I am going away for a week, working. Work in this way doubles as respite. It will give you a break, people say: you deserve a rest. For those who know, working on a group relations conference is not reallywhat you would call a rest, but I recognise that what is being said is meant well.
Unfortunately health and social services provide care to support carers. It is unfortunate because just at the moment I am not a carer but a worker. I need to know the who and when of what’s happening. I am managing the informal system , with a rota of family and friends – the only gaps in the rota are times when a local authority carer is scheduled to come in – I have had no confirmation of what’s happening then, but I know that two of the regular carers are on holiday.
Informal carers are mostly grateful for what they can get: workers demand and need something more reliable than that.
It is policy that people should be able to stay in work; there is even a Carers (Equal Opportunities) Act that no-one has heard of. But the street level bureaucrats who really make policy are not concerned with my need to stay available for work. Psychologically as well as physically available.
My experience of living with dementia prepares me in a way– it develops my capacity to stay with the moment, however long it takes.

If you have bad eyesight, as mine is getting now, and you write notes to yourself without using your glasses, as I do some evenings when I am sitting with Anna, this is a bit like the experience of short term memory loss. You can’t remind yourself of what you have just written. Thoughts are suspended like drops of liquid, continuous but separated.

One of the carers is going on holiday for two weeks and had not thought to tell us. Anna likes her, her face lights up when she sees her – everyone likes her – but she does not think it important at all whether she is with us nor not. Not to her, and not to us. Such separation of behaviour from its meaning is hard to take.
It is evident that some people, who used to value knowing her before she was ill, do not think that there is much meaning in visiting Anna. And yet Anna appreciates every contact. Jane, her friend from childhood, came yesterday and Anna talked of her as a sister.
Those who stay away probably think that it does not much matter because she will not remember them anyway. As if that is relevant, except to one’s narcissism.
There is a famous Alzheimers research study of religious sisters - the Nun Study.
The researcher was saying goodbye:
" ‘You know, Sister Maria,’ I said, I really like you. You’re one of my favorite sisters.’
Sister Maria adjusted her eyeglasses and slowly sat up, her rosary rocking back andf forth in her hand like a metronome, marking the moments it took to right itself. Finally she smiled at me again, her face glowing.
‘I love you too’, she said softly.
She then shifted uncomfortably and leaned toward me to examine my face. Her eyes narrowed into thin creases: her eyebrows bunched together as if my face were a puzzle she could not solve.
‘Who are you?’ "
(p. 8, David Snowdon, Aging with Grace, the Nun Study and the science of old age.)

Lynn has been Anna’s friend for nearly twenty years now. We met through the children: her son was at school with our boys. She came first to clean the house and has been coming every week since. She now comes three days a week, not to clean the house but to chat together as two women – sometimes she reads poetry.
This week Anna said: This is silly but I’ve forgotten your name.

Looking back, I wonder why Sundays are often the worst day. The exhaustion of a Sunday. I remember the Tony Hancock radio sketch about the boredom of a Sunday. There is nothing to do, nowhere to go, carers, friends, family are with their families or out with their friends.
I remember a Sunday when the next door neighbours invited us, a party for their little boy’s first communion. We were sort of looking forward. We often hear the children on the stairs, or practising their music lessons. I thought we might meet some of the neighbours, show a frendly face. It would be part of the fight back against the reclusiveness that we are being forced into. But Anna got confused with the carer trying to put her into a dress, it became a struggle, so that in the end she could hardly make a step out of the front door. It took us fifteen minutes and we were still on our own front step. People went past. The father next door came out. Another man was smoking a cigarette and gave us a look, as we stood there like a tableau – Jesus and Magdalene on a day out.
‘I thought I was innocent,’ she said. ‘I’m so tired.’
And so we went back indoors. Anna has not been out more than three or four times in six months, once to the hospital, then a rare dare of a drive to cousins in the country, and a disastrous attempt to visit our local chemist, when she panicked walking the five yards across the pavement and crouched down as if caught in a sudden rainstorm.
I can always try to read the Sunday paper, I read all the comment, the latest problems of the government trying to look decisive. Holidays are not the best of times for politicians. I like my son’s analysis that Blair and Brown are a married couple, behaving like those couples you see not talking to each other in a seaside café … Anna does not like it when I rustle the paper. Inside I’m saying, so I can’t even turn the fucking page??? Let me be able to do SOMETHING. The television is on, with the sound down as it distracts Anna, a government minister is talking about the terrorist threat. I can’t hear you. Another drug - one that helps people with bowel cancer - has been found not to be value for money by the NHS. Value for money would be spending on healthy people. I pick up the sports pages. I enjoy the posturing of the players and the managers. They are like small-time Greek gods with their cheating and their feuds and their power plays. Like the politicians.
And I will be with Anna again next Sunday. It is the end of the summer and the late August holiday weekend and the next door family are still in France. I expect it will be very quiet.

