COPING with CAREGIVING 1 a More Recent Revision Exists, for Current Version, See

A more recent revision exists, For current version, see: https://catalog.extension.oregonstate.edu/sites/catalog/files/project/pdf/pnw315

Coping Caregivingwith

HOW TO MANAGE STRESS WHEN CARING FOR OLDER RELATIVES

PNW 315 Reprinted June 2003

A Pacific Northwest Extension Publication Oregon State University • Washington State University • University of Idaho A more recent revision exists, For current version, see: https://catalog.extension.oregonstate.edu/sites/catalog/files/project/pdf/pnw315

Authors Vicki L. Schmall, Extension gerontology specialist emeritus, Oregon State University; Ruth E. Stiehl, professor of education, Oregon State University. A more recent revision exists, For current version, see: https://catalog.extension.oregonstate.edu/sites/catalog/files/project/pdf/pnw315

Coping Caregivingwith

HOW TO MANAGE STRESS WHEN CARING FOR OLDER RELATIVES

Vicki L. Schmall and Ruth E. Stiehl

PNW 315 • Reprinted June 2003

Contents

Who are you, the caregiver? ______2 What is caregiving? ______3 Caregiving stress: symptoms and causes ______4–5 Strategies for managing stress ______4 Set realistic goals and expectations ______6 Establish your limits ______8 Ask for and accept help ______8 Take care of yourself ______9 Involve other people ______13 Caregiving from a distance______19 Placement in a care facility ______22 Conclusion ______22 For more information ______inside back cover A more recent revision exists, For current version, see: https://catalog.extension.oregonstate.edu/sites/catalog/files/project/pdf/pnw315

amily members who play a major role in caring for Felderly relatives frequently ignore their own needs. Some find themselves virtually homebound and consumed by caregiving tasks. When caregiving is prolonged over months and years, the self-sacrifice is particularly harmful. We have prepared this publication to help you maintain your personal well-being while providing quality care for an elderly relative. We will discuss the sources of stress and how you can master stress for your own benefit and that of the person for whom you are providing care.

COPING WITH CAREGIVING 1 A more recent revision exists, For current version, see: https://catalog.extension.oregonstate.edu/sites/catalog/files/project/pdf/pnw315

Remember, it’s just as important another person. This can create to take care of your own needs areas of conflict and high levels as to provide the best care for of stress in your life. Many nursing your family member. As a care- If you’re young, you probably giver, ignoring your own needs is home have competing responsibilities not only potentially detrimental for children, spouse, and job. If placements to you, but also can be harmful are you’re older, you may be adjust- to the person who depends on ing to age-related changes precipitated you. Many nursing home place- including retirement, reduced by the ments are precipitated by the income, widowhood, declining caregiver’s caregiver’s exhaustion, illness, or health, or different living exhaustion, death. This publication can help arrangements. At any age, you illness, or prevent such a situation for you probably have important goals and your family. death. This and plans that are interrupted or publication Who are you, postponed because of caregiving can help the caregiver? responsibilities. prevent such You may be a spouse, son, As a caregiver, you may be a situation daughter, neighbor, close friend, providing care out of love or out of a sense of obligation. More for you and or distant relative. You may be often than not, you feel both love your family. young or older yourself. No matter your relationship or age, and obligation. You may be as a caregiver you are making providing the support alone or concessions and a personal coordinating the work of others. sacrifice to provide care for You may find caregiving tasks satisfying and rewarding or completely frustrating. This publication will help you understand your responses and will show you ways to reduce the conflict and stress caused by the demands of caregiving.

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What is caregiving? well-being. You may feel a sense of accomplishment in helping Caregiving can evolve slowly, your dependent relative and may over a long time, or suddenly, in experience a new closeness in the case of illness or accident. your relationship. Often a parent Caregiving can mean having the and child reach a higher level of older person live with you, near acceptance and understanding you, or hundreds of miles away. when the child provides care for Your older relative may be physi- the mother or father. However, cally disabled, mentally inca- no matter how loving the rela- pacitated or both. Depending on tionship, caregiving almost the specific need, caregiving can always involves some personal be a lot of different activities, sacrifice and stress, which can be including: seen in the following symptoms: • Round-the-clock supervision • Emotional or physical • Supervising others who exhaustion Caregiving can provide direct care • Depression mean having • Shopping • Marital problems the older •Telephoning •Family problems person live •Traveling to and from your • Alcohol or drug misuse with you, near relative’s home • Conflict among life roles— you, or • Maintaining two homes— spouse, employee, parent, and hundreds of yours and your relative’s caregiver miles away. • Lifting, bathing, dressing, and • Neglect or abuse of the older feeding person • Managing incontinence • Managing financial and legal You may feel that there are too affairs many expectations and not • Providing social activity enough time and energy to meet them all. Unresolved, excessive, • Supervising medication or prolonged stress results in • Arranging for health care what often is called burnout. • Listening, talking, and When challenges and demands providing emotional support are too great, they drain our physical energy, time, health, Whether you are providing and money. Becoming aware of round-the-clock direct care or how stress takes hold is the first coordinating others who provide step toward coping with it. direct care, you are still the caregiver: You are responsible to some degree for another person’s

