Living with Dementia

2007-05-31T17:04:00.000+01:00

End of the story. In brief:

Anna died peacefully at home on Friday 18 May. For six months of NHS continuing care she had just about all the support and care that she needed. When she could no longer walk, we had a hospital bed, a hoist, a recliner chair – a shower chair to take Anna to the bathroom. The local authority carers continued to come in four times day. (Anne was coming for four and a half years. Such continuity and persistence made other things possible.) We had live-in carers, Lucy, Margaret, Selina, who became part of the household. Lynn came three days a week, talking and laughing and making Anna laugh. Joanna continued to come afternoons to give the other carers a break. In the last month, there were a couple of crises, with emergency services wanting to take Anna into hospital. The first time it took six hours to get her safely home. The second time we resisted successfully. There was an emergency review and an advance care plan to allow Anna to stay at home. In the last month we had oxygen and medication in reserve, if needed, and district nurses to call on – even at 10.00 pm. In the last week doctors visited, the psychiatrist, the GP, the palliative care consultant.
And on the last day Anne washed her hair as usual. I came home at lunchtime from a work meeting and Joanna was with her – her breathing was becoming difficult. And after three hours she just – stopped.

I will want to tell this story. Someone with dementia does not lose her humanity - though it can be put under threat by others. Health and social care professionals have no problem working together when they have common cause in looking after a person –and when managers don’t stop them.

The biggest honour I received was when they recategorised me from carer – a seductive title full of menace – to service provider, the same as them.

May she rest in peace.

2006-12-29T12:03:00.000Z

I haven’t got the hang quite yet of political protest. The local hospital has been closed for six years, and there have been consultations and plans for a dementia care centre and for respite care and all kinds of things that might have interested us over the years. In the meantime the hopsital is adverytised as a filming location: 'the site has five acres and offersa wide range of hospital locations.' In your dreams. The delays continued and the NHS got further in debt and now the plans are much reduced and much of the site will be sold off for a private housing development of luxury flats. They have just put up boarding round the site – perfect for graffiti. I was trying to think of a slogan. A few neat messages appeared – Stop the Cuts, neatly printed with a permanent marker. This could develop, I was thinking, be locally a writing on the wall for the NHS. I thought to go out and write with a shaky hand, (on Anna’s behalf) – I have dementia – but it is the NHS that has forgotten – but I only had a felt tip pen which would not make much of an impression – I just don’t have the necessary equipment of the anarchist. Next I saw in spray paint someone had written FUCK THE FLATS – the more direct approach. And then the usual suspects moved in, spray paint artists with their stylised trademarks. The wall had become just another example of adolescent graffiti, same as anywhere. And the next morning it had all been painted out. Mindless.

2006-11-16T10:09:00.000Z

This continuing account of living with dementia is now suspended for a while. I am now going to revert to a private diary, to keep a more detailed record. There have been 116 entries over six months. I hope it has been a useful record – what researchers might call created reality. If you want, you can access them by clicking on the archive (rightside of page). You can still make comments if you wish.
A blog is a curious literary device, written in chronological order but there to be read backwards. It reminds me of Harold Pinter’s play, Betrayal. I sometimes read books like that – the last chapter, and then if I am interested, earlier chapters to see what led up to it.

Anna, with the help of Rebekah a psychologist, wrote about the onset of her dementia:

‘Can I tell you about the day my brain left me? My unfaithful brain left me slowly, but there also a few exact moments that marked the start of when my brain began to leave. I know I didn’t lose my brain, but my brain lost me. It lost me at a very important meeting for securing funding for research, when all of a sudden there were no words. I couldn’t even say ‘I can’t say anything’; is there anything worse than that? Maybe it left itself behind with my briefcase, full with a career built on thinking, and forgotten on an underground train. Could I have known then I was right on the cusp of moving from being somebody working well in the world to being someone who would soon not work at all? Maybe it was left with the newly begun doctoral research, now archived into boxes. It left me whilst playing scrabble with my family, and it left me when I needed it to guide my coordination as I walked though the world as an independent, energetic woman with a successful career and busy life.

These moments came up on me like the fox, very, very quietly. It was these series of moments, taken together, that started to build into a sense of knowing that something was wrong. One of the first times I knew that these moments were more than a series of unrelated mishaps was on holiday. I went to paint the wonderful hibiscus flowers I look forward to seeing each year in the little part of Greece we travel to. I went to paint these flowers, but I couldn’t do anything. I didn’t realise till then how much that things were happening with my brain, that it wasn’t working. This year we went on holiday and I saw these lovely flowers again. This time I didn’t try to draw them; somebody else must do it now.

It was frightening to know things were changing, to know these series of moments were accumulating into an overall sense of something really being wrong. A friend who is a doctor eventually began to notice the changes that were happening. He intervened, and encouraged me to have these changes investigated. It was one thing to know in private that my brain had become unfaithful, but it was frightening to learn that my brain’s private betrayal had become publicly observable.’

2006-11-16T08:27:00.000Z

I am grieving. Anna continues to live as before. She has a carer with her all the time. The morning carer is arguing with the evening carers. Yesterday more aids were delivered. Last night the carers helped her to bed. I heard her calling but I left them to it. I felt very tired suddenly. She has not gone into residential care – but in a way she has.
I don’t quote her so often now – but she doesn’t say so much now. People say we have done what we can. Today I will sit with her. I will visit her in our own house.
I have written something for publication about the early days – ‘A day in the death …’ A reader, an expert in dementia, does not like the title. But it is true.

2006-11-12T07:24:00.000Z

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.

2006-11-07T08:32:00.000Z

Institutional dynamics at home.
The carers are talking about each other. The ‘early shift’ is critical of the ‘late shift’, etc.
The live in carer likes to spend more time with the washing machine than with Anna. When I did some consultancy with a residential home, I described it systemically as a laundry with bedrooms attached.

2006-11-06T20:48:00.000Z

Anna did not come downstairs today. This is the first time. She was sleepy most of the day, but not distressed. There were lots of carers, Monday is a good day usually. She just didn’t want to come down. Even yesterday, when we had young people around, young to us, she fell asleep almost immediately. We look for explanations – she had a disturbed night at the weekend because of the fireworks, etc. But it was nothing to do with the fireworks, just as her first symptoms of dementia were nothing to do with her mother’s debility. We look for explanations that are not there in the hope that things are temporary.
Mr Churchill, you are drunk.
And you, madam, are ugly. But I shall be sober in the morning.
We all want to wake up refreshed. Anna is not ugly, but she is tired, worn out., and she will be tired and worn out in the morning.
A close friend came on Friday, before the fireworks. Anna’s face brightened, but in a few minutes she subsided into an irritable silence, saying how tired she was.
I was very sad after the visit. We acknowledged that there was not a lot to be said and the friend left.
She had come four months earlier, in the summer. She wrote then: ‘As a friend I can just sit and be beside her and allow my ideas about my friend to float in and out and respond as I hear the fragments of her thoughts and the dream state between us evolves, But I do wonder when she closes her eyes where does she go?’
So do I.
And why, when we have a carer living in now, does she immediately look so much more now like someone in an institution?
I do not think that it is a coincidence that just in these few days she seems to be giving away a big slice of her independence.
I asked the carer if she had any questions. Yes, she said – she could not get the remote to work for the television.
It is good that at times there are two carers. But I have noticed that it changes the balance of power. I see the carers talking together while Anna on her own. They laugh, not cruelly, but she remains frightened and lonely.
Another old friend has a grandchild just learning to walk, staggering, sitting, staggering again.
The regression to dependency is just as remarkable but not so rewarding to watch.

2006-11-03T20:26:00.000Z

I read in the paper that today a hundred years ago Dr Alois Alzheimer presented the first case, a woman in her 50s (like Anna then), who was so restless and confused that her doctors prescribed warm baths and when that didn’t work, chloroform.
The health editor of The Independent, Jeremy Laurance, put s the case succinctly. ‘It strips people of their memory, their personality, and eventually their humanity. It is a progressive neurodegenerative disorder that is incurable and irreversible.’
Advances in medicine over a hundred years have passed Alzheimer’s by. The article goes on to give the usual advice, eat fruit and vegetables, take exercise and keep mentally active. Even nicotine now is supposed to help. Well Anna did those things and she smoked. The article also had photographs of Harold Wilson, Iris Murdoch, Ronald Regan and Charlton Heston. I think they also did most of the things on the list.
Let’s face it, no-one knows.
The article listed memory, personality, humanity.
Anna has certainly lost most of her memory. Her personality ? I am worrying about that, about her passivity at this time - but she only has to laugh and you know it is not all lost. Her humanity? Why is that on the list? She has not lost her humanity. What would that mean? What are clinical signs of loss of humanity?
After a hundred years, Anna is still in the waiting room to be treated.
There are social signs of loss of humanity, eg bad old stories of back wards in institutions of demented patients left to stink in their own urine and excrement. We hope we would not tolerate that now. But meanwhile anti-dementia drugs are not value, it has been decided, while anti-psychotic drugs are, apparently – this is the progress we have made in a hundred years from warm baths, and if they don’t work, give them chloroform …. A social model of dementia should help us to distinguish by now what is to do with the disease and what is to do with social responses to the disease. - see Tom Kitson (Dementia Reconsidered, OUP, 1997, reprinted 1998 (twice), 1999, 2000, 2001, 2002, 2003, 2004 (twice) , 2005, 2006 … )

2006-11-03T19:45:00.000Z

Lucy used to be the carer for a Lady. A Lady, meaning the widow of a Lord. Better than the time she was called a nigger. She has a great job, I think, for seeing into the lives of people.
I went to see our local watchmender today. He asked after Anna. He told me of his brother in law with MS, who will not go out of the house, and his brother’s wife, who has Alzheimers and had a fall a month ago. He does not think she will come out of hospital.
There is a natural camaraderie here- not the same that of as old soldiers, but having some of that quality of shared experienced that can’t be explained.

