Families, friends & carers

Attitude can make a big difference

Life isn’t always easy when you have a mental illness. Caring for someone in this situation often isn’t easy either. Developing a positive, practical attitude can make all the difference to supporting someone with a mental illness and to looking after yourself as well.

A positive attitude means:

• coming to terms with the fact that someone you care for has a mental illness
• developing a sense of balance in all aspects of being a carer
• preparing yourself to be a capable and well-informed carer.

Coming to terms

‘Coming to terms’ means understanding and dealing with the psychological and emotional effects of caring for someone who has a mental illness. It is essential to realise that neither the person with the illness nor you are to blame for it, and that you are not alone.

Distress about the illness may have caused other emotional reactions such as grief, anger, guilt or shame in brothers, sisters and other family members. Acknowledging these reactions is a first step to resolving them.

It is important to understand, too, that people affected by mental illness cannot deal with it simply by ‘pulling themselves together’ and that long-term treatment and support are often necessary.

Distinguish between the person and the effects of the illness. For example, someone with depression spending all day in bed is not ‘lazy’ but probably affected by symptoms and in need of treatment and support to deal with this.

Developing a sense of balance

Supporting someone who has a mental illness is helped by balancing a realistic understanding of how the illness has affected the person with a hopeful determination to help them achieve as great a level of recovery and independence as possible.

Talk to the treating health professionals or staff at a support organisation for advice on how to do this.

A balanced attitude means:

• a balance of expectation – sometimes we expect too much of someone, sometimes we expect too little. Try to adjust your expectations to the person’s capabilities at the time
• a balance of help – sometimes we try to do too much for someone, sometimes we do too little. Try to be involved at a level that is in the best interest of the person you care for and that is fair to yourself and others
• a balance of emotion – sometimes we are overemotional, sometimes we withdraw emotionally. Try to show concern in a caring and matter-of-fact way, avoiding being over-emotional or unemotional
• a balance of time – sometimes we may give someone too much time, sometimes we may have too little time for them. Try to share time between the person who has a mental illness and other family and friends. Make sure you have time to yourself too
• a balance of activity – sometimes we may give the person too much to do, sometimes we may leave them too little to do. Try to encourage a level of stimulating, healthy activity that is realistic, and at times that suit everyone.

Preparing yourself

This means understanding some of the basic principles of being a carer, as well as learning as much as possible to help you, especially about what support services are available for family and other carers.

Realistic expectations

It is essential to accept the person as they are now and to have sensible expectations of what can be achieved and how long it may take.

They may also need encouragement to make realistic plans for work or study. Try setting modest, concrete goals at first to work toward this.

These goals should be practical as well as positive, acknowledging the need to reduce stress and avoid taking on too much – for example, by working part-time or by taking study courses one at a time instead of all at once.

The need for stability

Often it is only when the symptoms – such as persistent feelings of hopelessness or delusional thinking, for example – are controlled, that the person can begin to focus on the everyday things in life.

Once these acute symptoms are being managed as well as possible, you will then be able to offer effective support more easily. In other words, the person needs to be receiving and cooperating with the treatment they are prescribed.

Encouragement of responsibility

Mental illness can have a serious effect on how people feel about themselves – their sense of self-esteem and responsibility.

Encourage the person to act responsibly towards themselves and others as much as possible. Development of personal responsibility, with the dignity and respect this brings, is an important aim of being a carer.

Learning about mental illness, treatment and support

Learn as much as possible about mental illness and psychiatric disability. Find out, too, about treatments and what clinical and disability support services operate in your area.

Understand and accept that symptoms may come and go, may vary in severity, and that different degrees of support may be needed at different times.

Contact a carer support organisation for information and advice as soon as you find yourself in a caring situation – see ‘Finding support’ in this guide for more details.

Deciding what you can and can’t do

Decide what level of care and support you are realistically able to provide.

It is important to then explain this to the person you care for and any health professionals or support organisations involved. The support you are unable to provide should then be arranged in collaboration with the psychiatrist or case manager, for example.

Talk with the person with the mental illness about the support and care you are able to provide and go over any decisions with them.

Discuss options for the future with the person you care for, as well as health professionals, family members and friends, to plan for when you are unable to fulfil this role – see ‘Looking ahead’ in this Guide for more details.

Support is essential for families

No one should ever think they have to carry out their caring role without support.

When you care for a family member or friend who has a mental illness, you shouldn’t feel you need to do everything yourself.

Find out about the treatment and support services which are available and discuss together what is practical and reasonable for you to do personally. Enquire about any carer support services too.

Use this guide as a starting point to look at the range of possible support and call 1800 18 SANE (7263) for more details about any of the services described.

Family and friends

Talk over the caregiving role with any relatives, friends or others you feel might be able to help, as well as with the person affected by the illness.

You may be surprised how willing people are to give support once they understand mental illness and its effects. It is natural to lack confidence at first about asking for support, but once you speak out it begins to come naturally.

Some people can be wonderful from the start. Confide in them and let them help. Others may not be quite so understanding at first, but if you tell them how you feel, and explain about the effects of mental illness, they will begin to be more supportive.

There may be others who have difficulty understanding and will not be helpful. That is their problem, not yours.

Support for family and other carers

Carer support organisations such as Carers Associations, Associations of Relatives and Friends of the Mentally Ill (ARAFMI or ARAFEMI) and Mental Illness Fellowships offer education and training courses, and self-help groups providing mutual support.

It is often helpful to talk with others who have had similar experiences, to learn more about the effects of mental illness and what your options are, so that you are in a better position to make decisions.

Going along to a group like this helps you to feel less isolated and to realise you are not alone. See the ‘All in the family’ section of this guide for details of specific support for different family members.

