find yourself generally suspicious of other people’s motives or feel that they are likely to rip you off, you know how difficult it can be for you to ask for help or to accept

288 it. If much of your life you have been angry with others, wanting to punish them, this attitude can interfere with building the relationships you need to heal. If you always feel someone else is to blame when things go wrong, you risk staying stuck in blaming. 5. The replacement child – another kind of interference with grieving that some parents experience is the phenomenon of the replacement child. This situation comes about when, after the loss of a child, for whatever reasons one parent or both cannot adequately grieve. Instead, they unconsciously designate another child as the dead child’s replacement. The replacement child may be a living sibling, usually of the same sex, or it can be a baby conceived and born, or adopted, soon after the loss. The psychological hazards are considerable, both to the replacement child and the parents. The child is assigned a task he/she cannot possibly perform: he/she must replace the dead child and make up that loss to his/her parents. His/her task is further complicated by the fact that nothing of this expectation is stated explicitly. All that the child knows is that whatever he/she is, and whatever he/she does, it is not what his/her parents want. Worse, his/her parents do not seem to see or value what he/she himself/herself is – his/her particular looks and tastes and abilities. They may even resent the ways in which he/she is himself/herself, because those ways remind them that he/she is not his/her dead sibling. A replacement child is a strategy of desperation. Not only does the strategy fail, but also parents who create a replacement child compound their loss. In addition to their loss of the original child, they deprive themselves of their other child, whose unique qualities they cannot enjoy. As a parent you should be aware that your other children may very consciously and actively try to fill the place of the sibling they have lost. The impulse is a normal one arising from their awareness of your suffering and their wish to offer themselves as consolation. A sibling may take on characteristics of the child that you especially valued, for example, interest in a particular sport or academic subject, religious commitment or politeness. You can recognize with your child his/her effort to console you, and appreciate it. You can also reassure him/her that you love and value him/her for himself/herself. Usually the child is relieved to know that you understand what he/she has been doing, and is also enormously reassured in knowing that you do not need this sacrifice from you.

289 Bad Grief In some cases, the process or grief goes awry along the way. 1. Absence of grief – an apparent absence of the symptoms of grief does not usually indicate that the mourner does not feel the loss, only that he/she has delayed any reaction. Although sometimes due to the prolongation of the shock or denial reaction, absence of grief can be an act of will. The apparent lack – which prohibits resolution – may yield to either prolonged or distorted forms of mourning. Psychologists point out that people may actively prevent themselves from grieving for any number of reasons. They may have a pronounced fear of losing control of themselves or their grief. This anxiety often stems from cultural conditioning that depicts the uncontrolled expression of emotion as “weak”. Bereaved people might also stop themselves from grieving for fear that reviewing the relationship would unearth guilt or anger – feelings regarded as unacceptable toward a dead loved one. Finally, if the relationship was not recognized by the larger society, the bereaved might not feel “allowed” to mourn over it. 2. Excessive grief – involves an unconscious unwillingness to let the deceased go. Months and even years can elapse following the death of a loved one, but excessive grievers may still maintain the characteristics of a recent bereavement. They may refuse to form new relationships. Chronic mourners cling to the deceased, almost as if they were keeping the dead alive through their prolonged grief. Some may fear that to overcome the loss would somehow betray a tacit pact with the deceased never to live a life separate from him or her. They cling to the pain of loss because it is all they have left of the loved one. Certain types of death seem to demand protracted periods of grief in order to adapt to the loss. The death of a child generally requires a longer period of bereavement than the death of an aged parent. Similarly, it usually takes longer to move toward acceptance of a sudden and unexpected death – especially a suicide – than it does to grieve over a death that follows an extended terminal illness. However, if symptoms appropriate in acute grief persist too long without changing, it can be a sign that the survivor needs professional help in coming to terms with the loss. 3. Distorted Grief – manifests itself primarily through self-destructive acts, obsessive thoughts of self-destruction, or extreme mental or emotional aberrations. Prolonged inattention to basic survival needs, such as eating and sleeping, or social needs, such as friendships and social activities, are symptomatic of distorted grief.

290 Indicators of Unresolved Grief - Not functioning well is a hallmark of acute grief. We have seen that during this phase people experience major disruptions of their usual mental processes; major lapses in thought processes, extremes of denial, even hallucinations are more often the rule than the exception. And given the extreme stress of losing a child, acute grief may last for many months. Timing, then, is a critical part of assessing whether you or someone you love is experiencing unresolved grief. You should be very sure that acute grief, with its hellish unpredictability’s of feeling, has begun to subside, that what you are looking at are recurrent, pervasive states. Personal style will determine how you look at symptoms. What is extreme and characteristic behavior for one can be well within the limits of normalcy for another. Social and cultural context – how people of your ethnic and religious background generally react – also shapes our determinations of normal and appropriate behavior. With these caveats in mind, we can look at behaviors that may be indicative of unresolved grief. 1. Wooden and formal behavior that masks intense feelings of anger. 2. Development of physical symptoms that your child experienced in illness. 3. Furious hostility toward specific persons connected with your child’s death. 4. Chronic guilt and lowered self-esteem. 5. A feeling that the loss took place yesterday, even though it occurred months or years ago. 6. Loss of patterns of social interaction, interruption of friendships and formerly valued social activities. 7. Searching that continues over time, with a great time of apparently purposeless behavior, restlessness, moving around. 8. Panic attacks, physical expressions of fear – such as shortness of breath and choking sensations. 9. Avoidance of customary mourning rituals (funerals, visits to the grave, etc). 10. A relatively minor event triggering a major grief reaction. 11. Self-destructive and self-punishing behavior. 12. Radical changes in lifestyle.

Many of these symptoms occur during the phase of acute grief. If one or more persist for more than six months past acute grief, with no signs of change or improvement, then you may be looking at unresolved grief. The “signs of change or improvement” is an important part of your assessment. People heal in their own ways, on their own timetables. The rate of change is not so important; you can be moving very slowly, but as long as you see indicators that you are moving, then you

291 can trust your own process. When you see no movement – when, your life has stopped – then you have cause for concern.

A word about time Time enjoys a reputation for being a great healer. There is the temptation, when you are stuck in your grief, to tell yourself and the people who love you that you simply need more time. Time is certainly a great ally in healing. But there is no magic in tearing pages off the calendar; the simple passage of time itself heals nothing. If you cannot get yourself unstuck, time alone will not heal you.

