My son had to “die” to be believed or heard; to have his fight with depression acknowledged. Does it help him now? Does it give me any comfort now?
I first became involved with Area Mental Health approximately 10 years ago. I entered the system blind, not knowing the minefield. This was due to the case overloading, the understaffing and under funding issues. The term ‘banging your head against a brick wall’ certainly applied, with not even referrals to other services or sources.
I was literally feeling my way in the dark, seeking help and being turned away time and again. I entered the system as a consumer, but the reality was I needed education and advice on mental illness, and most of all support as a carer with no other support.
When does a carer become a consumer? I am a consumer because I am a carer! The problem is that 24 hours a day, 7 days a week care of a partner for over 30 years with an undiagnosed and untreated mental illness left me totally physically exhausted. The constant stress has left me with permanent damage to my heart, my mind cannot take anymore; it has entered survival mode and is shutting down.
I have been a sole parent, even though I had a partner. I have been a woman in an era that allowed women very few rights or recognition. My children and I were victims of the social system, of untreated mental illness and domestic violence; and as a mother I was an unsupported carer for my three traumatized children.
Mental illness is very much a family issue; it has a huge impact financially, physically and mentally on the family as a whole. Mental illness affects judgement, decision making and logical thought. Just how can a sufferer with these malfunctions of the mind make a sound decision about responsible action for treatment? Admitting to mental illness is opening the door to grief, to the loss of your very self; it leaves you very, very vulnerable to the stigma and often the stigma is worse within the very system in which you should feel safe. The system you look to for help for change, for a future and recovery from an illness and resolving grief for the loss of yourself.
My eldest son Rob became severely depressed when with the birth of his first and only child, his partner ended their relationship. His treatment within the system was our 911. Over a period of 12-years he sought help and support within the system and at 34 years of age he suicided on Easter Sunday 2001.
The world was outraged at America’s 911, it affected so many people. Yet numerous innocent, ordinary people; people with valuable and worthwhile lives, like my son, die by their own hand every week. Why? Because mental illness doesn’t buy votes! The very issues of the illness, the exhaustion of the carer, the feelings of guilt of the family and friends leaves these deaths and the affected people ‘isolated’. My son and I have lost our fight for help, he is gone forever, our war with the system is over, I have failed, what more can I lose, whatever I do now, it will not bring my son back. My lack of knowledge in trying to support him, the stigma within the system and the continual closed doors were overwhelming. My son knocked on these doors, he did try, he did want to be well, he did want a life, but he became too exhausted and lost all hope. My emotions through watching my son suffer so, so much, made my help and support ineffective. He didn’t choose to die, he saw it as the only respite from his pain.
Rob continually questioned: “Why, why won’t you listen? Why, why won’t you believe? Why, why do you question the truth of what you hear? Why, why must I be forced to defend the valuable, intelligent, worthwhile person I am?”
I have now been diagnosed with a “mental illness”. The throw away insult sometimes used in professional circles of a “Personality Disorder”, “Major Depression” or how about “Post Traumatic Stress Disorder” are often used, with little investigation into the range of symptoms experienced. Well it is definitely POST; my son is dead! TRAUMATIC definitely, what can be more traumatic than the nightmare of the system and the preventable death of my son by suicide! The STRESS!!! Well what could be more stressful than watching your child die before your eyes of a treatable, curable illness and not be able to do anything to stop it! DISORDER; is my life in disorder? Yes, but more like shattered and although I can try and put the pieces of my life back together, they will always be pieces, nothing I or anyone can do can make them whole again. The slightest touch can shatter me once again.
I have all these labels and more applied to me by some professionals; well let me add one more. Let me, who has lived this nightmare call it “Cared Out”. I separated from my husband some years ago, but when my son died and while I was in shock and grieving, well meaning professionals without my knowledge or consent, elected me once again to be my estranged husbands’ carer. “SOMEONE has to be responsible for him!” WHAT SORT OF SYSTEM ALLOWS THIS TO HAPPEN?
I wrote to the Prime-minister regarding my son’s death and I was hot potatoed through the system. I didn’t even have the chance to voice my concerns, to challenge the truth and lies of statements made through the Coroners Court. I was notified 2 years after my son’s death that there would be no hearing. I was under the belief that the Coroner investigated preventable deaths and made recommendations to prevent further deaths by similar causes. Mental Illness is to hot an issue, it can so easily be swept under the carpet.
My son and I were further insulted by some professionals and their biased statements, protecting their professional egos and careers. Their half truths, twisting of the facts and cover ups are what keeps the system the way it is.
I recently wrote to the Leader of the Opposition in Parliament. I received a response from his ‘Campaign Office’, containing political notes of their policies on the mental health system. They are just words, not actions for change, hope and recovery.
I was recently asked to write our personal story on change, hope and recovery, during Mental Health Week 2004.
I have seen some change, mainly brought about by change in staffing, with some very special dedicated professional caring people entering the system, to support the too few already there, who were struggling to make a difference. I have seen some hope for carers and consumers with the role of a carer consultant being established, shamefully only part-time; well it is back to the issue of funding, not need, once again.
Recovery. I would ask that each and every person affected by mental illness, consumer, carer, health professionals, social workers, ANYONE involved, to flood your local government with your concerns, needs and respectfully DEMAND for these concerns and needs to be put before the State and Federal Government.
It is only through the voice of many that change will happen. Only then will we have a workable system to handle the real number of consumers, carers and all people affected by mental illness.
RECOVERY IS IN YOUR HANDS!
My personal change will be to be my own carer, to resign from the forced roll as carer for my estranged husband, someone who will not take responsibility for his own illness.
Hope for me personally is that I haven’t lived this nightmare for no purpose, that my son’s death was not without reason. That through our story we might encourage people to overcome their fear of stigma and speak out.
My recovery will be to regain some level of functional health to enable me to fight for change, to give hope to someone else’s child. To enable someone else’s child to recover and live a valuable, worthwhile life.