Other ways to find support:

• ask the treating health professionals about carer support organisations in your area, or call 1800 18 SANE (7263) for more information
• Details of Carers Association services are available at www.carersaustralia.com.au or by calling 1800 242 636.
• Details of government services for people with a disability and their carers are available the National Disability Insurance Scheme website (www.ndis.gov.au). or by calling 1800 052 222.

Mental health services and support

You will be better prepared for dealing with the health system if you understand how it operates in your local area.

Regional mental health services

Most areas are now covered by regional mental health services, which have their own clinics and 24-hour assessment and treatment teams to help people in their own homes. People are generally admitted as in-patients to psychiatric wards only when they are severely unwell. There may also be separate services for people under 18 or over 65.

Case managers and carer consultants

As well as a treating psychiatrist, the person may also have a case manager who coordinates and provides some of their mental health care. This may include seeing a psychologist, social worker, occupational therapist or other health professional. Some services employ a carer consultant to liaise with family and friends.

GPs

After a time, some people only need to see their GP for treatment, and are in contact with the mental health service if they become unwell again. As well as overseeing physical health, a GP can also set up a Mental Health Plan and refer people for treatment to a private psychiatrist or to a psychologist or other appropriately-qualified health professional for psychological treatment.

Involuntary treatment

If someone refuses treatment, and their health and safety, or the health and safety of others, is at risk, then the treating health professional can apply to have them treated involuntarily for their own sake.

This may be as an in-patient, or under a Community Treatment Order where they can continue to live at home, but treatment is supervised by a doctor or other health professional.

Building a good relationship with health professionals

Building a good relationship with the doctor, case manager or other treating health professional is important for family and friends who are carers, as well as for the person with the illness.

If you are able to do this and are well-informed about the situation, they are more likely to listen and be cooperative in providing help. It can help to write down and take along any questions you want to ask, and to note down the answers at the time.

Don’t assume that families or carers will be included in treatment

While National and State mental health policies promote inclusion of family and other carers in treatment, be prepared for the fact that some health professionals are not used to communicating and working cooperatively with families. They may inappropriately use ‘patient confidentiality’ as a justification.

Be polite but persistent. If you feel your concerns are not being taken seriously, put them in writing to a higher authority such as the area mental health service manager or the Chief Psychiatrist in your State.

What if the person is too unwell to decide about medical treatment?

An ‘advance directive’ is an agreement where the person with the mental illness requests someone else to make decisions about treatment when they are unwell and can’t make reasoned decisions themselves. If you think this would help, discuss it with the person and their doctor or case manager.

While an ‘advance directive’ can be made a legal document (as a medical power of attorney), its main advantages are to formalise trust between the person requested to make decisions and the person with the illness, and to act as a reminder if that person becomes unwell.

What about private health insurance?

For people with a mental illness, private cover means that, compared to relying on the public system, it’s generally easier to be admitted to a private hospital and to be able to stay longer.

This is especially useful for women of child-bearing age, as pregnancy can trigger relapses in many mental illnesses. ‘Extras’ cover can also be used to help cover the cost of seeing a psychologist. These benefits may make the cost worthwhile for those who are able to afford the premiums, although having a pre-existing condition will affect the cost.

Medication

Medication can be one of the best ways to treat some mental illnesses, yet some people don’t take it as prescribed for a variety of reasons.

They may be concerned about side-effects. They may not recognise that they are ill, or feel that they don’t need medication once symptoms improve. They may become confused about the number of pills they need to take and what times to take them.

When planning for the future, it’s important to understand these reasons and to discuss with the person and treating health professional what the best options are to ensure their ongoing mental health care – for example, regular appointments for monitoring of symptoms, or taking medication monthly by injection.

For further information, see ‘Medication and other Treatments’.

What about physical health?

People with a mental illness may be in poor physical health if they smoke, have a poor diet or are overweight and physically inactive because of the effects of their illness and sometimes of their medication too. This is why people with psychotic illnesses such as Schizophrenia have a higher risk of physical health problems, such as diabetes and heart disease.

Encourage the person to think about their physical health. A check-up by a GP is a good start, followed by a routine of regular check ups, including blood glucose monitoring, weight and waist measurement, and pap tests and breast checks for women.

Regular dental and eye checks can sometimes be arranged at reduced cost or no cost through a case manager or at a community health centre. Vaccination against Hepatitis B and tetanus are also recommended.

Try to see a regular GP

This helps the doctor get to know the person and their medical history.

Ideally the GP will understand mental illness, keep up-to-date with developments in treatment, listen sympathetically, and be aware of services in the local area. It helps if they bulk bill.

Healthy eating and exercise

Encourage a healthy lifestyle and diet, emphasising how this improves mental health too. Encourage the person to eat fewer fatty foods and more fresh fruit and vegetables. Too much caffeine in coffee, tea, cola or energy drinks may reduce the effectiveness of antipsychotic medication and should also be gently discouraged – by offering tasty alternatives, for example. Exercise is important for all of us. A 30 minute walk daily is a big step towards being healthy.

If the person smokes, talk to them about quitting. Not smoking is not only healthy, it can help medication work better at lower doses and it also saves money.

For further information, please see ‘Healthy living’ and the 'Guide to a Smokefree Life' 

Be aware of the ‘wellness trap’

When someone has a mental illness such as Depression or Schizophrenia, medication can be effective at controlling the more obvious, acute symptoms so it may be easy to assume they are ‘well’ again when these symptoms are no longer present. This is the ‘wellness trap’. It is important for the person taking the medication and others to understand that if they stop, or reduce the dose too much, then symptoms are likely to reappear.

Being free, or freer, of psychotic symptoms after many years can also be a strange experience. Having spent so much time and energy coping with symptoms such as hearing voices or paranoia, for example, means that being free of them can be a strange experience. It can be helpful when this happens, therefore, to encourage the person to talk about how they feel, and to become involved in new activities.