Getting Help for Unresolved Grief When you have decided that you have a problem with your grief, you have taken an essential first step in resolving it. No matter what anyone else thinks or says, nothing changes until you decide for yourself that something must be done. What must be done? You need to talk with a mental health professional. If that idea sets your teeth on edge, or insults you, or scares you, please read on. Consulting with a psychotherapist does not mean you are crazy or seriously disturbed. You are probably not. It means that a normal process, grieving, has gotten derailed, and you need some help getting it back on track. Most of the time your heart functions normally. But if it does not get enough oxygen, or if it stops beating, or beats too fast, you do not try and fix it yourself. You go get some expert help from people who have studied how hearts work. Trying to fix unresolved grief without help is as sensible, and about as effective, as trying to treat your own heart attack by yourself. There are some kinds of problems that you simply cannot solve without the help of other people. 1. How does Psychotherapy Help? Although therapeutic approaches will vary, any effective psychotherapy for unresolved grief will offer a therapeutic relationship, identification of barrier to grieving, support as you move through the grief process, and help in reconnecting with family. Let’s look at each in turn. Your relationship with your therapist offers you an arena in which you feel safe and empathetically understood. Although an empathetic hearing does not fix everything, without it, not much gets done. It is important to identify the barriers to grieving, those elements in your own life history and personality that are Families Speak. As you look for these barriers with your psychotherapist, you are likely to learn a great deal about yourself and your family. As you come to understand what has interfered with your grieving, your therapist will help you find ways to move beyond the interference. The therapist offers support and reassurance as you move through the work of grieving. Once the interferences

292 are dealt with, your grief wells up by itself, and grieving takes its natural course. He or she also helps you reconnect with the rest of your family. If your partner and other children have dealt with their own feelings your being stuck in your grief has opened up a chasm between you and them. Explaining the importance of exploring the bereaved parent’s own family history, especially the family’s losses and how they dealt with them. People are cut off from any awareness that (how a family deals with) loss is patterned from generation to generation. Getting the history, and showing it to them in a genogram (a diagram that shows marriages, divorces, births and deaths over several generations) can be a terrific tool to help people understand what has happened. There is a powerful intrapsychic dimension to grief. But you do not resolve grief only from within, particularly with the loss of a child. A child does not die in a vacuum. He/she has all those connections with extended family, school and the community. As a person becomes able to grieve within, he/she needs to reconnect to his/her family, and the world that knew the child. Helping rebuild those connections is an essential part of the therapeutic process. Psychological help for grieving works like a catalyst in a chemical reaction. Without a catalyst, certain reactions simply will not start. Other reactions may start but will proceed very slowly. A catalyst enables a reaction to start and helps reactions keep going at a faster rate than they would without it. If you or someone you love has been stuck in unresolved, interminable grief for a child, you should consider a psychological catalyst. a. What to look for in a psychotherapist – two issues are of utmost importance – competence and a good fit. In treatment for unresolved grief over a child, competence is especially important. If you are considering a therapist, ask about his or her training and experience with grieving parents. Grief for a child is a unique grief, and its course is different from that of other griefs. You need to be sure that your therapist is knowledgeable in this area. A good fit means that you feel comfortable with the therapist: that you feel he or she is respectful, attuned to your feelings, and equipped to understand your situation. The things you will be talking about are not easy. Comfortable does not mean any discomfort; on the contrary, it implies that this is someone you can trust when the going gets painful. It is an intuitive judgment; only you can decide whether you can work with this person. It may take more than one session to arrive at your judgment, but by the end of two or three sessions you should know whether this will work or not. If you feel it will not, cut your losses and look for someone else. b. How long will it take? – length of treatment is difficult to predict. Two of the factors we have discussed are the most important influences on how long

293 therapy will take and what the outcome will be: life events and family patterns that interfere with grieving, and your own motivation and staying power. Once the patterns have been identified and the person starts to grieve, you usually see real change in three to four months. Your experience may be longer or shorter, depending on what work you have to do. A shorter treatment course does not imply greater psychological health, nor does a longer course imply more problems. As I have said of so many aspects of grief, each person’s experience is unique. You must respect your own timetable. If you are mired in grief that you cannot resolve, you have a choice to make. You can stay where you are, with its known pain and familiar constrictions. Or you can seek help for yourself, with the uncertainty that change inevitably brings. If you seek to change, you cannot predict where your life will go. The only certainty you can count on is that if you do not look for help, you will continue to feel the way you do now.. c. The Roles of the Health Care Professionals – in the hope that care for the dying child will change and home care will be used successfully, the role of health care professionals must also change. Pivotal in its success is acceptance of the concept of terminal care by the health care staff. This may be especially hard for the pediatrician, who probably had very little training in dealing with the death of a patient. The overall rate of pediatric mortality has been decreasing, but there still has been as increasing number of pediatric cases involved with chronic illness, which can be expected to be terminal. Thus, the necessity for this type of training exists. In view of this, the health care team, and in particular the physician is still not receiving the proper orientation to work with the dying child. Most physicians receive the greatest amount of gratification from treatment success, their achievements being measured by the rehabilitation and restoration of the patients’ health. When confronted with the dying patient, the physician may believe he or she has little to offer and may become unavailable for continuous treatment. The matter is even worse when the physician continues to treat the child until the last minute of life, believing that everything should be done medically until the time of death. Last minute heroics usually are not what are called for. Rather, the health care staff, as well as the family, should be concerned with making sure the child is comfortable when dying. Extremely important in achieving this goal is proper management of pain medication for the dying child. There is no reason why any child, especially the terminally ill child, should be in pain. No effective medication should be withheld. Often both the physician and nurse need to be reminded and supported in this regard, though they may hesitate to deviate

294 from the standard dose and its usual applications. To be able to institute successful pain control at home, the physician needs to allow the nurse and family flexibility in pain management. This can be done by prescribing a wide range of doses. c. What about medication? More often than not, when you see persistent, unresolved grief, you will also see a significant depression. We used to believe that antidepressants would interfere with the grieving process. The thinking on that has changed. For many people, antidepressant medication enables them to keep going in their life while they do their grieving. The appropriate antidepressant in the correct dosage is likely to lessen symptoms of fatigue, give people more energy, allow them to sleep better, improve their ability to concentrate, and reduce their sense of emotional vulnerability. People suffering from depression usually welcome these changes.

Terminally ill children and their families need long term support – physically, socially, psychologically and spiritually. More home care and hospice programs need to become available and accessible to dying children and their families. . Although some people may still look upon home care for the dying child with pessimism, there are appreciable benefits. The family and child who decide on home care seem to be better adjusted to the child’s fate. These psychological and social benefits stem from the environment of love and security that the home provides. By providing these comforts, it helps promote the honesty and openness that is truly needed by the dying child. At home, the child gets the attention and love that is so often lacking in the hospital. The family’s desires to actively participate in the care of their child are also better fulfilled. And all these advantages – improved satisfaction with the environment and the health care delivered – are available at a reduced financial cost.

