‘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.

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.

‘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.

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.

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.

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?

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?

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.

‘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.

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.

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.

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?

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.

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.

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.

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.

‘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.

‘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.

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.’

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.’

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?

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.