Any mental illness can leave people with low confidence and self-esteem. When trying to pick up the threads of life or find work, they may find things have moved on in many ways, such as changes in workplace conditions or information technology.

In this case, encourage the person to attend a rehabilitation program or employment service, to re-familiarise themselves with what has changed.

When talking to support agencies (and even some health professionals), it may be necessary to remind them that recovery from mental illness is not simple, and that people continue to need understanding and support when their symptoms have been reduced.

This is the time when family and friends can also help the person make small positive steps towards social, recreational and vocational rehabilitation. They may also need to adjust their own expectations and reassess their caring roles.

Support services in the community

Helping someone access psychiatric disability support services can make a big difference to their quality of life and ability to live more independently – promoting recovery of social and living skills affected by mental illness.

They are often run by community organisations with funding from State or Territory Health Departments.

If the person you care for has a case manager or other key mental health professional, they should arrange referral to support services. If not, or there’s no key worker, then you can find out what’s available yourself.

Contact 1800 18 7263 or email This email address is being protected from spambots. You need JavaScript enabled to view it. to request details of community organisations in your local area.

Community health centres or the Citizens Advice Bureau (sometimes called Community Information Service) may be able to help, or try the State Health Department.

In some areas, particularly rural or remote regions, there are few or no programs providing accommodation, rehabilitation or other forms of support. You may wish to join with others to start up such a program and lobby for funding from government. Local politicians, business people and mental health workers may also be willing to help.

Being active in the community

People who need help from services sometimes feel they have ‘nothing to give’ and that they have little worth. Not surprisingly this can contribute low self-esteem and make the symptoms of Depression worse.

It helps to remind the person you care for that everyone has a unique value and can contribute to society in some way. This may be through part-time work or by helping others – working in a charity shop for example (a volunteer coordination centre can help here). It may be through membership of a rehabilitation program, taking part in activities and helping others, with household tasks for example.

Centrelink can refer people affected by mental illness to Job Network agencies, or to specialist DEN (Disability Employment Network) agencies to find work. These may help with job applications and interview skills as well as finding positions, and sometimes provide on-the-job support.

We all need to feel valued, appreciated and part of the community we live in. This is just as important for someone who has lived with the effects of a mental illness for many years.

Making use of other community services

Local councils, community colleges, churches and other organisations in local communities have programs and services which everyone, including people with a mental illness, can make use of for example:

• neighbourhood houses for social contact and short courses
• using the library to borrow books or access the Internet
• doing an adult education course
• for older people, the University of the Third Age can be a relaxed way of learning and meeting others.

A case manager or other mental health worker should be able to help the person access community services and accompany them if necessary.

Personal Helpers and Mentors Program staff and outreach workers from rehabilitation programs may, for example, be able to visit the person, have a walk and a cup of coffee, or go with them to concerts or a football game. These activities can help overcome isolation and improve connections with the local community.

Ideally, workers will also remember the person’s birthday or other significant dates. The local council office, public library or Citizens Advice Bureau can also help you find out what’s available.

Financial support

People with a mental illness and their carers may be entitled to a range of benefits and concessions.

What income is available?

The principal financial support for people who have a psychiatric disability is the Disability Support Pension, although some may be on the Sickness Allowance or NewStart Allowance. An advantage of the Disability Support Pension is that it is not assessed as taxable income. A Carer Payment is also available with certain conditions. Pensions can be paid directly into bank or credit union accounts.

Visit the centrelink website or call 132 717 to find out about payments available for carers and people with disabilities. Most Centrelink offices have specialist Disability Officers. Talk to them about what the entitlements are for you as well as the person who has a mental illness.

Besides any personal income and social security payments like the Disability Support Pension and Rent Support, check what other financial help is available. It’s sometimes possible to get one-off loans or grants from Centrelink for specific purposes – ask the Centrelink Disability Support Officer.

Concessions

For people on low incomes, concessions may be available for some services, such as gas, electricity and water, public transport, vehicle registration, dental and eye care, ambulance cover, telephone, and sometimes a taxi subsidy (if a doctor agrees the person can’t use public transport). Any extra income encourages more independence.

Managing money

Encourage the person to manage their own money as much as possible. It may seem easier to do things for them, but it’s better in the long-term if they can use an ATM and pay bills themselves. Bank charges can be expensive for people with small accounts, so discuss opening a Credit Union account – similar to a bank account, but cheaper to operate. Centrelink and local councils often have staff to advise on budgeting and may be able to help with managing money.

People with some illnesses, such as Bipolar disorder for example, may spend money irrationally when they become ill – for example, running up excessive credit card debt or giving money away.

Discuss ways of dealing with this with the person when they are well, such as agreeing to freeze their bank account in certain circumstances, or arranging an ‘enduring financial power of attorney’, see ‘Looking ahead’ in this guide

Would legal support help?

If there are concerns about mismanaging money when the person is unwell, they can sign a simple legal document giving a trusted person ‘enduring financial power of attorney’.

This means they can handle their own money as usual, but if they become ill the person with power of attorney can manage things. Discuss this with the person you care for. Ask an understanding solicitor to draw up the document. (A letter from the person’s psychiatrist confirming they are mentally well at the time of signing will help this process.)

Somewhere to live

A stable home helps a person with a mental illness cope better and live more independently in the community. It also helps give them a sense of security and the feeling of being part of a neighbourhood.

Living in the same place means the person stays in the same mental health service area and can build a good relationship with their health team. It reduces the risk of drifting into unsuitable accommodation or becoming homeless. When you’re planning accommodation, think about location – for example, is there easy access to shops, transport and mental health and support services?

Talk to the person you care for about long-term accommodation. Where would they like to live? If they live with parents, what will happen when the parents are no longer able to provide care? How independent is the person? Do they need more support? Discuss these questions with other family members and the case manager.