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Strategies you can develop skills for coping for managing stress with the changes brought on by Once you know the sources of his illness. stress, you must determine which Usually some action can be ones you can do something taken to decrease stress. Changes about and which ones are do not need to be major to make beyond your control. Successful an important difference. Some- coping involves accepting what times letting go of unrealistic you can and cannot change. expectations or adjusting your For example, you will not be standards of how frequently or able to change a parent who has how well you perform a task always been demanding and (such as housekeeping) will inflexible, but you can control make a big difference. how you respond to your parent’s In general, professionals who demands. If your father has a have extensive experience work- progressively debilitating illness, ing with caregivers agree on five you can’t change that. However, basic strategies to help control

Caregiving Stress: Symptoms When you experience an unusual level of stress, certain warning signals occur. Answering the following questions will increase your awareness of these signals. Yes No ❏❏ 1. Do you feel a loss of energy or zest for life? ❏❏ 2. Do you feel out of control, exhibiting uncharacteristic emotions or actions? ❏❏ 3. Do you lack interest in people or things that formerly were pleasurable? ❏❏ 4. Are you becoming increasingly isolated? ❏❏ 5. Are you using more sleeping pills, medications, alcohol, caffeine, or cigarettes? ❏❏ 6. Are you having increased health problems; for example, high blood pressure, ulcers, or difficulties with digestion? ❏❏ 7. Is it hard to fall asleep at night? Do you awaken early or sleep excessively? ❏❏ 8. Are you experiencing appetite changes? ❏❏ 9. Do you have problems with concentration or memory? ❏❏10. Are you increasingly irritable or impatient with others? ❏❏11. Do you have thoughts of suicide?

A “yes” answer to even some of these questions can indicate stress that has become debilitating. Recognizing the source of this stress is the next step in dealing with its destructive effects.

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the destructive effects of stress. 4. Take care of yourself. They are: a. Express your feelings. 1. Set realistic goals and b. Maintain your health. expectations. c. Take time for yourself. a. Plan achievable goals. 5. Involve other people. b. Develop realistic a. Hold a family conference. expectations. b. Get professional guidance. 2. Establish your limits. c. Use community 3. Ask for and accept help. resources.

Caregiving Stress: Causes Causes of stress vary with the responsibilities and the caregiver. What creates stress for you may not create stress for someone else. There are, however, some common sources of caregiving stress, which we raise in this series of questions. Yes No ❏❏ 1. Do you have multiple demands on your time, energy, or money? What are they? ❏❏ 2. Do you feel that your responsibilities conflict? Which ones? ❏❏ 3. Is there a difference in expectations between your family, your boss, your dependent relative, yourself? What are they? ❏❏ 4. Do you feel you don’t understand the older person’s mental or physical condition? ❏❏ 5. Do you have difficulty meeting your relative’s physical or emotional needs? ❏❏ 6. Are you pressured by financial decisions and lack of resources? ❏❏ 7. Do you feel a loss of freedom . . . a sense of being “trapped”? ❏❏ 8. Is there disagreement among family members? ❏❏ 9. Do you feel that other family members aren’t doing their share? ❏❏10. Does the older person place unrealistic demands and expectations on you? ❏❏11. Is there a lack of open communication? ❏❏12. Do other family members have negative attitudes that you have trouble contending with? ❏❏13. Is there deterioration in your family member that is painful to watch? ❏❏14. Are there other problems with children, marriage, employment, or health? What are they?

Look carefully at questions to which you answered “yes.” Focus your attention on these specific sources of stress as we talk about ways to reduce stress.

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Set realistic goals In addition to understanding and expectations yourself, you also need to know how the illness or disability Plan achievable goals affects your family member. What do you want to accom- Objectivity about your situation plish? The basic goals of is important—but not always caregiving are to assure the care easy. Find out what is likely to receiver’s quality of life, physical occur medically and behavior- comfort, and safety. These goals ally now and in the future. For can be accomplished in many example, sometimes a mentally ways. For example, you may be impaired person’s behavior or the direct care provider or you moods can be baffling. It can may be a “care manager” who appear that he or she is inten- arranges, coordinates, and moni- tionally being difficult, acting tors the services your family helpless, or refusing to communi- member requires. cate. If this behavior occurs, In setting goals, it’s important to consult with a professional who consider how caregiving is likely is knowledgeable about your to affect other areas of your life. family member’s condition. A How is your health? What is your professional often can assess relationship with your spouse whether behavior is intentional and children? What other or disease-related and therefore demands and obligations do you unintentional. By determining have? Are you employed? Pre- the reason for behavior, you can venting caregiver burnout means adjust your expectations and accepting the limitations of what responses. you can accomplish. You’ll see results more often if you select goals that are specific and achievable. Specific goals are short-term and focused on a clear problem. If you have only broad, long-range goals, you are more likely to experience frustration. You may have a long-range goal of getting your father back to his own home, if possible. Specific, achievable, short-term goals might include: •Keeping your father’s spirits up by arranging for friends and family to visit

