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.

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."

‘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.

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.

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.

‘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.

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 ….

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?

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?

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]

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.’

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.

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.

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.”

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.

‘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.’

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.

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!