The person you care for may be reluctant to think about all this, but emphasise that it will have to be done eventually. The sooner they are able to live more independently and have other supports in place, the better it will be for them.

What are the accommodation options?

Options vary from area to area – ask the case manager for information.

Public housing generally costs less than private rental accommodation. In some States, people with a psychiatric disability have priority on housing lists. Some local councils provide housing for people with disabilities.

Supported accommodation (sometimes called a group home) may be available through community-based agencies such as the Richmond Fellowship or the Mental Illness or Schizophrenia Fellowships. Supported accommodation usually means a home shared with others who have experienced mental illness, with a support organisation providing help with day-to-day living.

When you’ve decided on the best accommodation, look at making this a reality, by putting the person’s name on any waiting lists, for example. If living with family is best for now, think about how this could be done more independently – maybe in a ‘granny flat’ where, with support, they can do more for themselves?

What accommodation support is available?

Local support services can also help someone live more independently.

This may be available from a team at the local mental health service, the outreach arm of a rehabilitation program, or from other community agencies or the local council. This may include anything from having Meals-on-Wheels to getting help with cooking, cleaning, budgeting or social outings.

Respite care

Respite programs are another option which gives family and friends acting as carers time out to take a break, while giving the person with a disability some experience of living more independently. Contact the Carer Respite Centre in your local area on 1800 059 059 for details.

Multicultural services

In some areas there are special psychiatric units which provide bilingual psychiatrists and other services for people from culturally and linguistically diverse (CALD) communities. Contact the treating health professionals for details. They should also have access to a 24-hour Translating and Interpreting Service.

For further information, please the multilingual factsheets on mental illness.

See also, Mental Health in Multicultural Australia at www.mhima.org.au.

Assistance with human rights

We all have the right to dignity, safety and equal opportunity. If you or the person you care for feel you have not been treated fairly, there is a range of agencies which can help, including:

• Citizens Advice Bureau
• Australian Human Rights Commission, see www.humanrights.gov.au or call 1300 656 419.

Political support

The State and Federal members of parliament for your area have a duty to represent your interests.

Do not be shy about contacting them and enlisting their support. Do what you can to educate them about the issues faced by people with a mental illness and their family and friends. Ask them to raise specific issues with a relevant Minister, or in Parliament.

In a crisis

Despite everyone’s best efforts, crisis situations can occur.

• See ‘Learning new skills’ in this Guide for how to develop a crisis plan.
• See ‘In a crisis’ in this Guide for a summary of what to do when someone becomes unwell.
• See also the seperate SANE factsheet 'How to help in a crisis'.

For more detailed information about treatment and support, see ‘Medications and other treatments’.

Practical ways of giving support

Learning the skills focuses on ways of caring that many people have found helpful in their experience of supporting someone with a mental illness.

They centre on a united, agreed approach by everyone involved, and on sharing responsibility. They encourage a sense of structure in day-to-day life. They recognise the need to combat loneliness and boredom by gently introducing new routines, social situations, people and activities.

Sometimes caring for someone with a mental illness can be more difficult than usual. The person may talk about suicide, be verbally aggressive or even violent. You may feel that you are being ‘manipulated’ or that the person is stirring up conflict among family and friends.

You may feel confused about how to respond to such behaviour, or you may have reacted in a certain way for years and now want to change. This section discusses ways of responding to these situations which can help everyone involved.

Remember that if one method doesn’t work, there are usually alternatives to try. Remember, too, that it is unreasonable to expect too much progress before medication or other treatments start to take effect.

If symptoms persist, ask the psychiatrist or other health professionals about other things the person can do to help cope with them.

Working together

Ideally, caring involves a ‘team’ approach so that it’s not all left to one person. Make sure everyone understands the illness and its effects, and that no one is to blame. Encourage others to:

• know the signs of when the person is becoming ill again, so help can be called on to reduce the chance of a major episode of illness developing
• reduce any stresses at home that may contribute to triggering an episode
• realise the person may have delusions and other symptoms which feel real to them and that this can make things difficult for everyone.

It helps to write these down together with important numbers to call in a crisis, so that everyone has a common understanding of what to do.

If there’s conflict in the family

Mental illness sometimes divides family and friends – just when you all need to pull together. If this happens, encourage everyone involved to talk openly. If there’s conflict in the family, let things cool down before trying to work it out.

Is there something everyone likes doing together where they will be more relaxed, such as going for a picnic? Use this to help people air their problems and find a resolution. Let everyone speak and feel they are being listened to, including the person with the illness.

If things are still unresolved, try getting help from someone outside the family – ask the person’s case manager or other mental health professional to suggest someone to provide counselling. Carers Associations also have counselling services especially for family and friends who provide care.

All family members have needs for attention and affection, and for respite from caring. It‘s easier to resolve disagreements if these needs are met.

Helping with everyday tasks

Everyday things like getting up in the morning or shopping can be challenges for people seriously affected by mental illness. Providing structure, keeping things simple and having fun, help everyone to cope.

Have familiar routines

Regular times for getting up and dressed, eating and doing other things help provide a safe, familiar routine and a structure for the day.

Routines should be predictable but not rigid, with gradual changes to prevent boredom. Have some ground rules and agree on what to do if they’re broken.

Helping Jo

Jo stays in bed until the afternoon. Her father is angry.

This isn’t helpful – “Get out of bed, you lazy girl. You’re not having any more meals in bed”.

But this is helpful – “Jo, we’re having lunch at one. Please come down – we like having you with us at mealtimes.”

Everyone needs to be firm and not take food to Jo’s room if she doesn’t appear for lunch.

Break tasks into small steps

This makes tasks more manageable. For example, if you’re encouraging someone to shower more often, help them get towels and choose clean clothes. Over time, try to encourage them to do these things themselves, one at a time.

