‘I don’t want to be like this. I haven’t done anything wrong.’
It might seem confused, but Anna was drawing attention to the common link made of illness with a moral accusation. We were going out but she could not manage the first steps - it was hot, and a child across the road was playing a noisy game with his father – and after a half hour we gave up.
I was angry that we have not yet got the path rebuilt, so that she should not be housebound like this.
We think that living in the Alzheimers lane is very slow-moving , but there are times when we seem to be more in a hurry than other people. This is to do with living in the present. If Anna has anything to say, she has to say it now, not wait for her turn. Our local community hospital closed in 2000 and there have been plans ever since to make it into a dementia day centre. But six years later the hospital remains derelict and anything it might have done for Anna has now past – bureaucrats, planners and politicians are slower than us, it seems. And if we need services, adaptations to the house for example, or other resources, we need them when we recognise we need them. In management jargon, this would be Just in Time management.
A referral to the social services for an occupational therapist takes three months for an assessment, and the person who comes is allergic to cats, and it is another two months before the next person comes and is just leaving her job, but we get category one status for the path, which is as good as it gets, and we have been waiting now only two months more and it may only be another three or four weeks before the work starts. So it may be only eight months to them, but in this time Anna’s capacity to get out and about has contracted as inexorably as her tangled brain.
So we stayed at home instead of going out, and that’s when Anna said, ‘I haven’t done anything wrong,’ and was suddenly very sad. I have talked to her a lot about how we are taking our own initiative to build a ramp to the back garden, in time for her party, but, come to think of it, although she says she likes it, she never asks to go out these days. I suspect that she is now housebound in her mind, and making these changes may not make things all that easier in the end. As she said at the picnic, when we want to help, ‘You do it for yourself.’
She doesn’t like to do anything where she thinks she is going to look foolish. Right from the start of her illness, she has looked for alibis for her distress. And now, today, she has given another clue why this is. She is fearful of that accusation, that judgement that somehow it is all her fault.
And yet Alzheimers, more than most, is a disease that it is difficult to link to life style. Anna used to be quite fit, and she ate healthily and she certainly exercised her brain, which are the things people talk about when they advise on ways of avoiding dementia.
The accusation that it is her fault is largely unconscious – a below the surface undermining of our ordinary feelings of empathy for someone suffering. It is certainly not logical that we hold people responsible for the misfortune that happens to them. I remember Helen Bamber saying how children who survived the death camps and brought to England after the Second World War were nevertheless held responsible by well meaning teachers for shortcomings in their education. Did they not have books in the camps?
So Anna, who remains sharp about such things, picks up on the unconscious accusation. If there was a moment of frustration in my attitude, as we stood on that path, she heard it for what it was.
In contrast, her carer, Ann, cleaning up after her in the morning, took away the toxicity of the situation in six words.
‘She doesn’t mean to do it.’