1407_KJ for non-profit purposes provided the text remains intact and the source is acknowledged. Enquiries should be sent for discuss issues related to treatment with a clinician. Although this guide is copyright, you can freely reproduce it This guide is NOT a replacement for medical advice and we strongly recommend that you or the person you care resistant recurrent. orvery illness whichissevere, chronic, treatment are caring for someone who has a mental this guide is most suitable for people who take care ofyourself. The information in the personal impact of theillnessand to and adolescents) and ways to cope with considerations when caringfor children is 18 years or over (there are additional help aperson with mentalillness who and suggestions about how you can designed for you. It involves information with mentalillness, thisguidewas source for aperson ofsupport primary friend who is 18years or over and a If you are a family member, or partner much without illness mental one’s loved a with faced be information onwaystodealwithitanditsimpacttheirlife. may friends and partners family, However, and friends.Significantpeopleinaperson’s lifeare oftenasource ofsupportwiththeillness. Mental illness can affect notonlythelifeofpersonwithillness, but also their closefamily, partners Caregivers ofpeoplewithmentalillness A GUIDEFOR to Claire Kelly [email protected] Caregivers ofpeoplewithmentalillness www.mhfa.com.au Mental HealthFirst AidAustralia with experience and expertise indealing experience andexpertise with disorder, clinicians and researchers, all panels ofcaregivers,bipolar peoplewith opinions andconsensus of international combined the latest research withthe this guide resulted from a study that The information and suggestions in you are aperson with bipolar supporting was used to create this general guide. If analysed and the most general advice guidelines resulting from this study were Disorders 2011; 13: 556 - 70). The consensus study.Delphi expert Bipolar of peoplewithbipolardisorder: a Development of guidelines for caregivers bipolar disorder.with (BerkL, etal. can beatrialanderror process. works for youyour todealwith situation experiences differ as well. Findingwhat comes in many different forms. Caregiving may berelevant toyou. Mentalillness Not alloftheinformation orsuggestions www.bipolarcaregivers.org guidelines specific may bemore appropriate for you. more the disorder,
Caregivers of people with mental illness Mental Health First Aid Australia www.mhfa.com.au
1: Know the illness 2: Treatment and 2.3. Complementary and alternative therapies and self- In order to be an effective caregiver for management help strategies a person with a mental illness it helps to 2.1. Medication be properly informed about the person’s There are a small number of mental illness. This includes knowledge Not everyone with a mental illness complementary, alternative and self-help about the symptoms, prevalence, risk requires medication, but for some, it will strategies which have demonstrated factors and treatment options. become an important part of keeping effectiveness in treating mental illnesses. well. Taking ongoing medication (even Different therapies have been shown to Sources of information can include when the person is well) can help to be effective for different illnesses. Consult talking to the clinician, reading good- prevent relapse, reduce hospitalisations reputable sources for information, such quality, reputable websites and books. and suicide risk if the illness is episodic as the beyondblue “What Works” books You can also learn a lot from memoirs and severe. Specific psychological (see link in chapter 1). written by people with mental illness treatments, illness self-management and their caregivers, but it’s important strategies and good support from Most therapies, such as self-help books to remember that those stories are very caregivers and clinicians can also help based on cognitive behaviour therapy, personal and individual, and may not people to keep well and enjoy life. have been shown to be most effective reflect your experience with caregiving. when guided by a clinician. Others, It is useful to learn what you can about such as exercise and massage therapy, These guidelines can’t give you all the medications. For example, while some may enhance a person’s response to information you need about mental medications begin to work quickly, treatment and improve mood symptoms. illnesses, but we recommend the others take days or weeks to be effective. following websites. Medications can have side effects. Some Many herbal supplements, naturopathic and homeopathic therapies exist which Depression: of these go away when the person gets used to taking the medication, or have never been evaluated for safety www.beyondblue.com.au or effectiveness. These should not be www.bluepages.anu.edu.au/ respond to a change in dose, but others are more serious and the person may used without consulting with a clinician Anxiety disorders: need to change medications with the and should never be used to replace www.crufad.com advice of their clinician if this happens. effective medications. If you are not sure www.ecentreclinic.org whether a complementary or alternative For more information about medications, treatment is safe or effective, seek and Schizophrenia: and what may happen if the person follow the advice of your clinician. www.sane.org tries to stop taking medication without 2.4. Reducing triggers of illness Bipolar disorder: advice, see section 4.1. and making lifestyle adjustments www.blackdoginstitute.org.au 2.2. Psychological treatment ‘Triggers’ are ‘stressors’ that increase Eating disorders: Psychological treatments can be effective the risk that the person will develop www.thebutterflyfoundation.org.au alone in managing mild to moderate symptoms. Recognising a trigger Substance use disorders: mental illnesses, but are generally not provides the opportunity for the person www.adf.org.au sufficient to treat a severe or complex to put supports in place to avoid illness. condition. This is particularly true in the case of psychotic disorders, where Common triggers include stressful life events, both positive (e.g. the birth of a For additional information about these medication is required to treat the positive symptoms. baby or a work promotion) and negative mental disorders, and many other, see ones (such as ending a relationship or the National Institutes on Mental Health The main psychological treatments losing a job), conflicts and interpersonal website: www.nimh.nih.gov that have shown benefit are cognitive stress, and the use of alcohol and other behaviour therapy, interpersonal therapy drugs. and family therapies. Many other psychological treatments are available To keep well the person may need to and may be of benefit depending on the make some adjustments to their lifestyle individual concerned and the needs of and goals. The extent of this adjustment the family and other caregivers. can differ from person to person. It usually takes time for the person to make these changes and work out how to live well with the illness.
