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, November 12, 2006

The question of racism is always very difficult, as we know, and racism in care has its own kind of politics. It is not a new question for us. The home care manager is black and I know unofficially that she asked whether we were racist, eg anti-black, after we had been unhappy with a couple of carers. Anna has worked well with black carers, currently with Madinah, a Ugandan who is also a Muslim. So many of the carers who we have seen are black and some are not as competent as others.
This is not to say that we could not be racist of course. I was thinking this, when I saw two black carers together ,early in the week. They get on well together and I hear them laughing. Anna does not like that because she thinks they are laughing at her. The dynamic at the end of the week is very different. Lucy is from Sierra Leone – so Madinah and Lucy are both ‘African’ but from different countries and cultures and religions. It is complex.
I have not as yet heard Anna be racially abusive. She calls someone a bastard but not I think a black bastard., However I am almost surprised at this. Firstly because under extreme stress people do say such things. Second because the Alzheimers makes Anna uninhibited. Third because with dementia people may revert to an early life view of the world, eg, in our case Britain in the 50’s. Her mother, as a local politician, was active on behalf of minority groups – as manager of the Labour Hall she gave bookings without question for example to gay groups, before this was the norm – a fact that Anna used to quote with some pride. So perhaps she was well brought up!
I know that black carers must get some abuse. If Anna hits out or calls someone a bastard , and I want to apologise on her behalf, people say to me – ‘that’s all right, it’s the illness.’ But no-one condones violence. Lucy says to her, ‘You must not abuse or I will call the police.’
I say that is a very frightened person hitting out. I try to think of other language to use.

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