It is a sunny morning and I have found my sunglasses.
They were lost for a week and I have been unusually irritated, repeatedly going through the pockets of all my clothes, asking friends if they had seen them – how could they?– poking around in the undergrowth in the garden, as if they might have fallen there, behaving in fact very like someone with mild dementia.
I found them, when they fell out of a notebook I have to write down ideas. Obviously I had not used the notebook, while I was looking around for my glasses.
The idea of something coming back, of solving a problem, of overcoming a loss, of making a full recovery, feels a bit strange, unreal, light-headed – and I realise how dominant has become the sense of relentless degeneration.
I don’t even in my dreams think of Anna as she might have been without the illness. It feels to be an extraordinary thought, about which I am initially curious and then I lose interest quickly, as it is totally irrelevant.
She used to talk about work, my work. ‘I used to do that,’ she would say. ‘Why can’t I do that?’ She hardly bothers now. My work is an irritant, that takes me away from her when she wants me to stay.
Last night Dan helped me throw away a pile of old reference material to do with computers that have long gone. I found the receipt for a laptop. It was one of the best at the time, when Anna bought it in March 1998 for £1837 from a specialist shop in Tottenham Court Road. The receipt has her signature, strong and familiar. She bought it to help her with her research, as she had registered for a PhD, but she never learned to use it, and in two years she was finished as someone who works.
At first I thought of that laptop, which was so powerful and quick to the touch, as like a Ferrari in the garage. But it suffered also a swift and relentless decline. I have talked to Dan about it, and what was state of the art in 1998 is not now able to run any system that you would use now. It was full of potential, now I can’t give it away to charity.

If you’re thinking about dementia, you’re thinking about death. I probably think more about death now, aged 62, than I would if this had not had happened. I don’t know, though. Friends die around us at this age, often abruptly and quickly. I have just heard about a colleague, who I was working with in February and is suddenly very ill. I am more likely these days to see people at funerals than weddings. But because of Anna’s illness I have the opportunity – if that’s the right word for it – to reflect more on death than I would have done otherwise.
What is a good death? I would like Anna to die peacefully and with dignity and I would like her to die while I can still make sure that this is how it happens, Of course she may live for some years yet: she may outlive me, but I hope not. We will not be able to maintain her quality of life indefinitely. But I would not want to hurry her death – I am not interested in that argument.
For the moment she is smiling, benignly bemused. You can have a good tiredness, we used to say.

World Cup – knock out stage.
We went to the sea on Sunday – a good decision, with Jane providing a picnic on the Sussex coast, to see the Seven Sisters, but we could not get anyone to go with us because of England playing in the World Cup in the afternoon. I heard snatches of commentary from open cars as we drove back through London. As it happened we were back at 5.00, in time for the second half. Except that it took us fifteen minutes to get in the front door. It is a great test of a man’s patience, to stay calm and quiet while his wife stands looking puzzled at the front step, and England and Equador are slogging it out 0-0 in the back room. But I was rewarded. Anna made her way in, Beckham took yet another free kick, but this time it was a perfect bend-it-like-Beckham, 1-0, enough to win the game. And I can say I saw it, I was there.
Later two English players were booked for timewasting.

I am thinking how there is a tariff on experience.

There have been times that Anna and I are asked to consultation meetings about the development of services. We are not paid anything for that. Or we have taken part in the training of new staff – which attracts a small fee. In the same NHS trust I have consulted to the mental health in-patient service, and for that – I was now a professional not a carer – I was paid ten times as well.
By a strange coincidence, I have become aware of two initiatives by the same multi-national pharmaceutical company. In onc case, their agents have approached our local Alzheimers Society, wanting to interview people with dementia. They would pay £35 each and £25 to the local group as an introduction fee. (An introduction fee seems odd to me, unethical even, but perhaps it is usual?)
Second, a private sector consultancy has approached me as a kind of expert witness, to help on a project for the same company, looking at the future of health care (not just dementia care of course). And for that I may also be paid ten times as well.
It is far better to be an expert by reputation than an expert by experience, it seems.