6 COPING WITH CAREGIVING A more recent revision exists, For current version, see: https://catalog.extension.oregonstate.edu/sites/catalog/files/project/pdf/pnw315

• Developing your father’s depressed? Do you sometimes physical strength by arranging think, “Mother took care of me for people to take him on daily when I was a child. I should be walks able to care for her as well as she took care of me”? The degree to which short-term goals are accomplished will help Caregivers frequently struggle to you assess the practicality of balance their self-expectations long-term goals. Professionals with what they actually can involved in your family member’s achieve. Sometimes we expect care can help you set realistic too much of ourselves and we Preventing get into a state of constant worry short-term goals. caregiver or anxiety because we think we Also consider goals in terms of are not doing what we should. burnout the ill person’s personality and Women caregivers are particu- means capabilities. Some caregivers are larly vulnerable to “shoulds.” accepting driven by goals such as “make Because of the way females are the mother happy.” Given mother’s raised in our society, women limitations personality or the accumulation caregivers often believe they of recent losses, this goal could of what should be able to do everything be completely unachievable. you can themselves. When unable to do Such a goal creates a heavy accomplish. so, they feel guilty or depressed. burden, and you’ll probably never feel that you’ve attained it. Sometimes old promises drive us A specific and achievable to do more than what is realistic. goal, however, might be to Promises can get in the way of provide a pleasurable activity at objectively assessing the current least once a week for your situation. They reduce our objec- mother. Perhaps that’s spending tivity and ability to make the best 2 hours each week visiting decisions for everyone con- friends or working on a puzzle. If cerned. It’s important not to let you set specific goals, you are old promises, “shoulds,” or guilt more likely to feel satisfied with guide caregiving decisions. If an your progress. old promise, such as “Mom, I’ll never put you in a nursing Develop realistic expectations home,” is creating difficulties for How realistic are your expecta- you, compare the current situa- tions? Do you often feel that if tion to the one when the promise only you could do more, things was made. You’ll probably find would be better for your family the situation has changed con- member—your mother would siderably. If it hadn’t, it might be happier, your father less indeed have been possible to confused, your spouse less fulfill the promise.

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Establish your limits Resistance to accepting help is a common cause of stress and You have a right to set limits on depression among caregivers. In what you will do. It’s all right to our culture, with its emphasis on say “no.” That can be difficult, “independence” and “going it however, especially if you must alone,” it’s not easy to request make painful choices. At times, help. Some caregivers view it as of course, it’s necessary to go a sign of helplessness, inade- beyond limits. In general, how- quacy, or failure. Actually, asking ever, providing care at the for needed help is just the oppo- expense of your mental and site. Knowing your limits and physical health or relationships reaching out for assistance before with other family members does you are beyond your limits is an not benefit anyone! important characteristic of a When you set limits, it’s impor- strong individual. It also helps tant to communicate them to ensure quality care for your your family and to your ill rela- family member. tive. This may be particularly Resistance to Being a martyr benefits no one. painful to do with a parent or Refusing help will not make you accepting spouse. But remember, not to do a better caregiver—it will make help is a so will only increase your stress. common you exhausted and probably Discussing limits in caregiving is irritable. cause of usually easier if you consider Family members, neighbors, and stress and other ways in which your friends often are willing to help. depression relative’s needs can be met. But sometimes people hesitate to among Share information about those ask if they can help because they options at the same time you talk caregivers. are frightened by illness, feel about your limits. uncomfortable around the ill Ask for and accept help person, don’t want to interfere, or don’t know what they can do. How do you respond to offers of You may have refused earlier help? Is it difficult to ask for offers, or you may appear to have assistance? When you do, are everything under control. you specific enough so people know exactly what you want? Do People can help best if you tell you expect close family members them exactly what you need and to know when you need help? how they can help. Be specific Do you refuse offers of help, but and positive. When family or feel exhausted or resent not friends ask how they can help, receiving assistance? Do you feel make a specific suggestion. For “I should be able to do it alone”? example, say, “Could you visit

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with mother for an hour so I can Understand your emotions. Being go to the store?” or “When you a caregiver and seeing a loved go to the store, could you pick one decline are not easy. Almost up a few things I need?” Tasks every caregiver experiences a unrelated to caregiving may be wide range of emotions, some of easier for some people. If you which are conflicting, confusing, can be flexible, ask when would and ambivalent. You may feel be the best time for them. It’s love, sadness, frustration, dislike, also important to show apprecia- repugnance, guilt, grief, fear, tion for any help received. Let resentment, hopelessness, or people know how much their despair. You may feel angry support means to you. about your family member’s People are always less likely to increased dependency and the respond to requests that are multiple demands on your time, demanding, manipulative, or energy, and money. As your guilt-provoking. One of the least family member changes, you productive attitudes a caregiver may grieve the loss of the person can have is to expect others to he or she used to be. Feeling “know” when help is needed. unappreciated is sometimes a People are not mind readers. problem for the caregiver, par- Keep in mind, too, that others ticularly if the ill person may have obligations or prob- expresses only dissatisfaction or lems of which you are not aware can’t show appreciation. but that limit the assistance they can provide.