2006-11-03T18:50:00.000Z

Anna is very quiet, suspiciously so. For two days she has been very subdued. This has been the same time that the new carer has come to live with us and it has all gone very easily. On the first morning the carer – Lucy – gave Anna her breakfast and it was the most natural thing in the world. And so it continued. Where is her old spirit?
I was apprehensive of what I thought would be her inevitable attack on the new person, what are you doing in my house, etc, but nothing. It is as if she has been sedated. Or she is unconsciously acknowledging the new arrangement that she is not even properly aware of – and feeling safer?
Anna: I’m tired – this lady – (she whispers to me) she’s always here.
In a way it makes it very much easier, but I miss the fight in her.
Tomorrow there will be fireworks in the park. And at home?

When the children were young they made a lot of noise. When they were quiet, that was when you worried. I am reminded of that.

2006-11-03T07:56:00.000Z

Yesterday I went to a meeting. I was asked, because they are planning a public meeting about support services for older people living at home in our borough, and perhaps I could speak from experience. The assistant director of social services was going to be there and it was the only time she could make so I changed some meetings of my own and cancelled a work meeting.
The assistant director did not come. The home care manager from social services, who had invited me with some enthusiasm, took a telephone call for the first quarter of an hour, so I waited around – the meeting was going to be in her office. There were three people from the independent sector also waiting, managing services for the borough, so I expect they were used to hanging around. The meeting was going to chaired by someone from Age Concern, who was behind this initiative, but he was later still – he had difficulty coming at this time but had agreed because it was the only time the assistant director could make …
He didn’t expect me to be there, it was a meeting for the managers. I knew now that it was not going to be the best of days.
But there we were, sort of, representatives from the three sectors, statutory, independent and voluntary. No-one had brought notes from their previous planning meeting…. We discussed the public meeting, although no-one had a copy of the programme they had agreed last time – the home care manager wanted to talk about one thing, the Age Concern manager another – it was never resolved who was chairing the meeting. The social services manager had reported a survey they were carrying out - which would inform the workshops they were running at the event. Apparently people at day centres had talked about how their carers never had time for them., were always hurrying on, coming back later. Yes,well – just like their managers, then.
Hold on, why am I bothering to whinge like this? Because I had the thought in the meeting that these people round the table were actually powerfully responsible for the day by day delivery of services for older people in our borough. On the evidence of the basic incompetence and lack of communication in this planning meeting for a simple public event what hope could I hold out for an integrated approach. in the delivery and development of services?
Suddenly the home care manager announced she had another meeting in five minutes. They hurriedly scheduled another planning meeting for five days before the event.

So it was a bloody awful meeting. I am not blaming those who took part – I am thinking what picture is this of the dynamic around the different agencies working with and for vulnerable people.
The voluntary sector person talks about user-led services, about outcome-focussed services. He apologises to me for using jargon. Hold on, I remember when outcome funding was the new thing in the voluntary sector and that was back in the early 80’s. But he sees me as a service user – ‘sorry, more jargon!’ –as someone whose experience is limited to scraping the shit out of the carpet. He is also talking with the freedom of someone without a budget.
The social service manager is concerned that she is both a commissioner and a provider. So she has an identity problem, which side is she on? The providers wonder which of them will speak for their position at the event. I have some sympathy for them. The jargon about user led outcome-focussed services and the research that users want more time with their carers is more or less meaningless in terms of the contracts that they have to sign with the local authority to get the work.
And the person who was too busy to come because she had to meet with elected members, the local politicians making cuts to keep the council tax increase down to 3%? Well she doesn’t want to hear about ideas for improving services for older people that would cost the same as adult services, or to be told that not providing these services is discriminatory.
Thiese are just some of the different questions around the table. The only question that I am in any position to answer and I am struggling to answer is –why did I bother to go to this meeting?
PS. It was my son’s birthday. I had given him a book, Meeting Together, by some wise old colleagues from my days of working in the voluntary sector, Lois Graessle and George Gawlinski. It is very good, and recommended reading for anyone who recognises their own experiences at all in the story I have just told. Look at http://www.meetingtogether.org/
But the confused dynamics of working together around the needs of vulnerable people would be a challenge even for them.

2006-11-01T07:58:00.000Z

It is difficult for someone with dementia on trick-or treat night. We can hear the children up and down the street wishing people a Happy Halloween. I don’t think they quite understand the story. This is the day when the souls of the dead are supposed to revisit their homes.
I am helping Anna upstairs when there is a ringing at the door and I can hear weird and ghostly cries outside. In the old days perhaps Anna would have been thought of as a witch and they would have kept away. A useful trick, I am now thinking.
Trick or treat , according to my dictionary, originated in the United States, where children went from the door to door demanding treats on penalty of tricks. It is still the basis of their foreign policy, of course. And of course we have it here now, just the same.
It is a perverse rendering of the carrot and stick argument for getting other people to do what you want. And it is very frightening when applied to people who are dependent - do what I say or I will make things harder for you - and I think of that when Anna struggles with the people who are trying to help her. Her cries are like a soul protesting.

2006-10-30T10:21:00.000Z

I am getting the first intimations of what it may mean to have a live in the carer from the agency.
Two phone calls.
One from the carer who will be coming on Wednesday. All she wanted to know what how to get to us, as she does not know the area. After a couple of attempts at directions,I arranged for her to come to a station, where I can pick her up by car. She seemed to appreciate that, as she was worrying about her luggage – fair enough. No questions about Anna. I also know nothing about her, though I would guess from her accent that she is West Indian by birth.
I will be able to talk to her in the car on Wednesday afternoon, before she walks in the house with her suitcase. She is coming for four weeks.
Then today I got a call from another carer – who will be coming in a month’s time. She wanted to talk to the other carer. I explained she had not started yet. She also wanted to know how to get here – she is new to London, she said. I recognised a South African accident. Again no questions about Anna, and she was not wanting to talk to me.
It seems that their anxiety is all about transport – about what they do when they get here they don’t have any anticipatory worries.
I do.

2006-10-28T14:05:00.000+01:00

I had an idea for the blog, and then I lost it – a thought lost. When this happened, I used to think it would come by again – I’m not so sure now.
Anna: It’s dark.
I said: No, I‘m here. (I am the light?!)
Anna has been frightened for two days about not being able to use the technology, more specifically the television. This was after last weekend when she saw Dan and me on our bellies behind the television sorting wires to make the dvd work.
The front door bangs, the carer leaving for the night. Anna sits bolt upright. What are you doing?
About the technology …. If I now sound ageist and sexist, please shut your ears. I say to her that we don’t have to understand these things, they are boys toys.
At the moment the television seems to have developed a fault, so that the blue signal is not working and everything looks a rather sickly green as a result. I don’t know why. Anna doesn’t watch these days. Sometimes I have it on as background, when I am giving Anna her supper. Marge seems to have died her hair green. Without the sound I have been learning to lip read., but I defy anyone to lipread The Simpsons.
Have you noticed how forgetting something can be contagious? So, if someone says – it’s gone out of my head, his name, you know, the prime minister … suddenly you can’t remember his name either. (If only.)
I am going on like this about nothing much in the hope of recovering that thought I lost hold of. But it is definitely gone. A small defeat, of the kind that Anna suffers all of the time.

2006-10-24T12:02:00.000+01:00

Anna is very agitated this morning and the trouble is, I don’t know what’s wrong. She has Jackie, the calmest person in the world. But Anna is angry, and for two hours now she has been crying out. I thought I had a clue, when she said something about ‘hospital’. I said that Jackie is not a nurse, that none of the ladies are from the hospital, and for a moment that seemed to calm her. She may have a pain of course, though she is not saying that. I go and sit with her, but it makes no difference.
I was hoping to write a work report today but Anna’s cries drive out thought. They crash around in my brain, like they are in the room breaking up my furniture, tearing up papers, throwing books off the shelves. I gave up thinking and tried to do some routine maintenance, updating the contacts on my computer, displacement activity, tidying up the mess, but even that became difficult.
‘Where’s Tim?’
I’m not sure I know.

2006-10-22T21:05:00.000+01:00

‘I’ve never done that, ’ she says, after doing it for a hundredth time.
This time she is confused and afraid again about where she is, when she is at home in bed.
‘We’ll go to our house? Yes? How can I get there? What are they doing? What has happened to me? What happened? ‘
‘You are in bed now …’
‘Oh good.’
I think she is falling more than before. For example, she sometimes misses the chair in the sitting room. And walks into furniture, etc.
Falling out of bed is definitely a problem at the moment. I put her to bed on Thursday and the doorbell went – by the time I’d answered the door, there was a crash and she had fallen. I found her on the floor again the next morning, looking more puzzled than hurt.
Dan had difficulty with her going up stairs when I was out. I found them on the top step, but they had been an hour. So I am also thinking about the stairs. ( I have a heavy estimate for improvements to the bathroom on my desk. The bathroom is upstairs.)
He and I are able to lift her, but other carers would not be able to do that.
Health and Safety.
It’s what makes a home a Home.

2006-10-22T19:08:00.000+01:00

‘She was not hungry tonight,’ said the carer as she left. So I sat down and fed Anna her omelette, followed by cheesecake. She enjoyed it well enough.
Even in her home, she could starve? What chance would she have then in a residential home or hospital?
I say this defensively, because I am worried that people out there will say that it is not safe for her to stay at home, with problems about the stairs and Anna might fall, and she needs someone to watch her, and all the rest. I am worried that she will die of Health and Safety.
But as long as she stays at home, she will not starve, that is what I am saying.

2006-10-15T08:44:00.000+01:00

‘That’s the cats you see …. I don’t think it’s the cat. I think it’s me.’
Anna often has a cover story to explain a behaviour that she does not want to own. But this time she was saying it was her. And the cry that she had made – a bit like a cat – was a real cry of pain.
After watching her experiencing these spasms for some time, I thought that’s enough and called the doctor. It being the weekend, I got the emergency service, which calms you down or winds you up by going through a set sequence of questions – but they agreed that a doctor would come, and so he did, five hours later.
By then the pain had gone and she did not remember it. And could not understand what the young man was doing there.
I felt like one of those victims of a practical joke that they show on television, where you are left to explain yourself, while the perpetrator of some incident has run away.
The doctor was very sympathetic and reassuring, and we have some anti-biotics now, in case she is ill again. Without memory, everything comes as a surprise.

2006-10-13T01:08:00.000+01:00

Anna, in bed at home: ‘Is this a hospital here?’
I am reassuring. ‘It’s your own bed. Warm,comfortable.’
‘Yes, if it is that. So this is home?’
Then she adds: ‘Obviously, if we can.’
She is astute, this demented person. She has just summarised the issues we are working with, testing the combined talents and resources of the local authority and the primary care trust, and ourselves of course.