She says, very politely, to the carer, for whom English is not her first language: ‘I don’t quite understand what you are saying.’ We could be in a lady’s drawing room. Later she says of me: ‘He hates me. He wants to kill me.’ Well, that is more direct, I can understand that.
Earlier, Lynn came to see Anna. I wanted to tell her that we had made a little progress with the wheelchair, going to the car. But Anna did not remember, recognise any of that. She was on her feet, outraged. ’I am not ….’ I named her illness – during the week she had found that helpful: ‘I need to know the truth.’ But, as happens now, each time it comes as a great shock, as if she is hearing baldly for the first time. She stood in the centre of the room, shaking with rage. ‘Why? Why me?’
Lynn carefully talked her down – ‘It’s an illness – it affects your memory – it’s not your fault – we don’t have a reason – a sad thing that happens to people …’
Later Lynn and I talked. Was it right to talk the truth? Sometimes. But sometimes, perhaps not?
Sometimes she talks of how she is thinks she is dying,. Sometimes she is cheerful. I asked: ‘You saw too many people today?’
‘No – the lady here, she’s lovely.'

What does she know? Yesterday Pat reminded her that she has Alzheimers. She had forgotten. She accepted the information. ‘I must know the truth.’
I have found a notebook, only the first page is written on – and Anna’s writing is already altered, so it must have been about seven years ago, before her diagnosis:
Ey sight not clear
Jumpy movements
Upper chest
area
clumsy
link with
my slipped
disk
one year ago
lower back
clumsy
fewer
control
sleep late
Her list of symptoms then is consistent with now. She was looking for reasons, causes. She is still trying to work it out.

The effects of dementia are like a spreading stain. It is becoming almost impossible to have a conversation around Anna as she can’t tolerate what she is unable to understand.
I made a poor joke about Dan’s new mobile, that it was like a toy you used to get in a cornflakes packet, but she would not have it – told me off for making a stupid comment, which it was. A better comment of his was is that they could sort out the security queues at Heathrow by offering everyone a sausage roll, but she was not having any attempt at a laugh, which is essentially about giving momentary respect to the absurd. Sad, for she can still be very funny herself. Her life now is so strange, I suspect, that she cannot now differentiate easily the absurd from the ordinary activities of daily living.
Yesterday, we visited Nancy for lunch, and a good time was had, but we could not talk of anything much as Anna became distressed if we talked about work or world affairs. She used to complain, because she still wanted to work herself – now she worries that work will take me away from her. The cry of independence has become a sob of dependency.
We were hard put to think of things to talk about that Anna would find tolerable. The love life of younger people perhaps – or the taste of raspberries.
At home I am watching Peter O’Toole as Lord Jim, with the sound off, about so called cowardice and so called courage. I am learning to lip read the intolerable.

‘I’m not an invalid,’ she says. My father was the same, and felt insulted when someone suggested that he might claim invalidity benefit.
You won’t get in to a football game if your ticket is invalid. Or a country if your passport is invalid. It is as if you are excluded, without appeal, condemned to stay outside, a non-person without the ordinary rights of a citizen.
‘I’m not a baby.’ But then she said, ‘but it’s getting more like that.’
Invalid or baby, the choices are not attractive ones.
‘I’m not stupid. You think I’m stupid. I’m stupid.’ That’s a third possibility.
All these accusations that she feels are being made against her – and by her – are because she is dependent on others for help.
’We all need help,’ I say, in a bland nonsensical attempt to be reassuring.
But we are facing a real problem here, the perception that dependency is bad. Stories about how Prince Charles has his toothpaste squeezed by a manservant somehow don’t convince us that it’s all right to have other people attend to our needs.
Slowly Anna is coming round to accepting some aspects of her dependency - so that I have now found that it is possible to feed her by myself putting the spoon to her mouth (this is new). And this way she is eating better. She may at any time reject her dependency and the spoon will go flying.
The big experiment is with the wheelchair. Everyone wants her to use it. Joanna, who is with her in the afternoons, wants to take her to the shops. The chair has been under wraps under the stairs. But then Anna got stuck in the kitchen, and I got out the chair and she sat in it. It was a small victory – or defeat. And now that the path is ramped to the pavement, Daisy and I were able to use the chair to get Anna to the car today, when we were going out to the country. It made possible what was becoming impossible.
My dad didn't like being an invalid but he loved his wheelchair.
But every victory like this really is a defeat. I am lifting Anna over thresholds several times a day like a newlywed husband who can’t get enough of it. And each time I know that she is losing the ability to stand on her own two feet.
Dependency is bad, it’s in our genes.

They have done a really good job on the path. Two men arrived from the local authority, and they were very thorough and careful. This week they have ramped the last section down to the pavement level, so that Anna should now get out the garden gate without too much difficulty. The trouble is, they have not done the top path from the front door – this has got to be a separate job, to keep it within budget, and has not yet been scheduled – so Anna can’t actually get to the new path.
I am sure there is a logic to this.
They first arrived exactly three months after the referral was made for this work. This has me wondering. I don’t know of course how this works at all, but suppose that their department has a target that they do category one work within three months, they could say they have done that. Except that the work has been split into two jobs, so according to this line of reasoning, they might even have another three months to finish the job. I hope that it will be quicker than that.
There is a balance in the affairs of men, when a target is also a useful way of keeping a tight control on resources.
It wouldn’t matter, except that six months is a big chunk out of the declining time that Anna has to hold on to her independence.
I will phone the department on Monday.