Take care of yourself

Express your feelings It’s very important that you find someone with whom you can talk openly about your situation and your emotions.

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These feelings are normal. They so—write them down, get are neither “good” nor “bad,” nor involved in vigorous physical do they reflect the degree of your activity, chop wood, punch a Stress has caring. Feeling angry does not pillow. fewer mean you love your relative less. Use assertive communication negative What is important is how you techniques. Feelings should not handle your feelings. Learning to effects for be expressed in a manipulative express feelings and to deal with or hostile way, to get even with people who tensions in constructive ways is admit their someone or to create a sense of vital to your emotional and guilt. Such responses are not feelings and physical health. constructive and may indicate accept Stress has fewer negative effects you are stuck in an “anger trap.” them. for people who admit their To avoid the trap, use assertive feelings and accept them. When communication. When conflicts you understand your emotions, arise, talk about them with those you can control them. Repressing involved. Express yourself in or denying feelings drains energy terms of your own feelings. Use and can cause irritability, depres- “I” statements and describe sion, or physical problems. Your specifically what is bothering feelings also can greatly influ- you. For example, “I’m upset that ence your judgment. mother’s doctor appointment Some feelings are very hard to wasn’t made.” share directly. If this is true for Avoid “you” or blaming state- you, find an indirect way to do ments that imply others are responsible for your feelings. Blaming statements, such as “You don’t care about Mom,” “You make me so angry,” “You never follow through on anything,” or “You always let me down” sound accusatory and tend to create defensive arguments. Saying “I feel, I need, I expect, I choose, I believe” is more effective and less threatening. Avoid terms such as “always” and “never”— the person usually will deny these statements because “never” and ‘‘always” are rarely true. Assertive communication encourages problem solving.

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Recognition and appreciation are has long-range consequences, important needs. If you don’t feel not only for you but for the appreciated, let others know. Ask person who needs your care. for positive feedback. If the care Proper diet, sleep, exercise, and receiver can communicate, tell attention to your health problems him or her your feelings. are essential. Join a support group. Most Without adequate nutrition and people benefit from sharing their rest, you will feel exhausted, feelings with someone who is discouraged, and depressed. If supportive and who listens interrupted sleep is a major nonjudgmentally. Sharing often problem, find someone who will relieves tension, helps give a provide occasional or even new perspective, increases regular night duty. mutual understanding, and Exercise has many benefits. It builds support. promotes better sleep, reduces Some areas have support groups tension and depression, lifts for this kind of sharing. Some spirits, and increases energy. If To provide groups are oriented to specific you see exercise as just one more effective care, diseases such as cancer, demand, think of ways to build it it’s vital that Parkinson’s disease, lung diseases, into your daily routine. If your you maintain or Alzheimer’s disease. Others family member is physically your own are for family caregivers in able, perhaps you could walk health. general. Many caregivers find together. Do stretching exercises that support groups help them while talking on the telephone or feel less alone. Support groups watching television. Relaxation give an opportunity to share techniques are another way to openly with others who under- reduce stress. Find activity you stand and to learn techniques for enjoy, so exercise is a pleasure coping. Get information about for you. Do it 20 to 30 minutes local support groups from a local three times a week. hospital or home health agency, Humor is a powerful antidote to the Area Agency on Aging, or stress. Laughing quickens the disease-related associations such pulse rate, stimulates the blood as the American Cancer Society circulation, activates muscles, or the Alzheimer’s Association. increases oxygen intake, and Maintain your health fosters physical relaxation. If you To provide effective care, it’s vital have forgotten how to laugh, try that you maintain your own to be around people who still health. Neglecting your health know how—it’s contagious.

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to the care receiver as well as to you. It can increase the dependency of the care receiver. The ill person who sees few people regularly may benefit from being with others while you take a break. Sometimes, too, the care receiver is more responsive with another person. For example, he or she may participate more actively in rehabilitation exercises in your absence. Objective evaluation usually shows that others can provide adequate care, at least for a short Take time for yourself time. If you hesitate to leave What do you do for personal because you are concerned renewal? Do you save some time about what might happen while for yourself out of each day and you’re away, ask yourself, “What take occasional extended breaks? is the worst that could happen?” Or are you so involved with Then make contingency plans for caregiving tasks that you have handling “the worst.” little or no time for yourself? Consider getting breaks early in All too often, caregivers place caregiving. If you wait until you their own needs last. Helping an are burned out, these breaks will older relative should not mean not be enough. It’s important to giving up all activities and rela- make a plan for regular breaks, tionships with other people. decide on the time, date, and Sacrificing oneself in the care of activity—then follow through! another and removing pleasur- Finding appropriate substitute able events from one’s life can care takes time and preparation. lead to emotional exhaustion, In some areas, community depression, and physical illness. respite care can provide in-home Taking breaks from caregiving is or out-of-home support. Respite essential for both full- and services may be available for a part-time caregivers. You have a few hours, a day, overnight, right—even a responsibility—to weekends, a week or longer, and take time away from caregiving. on a planned or emergency Refusing to take breaks for basis. Respite providers may be self-renewal can be detrimental trained volunteers or paid staff.

