Caring for Dan
Posted on August 18, 2009
This is a guest post by Linda. It was written in 2003, three weeks after her son was admitted to hospital and diagnosed with paranoid schizophrenia.
He’s in hospital!
After all this time, I can hardly believe it. He has been admitted. It has taken six years. Not that he has been without spirals of deterioration before, but he just never fitted their criteria before, or rather the crisis never came when there was a bed available.
In those six years, I have lost count of the crises we have had, the self harming, the delusions, the conversations with the voices in his head, the pacing – when he could no longer hold it together with the voices winning control, the threats, the door slamming, the rages. Six years of totally unpredictable behaviour, sometimes loving and gentle, sometimes full of desperation and the desire to die, sometimes raging aggression, with eyes bulging and fists clenched.
Six years it has taken – and now a new diagnosis (the third or fourth one we have had).
He was in hospital 10 days and his named nurse talked to me, she asked me a question that no health professional has ever asked me before: “What was he like before you recognised he was ill?” It seemed almost hard to remember the boy that has turned into a man with an illness. Yet, I could recall it, and it came flooding back.
He was caring, bringing home a series of his peers with problems, supporting them. He was artistic, with loads of friends in and out of the house, staying over, tents full of happy adolescents in the garden, the phone never stopped ringing, so much so I had to get an answer phone. He had a smile that lit up my life, a sense of humour that included practical jokes and a wit that never let me get too bossy or too full of myself. An eloquence with words beyond his years. A’ levels and university and a career – that’s what the school thought his future held. Then he changed, the girlfriend went, the phone stopped ringing, the friends stopped coming and for the last six years, he has lived a life of social isolation and exclusion.
Early intervention – that’s what the NHS talks about, pity they only talk about it. Six years wasted of his life. I will never know what the benefits of early intervention would have been and neither will he. His career will now be in mental health, as a recipient of services.
I’m stuck on this rollercoaster of a life. So what does my life consist of now? Vigilance, monitoring every intervention the health professionals make and questioning and challenging it, making sure I understand their rationale and checking it with other health professionals outside the community and hospital team, to make sure it’s not more outdated, financial cost driven service provision. I have had to learn about mental health issues, care plans, drug regimes, talking treatment regimes. I have to fight them every step of the way to ensure he gets what mine and your taxes pay for.
Sadly, that’s what I have had to learn, because health professionals cannot be relied upon, because, though some of them may be dedicated, and without question many of them are low paid, it’s not their child, it’s not something they will live their life with, and they can go home, they can walk away at the end of a shift. They have indemnity insurance, if they mess up, it’s not their life that is shattered or lost.
“I know what it must be like for you”, well actually they don’t and not many statements incense me more. They might have observed similar situations, but they don’t know what it is like for me, and strangely they never ask that question. And yet they get to judge you, the carer, based only snippets of information, given often times, from the psychotic delusions of ‘the patient’ which have little or no basis in reality. I know I may be part of the problem, what they forget is that I am also part of the solution, and no-one knows my man child like I do, no one else spends the time with him, hears the ramblings, recognises the early signs of distress and watches the spiral of deterioration with more helpless desperation.
The presumptive world says that your children outlive you, they grow, get educated, leave home for an independent life and better things, find partners, create new families. That is unlikely to happen for him now.
But what about my loss? Adult and equal friendship with your grown child, joy at a graduation ceremony, being able to speak with pride about him to friends and colleagues, becoming a grandmother – that’s all gone now. So now I avoid my peers with adult children. It is just too painful to hear their stories of how wonderfully their offspring are doing, because it is just a matter of time before they ask me about my man child.
The five stages of grief and loss, originally developed by Elizabeth Kubler-Ross to describe the cycle of loss associated with dying which has been interpreted now across all types of loss. So where am I in this cycle?
Denial – No longer possible, I can’t kid myself he will grow out of it (though that’s what some of the professionals had been saying). Schizophrenia is not something you grow out of. Though sometimes on a good day, I can see a spark of the person he used to be before the illness consumed him, so yes, some days I allow myself to think the person he was is still there.
Anger – Yes, lots of that, about the system that let six years of his life be wasted, about the consistent failure of the NHS to really deliver what is needed, an NHS that gives permission for services to be controlled by psychiatrists (who appear to remain clueless about the real burden that carers are carrying) and who can’t be challenged, about the lack of funding to the mental health services generally, about the failure of society to accept difference and the reality of what care in the community really means – so yes Anger, I can relate to that.
Bargaining – Yes, I do that all the time, in my head. If only…., please God … A process of continually evaluating my contribution, what can I do to make it better (an area that health professionals notoriously give no real advice on). I can’t drown my sorrows in alcohol, I don’t know when the next crisis will be and I will need to be sober and able to get to him. I can’t afford to get sick, or die because who will care for him and fight for him then. But then that leads to depression, because if I am honest, some days I don’t want to wake up to this life, I want someone else’s life. I have become conscious of my age, not what it means for me so much, but what it means for his quality of life. My death will mean he is without someone to fight for him.
Depression – Oh yes, depressed that this is not what I imagined my life would consist of, depressed at how my life (career, hobbies, [what are they?] other relationships) are limited by his illness.
Acceptance – I have that, acceptance that until the system changes, this is how my life will be, but that takes me back to depression – so it is not just a cycle but a vicious circle!
He used to ask me, what should I be when grow up, and I used to tell him, ‘you can be whatever you want to be, I just want you to be happy’. Oh how I regret those words, because happiness is the very thing he doesn’t have.
this is such a moving piece. i cannot even begin to comprehend what this woman has gone through, and the bravery she has to have supported her son through such a devestating illness.
mental illness is such a taboo subject even now, and writing about these experiences is a way of raising awareness, and her honesty is moving and admirable.
i have had friends who have gone through the nhs mental health mill and although i am always grateful we have the nhs, the lack of funding and the issues raised in the post are enough to make you cry and give up hope. people go in to hospital and then come out and the support isn’t there…they are left alone at their most vulnerable.
so, thank you for writing this.