2006-10-11T10:14:00.000+01:00

Time for review. I look at Anna with a sudden shock. I stop and really look.
Social services and others do their reviews. The social worker was coming to see us yesterday but she phoned to say her car had been blocked in and she couldn’t make it …. What bad luck people have.
I can do my own review. Looking again – that’s all it means. So I take note of how Anna is frail, lost, how she looks like her mother, who died aged 94.
(All men become like their fathers. That is their … what? I forget the quotation, but I know how it goes on All women become like their mothers, that is their tragedy. Who said that?)
Speaking for myself – and not wanting to be disrespectful to the dead, I would not like to be any more like my father than I am. But I look at Anna and see her mother’s gleam, the eyes sharp out of a shrunken face. They were both tough ladies, and in their prime they fought like – cats? dogs? – like women of independent mind.
I remember her mother well, and Anna is pleased when I talk about her. A Labour Councillor of the old sort, she defended the rights of minorities until she became one herself. With Anna I have the same sense of the power stripped off her and all that is left is the residual authority in her eyes.
Anna is going to get NHS care at last. She went with her mother to the Labour Party celebrations in 1987 at Alexandra Palace of 40 years of the NHS. I remember Neil Kinnock singing. But her mother, a Labour stalwart for those forty years, with a signed photograph of Harold Wilson in her room, never got that NHS care in her nursing home: it was paid for by the sale of her house. Wilson retired early, though not as early as Anna. We learned later that he had Alzheimers.
Anna is still young to have dementia. I have heard that this may be to her advantage, that NHS per capita budgetting limits are much higher if you are under 65. I’m sure they have a rationale for this, to do with their arcane calculations – like the QALY calculations about the cost effectiveness of drugs – about the value of a person’s life. You should know that in the eyes of the state you depreciate rapidly when you are past working age.
You are only as old as you feel, they say. But Anna feels old. I think that’s enough review for now.

2006-10-11T08:57:00.000+01:00

NICE have just announced that despite appeals from the Royal College of Psychiatrists and the Alzheimers Society the drugs that Anna has found useful over six years are not in future to be made available on the NHS for Alzheimer’s patients. The drugs help but they do not do much if at all to slow the progression of the disease, and so from a health economics argument they are not apparently value for money at £1000 per year. The social costs of increased dependency and confusion during the course of the disease are not important to take into account. (The associated social costs - £20-30,000 a year - are not the responsibility of the NHS, and so can be discounted.) I hope they use well the money that this will save.

2006-10-09T18:50:00.000+01:00

‘I’d rather have a lady.’
Anna was talking about her carers. It seemed a little harsh of her, as I was trying to help her to bed. The evening carers have not been very strong recently, and somewhat pathetically hold up their hands and say that Anna is not wanting them, so that I end up doing the business. And then , after the carer had gone early, she said:
‘I’d rather have a lady.’
In a way it is good news, if it means she will be more accepting of them.
Today she was asking for me again all the time.
Joanna, the carer in the afternoon, thinks that I should take a break – it is very cheap to go to Poland, she says.
It is a strange migration- where young women leave their lives and ther families in Poland to look after us in England , and we go on holiday to Warsaw.
Anna, sitting here, asks all the time to go home.

2006-10-07T16:25:00.000+01:00

I am feeling a little sick and not a little angry. I was invited to do some work overseas next summer. I accepted, explaining that Anna is not getting any better (an English euphemism for saying she is getting worse), and that there was therefore the small possibility that I would have to withdraw, if I could not get away at that time. Instead they have withdrawn the invitation.
In the world of work we act according to false certainties, in omnipotent denial of what is beyond our control. In that world I should not have said anything about Anna. I remember people with past experience of mental illness saying that they had to hide this fact in the application for jobs, because employers would not understand. And now, because I cannot avoid thinking about the uncertainities in my life, I also feel that I am being punished.

2006-10-06T11:24:00.000+01:00

Alan Bennett wrote about his mother’s depression.
‘Nothing excuses us from the obligation to divert our fellow creatures. We must not be boring. And since for the specialist most illnesses soon cease to intrigue, if you have to suffer choose a condition that is rare. Should you want to catch the doctor’s eye, the trick is to not to see no light at the end of the tunnel.; anybody can do that. Rather mistake your wife for a hat and the doctor will never be away from your bedside.’ (Untold Stories, p. 34)
The professor was very interested in Anna, while there was a possibility she had anything but Alzheimers. With the diagnosis confirmed, he lost interest. Early onset dementia made her interesting in a way, and unusual, but with each year passing even that originality is blunted.
I worry now that we are boring. That this is boring. Who would want to know about the everyday life of demented folk? Remember Mrs Dale’s Diary? ‘I’m worried about Jim.’
Anna cries out to be ordinary. She does not want the drama of losing her mind.

2006-10-06T09:12:00.000+01:00

Am I a hostage? I think that sometimes, when I am alone with Anna. When I am alone with a thought that wants to be outside, making connections, leading to actions, but I am here inside, unable to move or make a connection.
I think about Brian Keenan and the other hostages in Lebanon twenty years ago. I think of the years out of their lives, when they survived by keeping their imaginations alive in the here and now of getting through the next moment. Keenan wrote:
‘Something in the human spirit seeks to overcome such oppression. There is always something in us that will not submit.’ (An Evil Cradling, p. 180.)
My situation is not at all comparable. Not at all. It’s the sort of thing that your parents say, there’s always someone worse off than yourself. Much worse off. More than you can even imagine. And not one or two, but in their millions, where numbers become statistics only.
But I am thinking then of the tragic damage of our human nature, our energetic mobilisation of hate and capacity for killing, the political cannibalism that feeds on invasion, exploitation and anonymous death.
Whereas here I am working with the inevitable facts of our human morbidity, - simply, in our case, with the tangles in the brain that can drag a person down while she is still alive, and all you can do is sit still and watch.

2006-10-03T21:40:00.000+01:00

‘What do you love best?’
‘Tim’
‘And after Tim?’
‘Ice cream’
Anna has always liked afters.
I came in on this conversation, on my return from a review meeting about Anna’s care. At home, things seem quite simple really. Love, hate, too hot, too cold, it is difficult to keep your balance, but there you are.
But in the world of health and social care, you don’t know where you are.
So it was agreed two weeks ago that Anna was now to have NHS Continuing Care. Social Services had pushed for this and it seemed that this was a breakthrough. Certainly for us as the care would now be paid for.
What care? The decision, which is so important, must I suppose have been recorded somehow, though apparently it is not communicated in any formal way, certainly not to us, so what does it mean? The social worker says that it was agreed 24 hour care for Anna at home. For six months. (That’s a provision in case she gets better in the meantime, apparently. But if someone from health is presenting the case next time, will the argument be different?.) It was not apparently linked to a consideration of the cost, which the NHS will cover? Or will managers put a ceiling to the costs? Who will be making the decisions here? What care? Who cares?
There was no one from the Primary Care Trust at the review meeting. So it was like one of those card games, with one hand hidden.
The Home Care managers were there. I have never been sure who decides what they are able to do. The social worker says what she thinks is needed. I think that in fact they decide what they can do. We have been and are dependent on how they determine their priorities.
I don’t think that there is anyone to hold them to account for the lack of planning, with Daisy’s retirement, where , with other familiar carers away at the same time, the situation around Anna went ‘belly-up’ – one of the Home Care managers’ description, herself, and I agree.
And now the social worker seems to be involved only on a grace and favour basis. We are not her responsibility now. Her service manager has told her she is no longer responsible.
I got nervous in the meeting.
There were people there from the Mental Health Trust, the psychiatrist and the occupational therapist, our biggest ally who knows Anna best now after several years.. And they were looking worried and I know they will do what they can. But they are to do with Older People’s Services and they are from the Mental Health Trust. The responsibility now is with the PCT, and, moreover, is nothing to do with older people’s services, because Anna is too young for that. (Just look at her, you can see how young she is.) But who knows in the PCT about the needs of someone with dementia and is going to be making decisions about Anna?
I am getting very nervous.
The social worker plans to contact an independent care agency that specialises in live-in carers. By what authority I am not sure, except the social services wish to get shot of us. I think she is acting as surrogate for the none-existent representation of the PCT in this process at the moment.
I tell you, if this were an event in a group relations conference on authority and leadership, it would end in tears.
I am feeling somewhat sick.
But I will check out the website of the care agency ( looks good – well, it would, wouldn’t it) – and I will be happy to see their local assessor. This could be a very good thing. I just wish I could be more trusting of the system that will be funding and monitoring all of this.
I left the meeting, with the professionals still talking. God knows what agency politics they have to work with and other clients to think about.
Back home, I hear that Anna loves me and after me she loves ice cream.
I immediately go out and buy ice cream.
The evening carer comes in. Before going to Anna she asks about a mop and bucket. I know what this means. She would find it much easier to clean the kitchen floor than help Anna to bed.
She and I both take comfort in the easy decisions.
It is not going to be easy getting the care we need. And no easier now that it is NHS care.
Social services never said they could give us 24 hour care. NHS has agreed, so the social worker says. So who do I phone now, because I’m going out to work tomorrow morning and there is no-one to be with Anna? (The reality is that Christine is coming – family to the rescue, driving thirty miles to get here. Thank you.)
I am feeling quite ill.
All right, you’re right, there is no need to get hysterical. Of course it takes time, and if we get this agency in place, such immediate issues will get resolved. But I am experiencing for real what it is like to be in the gap between health and social services, and it is a very uncomfortable feeling. If I had wanted this feeling, I would have been a trapeze artist.
Thr carer has washed the floor, and gone to her next client. I have sat with Anna and she has gone to sleep.
I scream. You scream. We all love ice cream.

2006-10-01T20:37:00.000+01:00

We have been having a very quiet time. A friend reported Anna as saying, ‘I’m driving Tim mad,’ But when she asked her about it, Anna, denied it, saying it was the friend’s thought, not hers. Anna is much more relaxed now, with carers that she knows. Madinah was back at the weekend., and another carer who likes Anna – ‘She’s a lovely lady’– and Anna likes a lot.
I have two simple tests – if Anna smiles when she see the carer, that’s a good sign, and if I hear the carer laughing, then I can relax. Let’s keep it simple.