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In-home respite care can include but state your need for a break. companion-type or supervision For example, you might say, services or the temporary use of “Dad, I know it’s hard to have homemaker and/or home health me leave, but I am exhausted services. It has the advantage of and I need to get away for a keeping the person in familiar while.” For the memory- surroundings. Out-of-home care impaired person, it may help to includes adult day care programs leave a note indicating the time or short stays in adult foster care you will return. homes, assisted living facilities, nursing homes, or hospitals. Involve other people Regardless of the respite care you Hold a family conference select, prepare for the service by answering these questions. Although care for an older person may be provided primarily • What type of help do I really by one person, all family need (regular or occasional)? members should be involved in • What times are best for me? the planning and continual •How much notice do I need to support. One way to decide how Consider give the substitute care to share caregiving responsibili- getting breaks provider? ties is to hold a family conference. early in • What information should the Hold a family conference as caregiving. respite provider have about the early as possible after the need elder’s special needs and for caregiving arises. The confer- If you wait routine? ence gives everyone a chance to until you are •How should the respite pro- discuss caregiving concerns, burned out, vider deal with an emergency identify potential problems and these breaks (who and where is backup)? solutions, and negotiate the will not be •How can I prepare the older sharing of caregiving tasks. The enough. person for my leaving? conference also can clarify each person’s expectations and mini- If you’ve always been available, mize misunderstandings. you may need to prepare your family member for your leaving. Include everyone. Everyone who You might try a trial period. Have is concerned and might be the substitute care provider visit affected by care decisions — a few times while you are siblings, spouse, other relatives, present or take only a brief break housemates, neighbors, close in the beginning to see how the friends, and the person for whom arrangement will work. If your plans are being made—should relative protests your leaving, be involved in the family confer- acknowledge his or her feelings ence. If illness prevents the care

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receiver from being involved Plan for success. A family con- directly, get his or her input and ference is most successful when keep him or her informed. you take these steps. Remember, having as much • Before the conference, ask control as possible over our lives family members to list their is important to all of us, regard- concerns and tasks they are less of age or illness. willing to do. Don’t exclude a family member • Hold the conference in a from a family conference neutral place. Holding it in the Don’t because of distance, personality, older person’s home helps give exclude a family history with the older him or her a greater sense of family person, or limited resources. It’s control. member just as important to include a • Create a feeling of support and from a difficult, argumentative family confidentiality. member, or one who never visits, family •Keep the conference focused as it is to involve those who are conference on the current concern rather supportive. because of than on other issues or past Telephoning distant relatives to distance, conflicts. get their input and to keep them • Be certain everyone has the personality, informed helps them feel a part opportunity to express feelings, family of the decision making. Involving preferences, and suggestions history with all family members in developing without being “put down.” the older a caregiving plan ensures greater •Focus on the positive. Identify person, or success and support for the plan what each person can do, but and helps prevent later under- limited encourage everyone to be mining of decisions. resources. honest about her or his Consider a two-step conference. limitations. Sharing Sometimes it’s helpful to hold a information about other two-step conference. The first responsibilities can help others meeting, held without the older understand why the support person, is to air ideas, feelings, must be limited. and concerns, look at gaps in • Prepare a written plan listing information, and discuss respon- what each person will do and sibilities for each family member. when he or she will do it. Keep The purpose should not be to it flexible. A written plan can make the decision or to “gang prevent later disagreements up” on the older person. A about who agreed to what and second meeting is held with the can better assure that needed older person, who is involved as tasks will be completed. much as possible in looking at options and making decisions.

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Realize there may be conflict. A and safety. Intense conflicts often family conference is not always result when one person insists easy; in some families, it is impossible. It’s most difficult for families who have never discussed feelings and family concerns. Where conflicts exist among family members, decision making is difficult. When family members come together after years of separation, old conflicts about relationships, family roles, expectations, and even inheritance can reemerge. Family members often have different perceptions about the care needs of an older person, the best care option, the that the older person be main- division of care tasks, and how tained at home and another is money should be spent. For fighting for nursing home place- example, one brother might not ment. If family conflicts or hid- want a parent’s resources—his den resentments prevent rational potential inheritance—spent for discussion, seek professional in-home services. He may prefer guidance. A counselor, health or that the family provide the social service professional, or needed care, while another member of the clergy trained in brother feels “Mom’s money is family counseling can help you there to spend on her” and deal with family conflicts. He or prefers to purchase care services. she also may be able to guide the family conference. Beliefs about what is “best” often differ, creating conflict. One Get professional guidance person may believe the impaired Receiving professional advice person should be kept at home, and assistance can help reduce regardless of what needs to be some of the causes of stress. done; another may feel that a Consider seeking professional different living arrangement is guidance under the following needed for the person’s health circumstances.