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2.5. Developing a good support 3: Supporting the person person is severely ill or there is a risk system when they are ill to their wellbeing or that of others, they need emergency assistance (see ‘Dealing Many people with mental illness Caregivers differ in how much and what with a crisis’ section 3.2). Encourage the recommend developing good support type of support they provide (e.g. some person to focus on getting well as their networks. These networks usually help only when there is an emergency, primary goal. include family members and friends for while others also assist the person to companionship and to help with the try to prevent relapse). The type and Helping to monitor the illness illness when necessary. A clinician with severity of the illness will influence what Keep in contact with the person and whom the person has a good relationship support the person needs. There are observe, listen and tactfully enquire is essential. The support system may also lots of things you can do to help, but about how they are. In this way you can include more distant acquaintances you need to work out what suits you, assist with monitoring the symptoms to such as a neighbour (for example to pick the person and your caregiving situation see if they are becoming worse. children up from school or collect mail (see ‘Considering how involved to be Helping if the person needs to go to when the person is in hospital) or work in helping the person with their illness’ hospital colleagues who are supportive. Peer section 7.1). Below are suggestions for support or mutual support groups can supporting the person in the different Some episodes are more severe than provide opportunities to communicate phases and severities of illness. The next others. While many people can be with like-minded people. chapter focuses on ways to help the treated at home, sometimes people with person prevent relapse and enjoy life. severe mental illness need to be treated in hospital for a short time. 3.1. Helping when an episode Hospitalisation may be recommended if: occurs • There is a crisis, such as the person There are helpful ways to communicate is severely ill and their functioning is with the person and support them when very impaired or they are in danger an episode occurs. of doing something with damaging or Communicating calmly life threatening consequences (see Recognising a When the person is ill, it is best not to ‘Dealing with a crisis’ section 3.3). communicate with them in emotional • Treatment and support does not trigger provides or loud ways (e.g. by shouting or very seem to help their symptoms. emotional expressions of concern). Keep • Changes to their treatment require in mind that the person is ill and try not close supervision of medical staff. the opportunity for to react impulsively to what the person • They need to address alcohol or says or does (e.g. if the person is irritable drug problems. the person to put try not to respond in the same way). • The person has symptoms that have Being supportive does not mean you a disruptive effect on their life, and supports in place have to agree with what the person says they need time out to focus on when they are ill. You can acknowledge getting well. to avoid illness. that what they say is very real to them (e.g. “I know you are convinced that you If the person has severe symptoms and should quit your job, but I am not so is finding it hard to function, encourage sure”). Validating the feeling behind what them to talk to their clinician or they say can be supportive (e.g. “I can mental health team about whether see you are feeling fed up with your job hospitalisation may be helpful. In some right now, but maybe you need to wait countries there are halfway houses, until you are a bit less upset about things which offer a peaceful and contained before making a decision to quit”). environment for people who are not too severely ill. This may also be an option for Supporting the person to access the person to discuss with their clinician. treatment If the person’s clinician recommends Encourage the person to contact their hospitalisation, encourage the person clinician or mental health team if they to seek voluntary admission to hospital have not already done so. You can offer rather than to be admitted against their to assist them to access treatment. If the will. Discuss with the person that going
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to hospital may be an opportunity Get help 3.3. Planning for times when the to take time off to get well, away If you think that things may be reaching person is severely ill from stressful demands. In extreme a crisis point, call the person’s clinician When the person is relatively well, you situations involuntary hospitalisation or mental health team and express can make plans with them about what may sometimes be recommended (see your concerns (if the person does not to do if they become severely ill. Making ‘Planning for times when the person is call them). Do not hesitate to call the plans in advance can help you to feel severely ill’ section 3.4). mental health crisis team, clinician or an more prepared. You can help the person If the person is admitted to hospital, you ambulance if a crisis occurs. If the person to be treated in ways they would prefer can: urgently needs to be restrained to stop to be treated when they are severely them from harming themselves or • If necessary, provide information ill by planning things in advance. This others, you might need to call the police. to assist with treatment (e.g. about is a type of advance directive. When If you are in danger, consider your own the person’s recent symptoms or the person is relatively well consider safety first and then get medical help for medications). discussing: the person. • Tailor your contact with them to Who to contact in a crisis If you do not get the help you expect from what the person is comfortable with, Find out who the person would prefer these emergency services, be persistent as the person may feel vulnerable you to contact if they become severely and contact another clinician or take about social contact. ill and you need to access treatment on the person to a hospital emergency • Take time to rest while the person is their behalf. There may be local service department. Sometimes caregivers find being cared for in hospital. options to assist the person in a crisis (e.g. that emergency health services are not mental health crisis team, ambulance). available or able to assist them in a crisis, 3.2. Dealing with a crisis You might also need to enquire if certain and they need to care for the severely • If the person is suicidal, see “Mental emergency services will assist a person ill person at home. If you are caring for Health First Aid Guidelines for who is very ill, but not in immediate a seriously ill person at home, make suicidal thoughts and behaviours.” danger of harming themselves or others. sure you have the necessary support If you live in a remote area where there • If the person is engaging in non- (e.g. from clinicians, appropriate family are no local emergency services, find out suicidal self-injury, see “Mental and friends). In a crisis don’t be afraid where you can get help if you need it Health First Aid Guidelines for non- to ask for assistance to prevent negative urgently. If the person has established suicidal self-injury.” consequences. a good relationship with a particular • If the person is experiencing severe It might be worth finding out about clinician over time, this clinician may be psychosis, or is psychotic and helplines in your area that assist people helpful in a crisis. becoming aggressive, see “Mental or their family or friends in a crisis, as Health First Aid Guidelines for When and how to act on their behalf these helplines can be a valuable source severe psychosis.” of support. Counsellors are usually You might need to discuss when to • If the person is using alcohol or other trained to listen and assist people to deal intervene on the person’s behalf (e.g. drugs and becomes aggressive, see with crises and they may offer referral when certain specific symptoms or “Mental Health First Aid Guidelines to appropriate services. Your local behaviour is present). If necessary, for developing problem alcohol telephone directory will have numbers discuss Power of Attorney agreements use” or “Mental Health First Aid of helplines in your area. to arrange for yourself or others to make Guidelines for developing problem urgent decisions on the person’s behalf, drug use”. Communicate clearly and calmly temporarily and in specific situations. In a crisis communicate with the What information to provide person clearly and calmly. It is also not a good idea to give the person lots of Based on their previous experience the instructions. Don’t argue, criticise or person may prefer certain treatments behave in a threatening way towards over others. Ask the person about them. If appropriate, give the person information that you may need to choices to reassure them that they have provide to clinicians or hospitals (e.g. some control over the situation (e.g. If information about the history of you are trying to distract them from their illness and treatment, and about risky behaviour, you could ask “Should their health fund and social security). we go for a walk or would you prefer to Reassure the person that you recognise watch a movie?”). the sensitivity and confidentiality of this information.
