Living with Dementia

My wife Anna developed Alzheimer's in her early 50s. These are thoughts on what it was like day to day to live with dementia, for me and for her.

Wednesday, May 31, 2006

You get angry when you can. I choose NatWest. Anna’s new cheque book hasn’t arrived and I need it to pay her bills. I phoned their telephone line. ‘Put her on the line.’ ‘I can’t but I do have power of attorney.’ ‘It doesn’t show on my system ‘ The computer says naaah.
We used to have a savings account that paid higher interest but you could only access it by telephone. Anna stopped using the phone and so I tried to close the account. You could only lose it by telephone. ‘But she can’t use the telephone, that’s why we are closing it.’ In the end I got someone to pretend to be her.
‘Never give your number to anyone else.’ Chip and pin is helpful of course, because you can do just that, very useful if you have to represent someone in this automated world. Naaah.

Monday, May 29, 2006

Another good moment. Joanna has been with Anna this afternoon, and I could do some writing in the garden. Suddenly there was a squall of bad weather. Joanna’s boyfriend arrived for her on his motorbike, so he came in for a few minutes. It was very good for Anna, a coming together of worlds without friction. Dulette arrived and for the first time Anna accepted her presence as normal. It has taken three days, as I said. The end of the bank holiday weekend.

‘We are happy here.’
‘Yes, we are.’
I was waiting until I had something good to say. A cat is sprawled above the television set, where there is just the warmth he likes. The sun has come out after a shower, so that even the privet hedge glistens and looks good. Sarah, who gives us massage, has cried off because of her hay fever. So suddenly it is very quiet. And Anna says ‘We are happy here.’
The calm after the storm. ‘’Please put me back where I am.’ But I couldn’t do that and her headache got worse. Even her best friend Lynne was her worst enemy. ‘You are a liar,’ she accused without reason. Lynne’s husband Bob was painting the hall and stairs, with Geoff and Louie. Reparation in tins of emulsion, but blocking the way to the toilet. I went out to buy cat food and bleach from Tescos. But they have all gone now, Dullette the carer, who cooked liver for her lunch, Lynne, Bob, and the others, and we can sit and think, or just sit. A dementia moment.
There is a lot talked about happiness. It is not a stable state but a moment of relief, a change in the weather, a pain stopping its stabbing, a first sip of whiskey, a drowsiness, a comforting creak on the stairs, a smile instead of a frown.
Anna has a favourite poem:
Sometimes things don’t go, after all
From bad to worse. Some years, muscadel
Faces down frost, green thrives; the crops don’t fail.
Sometimes a man aims high and all goes well.
A people sometimes will step back from war;
Elect an honest man; decide they care
Enough, that they can’t leave some stranger poor.
Some men become what they were born for.
Sometimes our best efforts do not go
Amiss: sometimes we do as we meant to.
The sun will sometimes melt a field of sorrow
That seemed hard frozen: may it happen to you.
[Sheenagh Pugh}

It was another bloody Sunday. Anna would not accept the carer at all and I am trying to think why. Friends came with their little girl in the afternoon and everything was fine. The three-yeard looked curiously at Anna but mostly concentrated her beautiful eyes on fascinating me. Then the carer came again and made an omelette. I could not get Anna to walk to the table. She went round in circles, as we all did in our heads. There was no way of helping her, not then, not later. Anna said to me, she’s got into you. So she was talking about projective identification?
In ‘The Unfaithful Brain’ Anna wrote about mediators and busybodies, as a useful distinction between those who were helpful and supportive to her and those who were interfering and intrusive. But it is more difficult than that of course, because the mediator and the busybody can be the same person, doing the same thing. The everyday helpful action is also intrusive, supporting her independence and undermining her autonomy at the same time. That way she does not get to eat.
Increasingly she refers to objects around the house as belonging to her mother. Anything, she likes, that is comforting, ‘that was my mother’s.’ You would not know from this that there were long periods in her life when she and her mother were hardly talking. There are letters from her mother which are hurt and resentful of Anna for getting out from under her powerful personality.
Anna says she does not recognise the carer, or that she is there because I want her (which is partly true). But I think this is an alibi. She has to reject the carer, however good she is, or recognise her own fearful dependence.
Yesterday was a bad mother day.