Help with motivation

If the person shows no interest in doing things, or in other people, it may be because of their illness.

Having structure in daily life can help improve motivation – it’s easier to get involved in familiar activities than in unfamiliar ones.

Encourage and include the person in activities whenever possible, but don’t feel hurt if you’re turned down.

When dealing with routine things like getting up in the morning, try to keep things in perspective – if you’ve tried once or twice today without success, leave it. Try again the next day.

Remember, too, that lethargy may be caused by other reasons such as low iron or hormonal factors. A full medical examination will show if any of these is relevant.

Helping Ron

Ron is watching his brother play basketball outside.

This isn’t helpful – “Why don’t you join in, instead of sitting on your backside all day?”

But this is helpful –“Remember how we played together as kids, Ron? Come on, let’s have a go.”

Keep it simple

Mental illness can affect the brain’s decision-making function. People may keep changing their mind, or take a long time to decide about things that seem minor to everyone else. If the person is at a stage where they need encouragement to make a decision, allow time for them to do so. This shows respect for their ability to make decisions and promotes confidence in themselves.

Helping Alison

Alison is getting ready to go shopping with her mother.

“Mum, I can’t go with you. I look fat and ugly. Tell me what to wear and I’ll come.”

This isn’t helpful – “Okay then – the black dress makes you slimmer.”

But this is helpful – “I think you look good in all your clothes – I’ll let you decide. But remember we leave in half-an-hour, so be ready to go.”

Stimulation – not too much, not too little

Gentle introduction of new routines, new people, new activities and surroundings count as stimulation. Make it slow and gradual - too much too soon may seem disturbing.

Timing the introduction of something new is important. Where possible, start when the person shows any interest in an activity. Be encouraging. Begin with everyday things that can be done with familiar people – for example, ask them to come shopping to help carry bags, or to join in a simple game like table-tennis or frisbee. They may not seem to enjoy it at first - this often comes later, when they feel more comfortable.

Remember the balance – too much stimulation can be stressful and trigger symptoms, but with too little stimulation, the person may not function as well. Encourage them to work out what makes their symptoms worse – for example, late nights or noisy shopping centres – so you can find ways of dealing with them.

Give genuine praise

Think how rarely people with a mental illness are praised – and how much we all appreciate praise. Remind the person that joining in any activity, however small, is a step forward. Genuine praise and warmth are helpful.

Good communication

Some mental illnesses affect how well the brain takes in and interprets information.

Make what you say easy to understand – but without being patronising. It‘s sometimes difficult for someone with a mental illness to remember lengthy or complex information – like shopping lists or directions. Write information down, rather than expect them to remember it. But communicating isn’t just talking – think of other ways of relating to someone like doing simple things together.

It’s important that you communicate your own needs to others. Don’t do things you don’t want to do and silently resent it. Don’t be afraid to say ‘no’. Explain why – but try not to be apologetic or feel guilty.

Helping the person stay in touch

Although some people with a mental illness feel like being alone, they need contact with others.

It’s good if the person you care for looks after their own practical needs as much as possible rather than relying on others. However, encourage them to keep in touch with family and friends, no matter how briefly. Help them make new friends, for example through rehabilitation or recreation programs, where they can meet others and learn new skills.

Encourage family and friends to keep in touch with the person who is ill too. Loneliness is a distressing aspect of mental illness – simple friendliness from others helps people recover and feel part of society again.

Pet animals can also provide companionship. Having a dog encourages going for a walk and getting exercise once or twice a day, and is a also a good way of meeting and chatting to other people, in a park for example.

Involve the person with the illness in social events, but understand how hard this may be – reclusiveness may be a way of lowering stress and reducing symptoms. Respect this by not nagging them to socialise. Acknowledge the need for time alone, but encourage them to mix with others occasionally – for an hour or two a day, perhaps, or on certain days of the week.

Dealing with sexuality

New friendships may sometimes lead to sexual relationships. Talk openly about safe sex and contraception – get advice from a GP or case manager if you need it.

Some people with a mental illness may be preoccupied with sex, especially during episodes of severe illness, while others hardly think about it. Some find that medication depresses interest in sex or makes it more difficult.

Families sometimes worry unduly about sexuality. Encourage a responsible, safe attitude, but try not to make a big deal of it and create a problem where one doesn’t exist.

Drugs and alcohol

As with the population as a whole, some people with a mental illness use drugs such as alcohol, nicotine, cannabis, LSD, amphetamines (speed or ice), ecstasy or heroin. Everyone involved in care, as well as the person who uses the alcohol or drugs, needs to understand that they can worsen the effects of symptoms and make treatment and caring more difficult. They may also be illegal.

It’s especially important for the person to be honest with their doctor about any drug use, as it can interfere with the effects of medication and lead to unnecessary changes in prescribing. Addiction to nicotine is a major problem for many people with a mental illness, having a major effect on their finances as well as their physical health.

If alcohol or other drugs are a problem, suggest other ways of tackling the reasons they are used – talking to their doctor about adjusting medication or meeting new friends through rehabilitation or recreation programs, for example.

It may help if someone with similar experiences, who has given up alcohol and drugs, can talk to the person about the advantages of not using them. Avoiding alcohol, tobacco and other drugs could be part of an agreement for living at home.

Ask the health professionals for advice and see the SANE Guide to Cannabis & psychosis and Guide to a Smokefree Life which offers helpful advice for these situations.

Coping when things are difficult

It’s a good idea to have a plan of action in case of a crisis.

Consult the person you care for about a crisis plan as well as with health professionals, family and friends. Give everyone concerned a written copy of the plan, and keep it handy at all times. It should include the following and be reviewed at least annually:

• details of medication
• agreed action to take and wording to use in certain situations, for example if someone is suicidal or violent towards others
• name and phone number of key health professional to be notified, such as a case manager
• details of other professionals who can help, such as a GP, psychiatrist, or other health worker
• out-of-business-hours emergency numbers and the local police.