There is no easy way for a child to die, no circumstances of death that diminish the pain of parents and siblings feel. Each child’s death is unique, an incalculable loss to the family. Each family’s efforts to heal are theirs alone. How your child died will shape the way you experience your loss. If you received a diagnosis of a life- threatening condition or a terminal illness, perhaps that was the worst moment,. You had some time to prepare yourselves: weeks or months, perhaps years. You learned to live on hope. You learned to value each day with your child. Perhaps you thought about what mattered most in your lives. You probably shifted your priorities. You watched as the disease stalked your child, spread its reach across

295 his/her life. You saw it claim his/her strength, trample his/her future. You saw your hopes soar, then stumble, and then die.

Changes for the whole family – the shift toward fighting the illness brings about striking changes in the lives of everyone: parents, the diagnosed child, and siblings. The family’s focus shifts from the future to the present. 1. Focus on the present. 2. Changes in your priorities – you come to value your child more deeply. 3. Including your other children – his/her illness and his/her needs becomes the center of your family’s concern. 4. Losing ground. 5. Your child’s maturation – knowledge of their illness affects children deeply. Although they maintain hope and denial, at some level most children recognize that they will die. Usually they know it and face it long before their parents do. Your child may begin to show a degree of maturity, of understanding that far exceeds his chronological age. 6. Remissions – the life expectancies for many illnesses have lengthened significantly. New drugs and aggressive treatments bring remissions; buy precious months, even years. 7. Relapses – a relapse forces you to look at the future you dread. The talk shifts to bringing your child home, helping him/her be as comfortable as possible. It is the end of hope and the beginning of grieving. 8. Anticipatory grieving – when hope has run out, when you know it is no longer if, but when, you can begin to grieve. Parents who saw the end before it happened say that time to grieve in advance was helpful for them. When their child actually died, they had already faced the worst. They were more able to help their child let go.

What helps – parents who nursed a child through a terminal illness are very clear about what helped them. They speak of friends who saw them through, medical personnel who treated them as partners, hospice care that enabled their child to stay at home, and support groups where they could connect with other parents. Mothers whose lives had been centered on their child’s care offer some thoughtful advice for the months after your child dies. 1. Family, Friends and Community – parents marvel at the depth and the breadth of support they found. They found it only when they could ask for it. Friends help too simply by listening. The strains of caring wear so hard on you and your partner that, much as you would wish, often you cannot be there for each other.

296 Again and again, parents say that it was friends they turned to for support. 2. Medical Personnel – a nurse who explains the procedure and tells you what you can expect; a doctor who treats you like an intelligent equal, who takes the time to explain and to answer your questions – these are the people who parents appreciate. They value the people who saw their children as individuals, not just small bodies with a disease. The ones that seemed to help the most were the ones that seemed to understand how frightening a hospital can be and how helpless parents feel. 3. Hospice Care – which enables terminally ill people to be cared for at home in the final stages of their illness? Parents whose children used hospice care have high praise for the arrangement and for the caregivers. 4. Support Groups – many parents call support groups their lifeline. Support groups offer a place where you can bring your questions and your fears. No matter what you are feeling, no explanations are necessary, everyone has been there. When parents have a child with a life-threatening disease, they feel so helpless, and impotent. In a support group, they find that they can genuinely help each other, sometimes by what they know about the illness, but mostly by listening and caring. They come away knowing that they’ve helped, and they feel more capable and hopeful. That’s powerful stuff. 5. The Hole in your days – days are long, especially for Mom’s who have usually cared for their child physically. Do they go back to work, or find a job?

Helplessness and Responses The two most painful conditions that all human beings must bear are loss and helplessness. Your child’s death floods your family with both in overwhelming doses. Your actions and responses include the following: 1. The if-only – every parent speaks of their if-only thoughts, the intensely painful, obsessive ruminations about their child’s death that preoccupy and torment them. If only I had done this or If only I had done that seems worse the first few weeks and months. 2. I’m to Blame – related to if-only, only more corrosive, is self blame. Self blame is another fantasy about control, one that exacts a terrible price for its illusory comfort. The price is this: If you believe you caused you child’s death, then you must punish yourself endlessly. Self-blame is a life-sentence, with no expiration date. Tethered to your sin like an ox to a yoke, you tread your guilt to an endless circle. You get nowhere, resolve nothing, and only deepen your track. The way out requires that you find a way to bear the helplessness that comes with being human. Contradictory as it sounds, frightening as it feels, we

297 can move forward from our losses only when we can live with our helplessness. Surviving children are vulnerable to another variety of self-blame. Children of five or younger tend to see their world in highly egocentric terms. That is, all events revolve around them, and they are the cause of all things. This way of experiencing events arises both from the immaturity of their thought processes and from their extremely limited life experience. At five, the ability to reality-test – to check assumptions against the observable facts – is not yet firmly established. Preschoolers will remember their thoughtless remarks about their brother or sister (“I wish he/she’d never come back”), and assume that they caused the sibling’s death. Their self-blame will be silent, and unless an adult intervenes, it can stay with them indefinitely. Although as they grow older, children have more experience with cause-and-effect relationship and greater ability to reality-test their assumptions, they are still likely to believe their thoughts or words caused a siblings death. Their own guilt and confusion and their awareness of their parents’ pain may combine to silence them, preventing their beliefs from ever being aired. Children need help from their parents in sorting out their beliefs about a sibling’s death. Without help, they are likely to impose needless guilt and pain on themselves. 3. What happened? The Search for Facts - needing to know exactly why your child stopped breathing is very important for parents. 4. Why has this happened? The search for understanding – it may take months or even years to understand why certain things happen, but eventually you will see and understand, yes, indeed, you now see and can deal with your feelings and can put them in their proper perspective. 5. Taking Action – some parents have gotten legislation changed, etc. and MADD – Mothers Against Drunk Drivers developed from a drunken driver who killed a teenager.

Resolutions: What Hinders, What Helps Something each parent will need to figure out in their own life. Even as each person’s grief is unique, so is each person’s resolution. Some of the ways that other people have coped may seem foreign, or idiosyncratic, useful for them but not likely to be a good fit with your own life. Yet, as you read, you will find that some of what these others have learned and practiced will be familiar because you have found a similar solution. Some of their approaches will be new to you, perhaps something you will want to try. No matter the age of their child or the nature of his/her death, parents who felt they were healing focused on three principles: allow yourself to feel what you feel, trust your own timetable for healing, and connect with other

298 people.

One gift, above all others God gives to us to treasure One that knows no time, no place And one gold cannot measure.