Anna has just seen the morning carer arrive and given her a smile!
Yesterday was a very good day. The system worked well. Anna was more accepting of the carer, her second day in, and then we seemed to get on well all day.
It is worth remembering this, after other days when I think there is nothing to be done and the situation is hopeless – like a cricket captain in the field, when all the catches are being dropped and the there seems to be no way of winning. (But England were winning the test match.)
We had an assessment visit from the social worker, Liz, and that was a bonus. Liz was good at what the best social workers are able to do, relating to Anna – like Andrew and Julian, old social work and psychotherapy colleagues of Anna, I found myself ‘thinking about a time when it seemed possible to consider social work’s unique position amongst the caring professions, on the boundary between the social and the personal.’ (Cooper and Lousada, Borderline Welfare, p. 5) So Anna responded to her, wanted to talk, was keen to negotiate more visits. Liz remembered that Anna had been at school with Virginia Wade. Someone who can keep alive a memory on Anna’s behalf is always a friend. It seemed that she was from that benign world that Anna is afraid of losing.
Earlier we had a visit from an old friend I had not seen for thirty years. For a time Anna was out of the picture and became frustrated. Then we showed her a photograph where she was at the centre of the picture and equilibrium was restored.
And another bonus, another professional visit, Lynn, who Anna likes to see – how do you describe what an occupational therapist does? Like a social worker, only more hands on? We talked about special cutlery and cups and non-slip mats and whether Anna might have her breakfast before coming down stairs. (My first wife was an occupational therapist. She used to help people manage the fact that they heard voices.)
Anna tried to explain – more with gestures than words - about a man she did not like. ‘Tim?’ asked Lynn helpfully. But she was talking about the Middle East. She had seen the images of bombing and children on the television. It’s like faces. At times it seems she recognises nothing, but then she does, clearly.
I gave her a drink. She was very thirsty.
‘But it doesn’t change.’
She has to live with that.

We had a birthday party for Anna. In the morning she was unhappy about it. There was a different carer, as Daisy was at her son’s wedding, and Anna stood at the top of the stairs for forty minutes, while I said to myself, it doesn’t matter, with a list of things to do hammering in my head. But Christine brought lovely food, and people came and talked with Anna in the house and with each other in the garden – if our friends are so provoked to different positions by the Middle East crisis, God knows what strength of feeling is in those living there.
I am making a fountain to bring some more peace to the garden.

I have been on the radio – just.
A week ago I wrote down here a conversation that Anna and I had on a Saturday afternoon. It had become very difficult. As I wrote it, there were just a few words, about a hundred and fifty, but with repeats the conversation in real time had been over four hours long. (See my posting, 1 August, conversations on a lazy summer afternoon)
Last week there was a series of programmes about memory and dementia on Radio 4, so I sent in this extract from my blog as a way of explaining some of the issues of communicating, both talking and listening. A young woman phoned me, would I record it for their programme on Friday. She explained they only they wanted a minute. So I did the hundred and fifty words.
There had been programmes from Monday to Thursday so by Friday the editor was probably a bit tired of the subject, and there were just three brief comments, including mine. The extract, describing four hours, was now edited down to less than a minute, so they cut the bit where the conversation had got difficult, and somewhat lost the plot. It did not leave much time to make the point about nedding to listen, before the programme went on to interview Michael Winner about his eating habits.

I woke up this morning to hear a researcher saying that they had identified risk factors for dementia, obesity, high blood pressure, high cholesterol – much the same as for heart attacks. There was a comment that these finding would be helpful in recognising that dementia is a disease, and the risk can be reduced by making life style choices. But Anna had none of these things, when she was diagnosed aged 54. It is like the current emphasis on using the brain – use it or lose it – but Anna had just edited a book and registered for a PhD. She has had to live with what has been awful, unpredictable and ruthless in what has happened to her and doctors have been unable to give any causal or lifestyle explanation . Even now, over six years after her diagnosis, she asks, Why me? I have done nothing wrong.
The researchers today may have good data for their findings, but I think this is part of a wider fantasy in society to that you can eradicate disease by living a healthy life. It doesn’t work quite like that. Dementia is no respecter of health – or wealth – or happiness.
It is the same with other diseases. I remember being told that Jackie Onassis was puzzled that she had cancer, when she had looked after her body so well.

Conversations during a lazy summer afternoon.

A. I’m frightened now. But I know you will be with me. I get very low.
T. It’s understandable.
A. You think so? (pleased) That’s a nice thing to say. (knocks over a glass) It’s not juice I want, it’s love. Come back.
T. I’m here.
A. The real you. You were a lovely man. Not now. (goes to front door) There’s a man here, who’s trying to make …. who did something awful – and the other person hadn’t done anything.
t. I thought you might have a drink with me.
A. After you have been so horrible to me, I’m afraid I can’t. How can you do this? After all the things I did for you.