See also the ‘In a crisis’ page at the end of this guide.

Suicidal thoughts

People with mental illness sometimes think or talk about suicide. While such thoughts are not uncommon among people with mental illnesses, they do not always mean the person will take action – however, it is important to always take this seriously. Remember that the period when someone is recovering from an episode of depression or psychosis can be a risky period, as well as when they are severely ill – especially if they have been discharged recently from hospital.

‘Staying Alive’ has advice on managing and preventing suicidal thoughts, see ‘How others can help’, for further information on how you can help in this situation.

Remember that the Lifeline crisis telephone service is available 24-hours a day on 13 11 14. (Some States also have a Suicide Helpline, Crisis Helpline or Samaritans Helpline; see the ‘Health and Help’ section at the front of your local White Pages for details.)

‘Manipulative’ behaviour

Sometimes people feel they’re being ‘manipulated’ by the person with a mental illness. The person may tell untrue stories to one person about mistreatment by other relatives or friends, or may play on existing weaknesses so that people turn against each other. They may stir up conflict between family and health professionals.

This behaviour may be caused by delusions. It may be an unconscious way of gaining control over a seemingly chaotic world. But it can be harmful to everyone, including the person with the illness.

How do you handle this:

• try and establish if the person is acting in this way to get help. Make sure everyone understands why this behaviour happens and to be aware of when it is happening
• let the person know that manipulative behaviour will eventually turn everyone against them. Try to involve the person in activities that help make them less resentful toward others
• check stories about other people before you react to them. Try to ensure a consistent approach by family, friends and health professionals
• if suicide threats are used to try to influence or control others’ behaviour, contact the treating doctor. Tell the person kindly but firmly your reasons for doing this. Explain that it’s in their interest, that others have needs and rights too, and that everyone has agreed not to give in to such threats.

Aggressive or violent behaviour

Aggressive or violent behaviour is absolutely unacceptable, and the personal safety of you and everyone else in the family is paramount. Violent or aggressive behaviour can be caused by:

• psychotic symptoms – if there are symptoms like delusions, hallucinations or disordered thinking, call the health professionals promptly. Aggressive behaviour may mean the person has stopped taking their medication
• extreme stress – outbursts of aggression may mean the person feels under great stress. As well as external stresses in the person’s life, this can also be associated with tension at home. Try to keep the atmosphere open and relaxed. React to frustrations as calmly as possible
• alcohol or drug use – use of alcohol and other drugs can sometimes make people aggressive – ask the doctor, case manager or other health professional for help and advice on specialist services
• helplessness or fear – aggression or violence can be a reaction to frustration caused by the illness. Try to find out what causes these feelings and encourage more positive ways of handling them. Health professionals can help with this, through referral for psychological therapy or to an anger management course, for example.

Dealing with aggression

Here’s some tactics to deal with aggression:

• avoid confrontation
• sometimes it’s best to leave the person alone until they calm down
• speak firmly – sometimes a very firm ‘please stop’ helps a person regain control
• if you feel under immediate threat, leave immediately to keep yourself safe
• if aggressive behaviour persists, use your crisis plan (see earlier in this chapter) to keep everyone safe.

Report actual or threatened violence to the health professionals and, if necessary, call the police on 000. It’s important that the person gets help quickly and that no one is at risk.

If you believe someone may harm themself or others, make this very clear to the health professionals. If you feel your concerns are not taken seriously, put them in writing. Send copies of your letter to others such as the area mental health service manager, and even local MPs and State Health Ministers.

A person may use aggression to make you do what they want – if they get their own way it encourages them to continue. Get professional help.

If you live with someone who persistently behaves aggressively despite offers of help to deal with this, then discuss what can be done with the case manager or other health professional. Review what would be the best long-term living arrangements for both of you, and in some cases an intervention order may be necessary to ensure your safety.

Looking after everyone

When someone has a mental illness, family and friends are all affected in different ways.

Does mental illness run in families?

Anyone can develop a mental illness. But when a close relative is affected, you may worry that you or your children will develop the same condition.

Research suggests you can inherit a vulnerability to mental illnesses, however, it’s only one of many factors. It’s important to be reassured that most people with a close relative with mental illness don’t develop the same illness themselves.

If you’re concerned, ask your GP, or local mental health service to suggest a health professional who can give you more advice. Just as we can reduce our risk of physical problems like heart disease, we can also be sensible about the possibility of mental illness, by avoiding risk factors such as drugs and learning to manage stress, for example.

One thing is certain: no one is to blame for a relative’s mental illness. It’s common (especially for parents) to worry that something they’ve done – or not done – caused the illness. We all have arguments or stressful times with those we care about, but it doesn’t cause mental illness.

Some tips for coping

Developing a mental illness is a major event in someone’s life and will have a big effect on them. It’s natural that they and you will a feel a sense of loss and sadness about this, and it’s important these emotions are acknowledged and worked through.

It’s not helpful continuing to mourn the person who might have been, or who used to do this or that. Try to accept the interests and needs of the here-and-now person. This is a more helpful basis for a good relationship.

Just because we see the outward symptoms of someone’s mental illness doesn’t mean we understand what it’s like to experience that illness. The more we understand this, the easier it is to relate to the person. Learn about the illness. Try to imagine what it’s like to experience the symptoms at first hand.

Acknowledge that your feelings are valid and just as important as those of other family members. Face up to negative emotions like anger and resentment. They are normal and understandable. But remember that it’s not the person who’s making you feel these emotions – it’s the illness.

If you’re a parent

Parents of people with a mental illness will face challenges other parents don’t.

Most parents look back and wonder whether they could have done a better job of parenting. This can be especially true for parents with a child who develops a mental illness. Try not to dwell on this. It makes it hard to move forward. Remember that mental illness is no one’s fault.

