Nobody ever dreams it could happen to them but one in five Australians will experience mental illness at some stage of their lives. While the majority will recover well and lead full, independent lives, a significant number will need care and support for varying amounts of times. This means hundreds of thousands of family members, unprepared, uninformed and untrained, will become the primary carers of loved ones.
A carer is someone who provides care and support for a parent, partner, child or friend who has a disability, is frail aged, or who has a chronic mental or physical illness. In a recent survey of the 2.3 million carers in Australia, 58% reported that their physical health had been adversely affected, a third said that they had sustained a physical injury as a result of being a carer and over half reported depression, anxiety, high levels of stress and other detrimental effects on their own mental health.
Carers become so used to supporting the vulnerability of others, they find it hard to allow others to see and support the vulnerabilities in themselves. They often experience feelings of loss associated with their caring role, grieving for ‘what could have been’ or ‘what once was’. Mental illness is not like cancer, diabetes, or M.S. With mental illness, people don’t know what to say, or how to respond. They are usually embarrassed or fearful.
Unlike patients hospitalised with a physical ailment, those suffering mental illness never receive visitors. They never receive phone calls, cards or flowers. There are no Red Nose or Daffodil Days for those living with mental illness. Carers constantly feel out of their depth, as if they have lost control of their lives, fighting never-ending battles with officialdom and losing hope easily.
My experiences in coping with someone suffering mental illness began in 1975 when my sister Christine, who lived next door with her five-year-old son Joel, first showed signs of schizophrenia. Back then, I had no idea what was wrong and I felt frightened. I had never had any experience with mental illness. There was no real public awareness of it as there is today. I kept visiting her – up to 20 times a day – in and out of her house – mystified, terrified, angry and shocked at her bizarre behaviour. For example, Christine, who was an artist, was obsessed with painting a true masterpiece, but all she painted was black on black on black. At night she anointed my nephew with peanut oil and they both prayed to the canvas of thick black paint for hours. It took months for me to get her the help needed.
My GP eventually sent me to a psychiatrist. When I explained everything to him, he said it sounded like schizophrenia but he would need to see my sister personally. This was impossible because Christine didn’t believe she was ill. When matters worsened, I was forced to organise her involuntary hospitalisation with the aid of a doctor and a policeman. From this point on, I shared the care of my nephew with my sister, who spent a lot of time in hospital. Often, during the time spent at home, caring for Joel, she would refuse to take her medication. Life was chaotic. There was never any support for my battling sister.
When Joel turned 15, he was also diagnosed with schizophrenia. When he was 19, he took his life in a violent way. My sister did not receive any counselling or support at this time though she was suffering both schizophrenia and breast cancer. Until this time, her cancer had been in remission but her son’s death had a devastating effect on her and she died eight weeks later from the cancer.
The burnout rate in carers is generally high. Burnout goes hand in hand with the job of caring because unlike other means of employment, there are no holidays, no weekends and the pay’s lousy. Burnout is a build-up of sleep deprivation and physical, mental and emotional exhaustion. It spawns feelings of defeat and failure. It involves a loss of self-esteem, self-confidence, self worth and self-image. It creates a gradual loss of identity.
Burnout is prolonged, unalleviated, never-ending stress. Since the government has failed to provide adequate housing with support for people directly discharged from psychiatric hospitals, those who don’t have families return to the streets. Most of Australia’s homeless are mentally ill. The public health and welfare systems are under-resourced, overwhelmed and non-existent in many areas. Those who are being cared for are ‘the lucky ones’. But who is looking after the carers?
The following example typifies the initial shock one experiences on discovering a family member has been diagnosed with mental illness. It also reveals the sense of powerlessness that a carer feels when they find themselves at the mercy of “the system”. Valerie and her husband live in rural Queensland. “Three years ago our oldest son had been working and living for some time on the Gold Coast. Our youngest was in his first year of university in Brisbane. One evening we received a phone call from a nurse in a psychiatric ward in a Brisbane hospital. He told us our younger son had been admitted after being found unconscious in a park. We were devastated. The nurse told us that he was ‘safe’ and there was nothing we could do. But I had to be with him. He was just 18 years old. Sleep was impossible and at 5.00 the next morning, I headed for Brisbane. Exhausted through lack of sleep, I drove alone for seven hours in total shock.