2006-09-27T21:39:00.000+01:00

‘She went straight into the bedroom, with nothing to say.’
‘One five seven eight, I can’t take any more.’
Anna is struggling with having different carers coming to her this week.
‘Go away. I don’t want to play.’
You can see her deteriorating under the pressure.
‘They go and then go away again. I don’t know what it is.’
‘I’m frightened.’
And then …
After five new carers coming in a week, she saw tonight a carer she knew –Madinah. The fractious anxious pacing and hitting out , which she had been doing for hours, settled away like a bad dream into a warm bath. She smiled. She was at home again.
But it is not at all funny what has been happening. Last night the carer could not get near her to help her. Earlier this evening a new carer could not get near her to give some supper.
Anna and I sat, uncertain, watching the silent news on the television screen, until the front door bell –Madinah , yes!
Anna went to bed without a care. I could not have believed it possible. I talked to her:
T: We’re in our home.
A: It’s good, isn’t it. Nobody says, you can’t do it.
T: I hope she’ll come again.
A: Oh good. Adina?
T: Madinah. It’s a Muslim name.’
A: Oh. We’ve been with her sometimes.
T: Yes.
A: It’s just right.

2006-09-25T16:09:00.000+01:00

The psychiatrist came to see Anna this afternoon. She has seen a significant deterioration. Then she was worried that I might be shocked, when she gets to talk about prognosis at next week’s review meeting.
Instead I felt some relief at what she said.
I know that Anna has deteriorated because I am feeling different when I am with her. Every time there is a significant change, from the early days when she used to lose her keys in her bag, I have felt a metabolic upset – and then when I have understood the difference, I have been able to cope. At the moment I am having to go out the room and shout obscenities at the wall. It’s not very scientific as an observation, or perhaps it is. Projective identification is a very effective communication:, and this is a live example. This is new and strange behaviour for me, so I know there is something new and strange going on with her.

2006-09-25T12:28:00.000+01:00

‘It was very strange. It was as if I was not myself.’
This is Anna’s description of being with a new carer. The boundary of self and other overlaps when it comes to intimate care.

2006-09-25T11:42:00.000+01:00

Going to the Memory Walk and not finding anyone there is a bit like the phoning the Samaritans and their ringing off – which is an old Woody Allen joke.
Talking of jokes, we have a neighbour who is always wanting to have a chat. Last week he insisted on telling me an Alzheimers joke, as I walked up the road. ‘ You know how they say drinking fruit juice helps the memory. Well, people with Alzheimers forget to drink their orange juice.’ I think there may be a joke in there but not a very good one. ‘How is your wife?’ he said.

2006-09-25T09:41:00.000+01:00

I am learning more about the stress of being alone. I have had three twelve hour shifts with Anna, Friday-Sunday, with new carers. The known carers have all gone away at once – my anger with their managers for not sorting something better has kept me going.
Anna has been agitated – ‘I can’t cope’, she says. I know how she feels.
I realise how dependent I am also on the known carers. I hang on in there until the door bell goes and they come and Anna gives them a smile. But when it is someone she does not recognise and there is no smile, I have also got nothing then to look forward to.
I think how my state of mind may be like Anna’s. There are times that she also has to live with herself, hanging on until she recognises someone or something. ‘I don’t know you.’ Her fury is that they cannot help her with the terrible knowledge that she is alone with herself.
She sees people she does not recognise. It makes her think that this is therefore not her house. There is logic to that. ‘I love the little lady.’ But she is not there.
I look at the blank puzzlement on Anna’s face. With dementia it seem that you get lost even in your own head. You don’t even recognise your own thoughts.
For myself, I am not really alone. Dan came round. A friend stayed over. But it was still a very long weekend, and I recognise for myself that the stress of it was more than I would want to take for long.
I sense that there is a default survival mode, like a computer on standby, - what I would call a gin and chocolate existence. Thinking slows - my conversation is repetitive with Anna – full of ontological reassurance – ‘I’m here’ – ‘Where are you?’ - ‘I’m here’ - ‘Yes?’ - ‘Yes’ …
The fear of being alone is very real. I remember my father not wanting to die alone.
Absences become very important. The absence of a carer, who has retired. At a weekend, the services only have an emergency anonymous number. On Sunday we went to find a Memory Walk but there was no-one there. This week support workers are off sick or on holiday. I have had a premonition of what it could be like really to be old and alone, like some other clients that the carers go to.

But I can go back to work today. I was watching the highlights of the Ryder Cup last night, where there was a golfer who did very well a month after the tragic death of his wife. I can understand that.

2006-09-24T08:30:00.000+01:00

The new carer was not so good after all. She left shaking her head and saying it was not going to work. Which is what Anna says.
‘She doesn’t relate to me,'said the carer. I tried to explain that it takes time, but she was not interested.
She wrote in the book: This client is not warming to me, at this moment she said she hate me, so it may be better for someone else to take my place.
In one way, fair enough. But if all the carers said that, we would be in trouble. I am left thinking – given health funding, who do we really want to see working here? Someone experienced in residential care or the continuing care ward of a hospital? Perhaps, or would they have picked up habits that are not good for looking after someone at home?
When Anna says to a carer, Go away! there is a question, who makes the decisions around here, and by what authority? From where she stands, any care that she doesn’t want is an assault. You could say that in such matters she is not competent, but she is not subject to any section of the Mental Health act. As yet. I am the facto manager of this care home.
Years ago I wrote a chapter in a book – A Home in Hospital? – where I was arguing for a sympathetic approach to the care of older people in hospital. I could yet be writing a follow up – In Hospital at Home?

2006-09-22T19:25:00.000+01:00

Anna has been outraged most of the day.
I can’t cope. Three new ladies.’
‘The little lady. I loved her.’
The new carer has been doing her best this evening but she might as well go away for all the good she is doing.
I have been unable to work.
Perhaps if I could claim against the local authority for loss of earnings, they would not make these abrupt changes?
Neither of the Home Care managers were there today for me to talk with. They can walk away but I can’t.
The question is – do they know that the impact of what for them is a small action, moving a person from here to there in trying to sort a rota, is at this end hour after hour of recrimination and anxious attack?

2006-09-22T10:58:00.000+01:00

What with having new carers, and Anne not coming this morning, I am thinking about how Anna responds to different people.
We talked about Anne, who has been with her five mornings a week for more than three years now.
‘She thinks I’m a silly little girl.’
‘No-one could think that.’
‘Not yet.’
So she knows it is getting worse. When she hits out, she is raging against the fact.
The new carer who came last night was very good, I thought. It was difficult for her, she walked into the cupboard under the stairs looking for the toilet. And she got into a terrible tangle with Anna on the stairs. I disentangled them and Anna came down by herself. She helped Anna to wash but it was not easy.
After an hour she looked exhausted.
‘She is confused but she is also sharp.’ That’s right. If you realise that, you have a chance.

2006-09-22T10:31:00.000+01:00

‘Go away!’ Anna was shouting.
The bin men come by on a Friday morning.
‘I want someone to tell them to stop. Tell them how awful it is.’
‘They have gone, Anna.’
‘Go away – don’t come back. They should tell people.’
For half an hour she shouted after them.
‘It’s a terrible thing, just after you …. Dust and dust. It’s a terrible thing to do. They don’t care about anything. Go away! Go away!’
Anna does grumpy old woman very well, I think.

2006-09-22T10:19:00.000+01:00

The Home Care team seem to have withdrawn all Anna’s known carers at once – Daisy retiring, Anne going on leave – and Medinah – why has she been suddenly replaced without notice?
Anne was off sick this morning and we had no carer at all.
Anna is very agitated.
I can see that the transition is not going to be easy.

2006-09-22T09:06:00.000+01:00

NHS Continuing Care – there have been stories of people in dire circumstances who have not been eligible – of appeals to the omsbusman – of there being a review of this whole system. Perhaps we are now benefiting from that.
Anna’s mother, in a wheelchair, unable to feed herself, after a series of strokes – was eligible only for £70 a week as the nursing care component of her nursing home costs – she was one of those statistics of people who had to sell their homes to pay for their care. So, when she died in 2002, she could not leave anything for Anna , who was needing care herself by then.
Now the NHS has agreed to pay for Anna’s care. Well, not by right – not like when you and I go to the GP with depression. But she has been assessed by a panel. And they have agreed. For six months.
Should we be celebrating? I am feeling confused, having been so used to the financial costs being integral to the illness that I am finding it hard to separate them.
We don’t know yet what it will mean for the care that Anna gets. We have been dependent on the Home Care team from social services, but we will probably not have them after this. Their managers will be pleased to be rid of us, as we use too many resources, even though we pay for them. It is an opportunity to think again about the care that Anna needs and who could provide it..
Her new status does not make any difference to her illness, which gets worse by the day.
The social services carer is late this morning. The care has to continue …
If we separate out the financial cost we can look more clearly at Anna and her Alzheimers. That could be more depressing even, without the distraction of the monthly bills to pay.

2006-09-21T17:31:00.000+01:00

Sometimes anger works …? After my outburst about money, I have just had a phone call from the social worker to say that NHS continuing care was agreed for Anna today – so at last they will now be paying for her care. I can hardly believe it. Perhaps they wait until you are despairing?

2006-09-21T00:39:00.000+01:00

Every so often I get very angry.
One way of talking about this is money.
Anna has been hit by an ILLNESS, called Alzheimers Disease. Her care costs are now approximately – in direct costs, as she needs someone with her at all times, able to cope with her sudden changes of mood, fearfulness, physical vulnerability, sensitivity to living in an unknowable world, and all the rest of the help she needs in daily living - £25,000 pa. She has to pay these costs, all of them, 100%.
99%. Anti-depressant drugs are free on the NHS. (Her anti-dementia drugs are not -not value for money, apparently.) And a wooden ramp to the front door, after an eight month wait, from social services. The rest she pays, full whack.
This will only change if she is assessed as eligible for NHS continuing care, for which dementia does not apparently fit the carefully constructed criteria.
Health care free at the point of delivery. Not for dementia, no way.