It is easy to see why I find some of the Buddhist ways of thinking are helpful. On Sunday I went on a retreat. It was father’s day, which is not specially relevant, but Dan stayed with Anna, so I could go and sit on my butt and also do walking meditation in a school grounds, and it seems they had quite a calming day too.
The teacher - Yanai Postelnik – made a distinction between reacting and responding to what is going on around you. His theme was, responding to the way things are. In my words, finding a way to accept without being passively fatalistic. Living with dementia needs to maintain that distinction, somehow.
Another thought: the pain is in our reaction, not the thing itself. I agree but that is difficult to practice. In a similar way, it is difficult, using psychoanalytic language, to take back projections. On denial he said: when we push away experience, we push ourselves away from experience.
One thing Yanai said got a laugh. If we are going nowhere, we might as well stop and enjoy it. This makes me think about quality of life questions and dementia. There are ways we have quite a good time – some of the time – though that means taking pleasure in simple things. Anna is calmer again, after a very difficult two weeks. And at times it is a pleasure to sit with her and experience her appreciation of having a drink or looking forward to seeing an old friend.
Her short term memory may be shot but she can still look forward.

Anna gets her words in a twist, but it does not help to correct her.
‘It is a slap in the face,’ she says.
At a work meeting, I noticed that I was stuttering more than ever. I was never specially good at finishing my sentences – and now I live in a household where we don’t often finish sentences at all. I think this might be having an effect, as I move between these different worlds.
I used to like the story of the young wife and mother, eager to support her husband, so that, when he invited the boss to dinner, she made a special effort, wore her sexiest dress, cooked an excellent meal, hung on every word that the boss spoke and responded with witty intelligent comments, and, just as she was beginning to relax, thinking it was going really well, she realised with horror that she had leaned over and was cutting up the boss’s steak into small pieces for him.
A sudden worrying thought. Have I told you that story before? Am I repeating myself?

It feels like there’s change in the air. Anna is calm, except when she is upset, when she is very upset. Monday morning started with her having new problems first thing, and Ann helped her to get herself sorted. Then there were others to help, her friend Lynn, and Lynn’s husband Bob who is painting the outside of the house. I had a telephone call with the community OT, another Lynn, helping me to think through what is going to be a busy week. She is organising a meeting of all the carers for Wednesday – which is a really good way of supporting them all, and I appreciate what she and Kate, the nurse, are doing. And she gave me advice about another assessment that is being made on Thursday, from the social services OT department – their third assessment this year. And the district nurses will be calling to make their assessment – possibly on Wednesday. More assessment than action, I might think, but that is the way it works. Marta, one of Anna’s Polish carers is back from her wedding in Poland, and will be coming today again. I hope that will work out. Lynn herself will be back on Friday. I feel that we need a social secretary to cope with all the coming and going.

There was an article in Saturday’s Guardian – Diary of a Dutiful Daughter. Extracts from a daughter’s diary about the difficulties of getting care and the associated financial costs, for her mother who has dementia. It is a very clear statement of the way people with dementia may be in effect abandoned by the services which are supposed to be helping them.
I wanted to email the journalist, Melanie McFadyean, but she did not give her contact details – to say, yes, and could you also write about early onset dementia, where the issues are the same, but the protagonists are middle-aged, the same age as the professionals who commission and deliver services. As long as we think dementia is something only that happens to aged mothers, we will continue to think there is nothing really to be done, sad isn’t it.

