Living with Dementia

My wife Anna developed Alzheimer's in her early 50s. These are thoughts on what it was like day to day to live with dementia, for me and for her.

Sunday, July 16, 2006

It was a perfect summer Sunday morning and I was awake early. Jake and his girlfriend Julie have been staying the weekend.
But Anna was restless today – poor Daisy getting the brunt, as Anna rejected her grandmotherly wisdom that‘Everybody has a wash.’
Anna looked bereft. ‘What is it?’ she said. ‘It’ was her illness, I thought.
Later: ‘I want to go to the man of the cloth.’
And later: ‘I’m going to kill myself.’
(Can I be sure I heard that terrifying statement?)
‘You’re out.’ Dismissed, like a cricketer.
Then: ‘What are you going to do to me?’
and, last, ‘She (Daisy) is wonderful, isn’t she?’
Jake and Julie left. We will see them after the summer: what will change in six weeks?

I went to a conference on Friday about the future of the NHS – The Only Show In Town? It was an opportunity to think about alternatives to the market and the commodification of welfare.

I remember that the psychoanalyst Anton Obholzer said that the NHS is a keep-death-at-bay service. Do we think that? If so, there are two very different aspects of what that may mean. 1. A fight-flight strategy, for the efficient delivery of brief interventions over a limited range of the most popular product lines, a strategy that is well suited to market processes and commodification. 2. An excluding strategy, through rationing and the contracting out or closure of services for those with intractable needs, (dependence, convalescence, senescence), who neither die not get better in the short term.

I’ve just observed the conversation of Daisy with Anna making their way slowly downstairs.
‘We’re going down.’
‘I’m not dying!’

The use of story-telling helps to give some exposure for the excluded, but there is not a lot of evidence that this has any impact on policy. I suppose that what I am doing here is storytelling. And I suppose that I hope it will make a difference, somehow. So I have put what I have just said on the conference blog: http://theonlyshowintown.blogspot.com/

But I feel like the ancient mariner , who stoppeth one of three:
By thy long grey beard and glittering eye
Now wherefore stopp’st thou me?

I have not shot an albatross, not knowingly, but certainly something equivalent has happened:
And we did speak only to break
The silence of the sea.

The trouble with the ancient mariner is that he only has one story to tell, however compelling:
And never a saint took pity on
My soul in agony.

At the conference, there was a man who could only talk about global warming. To him nothing else was of comparable importance. And in my own way I also found I was becoming less and less interested in the future of the NHS, because it does not seem to be interested in my story.
I fear thee, ancient mariner!
I fear thy skinny hand!

Of course global warming is the most important issue - that is, if we don't die first, through a combination of violence and shame.

You can always tell your story, but who in the end will listen?

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