I passed the next two weeks spending all day every day with my son. In the following two months I travelled regularly up and down. The nurses were always kind to me but also very busy. I was just another mother visiting. I didn’t know what was going on. I wanted to take our son home but the doctor told me he must stay in hospital because he was ‘no longer my son’. I could not comprehend what was being said. Yes, he did act strangely sometimes during visits but he also had ‘normal’ periods and continued to be my son.
One day our son rang to tell us he was being released from hospital and was coming home. We did not receive any official phone call from the hospital regarding our son’s discharge. No arrangements had been made for follow-up care. He arrived home with a plastic bag filled with pills. He said he’d stolen the souls of the other patients. We were given no information or help in how to cope with him. I was in shock. I walked about in a daze for weeks. I cried all day. I even cried in my sleep. I ranted and raved at the world and cursed God. I went through a phase of blaming myself. I looked everywhere for a cure. I gave him vitamins and fed him a gluten-free diet. I researched natural therapies and cures but nothing worked. The doctor had been right. He was no longer my son.
It wasn’t until I accidentally stumbled across a web page on the internet describing the symptoms of schizophrenia that the penny dropped. We demanded a revised diagnosis but like most general practitioners, our local doctor, having had little contact with serious mental illness, did not have a clue. He referred us to a psychiatrist in Brisbane and our son was diagnosed with schizophrenia. Although not good news, it was a huge relief that we at last had a label for our son’s illness.
He is now on the appropriate medication and, although it took a while, we have our old son back. He has not been able to resume his studies at university yet but we hope this will happen in due course. He has a dedicated case manager helping him regain his old life.
We, on the other hand, have never been provided with any knowledge, support, training or suggestions in caring for him on a day-to-day basis. We learn as we go, mainly by our own mistakes.” Our mental health system is not only letting down those who live with a mental illness, but also those who care for them. Not only are patients discharged from hospital too soon, often the hospital fails to notify community services that a patient is in need of follow-up care. NEVER do they suggest follow-up care for the carer. Carers save the community and the Australian government over $18.3 BILLION per year. Most long-term carers experience physical or emotional illness directly related to their caring role, as well as loss of jobs and marriage breakdowns. But they don’t seek help for fear of being admitted to hospital themselves. Who, then, would look after the ones for whom they are responsible?
Recently, however, there has been a slight improvement within the system, although the supply of help for carers still doesn’t come anywhere near the demand.
- FOR YOUR STATE OR TERRITORY, GO TO:
Australian Capitol Territory: www.carersact.asn.au
New South Wales: www.carersnsw.asn.au
South Australia: www.carers-sa.asn.au
- LIFELINE 24 hour counselling 131114
- WHEN ENGLISH IS NOT YOUR FIRST LANGUAGE
For carers in Australia who do not speak fluent English, there is a multicultural website for carers and sufferers of mental illness. There are many links and heaps of information. The pages are available in 56 different languages. The address is www.mmha.org.au
- COMMONWEALTH CARERS RESOURCE CENTRE
FREE CALL (mobile rates for mobiles) 1800 242 636
Provides information and support state-wide to carers in the areas of services, support and education in your area, financial entitlement, care support groups, home help, where to find help with medicines, legal issues for carers, respite.Other websites providing, help, support and education for Australian carers:www.carersaustralia.com.au
- PHONE NUMBERS
Directory Assistance (free) 1223
Carer Allowance and Carer Payment 132 717
SANE Australia 1800 688 382 (free call)
Arafmi (03) 9889 3733
Beyond Blue-National Depression initiative (03) 9810 6100
Carers Australia 1800 674 200 (free)
National Carer Counselling Programme 1800 242 636 (free)
Salvo Crisis Line…Suicide Prevention 1300 363 622 (local call)
Suicide Helpline 1800 191 919
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