The precious, poignant, tender gift Of Memory – that will keep Our dear ones ever in our hearts Although God gives them sleep.

It brings back long remembered things A song, a word, a smile And our world’s a better place - - - because We had them for a while!

Jessie H. Fairweather

Getting through it: The First Year 1. Believe that you will not always feel like this - your pain is so intense, so overwhelming, that it becomes impossible to believe that you could ever feel any other way. Each person’s pain takes its own course. But when yours feels endless, and more than you can bear, it many help to remind yourself that there will be a time when you will not feel the way you do now. 2. Connect with other people. – losing a child is too much to face alone. Much of your grieving may be silent, inward, solitary, you will contend with many aspects of your loss alone. But the strength to keep going, to believe that keeping going is worth it, comes from your connections with other people. Other people’s taking care of you, their understanding of your pain, and their belief that you can rebuild are the crossbeams that bear you up. The people you need may be someone from your immediate family, an old friend, someone you hardly know, someone from Compassionate Friends, or other parents who have lost a child many times are those with the greatest help because they can understand as no one else can. They know what that first year was like. 3. Assume that you will have to educate other people. – others fear you are not ready to talk yet.

299 4. Keep the Lines of Communication Open with Your Partner and Other Children – It may be very hard but it is very important to keep talking and keep listening to each other. Your children especially need the lines open with you. With a younger child you are likely to be more likely to be more active in helping him/her grieve; maintaining a receptiveness so that he/she feels it is safe to speak, answering questions and clarifying what happened. 5. Allow all your feelings to emerge – allow my feelings to emerge, you may say, I cannot shut them up. Of course your sadness and sense of loss and your outrage are there in full force. But a loss of this magnitude cuts so wide and deep across your life that it evokes a whole kaleidoscope of feelings, some of them much harder to acknowledge. Envy, anger, and thoughts of suicide, of revenge: some of these less comfortable feelings will likely be part of your grief. They also need to be heard and accepted. When you push them out of your thoughts, they do not go away. Left in the dark, these feelings fester, and grow stronger. If you allow yourself to feel them, and voice them to an accepting listener, they tend to lose their awful power. They shrink to manageable, forgivable size, and they come less often. 6. Realize that you cannot always help your partner or your children – your pain is so intense in these first few months that it disables you. Many days it will be all you can do to get dressed and go through the motions of your day. As much as you love your other children and your partner, as much as you want to help them, there will be times when you simply have nothing to give. When you cannot function at the level you usually expect of yourself, it hurts. It is easy to fall into scolding yourself, feeling inadequate. The fact is that for now you are inadequate. You may need to remind yourself that if you would have suffered a physical injury as severe as your emotional wound, you would have been in the ICU (Intensive Care Unit). You would not expect a person in intensive care to be fully himself/herself or particularly available to the rest of the family. You expect an ICU patient to accept his/her limitations, not push himself/herself, and give his/her body a chance to heal. Your injury is severe and pervasive. You will need to lower your expectations of yourself. You must give your heart time and opportunity to heal. 7. Expect an emotional roller coaster – grieving your loss, you will see your feelings swing widely. One moment you are composed and objective; the next, you are helplessly awash. Worse, you cannot see it coming. Memories blindside you. This unpredictability of your feelings is for most people one of the most painful aspects of grieving. It makes you feel unreliable to yourself, even crazy. All bets off. All your former assumptions about your life and your future are now up for reevaluation. You feel as if you cannot count on anything and you cannot count on

300 yourself. We do not appreciate how much stability our assumptions provide us – I will go back to work when the kids are in school, we will buy a bigger house in a few years, and we will stay in this neighborhood because the boys have so many friends to play with – until they get knocked out from under us. You will build new plans for your life and a new set of assumptions. Your feelings will recover their stability. The blindsides will come less often. But for now, the roller coaster swings and plunges will be part of your life. 8. Take control of yourself physically – a growing body of research now documents the ways in which stress, particularly loss, depletes the immune system. You are fragile now and more vulnerable to illness and accidents. Aching from your loss, you need to be kind to your body. Nothing fancy – just the basics of good care. Get enough sleep. Allow yourself to take naps. In the first months, a day is an awfully long stretch of time to get through without a break. Eat enough, and eat healthful foods. You may not feel much like eating, and even less like shopping and cooking. Do it anyway. Getting back to your familiar routines will bring comfort and a measure of predictability that you sorely need. Exercise. Again, nothing fancy. Take walks. Physical activity gets you out of the house, gets you thinking different thoughts, and moves you, however briefly, beyond the compass of your loss. At first it will be hard. Much of what we do to care for ourselves does not come easily. For now, nothing you will do will come easily. Do it anyway. Go through the motions. In time your activity will give you release, even pleasure. 9. Set aside time each day to remember your child – it may sound unnecessary, when your mind is flooded with his/her memory. But when you go back to work or have other things to do, by setting aside time or like an appointment, you know that special time will be there every day where your thoughts can be alone with your child. Parents who learn this technique usually find it helpful. As with all the recommendations that other parents offer, only you can judge whether it works for you. 10. Feel free to get a mental health checkup – grieving is a normal process – disorienting, excruciatingly painful, more protracted than people expect, but normal. But because grief is so all consuming and so disruptive of their usual thought processes, many people believe that they are going crazy. Talking over your reactions with a mental health professional may provide you the reassurance that you are well within normal limits. 11. Offer yourself some pleasures – your child’s death destroys so much of your life that the idea of pleasure is, for some time, simply beyond imagining. You cannot understand how people smile, go to the movies, take vacations. Yet there comes a point when you want and need some relief from your pain. Grieving is such hard