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What hospital or treatment centre the 3.4. Supporting the person after 3.5. Supporting the person with person can go to an episode mild ongoing symptoms or You might need to discuss what hospitals What people need after an episode of difficulty functioning will admit the person, as in certain places illness varies from person to person and Some people do not need or want hospitals might only accept people with even between episodes. The person may support with their illness between specific medical insurance or who have need time to get better, to get over the episodes. However, if the person has been referred by affiliated doctors. If impact the episode had on their lives, mild ongoing symptoms or difficulty there is a choice, the person may prefer and to resume their usual activities. You functioning they may welcome a little a particular hospital or treatment. Make may need to adjust your expectations of appropriate support. sure you have directions to the hospital the person. in case you need them. Ask the person if they have consulted There are a number of ways to support their clinician about ways to manage Involuntary hospitalisation the person after an episode of illness. these symptoms or difficulties, or what If the person has been severely ill in Consider the following suggestions: has worked in the past. Encourage the the past, you may need to discuss with • The person may need rest, routine, person to keep to a basic routine that them under what conditions to consider something to do, something to look includes regular sleep patterns and time involuntary hospitalisation. It might be forward to and love and friendship. If for relaxation. an idea to find out about involuntary you don’t know what they want or hospitalisation procedures in case you need, ask, without being domineering need to use them. Confirm with the or overindulgent. person that actions that you have both • Do things with the person rather agreed upon about obtaining involuntary than for them, to help to rebuild hospital admission are acceptable to their confidence. them and will not damage your long- term relationship. • Focus on wellness and positive behaviour, rather than illness and Who does what? problem behaviour. Focus on wellness If the person is usually temporarily • Encourage the person not to try unable to complete certain tasks when to get everything done at once, to and positive very ill, it may also be helpful to establish prioritise essential tasks and do less who does what to share some of the stressful activities. If the person finds behaviour, rather tasks. The person may be relieved to it hard to make a start on things, know there is a plan in place to take care encourage them to set a small of urgent responsibilities. manageable goal. than illness and • Offer assistance if the person has difficulties with remembering things problem behaviour. or concentrating (e.g. assist the person to remember appointments by writing them down).
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4: Helping the person to effects. Discussing these concerns may medication may relieve symptoms that keep well and enjoy life help to overcome them. the person finds particularly unpleasant (e.g. agitation or racing thoughts). In The person may also be forgetting to 4.1. Supporting the person’s this case you may also need to call the take medication. If this is the case, suggest medical treatment person’s clinician or mental health team strategies that might help (e.g. using a and express your concerns. The extent to which you are involved pill organiser or taking medication at with the person’s treatment is a personal the same time as doing another routine 4.2. Helping to reduce triggers decision which will be influenced be the activity). preferences of the person you are caring Although it is not possible to protect for, their clinician, and yourself, and will If you are concerned that the person the person from all stress, you and the also be affected by the severity of the has made a decision to stop or reduce a person you care for need to find ways illness. Although you may need to take medication without discussing this with to manage stress, reduce triggers and a more active role when the person their doctor, you need to address these maintain a lifestyle that helps them to is ill, you shouldn’t take over from the concerns with the person. Ask them why keep well. they have stopped their medications. person in managing their medication for Identifying triggers them. This can make you exhausted and Listen to their reasons and try to The first step is to get to know some undermine the person’s confidence. understand their point of view. If needed, offer the person a different perspective. of the triggers that may affect the You can also assist the person to For example, if the person is concerned person. It may help to have an idea of monitor the effectiveness of the about stigma, reassure them that taking what commonly triggers symptoms (see treatment or provide support if side charge and using medication to treat ‘Common triggers of symptoms’ section effects occur. Telling the person if you an illness is nothing to be ashamed of. 2.4). Some triggers will be unique to the see improvement in their symptoms Taking medication is an active coping person, so ask them what they think since starting treatment can be useful strategy not a sign of weakness. triggers symptoms or makes them feedback for them. Encourage the worse. Also think back to the person’s person to take an active role in making Encourage the person to talk openly previous episodes, and work out if there treatment decisions with their clinician about their medication with their were particular stressors that occurred and too have regular appointments clinician. just before they became ill. with their clinician to help monitor The clinician will be able to help to Lifestyle factors to encourage their progress. If treatments are slow address any incorrect beliefs the person You can support certain strategies the to work, or the person needs to try has about medication. If the problem person uses to reduce triggers and new treatments, encourage them to is unpleasant side effects, the clinician keep well. These might include regular persevere and not give up hope. may help the person to try a different sleep patterns, a sensible daily routine, medication or look at ways to reduce or What if the person decides to stop or a healthy diet and regular exercise. The eliminate those side effects. reduce their medication? person should reduce or avoid the Sometimes, people stop taking their To make an informed choice, the use of alcohol or other drugs and find medication, or do not take it regularly person may need to know that certain healthy ways to relax and unwind. medications do not work as well when or at the required dose. This may have Practical help been a joint decision by the person and they are stopped and then started again. There might also be practical things their doctor, in response to side effects Also, certain medications should be you can do to help reduce triggers or because the medicine is not effective. stopped gradually. If the person does want to stop their medication, they may such as cutting down the number of However, there are other reasons also need to discuss how to stop with responsibilities the person has at home why people stop or reduce their their doctor. when they are struggling with mild medications. Some of these can indicate symptoms. The person may also benefit a problem. For example, someone who If the person is well, ask them to from practical assistance if a stressful is developing an episode of psychosis consider the pros and cons of taking event occurs. Offer to listen if the may have lost insight and see no need medication, and what is at stake if they person needs to talk and they want to, for medication, or someone who denies relapse. Negotiate an agreement with discuss options for solving any problems they have a mental illness may be them to resume medication if signs of that are causing stress. refusing more generally to take steps relapse appear. Reducing conflict to manage it. Sometimes people refuse , If the person is currently unwell Some people with mental illness are to take medication because they are suggest that they wait until they are very sensitive to stressful interactions afraid of the stigma of mental illness and well to make such important treatment (e.g. conflict or distressing criticism), and its treatment, or concerns about side decisions. Remind them that their this can contribute to relapse. Mental