2006-09-20T21:16:00.000+01:00

Earlier today Anna and I went to the church on the hill. It was mid week, mid morning, a communion service going on in a side chapel. The main church was empty – I had only seen it when there was a full blown service, when my son as an adult chose to be baptised there, then when we went to a Christmas service.
We approached the chapel. Anna was in her wheelchair, which she is accepting, in the journey from the car parked outside. There were two stone steps. But the vicar interrupted the service to come and help me with the chair up the steps.
The communion service had reached the point where intercessionary prayers were welcomed. A voice spoke of someone very ill. The vicar spoke of a murderer in prison. (I thought, possibly the youngest person in our minds?)
There were perhaps a dozen people there. They were old, they were frail, one woman was blind.
The service continued with what were for me half-remembered prayers, to do with sin and forgiveness. I thought, why do the lame without blame have to beat themselves up of a quiet morning, while the rest of the world is committing mayhem outside?
Anna was very calm, she seemed to be asleep. We got to the eucharist – there was room for the whole congregation bar us to sit at the alter rail to take the bread and wine. The vicar came to us. I knew – because Anna in times before had always wanted to participate – that she could do this. But she looked bemused, not knowing. I took the bread from the priest – can I do that? - and put it to her mouth. She looked puzzled. But I am used to feeding her, and at the second try she opened her teeth. And then the priest offered the wine and she took a swig, much as she might accept a drink of juice at home. He looked at me – I shook my head – baptised and confirmed, as I was, I retain such respect for this ritual that I cannot do it without accepting its meaning.
But I was full of unanswered questions about the meaning for Anna.
And so the service came to its end., As people shuffled out – I mean shuffled - they were friendly, several people touched Anna – an old man stopped to talk and asked if we would come again.
With the vicar’s help, we backed down the steps again.
We went and had biscuits and coffee in the church café. Administering these was remarkably like administering the bread and wine in the service.
The vicar will find a ramp. We will go back next week.

2006-09-20T20:26:00.000+01:00

I was at a work meeting today and a colleague was expressing her relief that she had a new au pair. Mothers with children have this, times of stability and then chaos until they get back to feeling secure again about the care of their children. I am thinking about this, because our care system here seems to be breaking up – one of the Polish carers has got another job, one of the Haringey carers is retiring, Daisy: this is her last evening as I have suddenly found out and she is with Anna now as I write this. She has been so good in a grandmotherly way, so solid, and for a long time now for five nights a week she has helped Anna to bed and sat looking over her until she has gone to sleep. And she has allowed me a half hour of calm.
The local authority system takes no account of relationships. It has not been important to anyone to tell us that Daisy is leaving this week or who will take her place. She has not been able to talk with her manager. She has been told simply to hand in the keys that she holds for clients – after 22 years of service. The wish to impose indiscriminate care giving is a management wish for control that denies the need for relationship - Isabel Menzies was working on this forty years ago, and it goes on now, with undiminished strength. It makes me sick.

2006-09-20T19:47:00.000+01:00

There was a television programme, Stephen Fry on bipolar disorder. My first wife had this illness and so I watched – I thought it was good, a celebrity using his status and charm and remarkably his honesty about himself. Just when it was most interesting to me, Fry talking to Rick Stein about what it meant to have this illness in the family – Stein’s father had dived off the Cornish cliffs near their home - I heard Anna calling out and had to go. And I thought – with Alzheimers you can only have one thought at a time, one preoccupation. The complexity of life has to be reduced to a single plane.

2006-09-18T19:50:00.000+01:00

‘You sound like a pastor.’
Well, that’s a new accusation. I must have been trying to impart some unconvincing good news – like – ‘everything’s going very well.’
‘You’re horrible.’
Ah well. Actually its not quite true to say it’s an new accusation. Anna used to say, when we first met, I had a vicar valency, meaning that I attracted the ladies of the parish enthused by the thought of an unattached male.
But it’s curious that she calls me that now.
She wants to visit Dan’s church, and we will be meeting the vicar for real. Why has she suddenly had this thought? For days she has talked of little else.
Before she was diagnosed, one of the questions I was asked was, has she become more religious? as if this was a possible symptom of the onset of dementia.
I visited a day centre with a ‘cognitive impairment unit’, and the staff were playing videos of middle aged men with long hair and vacant grins belting out religious songs. Why?
It seemed to be the equivalent of a mild sedative or a teddy bear.
Actually I hope it is more than that for Anna. She is frightened and she needs to be with people who are not frightened.
Not of death.

2006-09-15T08:44:00.000+01:00

‘I’m here,’ I say.
‘You mean, Tim?’
‘Yes.’
The identity issue is big. Hers, mine, others.
She says, ‘I say something, you don’t say anything back – I don’t understand.’
In the supermarket, I met someone who used to visit Anna through an organisation called Companions that set up such relationships.
I said, ‘Come and see us.’
‘Last time, she seemed to have difficulty relating to me, I thought it might be better not to come.’
With that logic, Anna would now be seeing no-one.

2006-09-14T21:03:00.000+01:00

It’s where we live, isn’t it’
Yes, it is. I have just come home from a few days away working, and had a remarkably soft landing, I think. Anna welcomed me as if I had just come in from the other room.
It was the early evening, which is now a good time for her. The agitation that used to show at that time is more apparent now in the mornings and early afternoon. We can have a ‘happy hour.’

2006-09-07T10:06:00.000+01:00

In psychoanalytic theory, we learn about a strange relationship, both wonderful and terrible, that is the precursor of all relationships to come. The infant, a baby grappling to begin to understand the realities of a new and not-yet-to-be-known world, has a tendency to bite the breast. Love and hate are intermixed, even though these emotions are directed to the same object and are felt quite seperately.
The mother responds - perhaps with a capacity for reverie and containment – to show that she can live with this mix of emotions and survive the attack.

I think of this now, when Anna responds fearfully and angrily to my touch. ‘I hate you, she says: ‘you hate me.’ It is as if the statements are interchangeable. When she hits out, she says, ‘you hit me.’

2006-09-07T09:01:00.000+01:00

Anna was anxious first thing: she said, ‘I don’t think that it’s going to work.’

And that is the question now. I am worried that we will be losing the carers from the Home Care team – the framework on which we build all the support around Anna. While I was away, their managers were on to the social worker – in the past we have been asking of them, now they are asking, they are at the limits of their coping.

I am trying to think clearly.

Now I know that Anna went to ‘panel’ yesterday – that is, the social worker had put together an asssessment for NHS continuing care. But it was thrown out, because she is under 65. She has to go to another panel.

Early onset dementia doesn’t fit their categories, so Anna has a social worker from the older persons team – having been rejected by the adult team- and she is seen by an old age psychiatrist, but the assessment now has to be considered by the adult panel.

So her trial is set for two weeks ahead.

Suddenly everyone is talking of alternatives. Specialist care. But it is not certain what they mean, or that they know what they mean. All they are saying, it’s not them.

There is a ward in the hospital – L2. I can only think it is Hell Two.

(These are the specialists? – the nurses and nursing assistants in a continuing care ward, experienced in managing a roomful of demented patients? Someone I know has been working with the staff in such a ward in west London – she describes a culture of gothic dysfunctionality. I know they don’t have to be as bad as that, but this is not where you would normally look for the cutting edge of psychiatric nursing.)

Dan and I are talking. Last week was the most difficult he has seen.

And this morning Anna was not accepting my efforts to help. ‘Bastard.’

‘I’m trying to help you.’ ‘Hunt me? Why. Why?’

Are we hunting her down like a wounded animal? Is that what we are doing?

2006-09-05T19:44:00.000+01:00

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.

2006-08-27T17:25:00.000+01:00

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.

2006-08-27T12:28:00.000+01:00

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.

2006-08-25T08:05:00.000+01:00

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.)

2006-08-23T19:39:00.000+01:00

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.

2006-08-22T17:27:00.000+01:00

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.

2006-08-20T07:59:00.000+01:00

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.'

2006-08-16T08:42:00.000+01:00

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.

2006-08-13T17:14:00.000+01:00

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.

2006-08-12T17:47:00.000+01:00

‘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.

2006-08-11T19:50:00.000+01:00

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.

2006-08-09T10:05:00.000+01:00

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.

2006-08-07T19:03:00.000+01:00

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.

2006-08-07T18:51:00.000+01:00

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.

2006-08-03T07:59:00.000+01:00

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.

2006-08-01T08:15:00.000+01:00

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.

2006-07-29T12:31:00.000+01:00

It is well known that people with dementia may become violent. It is seen almost as normal, to be expected. My question is, why? What does the violence mean? Is it because the person is frustrated, and wants to hit out, which is also normal and happens in families. Or is it more evident, because the person becomes uninhibited in the expression of their feelings and there is a loosening of the usual constraints on behaviour? so that the function of the regulatory superego is diminished (do we know then in what part of the brain that may be located?) and the managing ego becomes much weaker, giving a frightening freedom to primitive emotional responses – dementia is the final triumph of the id?
Anna sometimes rejects help, forcefully. I am thinking of this, because her long-term and trusted carer, Anne, has a nasty bruise at the moment, and I find this shocking, surprising, worrying. We have people helping us to think about this:
‘As well as reassurance that there is no malicious intent by the carers towards her, I wonder if it might also be helpful for her to hear you set a boundary about what is acceptable …. I think we need to try and help her engage that part of her which wouldn’t hit out, as much as she is able.’
The thing is, I tell Anna when she is out of order, but this is also when she is out of control of herself. So, when I say, don’t do that, don’t hit me, or kick me, whatever it may be, she experiences what I say as itself a violent act. The question, who is doing the hitting? is reversed, so that she will say, Anna/Tim hit me, and will call out for help as is she is the one who has been attacked. I don’t think this is a trick to shift the blame –she finds the setting of boundaries to be an aggressive act.
Last night, the evening carer backed off and I took over – it got difficult and so I said, you don’t do that, and immediately the situation got much worse. And she said, you’re like Anne. And then I got bruised. If someone hits you, you must feel anger, so any response, however calmly done, is an angry response.
If you say to Israel or the Hizbullah, don’t do that, we know that they also see this as an aggressive act. So we are talking here about universal rules of engagement, where war is diplomacy by other means (or is it the other way round?)
Last night in the end we had a boxload of tears.
‘You’re not going to kill me?’
And as I withdrew my forces and sat across the room, ‘If you are going to be all right, I can be with you.’
And finally: ‘I thought I was dead.’
Much like the Middle East.

