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.’

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.

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.

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.

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.

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 … )

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.

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.

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.

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.