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illness can put a strain on relationships. normal and need to be distinguished from If there is conflict in your relationship mood symptoms. Emotions that depend with the person, it may help to find more on good or bad things occurring in out about good communication skills the environment usually resolve quickly, (see ‘Maintaining or rebuilding your causing minimal disruption to daily life. relationship’ section 5.4), and ways to It is important to keep an eye on mild express grievances that are not hostile ongoing symptoms between episodes, as and can bring about positive change. they increase the person’s risk of relapse. In relationships it is also important to But be careful not to constantly question communicate about positive things; everything the person says and does not only about problems. However, do for signs of illness, or it may be difficult not blame yourself for the occasional for them to enjoy the times when they emotional outburst. are well. Being very familiar with the 4.3. Helping to prevent relapse person’s pattern of illness may assist you by recognising warning signs of to distinguish if something is a warning illness sign or not. Some people who experience recurrent Communicating with the person about episodes of mental illness show their warning signs consistent early warning signs over time. Talk to the person when they are well However, they may not always be aware about how they would prefer you to of these changes. If you know the person’s communicate when you have noticed Some people warning signs, you may be able to help warning signs of illness so you are able them to recognise when they occur and to handle this as tactfully as possible. who experience to take steps to prevent relapse. If the Express your concerns in a way that is person does not want assistance with non-judgmental and unthreatening (e.g. recurrent episodes their warning signs, noticing when the “I have noticed that you have been a bit signs occur can make it easier for you to down lately”). understand the person’s behaviour and of mental illness plan how to respond to it. Let them know what warning signs you have noticed as soon as possible. Ask the show consistent Research studies suggest that learning person if they have also noticed these, ways to recognise and respond to and if they could be warning signs of warning signs may help reduce relapse. illness. If the behaviour you have noticed early warning signs There is some introductory information occurred in a previous episode, remind below and community and health the person about this, and explain that over time. services in your area may be able to this is the reason for your current provide additional training. concern. If you are unsure whether Knowing the person’s warning signs something is a warning sign, discuss this with them. If the person is anxious about To get to know the person’s typical becoming ill, reassure them that they can warning signs, first find out about deal with the illness and that you are warning signs that are common for a available to support them. lot of people, such as changes in sleep and appetite. Ask the person if they are aware of any warning signs themselves. Think about the last time the person was ill – what did you notice in the days and weeks leading up to the episode? It might help to write a list of warning signs so you can refer back to them. Identifying the person’s warning signs when they occur Be alert to changes in the person’s usual behaviour and thinking. Remember, though, that some variation in mood is
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4.4. Helping the person to gain Avoid focusing on the illness all the time 4.6. Stepping back to let the confidence and live well Whenever possible, do things together person do more for themselves Besides assisting the person with their that have nothing to do with the People can become used to caregiving illness, you can support their efforts to illness and let them know that they are relationships. Some caregivers find regain their confidence and make a good important to you. Try not to make the it hard to step back and adjust to the life for themselves. illness the central topic of conversation person’s independence, even though between you. Rather, relate to the they are happy that the person is Supporting the person to live well with person as the friend, partner or close well. This ongoing caregiving can be their illness relative they are. It can also be good for exhausting for you and make it difficult People may go through a natural grief family relationships if the focus in the for the person to develop confidence in process when coming to terms with family is not constantly on the person their own abilities. their mental illness. They may deny and their illness. If you think this may be occurring in your the illness or experience a number of situation, look at the benefits of being different emotions such as sadness, anger 4.5. Helping the person adjust less involved in caregiving than you were or shame. It can take time for people to wellness before. Take time to relax and focus on to adjust to the illness. ‘Recovery’ is a Being well can free the person to enjoy other aspects of your life, relationships, term used to describe “a way of living life, however, some people find it hard to hobbies or work. a satisfying, hopeful and contributing adjust to wellness. They may struggle to life even with limitations caused by the take on new opportunities that become illness”. Rather than being an end point available when they are well, or be that the person achieves, ‘recovery’ may reluctant to engage in social activities. If be an ongoing and very personal process the person seems well but still needs a lot of finding ways to manage the illness and of help, be cautious about automatically live well. assuming that they are finding it difficult When the person is well, encourage to adjust to being well. They may have them to do things they enjoy and that mild ongoing symptoms or ongoing are not too stressful. Adjusting to the difficulties in daily functioning and find illness may be easier for the person if it difficult to carry out their usual tasks Whenever possible, they set small manageable goals that (see section 3.5). However, if the person involve their interests, talents, skills and is symptom free and able to do things, do things together values. If the person needs to make but finds it hard to step out of the ‘sick changes to their job or study plans in role’ consider: that have nothing order to keep well, take time to listen • Stepping back and encouraging the and discuss alternatives, as this can be a person to do more for themselves. to do with the challenging time for the person. • Encouraging them to do things they Rebuilding confidence enjoy (e.g. visit friends or pursue a illness and let them Sometimes the illness can dominate the hobby), both on their own and with person’s life so that they forget their you. know that they are strengths, and abilities. You can help to • Reminding the person that although rebuild confidence by encouraging the they may have a lot to do, they don’t important to you person to do manageable things, especially have to do everything at once. things that involve their strengths and interests. When appropriate, mention • Asking the person when appropriate things you appreciate about them. However, for help or a favour, so they can be careful that this does not come across experience how good it is to be the as condescending or patronising. person who is doing the giving. When people manage to do things for • Discuss with the person how they themselves they develop confidence feel about the changes and demands and independence. What the person can involved in being well. manage to do may depend on how ill or well they are. Even when the person is ill, they may still be able to do things for themselves depending on the severity of the illness.
