Archive for December, 2011


A Decision Made

I’ve been quiet the last few months. Not seeing many friends, not going out much. Other things have taken priority: moving twice in six months, spending a lot of time with my aging father. But the main reason has been that I’ve been coming to terms with a decision that had its germ at the beginning of this year.

In the middle of 2010 The Boy had an “episode” which for the first six hours looked like another stroke. There was another trip in the ambulance, this time from the nursing home, with lights flashing and siren blaring. I left the hospital that night not knowing what the following morning would bring, whether I would be asked that awful, final question: how much treatment do you want to be administered?

The following morning brought a changed Boy. In some ways it was like the last two and a half years had not happened. He wondered why he couldn’t speak, walk, think clearly. He asked what had happened. I explained that he had been ill since February 2008, and that this was what his life had become. He accepted this with seemingly much improved cognition. Previously he had been in a bit of a dream, just drifting. Suddenly he was more aware and motivated to improve, though at the time he was actually quite ill with a severe chest infection that kept him in hospital for a week.

Because of that improved cognition I was able to sweet talk another month of live-in rehab out of the system. We went to the Royal Rehab Centre at Ryde with high hopes. It seemed like finally we were getting somewhere and his brain had suddenly “woken up”.

We went to Ryde in September 2010 and spent a month there. Goals were set that related to skills needed for living at home. Skills like being able to put on a shirt, brush his teeth, shave himself without assistance. Continence was worked on. For the first couple of weeks the improvement was noticeable and encouraging.

Then it all stopped, again.

This is the nature of rehab – improvement followed a plateau.
At the end of the month we went back to the nursing home with some plans in place to build on the work done during that time. We kept hoping for another improvement, particularly in cognition, the main obstacle to his coming home.

That improvement has not eventuated. While he continues to make good progress in mobility, walking with a frame and one assistant, feeding himself, the cognition has not improved. This has resulted in a serious fall in August resulting in a cracked hip and another four falls since then. He forgets that he is unable to walk unaided. He has no understanding of how serious his disability is.

The lack of improvement by the beginning of 2011 meant that I began to consider that he may never come home. This was a massive shift in thinking for me. I had said from day one that he would come home and I would look after him come hell or high water. But I began to realise that at the very least this would be a mammoth task.
I could not expect our children to devote their young lives to helping and there was no one else to help. Having him at home would mean that we could either live in poverty on the pension, or I could work and then come home each evening to a 24 hour care proposition with no help.
The grim reality finally sank in.

I have talked this over with some very close friends and our children, who have been supportive. I still cry every day. He has told me many times, in moments of clarity, that he does not want to be a burden. I’d willingly shoulder that burden, but there are practical considerations. The painful reality is that we both have a better quality of life if he stays in care. We’ll both eat better and be able to afford entertainment and therapy. The little things that make life bearable.

So, finally the decision is made. Unless there’s a miracle, we will never live together again. There will be no more travel together, no growing old sharing the same bed. I now have friends he’s never met. I wear clothes he hasn’t seen before. My hair is different. My life goes on while his has stopped. Hopefully he will eventually leave the nursing home and go to a shared accommodation situation where he’ll live with others closer to his age and have a more fulfilling life. I’ll still visit most days and take him out to activities and to see friends.

When we were originally given the grim prognosis that he would never wake up, would spend the rest of his life in a coma, and that he may not recognise anyone, my response was that this was a five year project and that he would be back at home by then. Perhaps the five years was the time it would take me to accept this new life.

This was not something we thought about at the age of 16 when we saw each other across a dance floor and fell in love.

I feel like I have broken every promise I ever made to him. Failed him.

In spite of all that’s happened we’re still so very lucky. We had almost thirty years together before the axe fell. Two beautiful children, a life time of memories, and wonderful friends. Who could ask for more than that? We’ve also met some inspiring, dedicated, and passionate people in the last few years. Had the opportunity to look at our lives and jettison the things that aren’t important. Old friends from our school days are back in our lives. (We still laugh at the same old jokes). Life is good, and love is all.

Two Lives

Life flies by at a frenetic pace, filled with work, family, friends and commitments.
Days where there are not enough minutes for all on offer.

Life passes in a bubble of time, moving so much more slowly than the rest of the world, not knowing what day it is.
Days that repeat with the same routine, surrounded by strangers, punctuated only by visits from a few, and bursts of therapy.

Two lives that used to be like one, running along side by side. But now, one leaving the other in its wake, reaching out a hand to help it keep up as best it can.

Like a river where there are fast and slow currents. Or water dripping down rocks, quickly in some places, slower in others.

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