Sunday, May 28, 2006

I am sitting here on a Sunday morning with my stomach knotted. I think I heard Anna call out for me. But I am leaving her with the new carer, who is trying for the second day of the holiday to make a connection with her. Where do I go with my anger? Sometimes I pick on individuals, for example, some old work colleagues who used to know Anna but don’t stay in contact now, don’t return emails. Or parts of the social services who are slow to respond. Anna and I have to be slow in a lot of things, so when I see others being slow without good reason I feel my blood pounding.
Last week I went to the local authority customer services centre to pick up a blue badge for disabled parking and the woman behind the counter was sooo sloooow shuffling papers, wandering away from the desk and back, finding a file and then realising that the system had been computerised, looking at the screen, writing out the form, so that I was now at risk of being late for a work appointment. I stayed calm, well calmish, but I could feel the fury. I once took a taxi in Dublin and the taxi driver took me three times to a wrong address as we crossed and recrossed the city, so that I was two hours late for a meeting. ‘Why are you so stressed?’ he said, ‘you should learn to relax.’
Anna is angry, and I told the carer that it usually takes three days before Anna begins to relax with someone she doesn’t know so well. A new carer has to ask her things and that is hard work for her, it reminds her of what she doesn’t want to think about, and so she is angry.

Saturday, May 27, 2006

I can hear Anna arguing upstairs with the carer. She does not recognise her, she says. It is the bank holiday weekend and half-term and Daisy is away. We have three regular carers, but the fourth carer who comes to cover for them has a difficult time. There are two or three who do this, they know Anna but she does not know them.
Holidays are always disruptive. I used to make a joke about that, that holidays are a bad idea because they make people dissatisfied with the rest of their lives. Better to live all your life as if you are on holiday.
Now we talk of consistency and continuity for Anna, but even when it is going very well there have to be disruptions to the routine. And she likes treats. Today we are driving to the country to see a friend.
I can feel the tension in me, hoping that we will have a good day. Anna is refusing to let the carer help her. I have to decide whether it will make it better or worse if I intervene.
‘They hate me,’ Anna says. I try to reassure her and go back downstairs. I can hear some cries – could be Anna or the children next door, getting up.
Our lunch with Nancy goes a treat. Nancy has written an article about her work in a burns unit, which I would like to read, and we tell her how Anna still has publications to come next year, a literary article on TS Eliot and Wilfred Bion, which has been hanging around on the internet for years, a reprint of her most cited paper on nursing, Where Angels Fear To Tread, and of course her chapter on The Unfaithful Brain, about her experience of Alzheimers.
There is a moment of sudden sadness, as Anna objects to a question from Nancy about my work. She feels left out, left behind again. You’re retired, you’ve done your bit, we say cheerily, insensitively, as she goes deep into what she has lost.
The moment passes and Anna is enjoying her beef and pasta. And I take pleasure in manipulating two forks alternately, so that she keeps eating. An example of a small triumph, rewarded with a smile.
Back home, in the evening, Anna again cannot make sense of the help she is getting from the carer. She feels that she is being assaulted by a stranger, and for two hours we talk about nothing else.
I think of Eliot and his life:
In the room the women come and go
Talking of Michelangelo.
And indeed there will be time
To wonder ‘Do I dare?’ and ‘Do I dare?’
There are times when I think that having a carer is a lot more trouble than not.

