How the NHS failed me and mine.
What it did, to the most important person
in my life and how it could happen to you unless
we do something about it!

Friday, 16 October 2009

Caring; A Role for Life

My life as a carer began only just over a year ago. Time has given me some perspective and some relief from the more onerous aspects of the role. J can manage most of life unaided given a few measures like an automatic gearbox and a higher seating position in driving. As my eyes get worse it may become a need and the role may be reversed a little.
But caring is more than just a functional need fulfilled. It was at first a role consumed with a voracious appetite; a need to assuage the guilt of the survivor. To pay back the years of devotion, patience and unconditional love heaped upon me, mostly undeservedly, that although returned, was often tinged with hubris.
The accident was for me, one who has escaped physically unscathed from some terrible events, a mountain of sheer terror, that became a prolonged trauma. Building as it did from the first moment to weeks later, I became almost unable to function. Except of course when it came to fulfilling this role of caring for someone who I realised was more important to me than life itself. Somehow through the dysfunctional anguish; the uncontrollable tears, there sprang just enough strength to push that wheelchair, cook the meals, get J in and out of the van I took to driving, to carry the needs for someone learning to walk again. Where it came from I never will know. Although pain from my arthritic joints intensified with the burden, it was never one that could not be endured and certainly not one to be reported.
As the weeks became months the tasks became lighter, my role less intrusive as she coped, sometimes so well, that I resented the loss of dependence upon me. It seemed my role could be ameliorated and I became depressed about her independence; her need to assert her desire to be such, made me fear for her safety. I took to checking up on her, all the time and entreating care and caution in every endeavour. Her desire to be 'normal' became a burden and as it did my depression deepened.
I constantly relived events that traumatised, some even from my youth. The airplane crash, my fathers death, the cancer scare, the nuclear incident; all now seemed so real and terrible, yet I had ridden through them with a resilience I could not understand now, looking back. Worst of all was the realisation, that I had nearly lost that which I needed more than anything else and the picture of events that played in my head of this, intruded more than anything else.
When I did find help it unleashed a torrent of tears; a staggering explosion of emotion unknown before. I had been given permission to be like this. It was to be expected. I wasn't mad or bad. I was just traumatised by the possible loss of the one thing I had been able to salvage from a life filled with duty, caring about others and most of all guilt at not being there when she needed me.More terrible, was the knowledge that it wasn't all my fault, because in my world, it had to be.
She still needs my help. I am still a carer and sometimes still in fear for her safety. I continue to fight for justice and candour, as to how we came to be here and will do so now for all of my days. It's the loss of the days before that fill me with guilt and resentment. James Dean said it, "dream as if you'll live for ever, live as if you'll die today"

1 comment:

  1. Hi Blackdog,

    Don't know if you've already got it, but could I suggest you get a copy of 'The Selfish Pig's Guide to Caring,' by Hugh Marriot? It's written by a carer and it is funny and practical at the same time. Here's a link where you can have a look at it;

    http://books.google.co.uk/books?id=vNaEwOtD0DAC&dq=selfish+pig%27s+guide+to+caring&printsec=frontcover&source=bn&hl=en&ei=vuzYSsH2Nt62jAeDnpTeCA&sa=X&oi=book_result&ct=result&resnum=4&ved=0CBUQ6AEwAw#v=onepage&q=&f=false

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