301 work that you must have some time off. The first time you go back to anything that once gave you pleasure; you may feel unsure or disloyal. Eating chocolate, going swimming, visiting with friends, watching a movie, making love – whatever you do feels different now. You will need to give your pleasures, and yourself, more than one chance. Remember that when you carry such a heavy load you must rest from time to time. If you do not insist on some pleasures for yourself, you will not be able to carry your load. 12. Seek spiritual support – whether you actively practice your faith or have had nothing to do with it since childhood, you may turn to it now. For some parents, the idea of a God who permits children to die raises more questions than faith can answer. You must decide for yourself whether a spiritual connection will help you in your grieving. 13. Expect setbacks and detours – the path through your grief will be anything but straight. That is not a reflection on your capacities; it is simply the nature of human grieving. It tends to take its own time, always longer than we expect. It sets its own course, filled with switchbacks and loops. Too often the metaphors for grieving sound like a kind of psychological trash collection: you are told to “get it all out” as if your heart were a grocery sack you could turn upside down and empty. It is probably closer to how our feelings work to liken our grieving to tracing out the roots of a large tree. You follow one root as far as you can take it; then you must find your way to another root and follow that one wherever it goes. As you come toward the end of a root or a piece to remembering, you will feel a sense of peace, some lessening of the chronic ache. Then comes the first Christmas without her, or Mother’s Day, or simply a song she liked on the radio, and you feel again the way you felt in the first weeks. All the ground you have gained, the composure you have painfully constructed are washed away in the painful swell of memory. In fact, you do not lose ground. The progress you have made is still there, hidden for a while in the rush of feelings. 14. Expect anniversary reactions – are the upsurges of memory and grief that occur on your child’s birthday, the anniversary of his/her death, and whatever other dates carry a special significance for you. As you live with your loss, you will get a sense of the dates and anniversaries that stir up feelings. It will help your other children for you to explain the anniversary phenomenon to them. The anniversaries they feel may be different from yours. It will help all of you to let one another know when you are having a particularly bad time with missing the child. 15. Respect the rhythm of your own grieving – part of grief is periods of fallow: time when you do not think much, or feel much, when your grieving feels suspended. In tracing out the roots of a tree, there are times when you have worked your way out

302 one root, and do not yet see where the next one lies. These times of blankness are as much a part of grief’s rhythm as the painful times. A field left fallow for a season recovers its richness. The next year its crop grows more abundantly. People also need fallow times. We push ourselves too fast at our own peril. These are the fruits of other parents’ first years without their child. They offer their wisdom generously, with an understanding of your loss and in the hope that their expression might help ease someone else’s first year.

By the anniversary of your child’s death, you have learned more than you ever cared to know about pain and you own capacity to bear it. Perhaps you see some lifting of your sorrow, perhaps not. A year is a natural unit of time, a full cycle of the seasons. Yet it carries no built-in guarantee of completion. You may still feel some of the upheaval and severe disorganization of acute grief. You may still be groping for ways to stay in touch with the rest of the family, or may not yet have found ways to care for yourself. The flow and timing of your grief will be your own. The passing of a year to the date of your child’s death need not, should not, impose requirements on your healing. Rather, you can use the anniversary as a point from which to look back and to look forward. 1. The rest of your life – your child has been dead a year and your own life has been changed forever. This much you know. What you cannot know yet is the full shape and scope of the changes you will make as you build your life beyond this year. Some thoughts that you think about usually after the first year has ended: a. A deepening realization of the finality of your loss. b. Rethinking your life, reworking your self. c. What matters: changes in your values. d. Internal strains. e. Changes and stress in your relationship with your partner – what’s gotten into you? f. How much of your life will you allow your anger to claim? g. Deciding how you will live. h. You are still your child’s parent. i. Making memorials.

As you look back at the years since your child died, and forward toward the rest of your lives, you will never get over a loss like this. Instead, you find ways to live your life despite it. You continue to hold your child in your mind. You find people you can talk to about your child. You work at keeping the lines of communication

303 open with your partner and your other children. You put your energy into what is important, and you let the rest go. You make a decision that you will let yourself feel whatever you feel and deal with it as it comes. You get through the bad days because you have learned that they do end. The pain overwhelms you, but then it recedes. You are stronger than you ever thought, stronger than you ever wanted to be. You never forget what you lost. You learn to value what you have.

How Can Someone Find Help While it is true that grief is a normal response to loss, it may be that today it is more difficult to cope with that response on our own. Often we do not have the support of a large, extended family or of ritualized customs that maintain us throughout a lengthy mourning period. And while the psychopathic condition of Negrophobia (an abnormal fear of death) would not be ascribed to most “normal “people, we do, as a society, suffer from a cultural or mass Negrophobia. It adversely affects us all by creating a general environment in which a positive death experience is very difficult to achieve and grief is an embarrassment. If we never allow ourselves to think about death, we do not know how to deal with bereavement. Most people need support during mourning, often beyond that available from family and friends. Psychotherapy, counseling, or other professional help can provide that support. Bereavement counseling is becoming more specialized as mental health professionals develop a better understanding of how to assist with the grief process. In looking for a good clinician, you should try to find one of these specialists, someone who works specifically with grief and who has experience with the type of bereavement you are dealing with (anticipated, sudden or violent, suicide, etc.). Another resource is a self-help support group. Filling the void left by the vanishing extended family, peer support groups have developed to address many specialized needs, from widows and widowers to families of suicide victims. Since members of these groups have gone through similar experiences, they can often provide advice or support in a more informed manner than could a relative or friend. Chances are a self-help group exists nearby that can help with the particular circumstances of your bereavement.

Cope with death by openly grieving – experience the pain of grief. Part of coming to grips with the reality of death is experiencing the emotional and physical pain caused by the loss. Many people in the denial stage of grieving attempt to avoid pain by choosing to reject the emotions and feelings they are experiencing. Some do this by avoiding places and circumstances that remind them of the deceased. I know of one widow who quit playing golf and stopped eating at a particular

304 restaurant because they were activities that she had enjoyed with her husband. Another widow found it extremely painful to be with her dead husband’s twin, even though he and her sister-in-law were her most supportive friends. The problem with the avoidance strategy is that it is impossible to escape the pain associated with mourning. Sooner or later, some of those who avoid all conscious grieving break down – usually with some form of depression. Tears can afford cleansing for wounds created by loss, and fully experiencing the pain ultimately provides wonderful relief to those who suffer, while eliminating long-term chronic grief.

Different Cultural Responses to Death Death is an event occurring in all societies, yet it evokes an incredible variety of responses. At the moment of death, survivors in some societies remain rather calm, others cry, while others mutilate their own bodies. Some societies officially mourn for months, yet others complete the ritual within hours. Family involvement in preparation of the corpse for the funeral ritual exists in many societies, while others call professional funeral directors to handle the job.

