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.
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.
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 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.
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.
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.
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.
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 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.
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:
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’.