Parents sometimes feel trapped in a never-ending parenting role. This is more likely if the person developed the mental illness as a teenager. But although loving support is important, the person needs encouragement to become independent as far as possible – and not ‘stuck’ in a kind of permanent adolescence with parents doing too much for them. This is essential for their own sake, as well as the family’s.

Parents may feel very isolated if they find it difficult to talk to others about their child’s illness. But once you start talking about it, it does get easier. You may be surprised at how supportive others are – and how many other people want to share their own experiences with mental illness in the family. When you talk you encourage others to do the same.

Wherever possible, avoid making the person with the illness the ‘axis’ around which the whole family revolves.

Like all carers, parents of people with a mental illness need to look after their own mental and physical health to avoid ‘burnout’. If you’re in good shape, it’s easier to look after someone else. Have regular health checks, and try and share the load as much as possible by enlisting support from friends and professionals. Try to have time out.

Care for your relationship with your partner. Having a son or daughter with a mental illness can put pressure on your relationship with your partner, although it can also draw you closer together. Try to support each other and have quality ‘couple time’. Try to maintain your focus on living and enjoying your own life.

If you’re a grandparent too

If your son or daughter with a mental illness has children of their own, you may need to help care for grandchildren for long periods or even long-term. It’s important to get as much support as possible and not feel you’re ‘doing it alone’.

Some tips that can help:

• if you are looking after a grandchild in the long-term, then it is possible to have them added to your Medicare card. Contact your local Medicare office for details of how to do this
• Centrelink can also advise on relevant benefits, such as the Foster Child Health Care Card and the Grandparent Childcare Benefit, which provides up to 50 hours a week of free childcare
• remember to schedule time for yourself to do things you enjoy and to relax. Your State Carers Association can provide details of respite care and other support
• use the tips and contacts in other sections of this guide to make sure your grandchild, as well as your son or daughter, has access to the information and support they need. See ‘You’re not Alone’ and ‘Joe’s Diary’ – guides specially for young people.

Looking after a small child again can be a challenging as well as a positive, loving experience. Make sure you get support for yourself – this may be legal, financial, emotional support, or help with childcare or respite.

The Council on the Ageing (COTA) runs special programs for grandparents raising grandchildren in a number of States. Contact COTA [LINK http://www.cota.org.au] to see what help they can provide. Meeting other grandparents in the same situation can help by providing an opportunity to share experiences and help you feel less isolated.

If you’re a partner

Having a partner with a mental illness means people often neglect their own emotional and other needs.

As well as a regular carer support group, find out if there are any partner support groups in your area too – people who are in a similar situation can be a great help to each other.

It can be especially demanding to care for someone when there are children as well, especially if they are young. Do not be shy of reaching out to ask for support from others, whether family, friends, neighbours or teachers, for example. See ‘Children of people with a mental illness’ in this section for how to help them.

If you’re a brother or sister

Having a brother or sister with a mental illness can be difficult. For example, when you’re young, you may feel reluctant to have friends over. There may be unkind comments at school. Schoolwork may suffer.

Brothers and sisters may feel:

• confusion at their sibling’s changed behaviour
• anger with disturbance at home
• embarrassment
• resentment because they think their family is different to other families
• under pressure to make up for having a sibling with an illness, by achieving well at school and not admitting problems, for example
• resentment that the sibling takes much of the parents’ attention
• guilt about all these feelings
• grief at the possible loss of the relationship with the brother or sister they knew before the illness developed.

Families should make time for young siblings to talk about their concerns. Involve them as much as possible in discussion and planning. Calm any fears that they may develop a mental illness themselves.

As adults too, people whose brother or sister has a mental illness often report a sense of frustration. They want to help, but aren’t sure how much time and effort to give. When they do try to help it may not seem to make a difference, and there may be concern about taking primary responsibility for caring when parents are no longer able to do this.

It’s important to understand what you can do and what you can’t.

What you can do:

• offer as much contact and help as you feel comfortable with
• learn as much as you can about the illness and its effects
• talk honestly about your feelings and encourage others in the family to do the same
• encourage the whole family to plan ahead for your sibling’s welfare.

What you can’t do:

• be totally responsible for your sibling’s welfare
• make your sibling behave in a certain way – for example, take their medication
• make things better by pretending the illness isn’t there
• feel you should solve all your sibling’s problems
• improve things by dwelling on guilt, frustration and resentment.

See Reachout for more information and support for young people.

Children of people with a mental illness

Having a parent with a mental illness can be confusing to children. Because there are no obvious physical symptoms, mental illness is hard to explain when their only experience of sickness may be a band-aid or a brief visit to the doctor. Unexplained changes in behaviour or emotions caused by symptoms may be confusing or disturbing.

Some tips that can help:

• be as honest as possible. Explain as much as you think they can understand. With younger children, you could explain that their mum or dad has an illness that affects their brain and makes thoughts and ideas get mixed up. This can make them say things or do things that don’t make sense, but it’s the illness that causes the behaviour not their parent. Explain that treatment and taking medicine will help.
• prepare the child for times in the future when their parent may become ill again. Try to build up a network of trusted relatives, friends and teachers and others at school who can give the children support
• like the rest of the family, children may feel emotions including fear, shame, embarrassment or loss. Encourage them to talk about things that worry them and listen to what they say
• if appropriate, explain the situation to teachers and parents of school friends, so that any misinformation or hurtful comments can be stopped as soon as possible. Children may need help to know how to respond to questions or teasing about their parent from other children. It’s good if there’s a teacher or other trusted person at school they can talk to if necessary
• make sure there’s a trusted person who can care for them at short notice if the parent becomes ill
• if older children have to take more responsibility for chores or to help with younger children, try to make sure they get support
• find out if there are local services or groups for children with a parent with a mental illness by asking the case manager or local Carers Association.