Marital issues “We wanted to help each other, and we finally had to realize that we grieved on such different timetables, and in such different ways, that most of the time we had to turn to other people.” 1. Your loss hits you both simultaneously – usually partners do help each other with losses, whether it is your wife’s family or your husband’s family; but when you lose a child, however, you both suffer the same profound loss at the same time. Acute grief disables you both. Although your particular styles of response are different (one of you may be numb and one of you frantic), you are both undone. Grief cuts you off at the knees, drains and depletes you. You have nothing inside, nothing to give. At the same time, you desperately need your partner to help you. 2. You lost the same child, but your loss is unique – each of you had a unique relationship with your child. He had a special importance in your heart. Because he had become a part of your self, you lost not only a child but also a piece of yourself. He was equally a part of your partner’s self, and your partner has also lost a piece of himself. Your loss is as profound as your partner’s, but what each of you has lost is unique to you. It does not mean that one of you felt closer to your child than the other or that one of you had an angry or an estranged relationship with him. Anger, distance, and ambivalence – none makes your partner’s loss any less. A more conflicted relationship tends

305 to leave you with even more pain and a harder job of coming to terms with your loss. The difference in what each of you did as a parent also affect how you feel your loss. The difference will be sharpest when you have a stillbirth or lose a newborn. Because mothers are physically so involved – the baby is still within you, or newly separated but still nursing, intimately with you – you feel your attachment to him/her and your loss in a more total and physical way. As a father you did not love your baby less, but you could not know him/her as intimately as your wife did. Aching arms, the persistent pain in the arms that many mothers experience for months after the baby’s death reflects the physicalness of their involvement with their child. For many fathers, the sharpest pain comes from the fact that they could not protect their child. Although mothers and fathers both share the commitment to protect their child, men have been taught that keeping their family safe is the first and most important task. Never mind that so many children’s deaths are simply not preventable; who can stop cancer or sudden infant death syndrome, and who could get every drunken driver off the road? When your child has died, as a father you feel the particular shame and helplessness that comes when you cannot do what you believe it is your job to do. 3. You and Your Partner Will Grieve Differently How each of you deals with your grief, and what you need and expect from your partner, will be shaped by a number of factors, including gender, the family you grew up in, what other losses you have been dealt in your life, and what else is going on in your life. As we look at each of these, perhaps your differences with your partner will begin to make more sense.

End of Life Issues – Women If a woman tells you that her husband’s behavior seems cold and uncaring, point out that he may be trying to “be strong” for her. Encourage both partners to discuss their concerns openly with each other. Women deal with feelings more directly than men - most women have been raised to believe that relationships are the framework of heir lives. Maintaining those relationships then becomes their obligation and commitment. To honor this commitment, it is essential to be attuned to feelings – your own, and those of the people around you. To perform the continuing work of maintenance that relationships require, it helps to be able to talk about feelings, and to listen to others talk about theirs. Women talk about their feelings far more than men do. They are often more comfortable than men are about revealing what and how they feel. For many more women than men, revealing that they feel scared or sad or inadequate is a statement of fact; it is

306 not an admission of failure. Asking for support is a practical response, not a defeat. When your partner, seems not to notice what you feel, when he does not speak his feelings, much less ask for help, it is easy to believe he does not feel. It takes self-restraint and patience – as usual, requires the most at times when you have the least – to consider the other possibility: that he is behaving the way he feels he is expected to, every bit as much as you are.

Grieving and Sex – you and your partner are likely to be in different places on the subject of sex. Women tend to experience sexual desire arising out of their feelings toward their partner and how things are going in their relationship. To feel like having sex, a woman needs to feel fairly comfortable with her own body and with her partner. She also needs to feel some freedom to set aside the concerns of the day and what is on her mind. Grief interferes with all of these conditions.

Grief leaves many women sexually numbed, uninterested and unable to respond. Even when the capacity to respond sexually starts to return, women are more likely to feel reluctant to have sex. You may feel as if having sex, having pleasure, means your child’s death matters less. If you lose yourself in the experience or have pleasure, you may feel you have somehow let go of your child. You are right. Enjoying yourself sexually does require a letting go, a temporary setting aside of your grief. Your grief is a link to your child. By setting it aside you may feel that you are compounding your loss. Or you may be worried that you could get pregnant. Before, pregnancy was a happy outcome; now it looms as a reminder of your child’s death. Men more often see sex as a way to seek comfort and to lose themselves for a while from their pain. After a loss, men report a resurgence of sexual desire far sooner than women. A respite from grief and pain, sex also becomes a way to reconnect with their partner. Your partner’s refusal or lack of interest may leave you feeling hurt and even more alone. Men also may have difficulties in resuming sexual activity. The feelings of worthlessness and inadequacy that so frequently come with grief can make a man feel unable to function sexually. Or he may simply feel so depleted by his sadness that he loses interest. Sexual interest and desire will return. When, and how soon, will vary from one individual to another. Sex and getting back to it are issues that the two of you need to talk about. You need to hear out your partner’s feelings. Equally important, you need to tell your partner what you feel. There are no national standards on what people in your situation should do. What matters is that each of you talks and each of you feels that you have been heard. You do not have to

307 understand why your partner feels as he or she does, but you need to respect his or her right to feel that way. A climate of mutual respect is the essential beginning from which you build a new sexual relationship that will work for both of you. What you do should reflect both of your wishes. One of you may end up waiting longer than you would like to while your partner sorts out her feelings. Or you may decide to have sex with your partner even though you do not feel one hundred percent ready or comfortable. Sometimes your partner’s stance that “We’ve got to start some time”: will make sense.

In many areas of your life together, such as socializing, family activities, holiday observances, one of you will be readier than the other. If your partner wants to do something and you feel unready, you may need to push yourself. There is a balance to be struck in your effort. Your child and your loss will always be with you. But giving up your life with your partner and the pleasures you have had together will not make your loss less. The balance has to do with holding on to your child yet finding a way to live your life, for yourself and with your partner. Your balance will not be arrived at quickly. Expect false starts and uncertainty. You need your partner’s patience and your own. Let your partner know what you are feeling.

Family Influences – One thing you can count on in this long haul is that your partner will not grieve the way you do. The family your partner grew up in, how that family dealt or did not deal with loss will influence how he/she grieves, or what he/she feels he/she should be doing. What feels like appropriate, “right” ways to grieve and what feels peculiar are shaped for each of us by our experience growing up: how our parents and other adults around us grieved and the models they offered us. All the patience and tact you can muster will serve you well here. The more you know about your partner’s family, what losses they have suffered and how they dealt with them, the more you can understand why your partner behaves the way he or she does. You do not have to agree with your partner’s way of handling feelings, but if you understand how he or she came to be that way, you are more able to allow the necessary latitude.

Earlier Losses – your child’s death sets off resonances of other significant losses in your life. If you have had many losses, especially when you were a child, you may well have unfinished business: unresolved feelings about your earlier losses that leave you with a residue of sadness and anger. Too many losses early in your life will leave you with fewer resiliencies with which to face this one. You may feel

308 overwhelmed. To understand what your partner is dealing with, it helps to know who else he or she has lost in life and how well he or she has been able to make peace with those earlier losses. If you do not know, ask her. Ask him. It may take a while for you to move beyond your own pain to the point that you can reflect on your partner’s experience. But when you can, the rewards for both of you can be considerable. Knowing more about your partner’s experience of loss will make him or her more intelligible to you. Your interest and concern are likely to make your partner feel more connected to you and cared about.