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5: Taking care of yourself 5.1. Helpful coping strategies to control the illness can also lead to frustration and disappointment. Caregivers are at increased risk of Certain ways of coping are more helpful becoming depressed and having other in reducing stress than others. Ways of Maintaining boundaries and setting health problems. As a caregiver, you coping that may be helpful include: limits. Learn to say “no” to demands that are unreasonable or unmanageable. need to take care of yourself as well as Getting organised. Although it might Keep in mind that although you can help, the person, or you might end up feeling take a little time, getting organised will the person needs to find ways to deal overwhelmed and burnt out. Although probably save you time in the long run. with their own illness. some caregivers report positive aspects Prioritise what is essential to do and of caregiving, this role can be very postpone or cancel other tasks. Arrange Acknowledge that you have needs too. stressful at times. to share or delegate certain caregiving Use the time when the person is well You might find that all your energy goes tasks and other demands. to focus on things that are important to you, besides the illness. Devote some into helping the person. However, if you Restore your energy. Making even a little time to doing things that you enjoy, and neglect your own health and wellbeing, time to do things that you find relaxing, maintain contact with friends and family. you may develop health problems. Also, or enjoyable may help to restore your you can’t provide optimal support if energy. If the person is severely ill Developing your own support system. your own health is compromised. There and cannot be left alone, arrange for There may be caregiver support are some suggestions below about ways someone else to be with them or for organisations in your community or to take care of yourself. respite care while you have a break. online. Having someone to talk to whom you can trust can make it easier to cope. Caregivers may also benefit from Get rid of unrealistic expectations. counselling to assist with the changes Dealing with a loved one who has a Taking steps to sort out problems. A and problems that sometimes arise mental illness can be stressful. If you try problem solving approach can be very from caring for a person with mental to live up to unrealistic expectations of useful to deal with difficulties. See box illness. Group information sessions or what you ‘should’ do as a caregiver you for an example of a problem-solving ‘psychoeducation’ for caregivers run might increase your stress levels and strategy. by trained health professionals can be become exhausted and resentful. Also, useful and help to reduce some of the having unrealistic expectations of what stress involved in caregiving. the person and their clinician can do Problem solving steps
The 4 problem solving steps are:
1. Cleary define what the problem is 3. Develop a plan of action and follow the plan To come to a clear understanding of the problem, without Decide what you need to do first to implement the solution blaming yourself or others consider how it developed, when it you want to try and work out a step-by-step plan. Then put occurs and why it is a problem. your plan into action. 2. Work out what solution or solutions to try by: 4. Review how the solution worked 1) Making a list of different ways to try to solve the Acknowledge the effort you have put into trying to manage the problem: Use your imagination. Ask others if you like. problem and congratulate yourself if the solution worked. Many It doesn’t matter how unrealistic the solutions are at problems require that you try different solutions before solving this stage. them. If the solution was not helpful or there are still parts of the problem that need to be solved, return to earlier steps 2) Evaluating each solution to try other solutions. Sometimes people learn from trying to • How practical or realistic is this solution in your solve a problem that there is another underlying problem that circumstances? needs attention first. • What are the possible risks and negative Some problems are more difficult to solve than others. Difficult consequences that may occur if you choose this situations can take time to change or may not even be able to solution? be changed. If this is the case, find ways to make things a little Are there ways to prevent or deal with these easier and enjoyable for yourself, despite the situation. consequences if they occur? • What are the possible benefits if you choose this solution? 3) Deciding which solution (or few solutions) you would like to try.