‘You don’t like me.’
‘Yes, I do.’
‘Then you must be kind.’
I can hear her protesting upstairs and the carer is talking to her quietly. Her screams sound like torture. I make an involuntary move to the stairs and then stop. It is difficult to leave them to it. She is calling my name. Shall I go? I think it is better to let the carer make a good routine if she can. I am late for work: I go up anyway.
These are the most stressful times at the moment. There is something unnerving about her terrified protest at being touched and this is a new thing. It is when there is a new difficulty that it gets stressful all over again.
Most stressful was that year around the time of the diagnosis, when we knew very little of what was happening and what it meant and what it was going to mean. It gets familiar and then, abruptly, different again.
It is the same for everybody, I suppose. Uncertainty is what always makes us fearful, although we are supposed to love change in a postmodern promiscuous sort of way.
But it is easier to hear other people screaming: we don’t hear ourselves except in the echo.
What is stressful about dementia? Sounds like a daft question, but I am thinking what is different from the stress that we all experience in our undemented 24/7 globalised hypercognitive world. It feels more real, for a start.
I have been reading the recent OPUS report on their analysis of ‘listening posts’ and societal dynamics in twenty countries around the world – an apocalyptic vision of ‘the anxiety, frustration, anger, rage and feelings of helplessness and powerlessness that were arising from loss and a failure to cope with a way of life that is experienced as threatening their very identity.’ Sounds like us! But then it makes me think there are some advantages of staying in the world we know, where experience is real enough – even if it is unrelenting in its immediacy At least we can work with what we have got, and not ‘a sort of virtual world where members of society share the illusion that everything is possible, denying the reality that true relationships are not achieved.’ [Organisational and Social Dynamics, Vol. 6, No.1, pp111-142.]
If you want to get real, living with dementia is certainly one way of doing it.

Anna does not always like to be touched. This has become more apparent in recent weeks and it has put a strain on those who are responsible for helping her with washing and dressing and so on. I go back to Nancy’s account of the burns unit and her work with a six year old boy, with a burned face, who has to have his face washed:
‘I say that when he has the bath, it is not likely to hurt much at all, but it will be scary for him. I remind Sue that she knows from when she tried before herself that he was screaming before she touched him, when it certainly wasn’t hurting. I say it may help her to deal with him firmly and calmly if she can remember that he is frightened but not really in pain. I say it is important when we are in the bathroom that she is very matter of fact and calm and clear that he has to have it done.’
Later:
‘We all arrive back at his bed, and Max and Theresa are waiting there. Max comments that they hadn’t heard any screams. I say, ‘no, he did really well.’ Dad asks him if it had been as bad as he thought it would be and John replies,’Less worse’.’ (from, A psychotherapy service exposed, Nancy Cohn.)
What would a psychotherapy service for someone with dementia look like? We could think how she feels very vulnerable and touching her quite gently may feel to her like an assault. Touch her when she does not want it and she may hit out: ‘Now you know what it feels like,’ she says.

It can seem like a terrible waste of time, living with someone with dementia – the hours of doing nothing very much, and the increasing pressure of thinking what else you could be doing.
There is a Vietnamese Buddhist monk, who tells a story about his friend, asking his friend if family life was easier than being on his own. I quote:
Then Allen said, ‘I’ve discovered a way to have a lot more time. In the past, I used to look at my time as if it were divided into several parts. One part I reserved for Joey, another part was for Sue, another part to help with Ana, another part for household work. The time left over I considered my own. I could read, write, do research, go for walks.
But now I try not to divide time into parts anymore. I consider my time with Joey and Sue as my own time. When I help Joey with his homework, I try to find ways of seeing his time as my own time. I go through his lesson with him, sharing his presence and finding ways to be interested in what we do during that time. The time for him becomes my own time. The same with Sue. The remarkable thing is that now I have unlimited time for myself!’ (The Miracle of Mindfulness, Thich Nhat Hanh, p.2.)
Well, that’s good Buddhist advice for parents, but it is more difficult, I think, when you are with someone with dementia, and there is no developmental task to make sense of the slowness and the repetition.
I have been reading Everyman, by Philip Roth, which is a fine study of mortality. He describes how a man may be ‘dazed by his diminishment.’ (p.87). ‘Old age is not a battle; old age is a massacre’ (p.156)…. ‘he was in the process of becoming less and less and would have to see his aimless days through to the end as no more than what he was- the aimless days and the uncertain nights and the impotently putting up with the physical deterioration and the terminal sadness and the waiting and waiting for nothing.’ (p.161).
Early onset dementia brings old age forward – it gives you more time earlier in life to think about these things. I used to think that youth was wasted on the young – could we make an argument that old age is wasted on the old – learn to appreciate the emptiness of existence while you are still young enough to despair about it – or, if you are a Buddhist, to accept it?

