26 January 2014

Even so...

I don't know when I will once again be able to start some regular posts here - or some writing elsewhere. My energy at the moment is totally occupied in creating some new kind of order - one that will get me through this interval of time between Allen's presence in my life and the acceptance of his absence. But I want to hold on to some of the thoughts I've had during this period. And as these are often framed in letters to friends and family, I will copy to my blog excerpts from some of these from time to time. I hope later on to be able to come back to these thoughts with less pain and more pleasure in remembering my late husband....

Dear Malcolm,

I was again in tears – reading your lovely words, which I will ask Julian to read at our lunch next Sunday. Thank you so much for taking the time. And thank you, too, for capturing so well the spirit of the man I fell in love with 35 years ago.

So much of Allen’s lively enthusiasm, wit and intelligence was severely taxed in recent years by the dreadful disease eating away at that beautiful brain. Even so, right up to his last days at the beginning of what was supposed to be a short few weeks of (my) respite, he could appreciate the humour in some of the antics of fellow residents in the dementia unit. Watching a guy do something silly at a nearby table while I helped Allen to get a slippery omelette into his mouth, he looked at the guy and then over at me and raised a quizzical eyebrow, as if to say: “Get a load of him!”

Except in short episodes of delusion, mainly in the evenings or during the night, Allen and I never lost the ability to connect – even as words and language lost almost all meaning for him. He was taken to hospital after just his third night in that respite facility, when he apparently ingested vomit while lying in his bed. In all our years together, I can’t remember Allen ever vomiting – even when in hospital. So it will always be a great mystery to me what actually happened. But I know when I arrived there in the morning, and sat with him while we awaited the ambulance, he was already on oxygen and struggling to draw breath. Less mysterious is the fact that he just could not rally during the next four days in hospital, but continued to deteriorate with a terrible pneumonia.

I knew only too well that Allen had been wanting for months to be finished with his struggle. He could no longer manage to read anything but the occasional word, couldn’t write words or even letters and could only barely understand the grammar of even the simplest of spoken utterances. He was so very isolated, and his physical mobility had been likewise impaired. He just couldn’t control the voluntary and involuntary actions of many of his muscles. Each morning while I shaved him, for example, his right hand would perform a kind of pretend-shaving, and I’m not sure he understood which of us was actually holding the razor. He could only shuffle along on his walker – but always insisted on accompanying me to the shopping centre, sometimes waiting on a couch near Woollies if he didn’t feel up to the whole supermarket slog. But when we got home, he never failed to help unpack the bags and put whatever things away he could manage. He just wasn’t one to sit idly doing nothing. And yet he was losing interest even in listening to or watching the many opera DVDs that Chris had sent him from China. He felt all his forces – both physical and mental – slowly evaporating. And he just hated it.

I don’t think he had the will to fight one more battle with pneumonia – and he’d had several. And four days of IV antibiotics had done nothing to reduce the infection. He had to be on IV hydration, too, as he could no longer swallow anything. So it was a relatively easy decision to accept the doctor’s offer to begin morphine – ostensibly to minimise the pain of his difficult breathing. But we all knew what it meant. I had no hesitation in telling the doctor: “Let him go”. Allen was to all intents and purposes unconscious in the last 24 hours or so before that, but I think even he knew this was his chance to slip away. And instead of the two or three days we’d been warned it might take, Allen was gone in just a couple of hours, peacefully drawing his last breath in a lovely corner room with tea-trees and a bright blue sky outside our window. I long ago had to come to terms with the Allen I knew and loved no longer being available to me. But I’m still coming to terms with Allen not being in the next room, dozing peacefully in his favourite armchair. It’s going to take a long time. I’m glad his battle is over. Even so.....

About me

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I started this blog in 2009 when I became a full-time caregiver. My husband had been diagnosed a few years earlier with primary progressive aphasia. Over the next four years until his death in 2013, we went on a journey of discovery about this rare condition. My blog is about what I learned, how we both coped and how the journey deepened our love and appreciation of each other. Allen’s journey is over, but mine goes on.