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•You use alcohol or drugs to Get names of individuals skilled forget your problems, relieve in working with older adults and stress, fall asleep at night, or their families through senior get going in the morning. centers, hospitals, and health, Receiving Substance abuse can impair family, and social service agen- professional your judgment and contribute cies. When you call a profes- advice and to feelings of inadequacy and sional, state your specific need guilt. It also can result in and ask the person about his or assistance neglectful or abusive behavior. her training and experience with can help •You become depressed. your problem. If the person is reduce some Untreated depression can unable to assist you, ask for of the causes harm your health and your names of others who can help. of stress. responses to the ill person. Use community resources •You don’t understand your In recent years, a range of com- family member’s behavior or munity services has developed to don’t know how to deal with help older persons and their specific care tasks. families. Specific programs •You feel resentment or lose designed for caregivers include emotional control, or you respite care and support groups neglect, humiliate, or become (see pages 11–13). Also, pro- physically rough with a family grams designed to serve older member. These behaviors often adults can help the caregiver, are caused by exhaustion, too. Paying for outside assistance stress, or lack of resources. early in the caregiving process is •You are being physically or generally less expensive than if emotionally abused by your you wait until you become impaired family member. overwhelmed and exhausted. At •Your family cannot resolve that point, your options are likely problems or reach agreement to be fewer and more expensive, on care decisions. and you may be paying health •You feel conflict between care- bills for yourself as well as for giving and other responsibilities. your relative. Available services vary by com- A professional often can help munity. Following are some of you gain a clearer perspective. the most common. Don’t be afraid to seek help and don’t wait until a crisis over- Companions or friendly visitors whelms you. Getting help is a provide companionship, friend- sign of personal strength, not ship, support, or supervision to weakness, and will enable you to older adults for a few hours at a be a more effective caregiver. time. In some areas, paid

16 COPING WITH CAREGIVING A more recent revision exists, For current version, see: https://catalog.extension.oregonstate.edu/sites/catalog/files/project/pdf/pnw315

companions are available to stay Days for home delivery of meals Possible through the evening and night. vary from one area to another. community For older people living alone, Congregate meals are inexpen- resources friendly visitors can provide a sive, nutritious meals in a group • Companion or safety check as well as compan- setting in senior centers or other friendly visitor ionship. In general, they do not community places. Often, trans- • Telephone provide housekeeping or per- portation is available for those reassurance sonal care. unable to drive, and mealtime • In-home medical A telephone reassurance pro- includes recreation and social alert gram makes regular telephone activities. • Chore service calls to ill or disabled persons Transportation services provide who are homebound. • Homemaker vans or buses for travel to and service In-home medical alert program from doctors’ appointments, • Home health aide (“Lifeline”) participants wear an rehabilitation sessions, congre- electronic device that sends a gate meal programs, and some- • Home-delivered signal to a central dispatcher, times grocery shopping and other meals often at a hospital, if the activities. Transportation services • Congregate meals impaired person falls or needs must be scheduled in advance. • Transportation help. Emergency assistance is Adult day centers are for people service summoned if the person does not who are physically or mentally • Adult day center answer the telephone. incapable of independent living • Day treatment Chore services help with yard- and need a supervised environ- • Home health nurse work, minor home repair, and ment during the day. Programs winterization. In some areas, vary but often offer health and chore services also include help medical monitoring, meals, and with household chores, grocery recreational group activities. The shopping, laundry, meal prepara- program enables some caregivers tion, and cleaning. to continue their employment Homemaker services assist with and care for their relative at the light housecleaning, shopping, same time. laundry, and food preparation. Day treatment helps individuals Home health aides help with who are mentally ill or have a personal care activities such as mood or thought disorder that bathing, feeding, and toileting. significantly impairs judgment or Aides from a certified home behavior. Psychosocial rehabili- health agency are trained and tation is provided to assist these supervised by a registered nurse. people in their daily lives. Home-delivered meals are nutri- Home health nurses offer health tious meals delivered to home- assessment and home health care bound elders, usually at midday. to persons who need nursing

COPING WITH CAREGIVING 17 A more recent revision exists, For current version, see: https://catalog.extension.oregonstate.edu/sites/catalog/files/project/pdf/pnw315

care at home. If needed, other you feel you don’t have time to When services such as physical make the necessary calls, enlist therapy, speech therapy, and the help of other family members calling an home health aide services are and friends. They can help make agency, provided. the contacts or provide care for state your Some of these programs charge a your family member while you needs as fee, which may be determined call. clearly as by ability to pay. Other services Your local Area Agency on Aging possible may be free or have a voluntary is a good place to find out about and donation because they are programs and services in your remember provided by volunteers, govern- community. It also may be called to ask about ment, or charitable organiza- Senior Service Division, Aging eligibility tions. Some programs also have Services, or the Office on Aging. requirements age, income, or other eligibility If an agency representative can’t requirements. When calling an and costs. answer your questions, ask to agency, state your needs as speak to the supervisor. Avoid clearly as possible and remem- becoming irritated or angry. Say ber to ask about eligibility something like “I appreciate your requirements and costs. Use the assistance, but I’d like to ask your telephone prompter on page 19 supervisor some additional to help you get the best informa- questions.” If the supervisor is not tion from agencies. available, ask for the best time to Contacting agencies requires call back. Before you hang up, considerable time and energy. If ask if there is a direct telephone number for the supervisor. Whether or not you need assistance now, explore community services for future needs. Find out about services offered by public and private sectors, and record the information for future use. You never know when you might need a service, and in a hurry.