What else is going on in your life – your child’s life seizes your attention and blots out everything else in your life. Yet as the acute shock and disbelief begin to fade, everything else in your life will reassert a claim. How you grieve, or flee from grieving, and what you can offer your partner will be influenced by these other principles. Life’s timing is not always good. Sometimes it is downright rotten. A new baby or business problems or a thesis to finish or another family member’s medical emergency may demand your attention and energy. Sometimes one of you will be unable to grieve until you deal with something else. The other one may have to wait, feeling alone and very much out of sync. Sometimes when you and your partner are out of step, you need to leave her alone to work things out on her own.

Sometimes you need to nudge him gently and tactfully. Sometimes you need to speak and act forcefully. You are the only one who can decide what you need to do. Here are some approaches to your partner that other couples have said were helpful for them. 1. Let your partner know what you feel – you do not have to grieve exactly as your partner grieves. Your loss is yours alone, and no one can prescribe how you will feel or how you will express your grief. But if can find some words to let you and your partner know what you are feeling, he will feel less alone, and so will you. She cannot read your mind to know that you stay late at work because you cannot bear the heaviness in your house when you come home. She will take your absences to mean that your child did not matter that much to you and that she does not either. Especially at first, you may not have words or the ways to comfort her. You may not know what will help, or how to ask for it. But letting her know what you are feeling, even a sentence or two, begins to open a channel between you. 2. Give your partner room – there are limits to how much you can help your partner. You are limited by your own grief and depletion. You are limited by your

309 partner’s style of grieving, which will determine what she can accept from you. You are limited by the unavoidable and perverse fluctuations of mood that accompany every couple’s grieving: You feel better today, and he has in a blue funk; he’s got more energy, and you can barely drag yourself through dinner. You help each other when you can. This will not and should not become a permanent condition between the two of you. But for many couples, time alone and apart is necessary. You cannot get back together without it. 3. Seek sources of help other than your partner – especially early on, both of you are so overwhelmed that, much as you want to help each other, you simply do not have much to give. You want comfort and empathic concern from your partner; he may be in too much pain to give you anything. If you were both seriously injured in a car accident, neither would expect the other to be nurse and caregiver. Your emotional trauma has disabled you as extensively as physical trauma does. At times both of you will do better if you turn to others for some of the help you need. 4. Let your partner know what you need – what you need may be to get back to having dinner every night, or taking a vacation together, or having sex, or doing something about your child’s room, which has sat untouched, or being able to talk freely about your child. What you need may be more than your partner feels able to do. But she needs to know where you stand and what you want of her. If you tell her, she may or may not come through. Always, in relationships, you face these risks. Your asking may expose some painful areas between you, issues that were there before your child died.

Your telling your partner what you need of him will probably force both of you to look harder at your relationship. You both will need to make some changes. But if you do not speak up, you face a guarantee. If you do not make your needs known, you are guaranteed not to get them met. You can count on staying stuck in the painful status quo. Your child’s death forces your relationship to change. Neither of you is the same person you used to be, and your lives will never be the same. The relationship you used to have cannot stay the same either. The same loss that forces the need for change also renders you, for some time, unable to do much about it. Changes in how you are with each other evolve slowly, as you grieve and as you rebuild your life. When one or both of you founder in grief, you may begin to think of divorce. Getting away from your partner and your disappointments may feel like a way to get away from your pain. Couples who have come through their grief together and those who have divorced all offers the same counsel: take it slow. Grieving is a bad time to make major decisions.

310 Both of you are depleted, your relationship is in flux, and you cannot predict how you will feel a year from now. Give yourself time to heal, they say, and to see how each of you and the relationship evolves. Later on you may decide to divorce. If you do, you are likely to be glad you gave yourself time to make a careful decision.

When your partner’s reaction is destructive – people do not always handle their feelings in ways that are helpful to them. In the face of a loss as devastating as your child’s death, you will not always behave well. Tempers flare. Hard words and accusations fly. Judgment falters. You do unpredictable, erratic things. Over time, you will recover your self-control. Sometimes, though, you or your partner continues to deal with your grief in ways that are damaging to your relationship and to your whole family. One of you may blame the other for your child’s death. Or one of you may turn to alcohol or other chemicals to anesthetize your grief. Feeling uncared about and un-understood, one of you may have an affair. You may retreat into your work so much that your partner and your children lose you when they need you most. When your partner’s behavior undermines your relationship or threatens to damage his or her health, you must, for both your sakes, speak up. You need to tell your partner of your concern, plainly and clearly. Stay away from scolding, accusations, and threats; they only muddy the waters. As you talk with your partner, focus on what you need and where the limits of your own tolerance are. A single conversation does not guarantee that your partner will respond and change in the ways you want. But this approach offers you both an opportunity to begin to talk to each other. Whether your partner decides to change how he or she is dealing with the pain is up to your partner. You cannot make him or her change. What you can do is clarify in your own mind what you need and where your own limits are. As you sort these things out, you move toward a closer understanding of what your relationship with your partner needs to be. You may decide to consult a psychotherapist, someone who can help you look at what has happened to you and how it has changed you. You and your partner may want to work together with a psychotherapist, sorting out how you have changed and how each of you needs things to be between you now. The changes in your relationship after your child dies will affect not only the two of you, but your surviving children as well. Their capacity to deal with their loss will be shaped by the models you and your partner offers them, for living with loss and for building a relationship that supports a partner.

311 End of Life Issues – Men

How grief can shatter a family The death of a child often destroys a marital relationship too, and the parents separate or divorce. One reason marital tendencies worsen is that men and women typically assume different roles in the family.

The husband tends to see himself as the provider and protector. He may think he has failed in not preventing his child’s death somehow. The wife may have taken on the role of nurturer, as well as co-protector with her husband. The death of the child saps her ability to care for the other family members, emotionally and sometimes physically as well.

Differences in the way men and women communicate can also drive a wedge between parents. Since women often want to express their feelings, the wife may say something like “I really miss Tommy tonight.” Men tend to be more direct and factual, so the husband may respond with, “Tommy is dead”. “We have to accept that and get on with our lives”. The wife feels shut out, while the husband is upset by her sudden silence or anger.

Different coping mechanisms are another source of conflict. A man may hold back his tears and immerse himself in his work, while his wife may cry easily and often. Eventually, the husband may dread coming home because he will be confronted with his wife’s pain. He may throw himself into his job even more, leaving his mate feeling abandoned.

Sexual intimacy is easily affected by grief, too. Men will often seek a release from stress and tension in sex, while many grieving women become disinterested. This conflict can escalate into ugly recriminations and even violence if feelings are not expressed.