2006-07-29T06:50:00.000+01:00

I like the things that friends said after the party:
"I was so touched when you offered her champagne! Yes! The presentation, the pleasure in the look of it, the bubbles – and then she couldn’t hold the glass and soon forgot it. But she had that joy at the time …"
"I suppose there is no way to describe Anna's predicament that you haven't thought of already. She seemed so bewildered at her bewilderment, humiliated by flashes of lucidity that seemed somehow pointless, dismay and rage at something, everything. I was reminded of being taken to a classy restaurant in Moscow. It had a clouded glass floor, and in the lit space underneath were lots of huge fish swimming around. I was terrified to take a step onto the glass, not sure whether I would be held up, not sure whether I was going to eat or be eaten by the creatures down there, which may or may not have been as big as they seemed. I was so angry at being taken there as a treat and being laughed at for owning up to being scared, outraged that there was this mix-up of entertainment and sustenance, that I was meant to eat these things that both scared me and made me sorry that they were trapped down there. I also felt trapped. It was a totally impossible situation. This may be the closest I can get to how Anna feels.
What did cheer me, though, was that Anna really wanted a cherry tomato that was on someone else's plate, all slippery with dressing. Several people closed in offering her a nice clean tomato from a nice little bowl. But she got the one she wanted, and I thought it tasted very good, all the better for defeating the know-allers and the salad dressing."

2006-07-29T06:35:00.000+01:00

‘Is it a railway station here?’
She was in bed, so what sort of a question was that? She was hearing the children outside, saying goodbye, in the repetitive way that small children do, goodbye, goodbye, goodbye ….
Shje had been in tears earlier about wanting to go to Newcastle. Dan, who had just been there, explained that it was a long journey,but she was inconsolable, wanting to see her father, who came from there. He died when she was ten.
The French family next door have gone to France for les vacances. The street is emptying out, except for ruddy topless builders piling old kitchens into skips. It goes very quiet after four in the afternoon.
We have visitors. A doctor with his trousers rolled up arrives on a bicycle to check that Anna does not have an infection. And friends call, before they fly south like migratory birds.

But others go away too. Psychotherapists and their patients talk about the summer break as if it only happens to them: we have been waiting three months for the front path to be ramped, so that Anna can get out more easily, but, when I phoned, the manager was on leave…. August is like Christmas, only longer.

2006-07-25T10:58:00.000+01:00

Frequently now, Anna may say, ‘I’m going to die.’

One of the criteria for NHS continuing care is palliative care. By that they mean a prognosis of six-eight weeks, and I assume that this applies mainly to cancer patients. But I am thinking that there is an argument for thinking more long term about palliative care in relation to dementia.

I have been clearing the spare bedroom upstairs, so that Anna can sit there, when she does not cope with the stairs. I found an old book (1973) celebrating fifty years of the Tavistock Clinic, and there was a chapter by Colin Murray Parkes on ‘attachment and autonomy on old age.’ His research was with people dying of cancer in a hospice and he identified a number of commonly held fears:
fears of separation and loss, fear of failure to complete life’s tasks, fears of ill that may fall one’s dependents, fears of losing control of physical functions, fear of physical pain or mutilation, fear of the unknown or unfamiliar.

Well, I think all of these apply very much to Anna, except that third one – she does not worry about me after she has gone. That part of her imagination is now lost, where she could envisage a world without her in it. But separation and loss – that is a constant anxiety, as she tries to keep me in the room, or thinks of her own mother and father and becomes distressed. She has been furiously angry about not being able to do her work – ‘I used to do that!'– but this concern is now fading a little. The control of physical functions; that one is obvious. The fear of physical pain gets enacted all the time, when she is with carers. And the fear of the unknown – the nameless dread – is in her face.

It is helpful, I think, if those with her keep in mind that she is dying, though she may live for years yet.

2006-07-23T17:21:00.000+01:00

We have been going up and down the stairs all day. It take twenty to thirty minutes each time.

As I was going up the stair
I met a man who wasn’t there.

Sometimes Anna stops, and it is as if time itself has stopped. She goes into a reverie – while I wonder to myself if the plan to convert the local hospital for dementia day care has been subject also to some political reverie, or has just been forgotten over six years … This morning Daisy and I each took several alternate five minute shifts with Anna, as she stood still on the third step, until in the end I lifted her down – I didn’t like to do that, what if I was not there to help?

This afternoon we encouraged each other: ‘Yes?’ ‘Yes’ ‘Yes’ ‘Yes’ ‘Yes!’ ‘Yes??’ ‘Ye-’ ‘Yes!’ ‘Yes …’ about a hundred times in succession. We are like very incompetent actors rehearsing an orgasm.

2006-07-22T13:28:00.000+01:00

‘Tim is making a face.’

Well that’s conclusive, she does see faces, certainly some of the time. Actually I was copying her face of wide-eyed pretend surprise, as she ate ice-cream, and it is an expression that she learned herself from her mother.

‘I’m like a little girl – I want to go out.’ Well, put like that, who am I to argue?

But when a carer says, ‘She is like a child,’ I wince, making another face.

(She meant that Anna does not like getting dressed or undressed, and a child may be like that.)

A journalist misquoted Julie-Ann, our Alzheimers Society worker: ‘Caring for someone with dementia is like looking after a newborn baby. It is a 24-hour worry.’ When she saw it in the local paper, Julie-Ann phoned to apologise.

Again, I understand the point that was being made. And perhaps we can say that Anna is like a child, but in the way we all are at times, that she has dependency needs which she does not acknowledge, and that is like a child.

But that does not really make her like a child. And the trouble is that if people start to think you are like something, the go on to think you are that thing. A simile becomes a metaphor becomes a fact – as in, ‘You baby!’

Here are some ways Anna is not (like) a child:

She remembers what was like to be young.

She regrets not being the feisty independent middle aged lady she was before the diagnosis.

She understands a dirty joke.

She weighs 120 pounds.

She has beautiful clothes, that she bought herself.

She still has her own money, from her years of working for the NHS.

She laughs like a woman.

When she is distressed, she expresses the sadness of her years.

2006-07-22T12:39:00.000+01:00

If Anna has no sense of time, how come she always wait for Saturday to ask for her doctor?

I say, ‘I will phone the surgery on Monday.’

For two hours she has been asking to see her doctor and I have been giving the same answer. So she says to me: ‘why do you keep repeating yourself?’

She’s right. Telling her the surgery is closed is maddening. ‘It’s mad. What are you doing on me?’
‘I’m doing what I can.’
‘I don’t believe you.’
‘Why would I lie?’
‘Because you don’t like me.’

She paces up and down, incoherent with rage. During the week she is always asking for me. I look forward to Saturday mornings, thinking we can have a quiet time together, but it doesn’t work out like that. For two hours we circle round, in the room, in our conversations.

‘You won’t do what I tell you.’
‘I will phone …’

I begin to regret the things I was looking forward to. Anna’s friend Mike has sent us some jokes. My son Jake is just going on a six week Buddhist retreat. Well at least he’s not sitting around doing nothing. Thank you, Mike. I got a package in the post today. On the outside was printed, Photographs – do not bend. Underneath was scrawled, Oh yes, they do. Anna keeps asking for the doctor. I hang on for the carer to come back. The phone goes: the carer is delayed.

A man goes to the vet and the vet says: ‘Open your mouth and say Ahh.’
‘Why?’
‘Your dog’s died.’

Nothing seems to be going right today. The carer arrives to say that an old lady is very ill, suffering in the heat, and she has had to call out the doctor ….

2006-07-19T07:17:00.000+01:00

I water the plants so as not hear Anna’s screams, as the carer helps her to wash. Why doe she struggle so much? It could be that she is now so sensitive to touch that the slightest pressure is frightening. ( I think of the little boy we heard about in the burns unit.) Or it could be the indignity of needing help that gets to her, and her wish to cover up her dependency by avoid the things that she finds difficult. A bit of both, probably. She is calling out for me.

We are having to think about the carers. They have to take some holiday. One is retiring in September. And I plan to be away working for a week. So we need to introduce some more help. Very carefully. There is a meeting this afternoon, with social services.

Am I worried that they will take away the carers we have, if Anna becomes too difficult? Challenging – that is the weasel word. Of course I can’t believe that they would do that –but they might – ‘they’ might decide that it is too difficult for them to support her at home and try to force the situation, that she be put away into institutional care before we are ready. Or they could assess her as needing continuing NHS care, so we could then have more resources? This is life, so it all comes down to money.

I have her anxiety, that help may come at a terrible cost to her independence.

Hold on – they might be really helpful – we just don’t know.

Meanwhile the carers always carefully note any bruises that Anna suffers – and the bruises on themselves?

I go to meet Anna on the stairs. She is looking good, though she hesitates as usual at the bottom step. We have learned when to encourage her, when to be quiet, when to take hold of the situation, when to back off. Nothing is straightforward here.

After breakfast I install new toner in the printer, to download yet more catalogues about adaptations. I open the post. We have been selected to participate in a Holiday of a Lifetime for ‘couples and families who enjoy the finer things of life and appreciate first class holiday in luxury resorts around the world.’ I answer the phone:it is the Marie Cure Cancer Fund soliciting contributions. We seem to be on everybody’s list.

Time to take a break …

Want to hear about the social services meeting?

Unfortunately a couple of people weren’t there, including the home care manager, so I couldn’t ask about introducing more carers before I go away. I used to get bear-headed about this, not knowing until a day or two beforehand what was happening, but I have learned over the years that with dementia IT IS NOT POSSIBLE TO PLAN. In part this is a function of the uncertainties of the progression of the illness, which we can’t do anything about. In part it is a function of the way services are organised.

Anyway, social services are going to assess Anna again to see if she is eligible for more resources. There is a format for this, and it applies to all sorts of disability and disease. How is someone with dementia likely to do?

It is a rigorous examination., as you might expect. The tests to show you have dementia are straightforward enough -–can you recognise the elephant in the living room? - but to pass the criteria of the health services for receiving any help to cope with that dementia is very much more difficult. You have to score maximum points in at least one category – a distinction in your special subject, as it were - or perhaps you will scrape a pass if your score highly in four categories.

