In the wake of Mental Health Week and Carers Week, Lismore mother Ayla Garlick talks frankly about her experiences caring for her schizophrenic son, and the frustration she has felt over the lack of appropriate support.
Since I was thrown into the chaotic and painful world of caring for my schizophrenic son, I have experienced that mental illness is probably the most misunderstood and neglected of all diseases. My once beautiful, cherished boy, full of laughter and promise, is now stigmatised and socialised into a street life where no-one cares except to use and abuse. My son has fallen further and further through the cracks of society, and he now lives on the edge, a dark shadow that no-one wants to see. He has lost his social skills and burnt his bridges.
The son I knew died to me 12 years ago. He has become a person I dont know, I cant trust. He has learnt to use and abuse the ones who care for him. I dont know where to turn for some hope of a life for my son. Not only has his life become a tragedy, but mine has become a long, hopeless nightmare of fear for the safety of myself, my family, my community and fear for his very life.
I have often felt that not only am I dealing with the problems of the illness but the ignorance and fear of society at large. Whereas physical illness gets sympathy, mental illness often gets shame.
Certainly, todays attitudes toward mental health are more compassionate than when people were committed into institutions, under control and safely out of the public eye. However, I believe there has not been enough funding to administrate this move of mentally ill people out into the community. The general public is often ignorant, and families have to shoulder the burden with little support from under resourced community services.
I feel that one of the major flaws in mental health regulation is that the person who is ill gets practically no support until they are finally committed to hospital for treatment. After being hospitalised and medicated, there is often no after care or support. Once scheduled, my son would be stabilised only to be released back into the community to face the same problems such as inadequate housing and a lack of social and life management skills. Over the years, my son had developed anti-social survival behaviours to deal with the ongoing stress of his condition.
Todays society has progressed in its attitudes to protect peoples rights, however, I often come into direct confrontation with the law when I attempted to secure hospitalisation of my son, who has lost insight and is unable to make coherent decisions. The mind that is malfunctioning is the same mind that needs to know it needs help. Due to him now being deemed an adult, (although developmentally arrested at 15 years old), it is often difficult to obtain information about his whereabouts, care, medication etc from mental health services obliged to maintain confidentiality. My son could be in hospital for weeks before I would know only to be told that he had escaped. The problem of caring for my 27-year-old sons well-being always fell to me, his mother. However, as his mother, I was often the person who he would rebel against but in the end, I was possibly the only one who cared. The legal system may have ensured people who are mentally ill have gained their freedom but they lose their mind in the process.
There have been times when the police have been unable to schedule my son for treatment, as psychotic symptoms are not always apparent. At the same time, he would not get help from the criminal justice system. He would be released back into the community on a Section 32, through the Mental Health Act, and having not learnt any negative consequences for his anti-social behaviour, my son developed learned helplessness, and the behaviours continue.
At other times, my son has felt betrayed by me when I have managed to have him committed to hospital for medication he hates the feeling of being drugged. Mum, its killing my soul, he would say and my act of enforcing medication against his will would fuel his paranoid thoughts that the people he loves are plotting against him.
When non-compliant with his medication a Community Treatment Order serves no purpose as he cant be case managed when he has no address. He has been banned from any residential services as he is too difficult to manage. My sons hope for rehabilitation has been lost in the revolving door of Tweed Clinic, his refuge. When placed on a Treatment Patient Order, he is mandated to stay a few weeks in hospital, long enough to be considered well. With the so-called positive symptoms (thought disorder, paranoia, delusions, hearing voices etc) of schizophrenia stabilised, it is the negative symptoms (social, developmental, motivational deficits, poor life skills and behavioural problems) that are the most debilitating to his personality and require long term intervention to treat. However, he is inevitably let out into the streets as soon as he is not presenting with psychotic symptoms a ghost, walking off into the dark with no home, no money, no possessions. Nothing to live for.
Having resorted to illicit drugs to self medicate, he has become addicted to these. A dual diagnosis client is akin to an untouchable. Addiction services wont treat him while he has a mental illness, and mental health services wont treat him while he has an addiction. While politicians speak of money being channelled into improved mental health services, the Northern Rivers region has recently lost its only dual diagnosis service. MISA (Mental Illness Substance Abuse), a comprehensive service run by The Buttery to address the complex issues associated with dual diagnosis, recently had to close its doors when its contract for funding expired.
It seems that both the justice system and mental health system are at odds with each other. When calling the Acute Care Service, our local crisis team for mental health, many times I was refused assistance. My son tends to become unwell after hours, and the local Acute Care Service only operates in working hours. During a typical episode, I would often ring the crisis team or police only for them to arrive too late to witness enough evidence to commit him. At times he wouldnt be committed to hospital until he became a threat to himself or society. Recently my son was asked to leave a local short term accommodation service for people who have mental health problems due to behavioural issues. Unfortunately, I had already planned an overseas holiday, and as I was concerned I asked the local Acute Care Service for assistance. I was rudely told that, we will not babysit your son while you go on holiday. I returned from that holiday to my house being totally trashed and ransacked every treasured possession smashed, half of my belongings taken down to the beach in some psychotic ritual of purification. The police were helpful and pursued him until 2am in the morning. At one stage a helicopter was called as he disappeared into the ocean and couldnt be found for 30 minutes. Once caught and charged he was released back out into the community because the Acute Care Service refused to assess him to be scheduled. As the only one who cares, my sanctuary has been violated, my peace of mind shattered, my security threatened. I now feel that I have to sell my house and move for my own safety.
As mental health organisations have become decentralised, care has become fragmented and inconsistent. As a community, we are reluctant to address the issue that mentally ill people do not always cope well on their own in the community, and need adequate support to live a reasonably independent and integrated life in society. What is needed is a comprehensive range of services, from public education to early diagnosis and intervention, through to rehabilitation and socialisation activities. If our communities are to be safe and healthy, this includes residential daily support.
To those in the community who have cared, I thank you with all of my heart. To those who have suffered from his suffering, I suffer with you.
In this beautiful region, which values all that it good and healthy and bright about life, I say one thing. We cant ignore the shadow, the sick and the dark. It doesnt go away, but comes back to haunt us; in our prisons, on our streets, in our communities. Mental health services are badly under resourced in this area. We need to care about caring for our mentally ill. I am appealing to you for a voice, a hand, a caring heart. Let our policy makers know that this mistreatment of those who are mentally ill is not good enough for our community.
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