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5.2. Caring about your health 5.3. Adapting to caregiving changed try to rebuild the relationship (see ‘Maintaining or rebuilding your Sometimes caregivers find that they Caregivers can experience a range of relationship’ section 5.4). don’t have time to consider their own understandable reactions when trying to wellbeing. However, even small changes come to terms with the person’s illness At times you may feel like you want are important when trying to develop and its consequences. There are things to withdraw from the person or leave a healthier lifestyle. Rather than aiming that can make adjusting to the changes them. If this happens, don’t be critical of to lead the perfect lifestyle, try to a little easier. yourself. It may be a feeling that passes. incorporate small improvements such as You may be exhausted and need to take Coming to terms with the illness a little regular exercise, healthy balanced some time out for yourself. meals and regular sleep. After the person’s first episode of mental illness, caregivers may go through On the other hand, if you decide that Don’t try to save time when you are a number of stages that are part of a you cannot continue in your current busy by neglecting your own hygiene or natural grief process. These stages range situation and would like to leave or health. Avoid negative coping strategies from initial shock, disbelief and emotional withdraw from your relationship with such as drinking too much alcohol, turmoil, to gradual understanding, the person, you should first discuss smoking or overeating. acceptance, and hope. The grief may what you are going through with the person. You may be able to find ways to Reducing your own stress or depression return in times of difficulty. resolve some of the difficulties together. Picking up signs that your emotional If you experience emotions linked to Speaking to a counsellor or relationship health is deteriorating gives you the this natural grief process, allow yourself or family therapist can help. opportunity to take timely action to to grieve. Remember that while the keep well. If you notice signs of stress changes and losses connected to the 5.4. Maintaining or rebuilding or depression, develop a plan for coping illness are real, people with the illness your relationship (e.g. delegate more of your duties and and caregivers often find new meaning Mental illness can challenge relationships take time off). and ways to enjoy life despite the illness. and sometimes it takes a bit of time, Signs of depression include flat or sad Acknowledging your natural reactions patience and effort to maintain or rebuild mood or loss of interest in things. Other and deciding how to deal with the them. Once the person is more well, it symptoms include a lack of energy and situation may be possible to slowly regain some of the closeness you had previously. feeling tired, sleep difficulties, appetite You may experience a range of intense changes, feelings of worthlessness and emotions in response to the person and To do this, start by sharing activities you excessive guilt, and thoughts of death their illness. Some of these feelings may both enjoy. Begin to encourage giving and or suicide. People who are depressed be part of the process of coming to terms taking in your relationship. For example, may withdraw from social contact or be with the illness. Others may be reactions providing ask the person to start helping very irritable in company. They can find it to your situation. Acknowledging these more and accept their support when much harder to function at work or to natural reactions and deciding how to it is offered. Relationships that involve complete daily tasks. If these symptoms deal with them can make it easier to cope. more give and take can be less stressful persist for at least two weeks, don’t and more rewarding for both people. It If you are feeling angry, try to find a ignore them. Contact your doctor for is also important to communicate our constructive release for your anger (e.g. an assessment and to discuss treatment appreciation when the person does go for a walk, play sport, paint, write in options. something we appreciate. People are a journal, or talk things through with also more likely to continue doing the Some of the signs of stress include being someone you trust). If you are angry things that give them positive feedback. more irritable, short-tempered tense about something the person has done, or anxious than usual, having minor wait until you have calmed down to If the person is your partner and they aches and pains or feeling run down and discuss the person’s behaviour with them. have lost interest in sex due to symptoms becoming ill often. Delay discussing your angry feelings until of illness, offer companionship and allow the person is well and more able to yourselves time to rebuild your intimate deal with these issues (see ‘Using good relationship once. communication skills’ in section 5.4). Using good communication skills If you are feeling rejected, try to not There are ways of communicating with to take hurtful talk and behaviour each other about grievances that are personally. Do something you enjoy to constructive and are less likely to come distract yourself from feeling sad or across as hostile or critical. These skills rejected. If you are sad about the way take practice and time to learn. your relationship with the person has Practise active listening. People seldom
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take time to really listen to each other’s different solutions. Perhaps you could point of view. Difficulties and conflict are do things their way this time if they much easier to sort out once people agree to do things your way next time. understand where the other person is If compromise is not possible you may coming from. To actively listen you need need to agree to differ. Even people in to look at the person when they talk and a good relationship sometimes need to focus your attention on what they are agree to differ about certain issues. saying. Acknowledge what you hear by nodding, verbally indicating that you have 5.5. Recognising the positives heard or asking them to continue and ask Some caregivers find positive things for clarification to check that you have about caregiving, about the person and understood their viewpoint. Summarise about themselves that make it a bit easier what you have heard to check with the to cope with the person’s symptoms. For person if your understanding of their example, caregivers sometimes report viewpoint is correct, without adding that they have learnt from caregiving personal opinions or judgments. to be more tolerant and empathic and gained confidence in their ability to cope. Using a positive request for change can be useful if there is a specific behaviour Caregivers may also gain a new that you would like to see the person appreciation of the person’s positive change. This differs from criticism as it attributes, such as their creativity, their is not about what the other person has abilities or talents, or their courage done wrong. Instead, it is about what you in battling the illness. Some caregivers would like to see change. When doing report that acknowledging the person’s this, use ‘I’ statements. For example “I positive qualities helps them to deal with would like your help with …” “It would the mental illness. mean a lot to me if you would do...” Finally, remember that caregivers often Be specific without making too many do not receive the recognition they demands at once. Tell them how you deserve. Acknowledge what you do and think this could benefit yourself and the efforts you make, and be kind to where possible, the other person. yourself. Calmly express your feelings about the person’s behaviour. When doing this, address the specific behaviour that is bothering you rather than globally blaming the person. Use ‘I’ statements and suggest what the person can do in the future to prevent this from happening Acknowledge what again. If the person starts arguing, try not to engage in the argument. If necessary, you do and the simply restate your opinion and leave it at that. efforts you make, Work together to reach a compromise. Sometimes conflict can develop into a and be kind to struggle to ‘win’ the argument, leaving people feeling unheard and angry. Avoid yourself. this by working on resolving the conflict together. There are several ways you can do this. Spend some time separately listing ways to sort out the problem that suit you. Discuss these options together and aim to find something that is reasonably fair to both of you. If it is hard to find a solution that is acceptable to both of you, suggest a way to try out