So it would help if you are physically very disabled, or if you can’t speak or communicate at all, or if you are completely off your head and a danger to man and beast. But the person with dementia is likely to be more a generalist, experiencing very considerable problems with mobility, communication, challenging behaviour, depression, cognitive impairment.

The rules are very strict. Please take care not to weight the same needs in more than one domain.

The tension is mounting. Will Anna get to score maximum points in any one of their domains? This seems to be a system weighted for the specialist user of services not the generalist. Perhaps they should introduce the pentathlon into their assessment. She would be a star.

Coming away from the meeting, I think that the irony is, without the specialist care and psychological understanding of her very complex needs that she is already getting, Anna would not now be able to get down that bottom step of the stairs, or recognise her friends, or trust the carers even when she is giving them a very hard time, or live at home at all. She would even now be a caricature of a demented person in a continuing care ward – assuming it has not yet been closed.

Back home, we keep cool in the heatwave.

‘Can I have a drink, please?’

Do you think that her still being able to say please means that they will fail her as a total wash-out of a human being – which seems to be the test that they are applying?

2006-07-16T20:57:00.000+01:00

It was a perfect summer Sunday morning and I was awake early. Jake and his girlfriend Julie have been staying the weekend.
But Anna was restless today – poor Daisy getting the brunt, as Anna rejected her grandmotherly wisdom that‘Everybody has a wash.’
Anna looked bereft. ‘What is it?’ she said. ‘It’ was her illness, I thought.
Later: ‘I want to go to the man of the cloth.’
And later: ‘I’m going to kill myself.’
(Can I be sure I heard that terrifying statement?)
‘You’re out.’ Dismissed, like a cricketer.
Then: ‘What are you going to do to me?’
and, last, ‘She (Daisy) is wonderful, isn’t she?’
Jake and Julie left. We will see them after the summer: what will change in six weeks?

I went to a conference on Friday about the future of the NHS – The Only Show In Town? It was an opportunity to think about alternatives to the market and the commodification of welfare.

I remember that the psychoanalyst Anton Obholzer said that the NHS is a keep-death-at-bay service. Do we think that? If so, there are two very different aspects of what that may mean. 1. A fight-flight strategy, for the efficient delivery of brief interventions over a limited range of the most popular product lines, a strategy that is well suited to market processes and commodification. 2. An excluding strategy, through rationing and the contracting out or closure of services for those with intractable needs, (dependence, convalescence, senescence), who neither die not get better in the short term.

I’ve just observed the conversation of Daisy with Anna making their way slowly downstairs.
‘We’re going down.’
‘I’m not dying!’

The use of story-telling helps to give some exposure for the excluded, but there is not a lot of evidence that this has any impact on policy. I suppose that what I am doing here is storytelling. And I suppose that I hope it will make a difference, somehow. So I have put what I have just said on the conference blog: http://theonlyshowintown.blogspot.com/

But I feel like the ancient mariner , who stoppeth one of three:
By thy long grey beard and glittering eye
Now wherefore stopp’st thou me?

I have not shot an albatross, not knowingly, but certainly something equivalent has happened:
And we did speak only to break
The silence of the sea.

The trouble with the ancient mariner is that he only has one story to tell, however compelling:
And never a saint took pity on
My soul in agony.

At the conference, there was a man who could only talk about global warming. To him nothing else was of comparable importance. And in my own way I also found I was becoming less and less interested in the future of the NHS, because it does not seem to be interested in my story.
I fear thee, ancient mariner!
I fear thy skinny hand!

Of course global warming is the most important issue - that is, if we don't die first, through a combination of violence and shame.

You can always tell your story, but who in the end will listen?

2006-07-15T20:42:00.000+01:00

We have lived here for twenty years but I have just found something new about this house. We have a balcony from our bedroom and at 7.30 pm in July you can catch the evening sun for a few minutes as it comes out from behind the trees and before it goes below the roofs opposite. I have found this, and it can only work for three or four weeks or so in the year, because this is a new time for me, when I often sit and think or just sit, as Anna goes to sleep.

A poor life this if, full of care,
We gave no time to stand and stare. [W.H. Davies]

2006-07-13T09:46:00.000+01:00

It was evening. Anna had been restless and I lay on the bed covers beside her and stroked her hair. Daisy sat quietly in a corner.

Anna seemed to be talking half to herself and half to me and I was only half listening. Her hand touched the front of my trousers. Randomly? ‘We don’t want the horse.’

A sexual reference? Or perhaps she was she talking of her friend Lynn’s daughter, who has a horse. She was saying more words, but I could not hear them clearly. She said something about ‘the beaker’, which made no sense to me. ‘We always talk about him, don’t we?’

Then … ‘I think, we didn’t have a horse, did we? That would have been something.’

A car started up in the street outside.

‘What on earth is up there?’

‘They’re very nice, animals.’

I would like to be able to listen better to such talk.

I never did a clinical training, one which included Infant Observation, where students observe a mother and baby, but it has always seemed to me a powerful aspect of that training, where the observation involves really being aware of what you are seeing and hearing and feeling, and also being aware of what you make of what you see. A friend at our party said afterwards how ‘one knows she is there but as elusive to catch as a fistful of mist.’ Trained as a psychotherapist herself, she went on:
‘I think I mentioned to you once about how her state reminds me of Infant Observation, and I was hit quite strongly with the same feelings yesterday. She is alive with her good object, and like babies, I guess is filled with passionate feelings of all kinds, but no words to describe or interpret them. Also like a newborn, I feel, is that explanatory words are no use, she needs her feelings to
be met and understood instantly.’

This psycho-analytic language – ‘ good object’ – has me thinking again about what Anna sees, when it seems that she has to rely on her internal world to understand what is going on outside of her. I am confident that there is nothing much wrong with her eyes, with the functioning of the retina. But the brain does not now compute well what she sees.

I know from school text books that the images from the retina are upside down, and the brain simply turns them round, like a computer image, and we know how quickly the brain adjusts left and right, when we drive in a different country. And I understand how the brain recognises images , and is programmed to do that very well when it matters, for example in recognising very slight differences in facial expression. I also know to be wary of the computer analogy.

So now Anna has difficulty in recognising faces, and I notice that she usually waits until she hears the voice and recognises people like that. Though she cannot always work out the direction from which the voice is coming, so even that is difficult for her. It is not just that she has difficulty with faces. She may not recognise a table. (And tables don’t speak.)

There is a step from our kitchen to the garden room. It is about an inch high, and a foot deep,and is painted white. You could not imagine a less worrying step. But it has become for Anna the biggest obstacle in the house. We are going to experiment with another ramp, but in the meantime, I am trying to think what is the problem.

Yesterday Anna stood at that step with Lynn for twenty minutes. She put one foot on it, felt around (it is quite smooth), and withdrew the foot.

I lifted her and put her down gently to stand on the garden room floor, level with the white step. Lynn put on a cd of French chansons and I held Anna and danced a few steps. ‘Is that Tim?’ she said.
You could have thought she was totally blind.

There must be research and such like that would help to explain this. I wonder if it is written in a language I could understand.

I took a book from our shelves - our books are psycho-analytic, as Anna was a psychotherapist. Freud’s Footnotes, by Daniel Leader, has a chapter The Internal World. He reminds me that I could start with Plato (the psychic cave) and Locke. Before Freud and Klein, philosophers of mind explored concepts of internalisation – for example the eye as camera obscura – we still talk of ‘the mind’s eye’. I observe that Anna sees internal images, but cannot make sense of them.

One of the first tests the psychologist gave her years ago, was a simple jigsaw of an elephant. She did not recognise it. Inside, I was screaming, IT’S AN ELEPHANT, can’t you see it’s an elephant, a child of two would see that. Actually it did not look like a real elephant, not in size or shape or colour or texture, and the office we were in was not the context in which you would expect to see an elephant. It looked like a jigsaw. But she could not recognise the meaning it was meant to display.

And now she cannot see the meaning in ordinary objects around the house. The white step makes no more sense to her now than that elephant. But in her head?

‘They’re very nice, animals.’

2006-07-10T10:03:00.000+01:00

We had a party –about twenty people – for our twentieth wedding anniversary. Not many who were with us then. We had finished making a ramp into the garden and Anna tried it out for the first time: and it worked. There were flowers and wine and chocolates. My joke was that now Anna would still be have been able to wear the dress she wore then but I would not, definitely, be able to wear my suit from those times. We have stayed together through thick and thin.
Anna was calm and gave a gracious smile, even when she was not quite sure who it was. She reminded me of the Queen Mother. Our friends know not to crowd her or make a lot of noise. The distinction between carer and friend was blurred, and there was always help at hand.
Jake came from Nottingham and helped prepare the food. Dan arrived in time to eat it.
A friend, leaving, said, ‘I’m so sorry.’
So it was a good gesture and an expression of defiance against a social death, but did not disguise at all the continuing sense that Anna is losing it: ‘it’ being what? The capacity to manage that space between what is inside and what is outside? This is why, for example, we need language, being articulate about our consciousness, which distinguishes us from animals. Losing words undermines the meaning of what is signified. Without language we communicate still by expression and gesture - with a smile and a wave of the hand, like the Queen Mother - and can do so creatively, as in mime and dance, but it is not enough.

2006-07-07T20:49:00.000+01:00

On 7/7 last year we were on a family holiday at Lyme Regis. We were sitting outside a beach café, when Dan’s mobile started going off with messages like, r u ok, and that’s how we learned of theLondon bombings. After a few minutes Dan was getting good information and relaying it to us, as we drank our coffee. ‘London is closed’ he said. And the strange thing to me was that people at the other tables carried on with their breakfast, not one of them making any comment or acknowledging that they had heard any of Dan’s increasingly apocalyptic bulletins. I put it down to their Englishness, or perhaps to the fact that they did not come from London and so the information had little relevance to them.

Or perhaps we were simply observing the ways people live now in gated communities of their minds.

Michelle Harrison, head of the public sector consultancy at the Henley Centre Headlight Vision, has observed the trend:

"For the last 20 years we've been asking people the same question: Do you think the quality of life in Britain is best improved by a) looking after the community's interests instead of our own, or b) looking after ourselves, which ultimately raises standards for all?