18 COPING WITH CAREGIVING A more recent revision exists, For current version, see: https://catalog.extension.oregonstate.edu/sites/catalog/files/project/pdf/pnw315

Caregiving from a distance may face the tough decision of whether to move your relative Distance can make caregiving Whether or closer to you. If you are consider- more complicated. You may get not you ing moving a parent to your calls from neighbors and friends need community or into your home, who are concerned about your carefully weigh the advantages assistance relative’s health or living situa- and disadvantages for your now, tion, but it’s difficult to know relative, yourself, and your explore how well your older relative is family. Since needs change over functioning without being near. community time, weigh the decision for the services for Establish a network future as well as for the present. future You may be driving or flying A move can separate your family needs. back and forth to repeated crises member from long-established or spending long weekends and roots that are not easily replaced. vacations “getting things in This can present a major prob- order” for your family member. lem. The person may become If so, you will need to establish entirely dependent on you for a network of neighbors, friends, social and emotional support. and professionals in your This is more difficult if your relative’s community who can family member does not make help assess your relative’s needs friends easily or is limited in and arrange for services. In some mobility or verbal skills. communities, health care professionals in public agencies and private businesses offer the service of coordinating the care Telephone Prompter of older persons Place this prompter by your telephone when you call about community whose primary rela- services. It will remind you of the questions to ask. tives live at a distance. My name is ______What are the costs? How are I’m caring for ______they paid? Think before you move I need ______What are the eligibility your family member requirements? Can you help me? If you are an only How long must we wait? (If no): child or have primary Can you send a brochure or Can you give me another name responsibility for your application? family member, or if to call? To whom am I speaking? there are no relatives (If yes): living nearby, you Do I need to speak to anybody What services do you provide? else?

COPING WITH CAREGIVING 19 A more recent revision exists, For current version, see: https://catalog.extension.oregonstate.edu/sites/catalog/files/project/pdf/pnw315

A move also should be consid- appreciated. The person receiv- ered in light of your past relation- ing care sometimes takes out his ship with your family member. or her feelings of loss on those Can you tolerate increased and providing the day-to-day support intensified contact with your and talks in glowing terms about relative? Relationships that have sons and daughters who live at a been difficult in the past or distance. If this happens, do not succeeded because of geo- allow the older person to put graphic distance often require down the primary caregiver in extensive adjustment when the your presence. It will help if you If you live at a distance is removed. Remember, also let the primary caregiver distance, it’s arranging for needed services for know you understand the situa- critical to a family member is sometimes tion and appreciate what he or support, in the most appropriate means of she does on a day-to-day basis. whatever way caregiving. Conflict can arise between family you can, the Support the local caregiver members who live near the older caregiver who If you live at a distance, it’s person and those who live at a has day-to-day critical to support, in whatever distance, because of their different perspectives. If you spend responsibility. way you can, the caregiver who has day-to-day responsibility. only a few days with your rela- Maintain regular contact. Call tive, the care needs may not frequently rather than expecting seem as great as they would if the caregiver to call you. Ask you had daily responsibility. “What can I do to help?” Make a Sometimes, too, the older person list of tasks you are willing and will “perk up” in response to a able to do and share this list with visit by a rarely seen family the caregiver. Perhaps you can member and will fail to display give the caregiver a break by the symptoms and difficult spending a week with your older behavior that occurred before the family member, paying for a visit. At times, someone will housekeeper or respite care “dump” on one person and show provider once a week, or inviting a cheerful side to another. This your older family member to visit behavior can be related to dis- you. Calling your older relative tance or to past relationships. weekly, making frozen meals, or Don’t let apparent differences in managing the person’s finances behavior between what you see may provide needed relief for the and what the caregiver has told primary caregiver. you discredit the caregiver. To Caregivers who provide daily accurately assess your relative’s support to an older family mem- functioning, you may need an ber frequently feel they are not extended visit and a talk with

20 COPING WITH CAREGIVING A more recent revision exists, For current version, see: https://catalog.extension.oregonstate.edu/sites/catalog/files/project/pdf/pnw315

professionals involved in your relative’s care. Remember, too, that local caregivers often have to compro- mise with the older person and accept imperfect solutions to problems. For example, if you find your father’s home is not as well kept as you feel it should be, it may not be that family members are neglectful. Your father may be refusing help with the household chores.

Be prepared for dramatic changes If you live at a distance and are additional burden on the care- unable to visit regularly, you may giver. Unloading on the primary be shocked at the deterioration caregiver may create just one in your relative when you do more stress. The caregiver may visit. You may become upset begin resenting your visits or because you have not been told struggle to make the ill person “just how bad Mom or Dad is.” appear better than he or she When changes are gradual, really is. family members who have daily If you are a local family member, contact often are not aware of try to understand the different the degree of change because perspective of out-of-town they have adjusted to it gradu- relatives. Keep them informed ally. When you live at a distance, and involved in decisions. Let Ask “What you have only two points of them know the needs and can I do to reference—the last time and request specific help rather than help?” Make now. The changes can appear resent them for “not doing a list of tasks dramatic. more.” And, remember, show you are You can help by concealing your appreciation for any help you willing and shock which could place an receive. able to do and share this list with the caregiver.

