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.

Thursday, September 07, 2006

Anna was anxious first thing: she said, ‘I don’t think that it’s going to work.’

And that is the question now. I am worried that we will be losing the carers from the Home Care team – the framework on which we build all the support around Anna. While I was away, their managers were on to the social worker – in the past we have been asking of them, now they are asking, they are at the limits of their coping.

I am trying to think clearly.

Now I know that Anna went to ‘panel’ yesterday – that is, the social worker had put together an asssessment for NHS continuing care. But it was thrown out, because she is under 65. She has to go to another panel.

Early onset dementia doesn’t fit their categories, so Anna has a social worker from the older persons team – having been rejected by the adult team- and she is seen by an old age psychiatrist, but the assessment now has to be considered by the adult panel.

So her trial is set for two weeks ahead.

Suddenly everyone is talking of alternatives. Specialist care. But it is not certain what they mean, or that they know what they mean. All they are saying, it’s not them.

There is a ward in the hospital – L2. I can only think it is Hell Two.

(These are the specialists? – the nurses and nursing assistants in a continuing care ward, experienced in managing a roomful of demented patients? Someone I know has been working with the staff in such a ward in west London – she describes a culture of gothic dysfunctionality. I know they don’t have to be as bad as that, but this is not where you would normally look for the cutting edge of psychiatric nursing.)

Dan and I are talking. Last week was the most difficult he has seen.

And this morning Anna was not accepting my efforts to help. ‘Bastard.’

‘I’m trying to help you.’ ‘Hunt me? Why. Why?’

Are we hunting her down like a wounded animal? Is that what we are doing?

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