"Fifty-three per cent now say b, looking after ourselves. Last year that was around 45%. From 1994 to 2000 there was a big gap [in favour of the community] and since then it has narrowed and now crossed over."

So we mark the anniversary and listen to the stories repeated of the bombings and the tortuous arguments about why these things happen but what does it mean? For us it marks a year in the progress of Anna’s dementia, so that now we could not think of having a holiday like that again. And we cannot look to others to have much interest in our problem.

2006-07-05T17:57:00.000+01:00

Today I spoke in public for the first time about what it is like to live with someone with dementia. It was a meeting for the local Alzheimers Society with health and social services. I talked about how the services see me as a carer, even the ‘main carer.’ This is an extract:

“I am the husband and that is a 24/7 commitment and I am content with that. I do what I can in that role, which also includes going out to work and following other interests and having a pint occasionally with friends. But what if I am the carer? There are apparent advantages – I can have an assessment, for example, or a head massage at a carers day – there was one time when I went to the social services office and was given a sum of money, with instructions that I was to spend it on myself. It reminded me of a kindly aunt. Most important of all, as I say, health and social services are providing all kinds of help, which are intended to support the carer. To support the carer. This is where it doesn’t look so good from my point of view. This word carer gives me a certain role in the view of health and social services, in the minds of managers and policy makers. And you are going to support me in it. Let me give one example of what this might mean. . Last year the government introduced a review of social care called Options for Excellence, and there are working groups looking to deliver personalised social care. I was interested in what they might say about respite at home – obviously it’s a better option, if we can manage it, to put the care into the person’s home rather than put the person in a care home. The review has a number of good recommendations in its vision for the future of adult social care. Here is one: ‘Every area will have short-term home-based respite support for carers in crisis or emergency situations.’

But I don’t want to wait to be supported until I break down and you have to take over. In fact I don’t intend to break down at all. What we need is help now, not to wait until there is a crisis or emergency.”

2006-07-03T22:41:00.000+01:00

I have been reading Stephen Fry’s book on poetry, The Ode Less Travelled, which is a lot better than its title.
So tonight, as Anna settled down to sleep after another heatwave day, when she felt faint and Daisy and I had to carry her upstairs, I knocked off this villanelle. (Don’t know what a villanelle is? Then you need to read Stephen Fry’s book.)

You’re not the person that you were, they say.
You glower as if we’re not really there,
But which of us is at the end of the day?

You stand for hours and then walk away
With a cruel smile, and it seems unfair
You’re not the person that you were, they say.

You tear the edging of your negligee,
You’re not much pleased with the things you wear
But which of us is at the end of the day?

None of us want to get old and grey.
Like us you want to stay just as fair,
But you’re not the person that you were, they say.

You’d like to be sexy, young and gay,
And playful again, without a care,
But which of us is at the end of the day?

It’s sad that you’ve forgotten the way
You used to have such love to share.
You’re not the person that you were, they say.
But which of us is at the end of the day?

Well, it may not be that brilliant, but it beats doing yet another bloody Sudoku.

2006-07-03T15:27:00.000+01:00

‘I don’t want to be like this. I haven’t done anything wrong.’
It might seem confused, but Anna was drawing attention to the common link made of illness with a moral accusation. We were going out but she could not manage the first steps - it was hot, and a child across the road was playing a noisy game with his father – and after a half hour we gave up.
I was angry that we have not yet got the path rebuilt, so that she should not be housebound like this.
We think that living in the Alzheimers lane is very slow-moving , but there are times when we seem to be more in a hurry than other people. This is to do with living in the present. If Anna has anything to say, she has to say it now, not wait for her turn. Our local community hospital closed in 2000 and there have been plans ever since to make it into a dementia day centre. But six years later the hospital remains derelict and anything it might have done for Anna has now past – bureaucrats, planners and politicians are slower than us, it seems. And if we need services, adaptations to the house for example, or other resources, we need them when we recognise we need them. In management jargon, this would be Just in Time management.
A referral to the social services for an occupational therapist takes three months for an assessment, and the person who comes is allergic to cats, and it is another two months before the next person comes and is just leaving her job, but we get category one status for the path, which is as good as it gets, and we have been waiting now only two months more and it may only be another three or four weeks before the work starts. So it may be only eight months to them, but in this time Anna’s capacity to get out and about has contracted as inexorably as her tangled brain.
So we stayed at home instead of going out, and that’s when Anna said, ‘I haven’t done anything wrong,’ and was suddenly very sad. I have talked to her a lot about how we are taking our own initiative to build a ramp to the back garden, in time for her party, but, come to think of it, although she says she likes it, she never asks to go out these days. I suspect that she is now housebound in her mind, and making these changes may not make things all that easier in the end. As she said at the picnic, when we want to help, ‘You do it for yourself.’
She doesn’t like to do anything where she thinks she is going to look foolish. Right from the start of her illness, she has looked for alibis for her distress. And now, today, she has given another clue why this is. She is fearful of that accusation, that judgement that somehow it is all her fault.
And yet Alzheimers, more than most, is a disease that it is difficult to link to life style. Anna used to be quite fit, and she ate healthily and she certainly exercised her brain, which are the things people talk about when they advise on ways of avoiding dementia.
The accusation that it is her fault is largely unconscious – a below the surface undermining of our ordinary feelings of empathy for someone suffering. It is certainly not logical that we hold people responsible for the misfortune that happens to them. I remember Helen Bamber saying how children who survived the death camps and brought to England after the Second World War were nevertheless held responsible by well meaning teachers for shortcomings in their education. Did they not have books in the camps?
So Anna, who remains sharp about such things, picks up on the unconscious accusation. If there was a moment of frustration in my attitude, as we stood on that path, she heard it for what it was.
In contrast, her carer, Ann, cleaning up after her in the morning, took away the toxicity of the situation in six words.
‘She doesn’t mean to do it.’

2006-07-01T21:09:00.000+01:00

ONLY connect, I said. But Rooney was sent off, out-of-control angry at his impossible task up front on his own, and England lost – brave losers, which they do well.
Is Anna a brave loser? Am I, staying with Anna? I don’t want comments that I am brave or whatever: if so, I will suspect that you really mean deep down that if you were me, you would have organised things better, not got stuck with an impossible task.
But relax, there won’t be any football references now for a while. Anna is sleeping and I have finished the Sudoku puzzle. I can do hard logic AND be with her at the same time: it uses a quite different part of the brain.

2006-07-01T12:05:00.000+01:00

Only connect!
Today is the First of July, halfway through the year, a time for cricket, tennis, football, if you can bear to watch; and a local carnival and beauty queen. Yesterday we went on a picnic with old friends. It was a hot journey getting there, and Anna called me a bastard. One friend commented about talking with Anna: 'Such a difficult mixture for her of sadness frustration and irritation. While I was sitting next to her she turned to tell me that something was clearly rather disturbing – she said, it was very bad; then she said is it forever? I said it is sometimes scary and frightening. Then I said, and we will go home soon. Then what? she said.’
Our friend thought at that moment there was a dreadful recognition and sadness and anger. Is this what happens when carers are too quick or in a hurry or when Anna says, as another friend to help her with a shoulder strap, 'you are just doing it for you'.
Thinking about it, I would also like to have comments on my thoughts here.
I say that, but do I mean it?
Yes, of course, but –
It’s like the phone calls. Like everybody, I suppose, we gets calls all the time, and they are friendly, introducing themselves by name and wanting to talk about windows or mobiles or whatever. We have registered to stop them but they come anyway. Like the salesman who rings at the door, selling rubbish. Sometimes they ask for Anna – would she like Sky television? I think not, somehow.
Often it makes me angry – if they wake Anna or make her restless – or if I am feeling pissed off anyhow – when they serve a purpose, like a punchbag, as I sock it to them with some choice invective. 'I have windows already. Do you think we live in a hovel?'
I once swore terribly at an old friend and colleague, who was only phoning to ask me out for a drink – but the background noise of the pub sounded like the globalised cackle of an Indian call centre, and it was the third call in an hour.
I don’t mean to be unfriendly. Living with dementia, we are isolated enough as it is. So, as I said, I would like to have comment. I would be interested in the links that people make in your own minds, the thoughts and feelings from your own experience, which may be similar or very different from ours.
If you click on the word 'comments', you can leave your comment, chose to give a name or be anonymous, and then click on ‘login and publish’.
Please don’t worry about the statement, ‘comment moderation has been enabled.’ It only means I get to look at the comments before they are published. We just don’t want to be sold any more dodgy Rolexes. If a blog is like a message in a bottle and thrown out to sea, then it seems it is likely to get washed up with all kinds of detrituis, like used condoms and plastic rubbish that won’t degrade for thousands of years, so this is a way of trying to keep the beach clean. I think anyway that the random connections that are made possible by the internet are a warning about how we all may be talking a lot of the time without listening. The times we really listen are rare enough, like two old friends perhaps at a picnic.
Only connect! is a famous quote from E.M. Forster’s novel Howard’s End. The connection he is talking about is between the prose and the passion. That seems right.
So, if you have sent a comment before and it got lost, I apologise. I will be looking carefully.
And if I swore at you on the phone, I’m sorry too. Sorry, Deirdre. It is another lovely day for a picnic. Or to go for a drink.
Specially if England win the football today. Or if they lose.
Whatever happens, I will be shouting at Rooney: Only connect, you bastard!

2006-06-30T08:23:00.000+01:00

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.

2006-06-28T07:46:00.000+01:00

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.

2006-06-26T08:01:00.000+01:00

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.

2006-06-22T11:39:00.000+01:00

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.

2006-06-22T08:06:00.001+01:00

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.

2006-06-20T08:13:00.000+01:00

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?

2006-06-20T07:58:00.000+01:00

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.

2006-06-18T20:44:00.000+01:00

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.

2006-06-18T20:28:00.000+01:00

‘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.

2006-06-15T08:06:00.000+01:00

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.

2006-06-12T13:12:00.000+01:00

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?

2006-06-11T08:41:00.000+01:00

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.

2006-06-11T08:06:00.000+01:00

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.

2006-06-09T09:17:00.000+01:00

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.

2006-06-08T14:09:00.000+01:00

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.

2006-06-06T11:20:00.000+01:00

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.

2006-06-05T22:43:00.000+01:00

‘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.

2006-06-01T06:40:00.000+01:00

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)