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6: Taking care of yourself • If you are feeling very stressed during 7: Working with the in specific challenging and after a crisis, talk to someone person to deal with the you trust or contact a helpline. situations illness Caregivers may find that it is helpful to • Schedule a bit of time to relax and People with mental illness differ in think in advance about how they might unwind after the crisis, even if you what help they need and want from deal with specific challenges, such as a are very busy. caregivers, and caregivers differ in what pattern of more frequent relapse or Sometimes the effect of the crisis can support they are willing and able to crisis situations. linger after it is over. Try to restore give. Caregivers also need to take into your usual routine as soon as possible. account what support is realistic for 6.1. If the person is ill a lot of If some time after the crisis you can’t them to provide (e.g. to consider their the time stop thinking about what happened, other commitments and their own Some people have patterns of illness you feel distressed and unable to focus health). Some caregivers are unsure how that are more severe. They may relapse on everyday tasks, consider getting involved they should be in supporting the more frequently or their illness may be professional counselling. person. It can take time and a process of more resistant to treatment. This can trial and error to find ways to help the be very challenging. Don’t give up hope 6.3. If there is a lot of conflict person that suit both of you. as getting well can be a slow process. between you and the person Making agreements and plans together Patterns of illness can change and there Mental illness can put a strain on and working as a team with the person are things that may help to make it a relationships. However, not all problems and their clinician may help to reduce little easier to cope. are caused by the illness. Stressful the impact of the illness on both of you. interactions and conflict may be If the person you are caring for is ill a Talking with the person about the illness, distressing for both you and the person. lot, find out what resources are available its management and how you can help There are ways to try to improve to support yourself, the person and the may assist both of you to deal with it. family. Try to keep to your usual routines communication and rebuild your People generally need more support as much as you can and avoid isolating relationship with the person (see ‘Using when they are more severely ill or in yourself socially. If you are feeling good communication skills’ in section crisis. At these times caregivers might stressed, go easy on yourself – find ways 5.4). When trying to sort out problems need to reach out to other people or to give yourself a break, such as talking in relationships it can be useful to community services that can step in. to someone you trust, watching a funny consult a health professional who knows movie, or going for a walk. a lot about the illness and counselling If a caregiver constantly intervenes for relationships. in the person’s life, the person might It might help to make some lifestyle experience this as intrusive, and refuse changes to cope with the person’s 6.4. If the person is ill, irritable to ask for help when they really need it. persistent or recurring illness (e.g. and very critical of you Repeatedly telling the person what they rethinking the household budget, It can be hard to maintain perspective if should be doing to manage their illness adjusting your work hours or arranging the person who is ill is also very irritable might come across as nagging. Tell the for others to take over more tasks). and criticises you a lot. Finding ways to person that you would like to help them Suggest that the person gets a second detach and set boundaries without being to manage the illness, but do not want to opinion from an expert clinician on other drawn into arguments can be helpful. be intrusive or get in the way. When the ways to manage the illness. Ultimately, if It may help to detach from the situation person is well, ask them if the support you can’t change the situation, focus on a little by reminding yourself that you have been providing is appropriate. things that you can control. the person is ill. Don’t try to defend It is not always necessary to mention yourself by arguing logically with the 6.2. Reducing stress if a crisis the illness when encouraging illness person. Address the specific comments occurs management strategies (e.g. invite the or behaviour (e.g. shouting) that are Caregivers can feel exhausted and person to go for a walk with you because unacceptable or concerning, without overwhelmed when going through the dog needs walking, not because it criticising or blaming the person as an illness-related crisis. Stress can be might help the person’s depression). an individual. Say something like “I reduced if you prepare in advance for Also, keep in mind that not all support understand you’re upset but I’m not times of crisis (see also ‘Dealing with a has to be described as such; sometimes going to tolerate being spoken to in this crisis’ section 3.3). just sitting with the person can be way,” and walk away. Don’t be drawn into supportive or you can provide practical Ways to reduce stress in an illness reacting to their irritability or believing help or affection without discussing this related crisis: the criticism. in advance. • Reassure yourself that the crisis will pass.
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7.1. Negotiating caregiver the person needs additional supportive person’s wellbeing. Even if they can’t involvement contacts. You can’t always be perfectly talk to you about the person, you consistent either - unpredictable can still share important information It is best to discuss your involvement demands and circumstances do occur. If with them. when the person is relatively well. If you cannot provide the usual support, the person has only recently received a • In order to overcome restrictions try to arrange with the person for a diagnosis they may not be ready to accept on confidentiality, discuss with the back-up support person or organisation the illness or discuss its management. Invite person what information they would to step in. the person to share their views on what like the clinician to share with you helps people to manage mental illness. It is not always possible to implement and under what circumstances (e.g. Don’t feel obliged to use psychiatric exactly what is specified in a plan, but it if the person becomes very ill, or jargon. Many families have their own can provide direction and a basis from information to assist in the person’s ways of talking about the illness (e.g. which to work. You can have plans for ongoing care after discharge from feeling really down or very high). dealing with different aspects of the hospital). Ask the person to let their illness (e.g. a plan for dealing with suicide clinician know what you have agreed You could ask the person what you can risk and another for what to do when upon. do to help in specific circumstances (e.g. the person becomes depressed). what you can do to help when the person • Consider developing ‘power of struggles to get up in the morning when Sometimes people do not want to attorney’ agreements or advanced they are becoming depressed, or how to discuss their illness or to make plans. directives to arrange what you can assist them with their plans to prevent Even if the person does not want to do to help with urgent treatment or relapse). There is a possibility that the discuss illness management, having your other decisions when the person is person may not know what help they own plans can help you to be prepared. severely ill (see ‘Planning for times need. If you have some ideas about how when the person is severely ill’ you could help, discuss these options section 3.4). tactfully with the person. 