We were talking about Anna’s medication. Anti-dementia drugs seem to be very difficult for the NHS to swallow. NICE, the National Institute for Clinical Excellence, has a technical appraisal committee that says they are not value for money, not the ones already approved, which have very evidently helped Anna in the past, or new ones that coming along for someone with severe dementia. No-one seems to agree with them. If there is such a professional consensus that NICE has got it wrong, I don’t see why they should not use their clinical judgement and prescribe what they think would benefit their patients. This is a time for creative anarchism. Doctors used to be good at that. But, from the way people speak, you would think NICE guidelines are given the status of licensing the drugs for use.
For some time we could not get anyone to discuss memantine (Ebixa, one of the new drugs) for Anna. ‘We don’t prescribe.’ they said, because the PCT would not authorise NHS payment of these drugs. Don’t worry about that, I said, do you think it could help Anna. A specialist neurologist said, It would be worth her having a trial to see if it would work for her, and so we did. Anna has to pay for the prescription – out of her NHS pension: it is value for money for her - because the PCT said they were waiting on the NICE guidelines.
NICE, according to the government, is an independent organisation. The question about NICE is whether it is about clinical excellence, or about rationing. If the PCTs follow its advice without question, disregarding the judgement of their clinicians, it is a ruthless agent of NHS rationing. There is something Orwellian about its name and its function. But as much of contemporary government is beyond irony, a regulatory agency called NICE is only a small example of dissociative thinking, although it will affect the lives of all those people who are going to be diagnosed with dementia in the next few years.

Watching the World Cup as a silent movie.
As Anna is not following the action, she may want to talk about something else – usually very serious, perhaps about how frightened she is of getting ill – and she will suddenly get to her feet in an agitated way, just as all over the country many thousands of other people also suddenly stand and punch the air, as Beckham crosses the ball and England score, 1-0.

Three years ago:
The psychiatrist asked, Do you know why you have come to the clinic? Yes, I have Alzheimers. What do you understand by that? I have tangles in the brain …
Now:
I don’t need you. There is nothing wrong with me.
I decided last evening to challenge this. We were talking about her medication. (The anti-dementia drugs that NICE has said are not value for money. So we have to pay for them ourselves, as they are value for money for us. ) I said, they are good for your head. Because you get muddled. Because you find some things difficult. I used the word, Alzhemers. She looked at me as if I had just blurted out an awful diagnosis that she had never heard of (and this must have been how she experienced this moment.) She was devastated, struck out her arm, like a king fu fighter.
I thought for a moment that I was right to be doing this, trying to be real – earlier in the day we had been struggling with her determined rejection of help from the carer, who she used to trust, and had been helping her for more than three years.
It is the same question that I have asked before. What do you do when you are in different worlds - try to make connections or pass like ships in the night?
But this was the wrong time, the wrong place. The door bell went and my family arrived … my son comforted her, my brother went to work on the making of a ramp into the garden, and Christine made the evening meal.
The evening carer returned and Anna went to bed. But she still had the devastated face of someone who had heard terrible news.

I’ve done it again! Forgot, when I got home from work, to pay the congestion charge.
(For anyone who doe not know London, you can drive through the centre of town but it costs you. And you have to pay by midnight.) The trouble is, I don’t do it so often, and this time, like the last time, though I had made a note to remember, when I got home, I was suddenly busy again with the momentary immediacy of Anna looking at me in a puzzled way, and my trying to catch up on what she was saying and wanting, and I forgot again. For the fifth time this year. That is a hidden charge of living with dementia, over £200 already in excess charges.
The system is inflexible and unforgiving. You can sit up sharp at five past midnight, after an evening of going to bed, getting up, reassuring, swearing under your breath, checking emails, having a drink, hoping to make a phone call, settling down again, and again, and then suddenly you remember, but it is too late. There is no way of saying, sorry, I forgot. You just have to wait for the penalty charge five days later. Five times this year already.
This relentless pursuit of the offender is undiscriminating. Unless you are a wide boy in a white van, or have French number plates, or are a U.S. diplomat in a limousine, in which case you can’t be bothered. I cannot write to the Mayor of London and say, I am living in a forgetful household and apply for a discount.
As I said, it is a hidden charge of living with dementia.