If a man confides to you that his wife has not been interested in sex since their child died, advise him not to view her behavior as rejection, but rather as her way of handling grief. If a woman tells you that her husband’s behavior seems cold and uncaring, point out that he may be trying to “be strong” for her. Encourage both partners to discuss their concerns openly with each other.

A How men deal with feelings – boys grow up with a different set of expectations from their parents than girls do, and how they handle their feelings is one of

312 the significant areas of difference. If your partner does not respond in the same way you do, it is for a good reason: he is doing what is expected of him. The comments that follow are generalizations, based on the ways that most boys and girls are raised and how they are taught to deal with feelings. They apply to many men, but not all. Some women will find themselves in this description as well. Most men were brought up to focus on tasks more than on feelings and relationships. Getting the job done is what counts, they have been taught. When that is what counts, attending to feelings, yours or someone else’s will be secondary, even a hindrance. Men have learned to suppress feelings, not express them. When your wife asks what you are feeling, and you are feeling, and you answer, “I don’t know,” it is probably an honest answer. The ability to know what you feel and to know how to put your feelings into words are acquired skills; you learn them only if you are encouraged to. If, on the contrary, when you were growing up feelings were a hindrance or a sign of weakness (“big boys don’t cry”) then you were less likely to pay attention to yours. Men learn much more about soldering on and much less about how to ask for support or how to give it. What your wife sees as an appropriate and helpful expression of feelings may look to you like a dangerous loss of control, prelude to a breakdown. If you asked for help the way she did, you would feel you were being weak.

The Statement of One Bereaved Father I did not choose to become bereaved. Painful as it is, I choose to allow grief to work progressively in me. I grieve because I love so much; my child died but my love for my child didn’t. Since I loved, and still love, very much, I expect my grief to be severe. I realize that each person grieves differently. I accept that my wife and children will grieve differently than I do. As a father and husband, I do have a responsibility to my children and my wife. I can best fulfill that responsibility if I grieve and allow them to grieve. Grief, while very real, is not rational I accept in others what appears irrational to me. I am a part of my family and of humanity. I accept the irrational in my thoughts and actions. Grief need not drive a wedge between my family and me. I choose to allow grief to strengthen my family ties. Unresolved grief continues to produce mental and physical symptoms. I must allow the grief process to proceed in me.

313 Crying is a part of grief and is therapeutic; it is not unmanly to cry. I must allow myself to cry, even openly. Grieving does not answer the question, “Why?” Since there is no acceptable answer, I must accept the unanswered question. My child was a person, is now a person and will be a person in the future. I can never forget my child. I cannot return to the normal that existed before my child’s death. I must go on to what is now to be normal for me. Getting on to a new normal does not mean forgetting my child. My child remains in my thinking and my talking now and will in the future. I cannot be grateful that my child died. I am grateful that my child lived and I choose to express that gratitude. I cannot forget the events surrounding the death of my child. I choose to recall the happy memories associated with my child. If I allow it to, by my grieving, time will produce a healing. I realize that healing does not mean forgetting my child. I could not control the past, which included the death of my child. I do have some control over the future as I build the future with my family. My child’s death did not happen so that I might become a better person. I choose to allow my child’s death and my grief to make me a better person. I did not understand before I joined the fellowship of the bereaved. I choose to become more understanding, tolerant, and compassionate now. My grief has created and brought out many emotional needs for me. I can help meet those needs by meeting the similar needs of others. My spiritual beliefs did not die with my child. I choose to use them to help me through these difficult years. Questioning those beliefs and values is not wrong. I must, as a result of my questionings, strengthen my belief system. I did not choose to become bereaved. I choose to allow good to come out of what is now so severe for me

Robert F. Gloor M.D. Cottondale, Alabama

A Father’s Tale Having a child is, without a doubt, a life-altering event. Suddenly your carefree days are over; responsibility for another life is a maturing experience. Responsibility for a child with special needs will “kick it up a notch” Along with the

314 added responsibility comes anxiety and stress. How we deal with the anxiety and stress determines what sort of “man” we will become. You will reach a fork in the road. Down one fork lies the easy way out – disengagement, withdrawal, and distance. Down the other fork is the experience – engagement, support, and intimacy.

A Thought For Today My Dad didn’t spoil me much; he had me earn my keep, I had to do my climbing, and most of it was steep. He taught me at an early age to earn what I received, To take without contributing was sinful, he believed. He taught me to hold up my end, He taught me how to take a chance and not cry if I lost, And when I made a bad mistake I had to bear the cost. I learned from him that credit was as sacred as could be, Those debts incurred and money owed was paid by only me. And when a deal would turn out sour and not be any good, To do just like I promised, to do what I said I would. He’d been thru many adverse times and this was how he felt, If times get tough just get tough too and tighten up your belt. Don’t look around for any help, but use your hands and head, Don’t cry about the plight you’re in but go to work instead. We hear and read most every day what our government should do, And of all the money needed to take care of you and me. The only thing that this country Needs and it needs it mighty bad, Is just a lot more people exactly like MY DAD.

Author Unknown

Emotional Support Men in our society are raised and expected to be the Rock of Gibraltar, to keep a stiff upper lip, and to take it like a man. It is easy to fall into that trap; to be detached by burying one’s self in research, online bulletin boards, and bill payments. Some may joke around that they are the family’s chauffeur and porter. The reality is that a father provides important emotional support not only to his kids but also to his wife. It is hard. Men are supposed to be able to fix things, make them all better. We get frustrated and angry because we cannot

315 make this condition better. Batten Disease is not something that is going to get cured and then everything will be okay. You, and your family, will have good days and bad days. Maybe a lot of them in a row. However, if you are wallowing in your own pity and remorse, you cannot provide support to your family. How do we get over this hump? How do we get over our own emotional crisis so we can support our family? The answer is not a good one. Men struggle with this issue all the time. The best coping strategy is to keep focused on what is important, the health and happiness of the family, not on what you think could have or should have been. So have you been successful at staying engaged, lowering the family’s anxiety level, and reducing stress in the house? Sometimes yes, sometimes no. You would like to think you are in progress – life continues to change and you must too. In the end, your effectiveness as a father will be for others to judge.

A Batten Parent’s Pledge

Through my eyes you will see, By my feet you will run and play, By my hands your needs will be met, Through my lips you will speak.

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Through your spirit I am strengthened, Through your struggle I am inspired, By your character I am humbled, By your love I am renewed.

In my mind I will see you dance In the warmth of the sun I will feel your love In the wind I will hear your voice In my heart I will carry you forever.

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