7.2. Working with the person • While the person is severely ill, Through discussion with the person, and their doctor try to keep in contact with their you need to come to some agreement Some people with mental illness prefer treatment team. about the nature and extent of your to manage their treatment with their • When communicating with the involvement. For example, you might clinician as independently as possible. person’s clinician, don’t be afraid agree that you will provide specific Others welcome the opportunity to to ask questions, or to ask for support when it is needed, and the form a team with their clinician and clarification if the information person will try to let you know if they caregiver to deal with certain aspects of provided is confusing. notice any of their warning signs or treatment. If you would like to play an need help. Consider formalising the way active role in assisting the person with Even with good illness management, you help into a plan. aspects of their treatment, here are relapse can and does occur. If this some suggestions: happens and the person is disappointed, When creating a plan: • Discuss with the person the support them by: • Keep your plans simple so they are possibility of working with them • Listening if the person wants to easy to follow. and their clinician. If you would like discuss their disappointment. • Consider writing your plans down to accompany the person to an • Reassuring the person that they did and keeping them in an easily appointment, offer to do so. their best. accessible place. • Ask the person to let their clinician • Suggesting that sometimes • Review your plans as circumstances know that you are the primary medications and other illness change or you acquire new caregiver and your contact details in management strategies need to be information. case there is an emergency and the adjusted. clinician needs to contact you. When making your plans, you need to • Encouraging the person not to give commit only to actions you feel you can • Find out about confidentiality laws up hope, as finding what works to be reasonably consistent in taking. For that may restrict clinicians from manage the illness is a trial and error example, don’t commit to being available being able to provide information process. for phone support at all times of the day and discuss their patient’s treatment and night if you have to look after small with you. children or can’t be contacted when • Keep in mind that you do have the you’re working. You might instead agree option of contacting the clinician that overnight or during business hours if you are concerned about the
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7.3. When the person has an episode of psychosis they may have 8: Dealing with stigma, difficulty with their illness lost insight and see no need for help, in discrimination and management strategies which case you might need to seek help for them anyway. disclosure It can be difficult for the person to use Dealing with stigma or discrimination strategies to prevent relapse or reduce If the person refuses to get their illness from others can be difficult and painful symptoms because they may need to treated for both the person and the caregiver. go against what their mood tells them Mental illness that is not treated and to do. For example, it can be very hard managed can have a very negative impact Stigma involves stereotyped beliefs to get out of bed and follow their usual on the person and their family. This is about the negative qualities of a particular routine when they are feeling depressed especially true for severe mental illness. group (e.g. people with mental illness). A and lacking in energy. person that is considered to belong to Try to understand why they refuse. this group is automatically considered If the person finds it difficult to use They may fear the stigma of mental to have the negative qualities connected strategies that may help them to prevent illness, and you can talk about this. They with the group. These beliefs distort and relapse you could: may have concerns about treatment, taint the person’s reputation and status. • Encourage them to keep trying. particularly medication (e.g. they may Stigma can come from external sources believe medication is addictive or that • Temporarily take a more active role (e.g. the family, friends or community). side effects will be intolerable) and these in assisting the person (e.g. help Sometimes, when people experience concerns could be discussed with an them to do an activity when they are other people’s stigmatising attitudes, expert. Assess how ill or well they are depressed by doing it together). they start to believe them. They may so you know how to respond to this see themselves as being less capable • Support them behind the scenes (e.g. refusal. or worthy than others. This is called maintain regular household routines If the person who refuses treatment is self-stigma. to reinforce the person’s routine). unwell, or their symptoms are escalating, Discrimination occurs when these If you have ideas about what might make you may need to seek help for them stigmatised beliefs are acted on and the illness management strategies, tactfully against their wishes. Get urgent medical person is unfairly treated. Stigma can discuss these with them. help in a crisis (see ‘Dealing with a crisis’ come from others or society in general, section 3.3). If you have developed a plan or be part of your own beliefs. Dealing 7.4. Difficulties in working with for such times, use it. with stigma and discrimination can be the person to deal with the difficult and painful for both the person illness If the person who refuses treatment is relatively well, recognise that the and the caregiver. It is not always easy to work together decision to accept treatment is their to deal with the illness. Good Caregivers who are concerned about own to make. Be patient and supportive, communication skills can sometimes stigma sometimes isolate themselves and try to negotiate with them to get help to sort out disagreement and from social contact and become treatment if they develop symptoms. conflict (see ‘Using good communication depressed. Consequently, they may miss skills’ in section 5.4). You may also find Over time, the person may come to out on valuable sources of support and that the person does not always want accept the importance of accepting or enjoyment. your help or they may refuse to treat or seeking treatment. If they do not, you 8.1. Ways to deal with stigma manage their illness. may need to try a new approach. Talk and discrimination to the person about the way the illness If the person does not want your help is impacting their life, your life and the Become informed You may find that the person does not lives of others, and how treatment could Most stigma is based on a lack of always want your help. It may be that improve this. Ask them to consider information and understanding about they are able to manage well without it, strategies to minimise the risk of the illness. Being well informed about and this is fine. They prefer to work with relapse, for example, avoiding alcohol the illness can help you to recognise someone else on their management and other drugs. You may also benefit and correct some of the misconceptions strategies, in which case you should help from consulting a clinician yourself, or involved in stigma. them to find the right person. speaking to someone else that you trust. Mix with people who accept the illness However, it may be that they are Many caregivers find it rewarding to depressed and irritable and pushing you attend a support group where they and away, or isolating themselves. If this is the the person they care for are accepted, case, try to maintain contact and ensure and mental illness is understood. they can reach you if they decide they need your help. If the person is having
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Think carefully before deciding to speak 8.2. Disclosing the illness or out against stigma or discrimination your caregiving role Some people believe that speaking The issue of disclosure can be a out against stigma that results in sensitive one for people with mental discrimination is always essential. illness and their close family and friends. However, whether or not to speak out You and the person have a right to against stigma or discrimination is a privacy. This means that you need to be personal choice. What you decide might cautious about who you tell about the differ depending on the circumstances. person’s illness or your own situation. When you and the person you are However, keeping the person’s illness a caring for are deciding whether to secret from close family and friends, due speak out or not, consider how stressful to concerns about stigma, can eliminate this may be, whether there may be potential sources of support and lead negative repercussions, the likelihood to isolation. that speaking out may change people’s attitudes, and whether to disclose your It can be difficult to decide who to tell own situation or just speak out against and what to say about the person’s stigma generally. illness or your situation. Consider who needs to know, and the positive It is important to let the person decide and negative implications of sharing how they would like to respond to the information. Consider as well how stigma and discrimination from others. much information you wish to share, Only encourage the person to take a and how. stand against stigma and discrimination, if this is not too stressful for them. If friends or relatives avoid you due to stigma, develop other more supportive If the person is experiencing a high relationships. level of self-stigma, encourage them to develop their abilities, interests, and a sense of purpose, as this might increase their self-confidence and resilience to stigma. Peer support groups where mental illness is accepted can provide good buffers against stigma for those affected. Remind the person that mental It is important illness is like other recurrent health conditions. to let the person decide how they would like to respond to stigma and discrimination from others.
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