COPING WITH CAREGIVING 21 A more recent revision exists, For current version, see: https://catalog.extension.oregonstate.edu/sites/catalog/files/project/pdf/pnw315

Placement in a care facility in the best position to share special memories and give your A time may come when you or relative a feeling of belonging other family members cannot and of being loved. These feel- provide direct care, or in-home ings add immeasurably to the services no longer meet your person’s quality of life. You are older relative’s needs. Placing the doing frail older person in adult foster Conclusion many care or a care facility is some- Caregiving decisions should not things times the best decision for every- be based only on the needs and one. However, it might be one of right. desires of the older person. Also the most difficult decisions you Don’t fail consider the consequences of will ever make. to give caregiving decisions for yourself yourself Moving your family member to a and other family members. care facility does not end your the credit Making these decisions is an caring relationship. It merely you’re essential part of self-care, which changes the relationship, and due. in turn will help you provide often for the better. It signifies an effective care for others. extension, rather than the end, of Even if you follow the sugges- your caring. You become a tions provided here, not every- valuable member of the health thing will be as you like. At times care team by participating in you will wish you had done planning care, helping staff to things differently. You are only understand your family member’s human. If you make a mistake, needs, and monitoring the care admit it, learn from it, and then he or she receives. go on. There is no advantage in Potential benefits of placement carrying feelings of guilt. for your relative include increased Too often caregivers focus on social contact, recreational and what they have not done well. social activities, and rehabilita- Remind yourself of the many tion services. Also, when you’re things you have done well—that no longer devoting your time to will make you feel better about meeting the physical and safety yourself. Ask yourself “What are needs of your family member, my personal strengths? How have you’ll be better able to meet I made a difference for my family some of his or her emotional and member? What things have I social needs, which is very done that I feel good about?” important. Almost any trained person can assist your relative You are doing many things right. with activities of daily living— Don’t fail to give yourself the dressing, bathing, and feeding. credit you’re due. Family and friends, however, are

22 COPING WITH CAREGIVING A more recent revision exists, For current version, see: https://catalog.extension.oregonstate.edu/sites/catalog/files/project/pdf/pnw315

For more information Oregon and PNW publications are available from Oregon State Univer- PNW publications sity. PNW publications also are Sensory Changes in Later Life, available from Washington State PNW 196 University and University of Idaho. Contact the offices below, or visit Aging Parents: Helping When their Web sites, for information on Health Fails, PNW 246 availabilities, prices, quantity Hiring and Working Successfully discounts, sales tax, and shipping with In-home Care Providers, and handling charges. PNW 547 Depression in Later Life: Recog- Publication Orders nition and Treatment, PNW 347. Extension & Station Communications Driving Decisions in Later Life, Oregon State University PNW 510 422 Kerr Administration Helping Memory-impaired Elders, Corvallis, OR 97331-2119 PNW 314 Fax: 514-737-0817 Making Decisions about a Nursing Tel.: 541-737-2513 Home, PNW 563 [email protected] http://eesc.oregonstate.edu/ Oregon publications Talking to Your Family and Doctor Bulletin Office about Difficult Health Care Cooperative Extension Decisions, EC 1386 Washington State University P. O. Box 645912 If You Became Incapacitated, Who Pullman, WA 99164-5912 Would Make Decisions for You?, Fax: 509-335-3006 FS 332 Tel.: 1-800-723-1763 [email protected] http://pubs.wsu.edu/

Agricultural Publications University of Idaho P. O. Box 442240 Moscow, ID 83844-2240 Fax: 208-885-4648 Tel.: 208-885-7982 [email protected] http:/info.ag.uidaho.edu/ A more recent revision exists, For current version, see: https://catalog.extension.oregonstate.edu/sites/catalog/files/project/pdf/pnw315

Pacific Northwest Extension publications are produced cooperatively by the three Pacific Northwest Land-Grant universities: Oregon State University, Washington State University, and University of Idaho. Similar crops, climate, and topography create a natural geographic unit that crosses state lines. Since 1949, the PNW program has published more than 550 titles, preventing duplication of effort, broadening the availability of faculty specialists, and substantially reducing costs for the participating states. Published and distributed in furtherance of the Acts of Congress of May 8 and June 30, 1914, by the Oregon State University Extension Service, Washington State University Cooperative Extension, the University of Idaho Cooperative Extension System, and the U.S. Department of Agriculture cooperating. The three participating Extension Services offer educational programs, activities, and materials —without regard to race, color, religion, sex, sexual orientation, national origin, age, marital status, disability, and disabled veteran or Vietnam-era veteran status—as required by Title VI of the Civil Rights Act of 1964, Title IX of the Education Amendments of 1972, and Section 504 of the Rehabilitation Act of 1973. The Oregon State University Extension Service, Washington State University Cooperative Extension, and the University of Idaho Cooperative Extension System are Equal Opportunity Employers. $2.00

Published February 1988; reprinted June 2003.