For further information, please see ‘Joe’s Diary’ and ‘You’re not Alone’ which are designed to help teenagers and younger children understand mental illness in a relative or other person they know.

Further information and advice for young people:

• Kids Help Line 1800 55 1800
• SANE Helpline 1800 18 SANE (7263) This email address is being protected from spambots. You need JavaScript enabled to view it.
• www.itsallright.org

Thinking of the future

If you care for someone with a mental illness, it’s important to look ahead and make a plan for their care in the future when you’re no longer able to provide it.

Where do I start?

A long-term plan needs input from others - the person you care for, family, friends, and health professionals. Go through this guide, especially the ‘Finding support’ section, and make a list of areas in which the person will need to be supported when you are not able to provide care (for example, health care, accommodation, financial support and help to live in the community).

Consider what legal steps you will need to take now, such as making a will, for example. Services may change over time and the plan will need updating. Keep all the information in a folder, together with names and phone numbers.

Pick a good time to talk about the person’s long term care. Stress that however much we want the illness to go away, it’s unlikely to happen – the sooner we look ahead, the better for everyone. Discuss your plan with the psychiatrist, case manager, social worker, GP and other relevant people.

The plan may include wishes you have expressed in your will and that of other family members; possible roles for an administrator or guardian, and the setting up of a special trust.

Building a support network

People with a mental illness often have few friends or social contacts, and rely on family for support. Building up a network of support from others encourages the person you care for to be less reliant on family and develop more social confidence and independence.

People with a mental illness often feel powerless – helping them get support outside the family can empower them and reduce loneliness. Support from others is also important for family and other carers, reducing the sense of isolation and burden, and lessening anxieties about the future.

A support network can include health professionals, family, friends, staff at psychiatric disability support and other community agencies, employment agencies, advocates – even friendly staff in shops and other services. The case manager or other mental health worker may be able to suggest others.

Have a list of support people with contact numbers, so the person you care for and others know whom to contact. Writing a list can show up gaps. For example, does the person have a regular GP? Is there someone at Centrelink or the bank who can be asked for by name to help? Creating a support network is part of planning ahead.

What are ‘administrators’ and ‘guardians’?

If someone is unable to manage their affairs because of mental illness, an administrator may be needed. This is someone legally appointed by a statutory body to manage the financial and legal affairs of someone who is unable or unwilling to make a financial power of attorney. This is a way of formally protecting the person’s affairs. Ideally, an administrator should know the person.

A guardian is someone legally appointed to make decisions for someone else, to ensure they get the support and care they need. They may be a relative, friend or other trusted person, who knows the person with the illness and understands their values and needs. Guardians are appointed by statutory bodies which may have different names in each State, but have similar functions – such as a Guardianship Tribunal, Guardianship Board, Public Trust Office.

Ask the case manager or local Citizens Advice Bureau for more information.

What is a public advocate?

Public advocates have been appointed in each State and Territory to defend the rights of people with a disability. They can deal with complaints about care or treatment, exploitation or lack of services, and can help represent people with disabilities at boards and tribunals. In some States, the public advocate can be appointed as a guardian if no one else is able to fill this position.

Why write a will?

Setting out your wishes in a will saves confusion and heartache after you die, especially for the person you care for.

Making a will means you decide how your property will be dealt with. Dying without a will is called dying ‘intestate’ and can mean delays in distributing property, possible family disputes, and higher legal costs. It means your property is divided among family members according to a formula set out in law, not according to your wishes.

A will is especially important if you care for someone with a mental illness. Besides helping ensure continued support and accommodation, it can ensure their affairs will be looked after if they become too ill to do so themselves.

How do I write a will?

A will should preferably be written with the help of an understanding solicitor. Some local councils and neighbourhood legal centres provide a free will service. If making special provisions for someone you care for, discuss these with the person concerned and those who will provide support.

This is a good time to make sure the wills of other people and yours are consistent, so the agreed form of support is assured. It’s easier and cheaper if these wills are drawn up at the same time.

What is a ‘trust’?

If the person you care for needs help to manage money, consider leaving them a legacy ‘in trust’. Money held in a trust should not be affected by means-testing or gifting rules related to the person’s income support payments, such as the Disability Support Pension.

A trustee is an organisation or person, such as an approved solicitor, entrusted to manage someone’s assets. Trustees can make decisions on the best use of income and capital – for example, making a deposit on a property. While deposits into trust funds don’t affect social security, periodic payments from a trust may be regarded as income and affect the disability pension.

Public or State Trustees may be the best choice for financial management, but may lack a personal touch. Consider appointing a family member or friend as ‘co-trustee’ with the trustee organisation – preferably someone around the same age or younger than the person concerned.

For more information, ask a solicitor, legal advice centre or Citizens Advice Bureau. Centrelink also provides information about how families can set up a Special Disability Trust.

Where to call for help

• SANE Australia – contact the SANE Helpline for information and advice about mental illness and related matters, and for details of support organisations.
  1800 18 SANE (7263)
• Carers Australia – for details of State and Territory Carers Associations and services they provide for family and other carers, including respite.
  1800 242 636
  www.carersaustralia.com.au 
• Centrelink – for details of all benefits to which the person you care for and yourself may be entitled.
  13 10 21
  www.centrelink.gov.au 
• Commonwealth Carelink – for details of government services for people with a disability and their family and other carers.
  1800 052 222
  www.commcarelink.health.gov.au 
• Lifeline – for 24-hour crisis support.
  13 11 14
  www.lifeline.com.au 
• Kids Helpline – for confidential counselling for children and young people.
  1800 55 1800
  www.kidshelpline.com.au

In a crisis

See How to help in a crisis for advice on how you can help when someone experiences a mental health crisis.