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.

Tuesday, September 05, 2006

What is the connection between being in a group relations conference and living with dementia?

None at all, except that I am in the position of doing both.

I came back from working at such a conference - ‘for senior managers and change agents on how to be more effective in the workplace’ - a confused pattern of overlapping roles, and primitive and sophisticated organisational dynamics - to something not dissimilar at home.

I registered first my shock at how frail Anna looks. I have been away a week and little has changed. But coming back from a world of work, her vulnerability, as someone past work, was shocking.

At first she as calm and pleased to see me. Only later the anger returned, with the idea that I went away from her because I did not like her. We discussed what is ‘normal’, her husband going out to work, but she did not find it convincing. For myself I tried to find the cartoon image, the suit, the rolled umbrella, the briefcase. Returning to a welcome by the fireplace.

Anna: Do you like me?
Tim: Yes, I like you.
Anna: One day you will say no.

The issues of love and hate, of trust and manipulation, of leading and following, are real enough in a working conference of a business leaders, but their plain speaking is nothing compared to her insistent examination of her fears.

Anna: What have I done? I wanted to have a baby. He wouldn’t do it.

She sent away the speech therapist, back from maternity leave, who came to visit. She moved from coherence to incoherence, exhausting herself. It seems that she has cried for a week.

I am looking at my diary, at the work meetings that I have arranged. I have no idea how I am going to get to them.

Anna becomes frantic, but I don’t know what she means. Blue. Blue. Blue. Then I realise she is talking about her glasses and their blue frames. I wish the speech therapist was here to help us. I know colour is important for Anna in her communications.

At the conference there were miscommunications all the time. There are language differences. Did you say I heard you or I hurt you? And there are cultural differences that make globalisation a farce. What is the difference between a pair and a couple? Our Polish carer pronounces Tim as team. Like an experimental play, where several actors play the same character, collectively we make a good Tim.

In my working life I have made a study of institutional care.

Anna: I can’t do it any more. She is at the limits of her endurance. So am I. But how can institutional care be the answer? If she rejects help from those who know her and love her, how can the comfort of strangers be better?

I can hear her with the carer: No. No.

The more she protests, the more she is being dragged towards the fate that she is most protesting against. I experience a voice inside of me begging her to be cooperative, to be grateful even for what she has got, impossible demands as she fights back instinctively against the closing down of her life.

So what is the organisation-in-the-mind that we are so fearful of?

Someone must have been telling lies about Joseph K. for without having done anything wrong he was arrested one fine morning. (Opening sentence of The Trial, Franz Kafka.)

Anna keeps asking: What have I done wrong?

The carer says that Anna is ‘going to panel’ tomorrow. We don’t know what questions will be asked or answers given. This unseen tribunal decides what resources we may have or not.

Coming back from a group relations conference, I realise that we are fearful of a management that hates us.

0 Comments:

Post a Comment

<< Home