It is high summer, when even the dullest leaves glisten. The children next door are practising the piano. Even on a day like this we are in a world of sharp differences, bees good, flies bad, but I am ready to revive the idea that we live in a retreat house, where there is no stigma to dementia.
‘It’s not my fault,’ she says, repeatedly, facing down an imaginary accuser.
What would a dementia retreat house look like? There would not be deadlines or targets or performance management. None of the pressures to perform that drive most of human activity, even if you have dementia. I visited a C.I. unit in a local authority. C.I.? Cognitive Impairment – and, no, the people working there didn’t know what it meant, themselves, though the regime was formally therapeutic – every activity had a therapeutic purpose eg. maintaining independence, to be implemented in a very controlling environment of regulated tasks and locked territories!
My idea of a retreat is more like a Greek village, where the rhythm is slow and slow, and you wear simple clothes (only the young people are out to make an impression) and you eat in the shade and the stray cats lick up the scraps from the floor, and if you are a woman and have trouble with a step, a man takes you by the arm … well, it’s dream, but that’s very much as I remember it.
Anna used to say that I wanted to live in a monastery where they let girls in. Now she is worried that they let too many girls in, the different carers coming during the day.
It is not exactly a Benedictine rule here! But she likes to do things the same if she can and there are small rituals around acts of everyday living.
A retreat without squalor – that is what we are working for, in our own way.

‘I want to go to Lyme Regis with my mum.’ Then she remembers. ‘No, she’s had it.’
‘I’m going to die sometime. It’s so tiring.’
‘Ha ha ha. You’re trying to kill me.’
Seemingly random statements, but signs of thinking about death and dying. Dementia has been called a living death, so maybe this is an area to think about – how we think about death and dying, and about others thinking about their dying.
For example, I remember being told by a psychiatrist that the dying are relieved to be told that death itself need not be painful. The idea of a living death brings to this side of the Styx what is usually assumed to belong to the other side. There was a book some years ago, the Limbo People, about life in an old people’s home. I think there is a theory that in ordinary dying there is a process of detachment, as the usual concerns no longer matter, and the individual gets ready to let go. Limbo, as I understand, was an early version of a detention centre for asylum seekers, the basically good people just who did not have the right paperwork, being old testament or unbaptised.
Anna has had a healthcheck and her GP visited last week. They used to work together in an adolescent psychotherapy service. Her heart, liver, thyroid, etc, are all functioning well. But she thinks she is dying.

It was getting late and I reassured her, we are at home, it is the best place.
‘Don’t be funny,’ she said. ‘Very good. Very funny,’ she repeated, with heavy irony. She did not think she was at home. She did not say where she thinks we are. These are some of the worst moments, when we are in different places, it seems.
We have a very good system now, with good carers. They are very different, Scottish Catholic, Irish, Jamaican, Ugandan Muslim, and it would be a good study, how they bring their cultural identities to bear on the task, with a sense of duty and care. The trouble is that at the moment Anna is giving them all a hard time, and however experienced they are and say that it’s water of a duck’s back, I can see how they also get hurt and don’t like it at all when she tells them to get lost.
‘Who is that little girl? What does she think she’s doing?’ The little girl is in her forties, with two children of her own and expecting to be a grandmother soon.
The carers try to hold their own – ‘don’t talk to me like that.’ Later Anna was bemused, can’t remember what she said. I don't know why she has become so worried about other people and whether this is a temporary phase or what. So for the last two nights the carer has gone and I have helped her to bed. She is tired out. I have sat at the end of the bed, with a glass of whiskey, as she has slowly settled down. After a dozen times of her getting up again, I was also feeling bleary, compassion masking the rage.
Between times, I was reading a novel by Hilary Mantel, Beyond Black. A story of ‘sensitives’ who can communicate with the dead but can’t tell the punters that people are just as obnoxious when they have passed on as when they were alive.
‘You start out, you start talking, you don’t know what you’re going to say. You don’t even know your way to the end of the sentence. You don’t know anything. Then suddenly you do know. You have to walk blind. And you walk slap into the truth.’ (p.262)