‘I don’t want to upset people.’ Anna used to say that, when she was still able to write her account of the illness. Why not? I thought. There has been a lot on television recently, including Coronation Street. In the Alzheimers Society newsletter the chief Executive Neil Hunt commented that some people ‘ think it focussed on the experience in such a negative way that it will deter people from seeking help. It is a difficult area. We know early diagnosis brings many benefits, but don’t we have to face the fact that dementia does bring many desperate challenges?’ I agree with him on that. The newsletter itself is - probably rightly – very positive in its approach, with success story about self help and support and tips for coping.
I remember when Anna and I were asked to a meeting with another couple. The woman - with Alzheimers – was silent and the man spoke about her as if she was not there. I was able to observe how good Anna must have been as a family therapist, as she cut across the man and got the wife to speak for herself. At the end of the hour the man was distressed, his defences weakened. Was this helpful? I thought so at the time, though the professionals present looked uncomfortable. It was only when Anna was herself able to see a psychoanalyst that she found a professional who was able to talk about her fears about what was happening to her.
If we are not upsetting people, what are we doing? I see Anna’s friends, when they visit, and how distressed they get. Dementia is upsetting in a particular way - it is devastating in its cruelty, as if we are being played with by a malignant spirit: so you thought you were clever, made in God’s image, cock of the walk, king of the castle, the ego centre of your universe, well, we’ll see about that. (Yes, I know these images are male – dementia is an attack on potency. Perhaps that is why of Anna’s old friends, it is more often the women than the men who are still able to visit.)
Anna doesn’t remember the details now when she has been angry, difficult, shouting at the carers, refusing to be helped. There was a lot of that in the last week, perhaps because she had a headache, perhaps an infection. Although she doesn’t remember it all, she sometimes apologises, as if she is trying very hard to be good. When she herself is in tears, this is natural enough – normal, if such a word has any meaning. It is difficult enough without having to be cheerful all the time.
posted by Tim @ 7:40 AM
3 Comments:
tim, i found your account moving and poignant, amal
Tim, I am at Miranda's and we have read your experiences and thoughts about living with Anna. I wanted to say that I found your writing lucid and evocative - it conveys so much of what it can feel like to both lose one's mind and also the struggle of having to witness the loss of another's thinking capacities. We all know those experiences - if we are lucky - fleeting and elusive of not being able to contain and hold onto one's mind and capacity to think and be in the moment and I appreciated both your expression of the particularity of your experiences and also how it touched off many thoughts and recognitions for me. With all good wishes, Amal
Dear Tim, from Miranda.
In response to your blog – I hope you will go on, and perhaps more of us will want to try and write something of our own experience of what is happening to you both.
Anna was and is still my friend. But my old familiar contact with a friend is lost, and I mourn her. When I see her nowadays the spark of Anna is present even if she no longer knows my name. But she knows there is a contact between us which has a recognisable shape. I think she knows still at some intuitive level below words who I am, and of the years of friendship between us. But she can no longer speak of this.
It is very distressing to visit and find what has gone on going missing and more painfully will go on going missing. It has been distressing from the beginning. When I first came to stay with Anna one weekend while you were away, six years ago and shortly after the diagnosis, Anna was still herself – albeit battered by brain surgery, and by an additional minor operation that had left her bruised and post- operatively frail. But this was the first time I had been on my own with her since the illness had taken hold.
We talked about the illness and Anna’s fears for the future, her sadness and anger at having to give up work, and then moved into gossip and laughter. We were friends. We talked as equals, Anna perceptive with all her humour and insight and we were serious too about what was happening to her. After a bit Anna said would you like to see your bed? - So we went upstairs. Anna said here it is – and there it was in a clean and tidy room but without any bedclothes at all and certainly no blankets. (Your cleaner had followed your instructions to prepare the room for a guest but had not understood that this meant make up a bed). Anna saw that I was perplexed – I was more than that; I fell into an acute distress, which I tried to hide. What was it I needed? – Anna could see I was indicating that something was missing? Did I mean, she said, what was on her bed? And we went to see, yes a duvet and a sheet. Oh you mean this, the object whose name had escaped her. She knew she did have some more of these. She opened drawers and wardrobes – We looked together – Anna gaily and I increasingly despairing. Of course you telephoned later on and told me where the airing cupboard was and there indeed were sheets and blankets and a towel.
Anna no longer knew she had an airing cupboard but she did intuitively know what was going on for me. Next day she said it was like we were both four years old, and I had come to play at her house, and stay over, and I had wanted to ring my Mummy and say do you know Anna does not have any sheets on her bed in her house. And I had wanted to go straight home to my own home. And that was it exactly; I had felt like an abandoned four year old having to try to be grown up in the face of an abysmal hole in the world.
On my way home the next day, I got to the top of Highgate Hill and burst into tears.
What moves me the most nowadays is when after a day with Anna when we can no longer go out, and when she has become increasingly tired and despondent, how as you come back into the room, her face lights up.
Anna’s and your courage to go on facing this abysmal hole together is touching and heroic and terrifying.
With love - Miranda
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