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.

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.

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.

‘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.

‘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.

‘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.

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.

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.

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.

‘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.

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.

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.

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.

‘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.

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.