Friday, May 26, 2006

I was idly searching the internet for stuff written on Alzheimers and found this in a research abstract: the sequence of deficit acquisition was heterogeneous.
Meaning that everybody is different. And they can’t predict and you never know quite what is going to happen next.
They could have written much the same about Anna.
‘Impairment of semantic memory, visuo-spatial and attentional abilities eventually developed but the sequence of deficit acquisition was heterogeneous.’ Absolutely.
So we have something here that is progressive, irreversible, but also erratic. A good candidate for using the perspective of complexity theory: the individual like any system in a state of bounded instability on the edge of chaos. Sometimes it seems that it takes less than the beat of a butterfly’s wing to change Anna’s mood.
In a fast-moving world measured in nano-seconds it is difficult to plan at any time. The instantly changing world of mobile phones for the many and blackberries for the few has made a virtue of living in the moment. Dementia is about living in the moment but for different reasons – because of the difficulty of accessing information.
How do we plan for a disease like this? Six years after the diagnosis, eight years after we started to notice that something was going wrong, and years before that, if we had known, when there were processes getting under way to break up the connective patterns of Anna’s brain., and yet still we find it difficult to have a coherent plan.
My brother Robin says that we are playing catch up and he is right. We make changes to the house, as Anna experiences a new difficulty. But we don’t seem to be able to run ahead and makes the changes ready for her.
The help we have received from the occupational therapists making their assessments has been pathetic, to be honest. But there are reasons for this. First, they have a disability model, which is helpful to some extent, but it is inflexible, it does not take into account that this disability is fluid, on the move all the time, will be different from the time of referral to the time of assessment to the time of introducing new aids. This is a professional rigidity, that does not work with dementia. Second, there is a systemic rigidity, so that the referral process itself is linear, where one and one only response is allowed for any given stimulus, and then the case is closed.
Anne the carer is upstairs with Anna in the bathroom. She is brilliantly pragmatic and as long as Anna can still use the old bath, they are holding on to her sense of her old identity and independence. ‘I don’t need any help’, is her cry of freedom.
A wheelchair is under wraps under the stairs. Anna is virtually housebound but she does not want to be an invalid.
I am learning about her increasing difficulty with crossing thresholds. I knew she was uncertain with steps and ledges, seemingly lacking the sense of perspective that can distinguish a flat surface from a cliff. So we have put in rails and have ramps on order. But the difficulty is not physical – she can walk as well as you and me. The problem is psychological and neurological and the threshold feels unsafe to her, even the flat floor going from the hall into the dining room, where she may stop for several minutes at a time, sliding her foot forward and back, unable to be reassured that she is safe.
So we continue to improvise, taking our lead from her. It is no good our having ideas, if they don’t work for her. Robin will build a wooden ramp, and we hope that Anna will soon feel safe to go into the garden again – it is looking good for her.

Wednesday, May 24, 2006

‘I know now I’ll never go away.’ I was sitting with Anna after breakfast and she was distressed. ‘We can go places,’ I said.
‘You can I can’t.’
And then she asked again: ‘What is so awful about that place?’ She meant Greece, I know. It was easy for me to guess that. And I explained again about the difficulty we would have in travelling there. She obviously thought I was not trying hard enough: ‘You’re a big man.’ Yes, and if I could carry her, I would. But she was not impressed. ‘I’ll find someone to go with me. I’ll have to find somebody else.’ It is as if I have failed her as a husband.
But then her independence left her. ‘I’ll go to the toilet – [pause] – I don’t know how to do it.’
Later she was angry again. ‘You hate me, don’t you.’
I offered her something for her headache. ‘You just want to get me out of it.’
Then she tried to explain about something really good. She stood and waved her arms … ‘Green things, up there.’ I could not understand and she got more angry at my stupidity. She gestured about something that went round and round. I tried to find out if she was talking about food or clothes, or flowers in the garden, perhaps the rose bushes.
‘Don’t do this to me.’ She was really frustrated now. She explained again: ‘Boys like it.’ Her arms waving again, , she gripped my hand with sudden force. ‘It’s up there.’
Eventually – and this was after an hour or more - I thought she said, lights? and I guessed, Christmas trees, and that was right I think, Anna looked relieved and became calm, though by then I don’t think she remembered what she had started out to explain. And why she would talk about a Christmas tree at the beginning of summer I was not to know.
I am of the generation that read R.D Lang in the 60’s. Lang listened to the sense of what people said, and took what they said seriously, even though they had a diagnosis of schizophrenia and were talking like they were quite mad. How to listen to someone with dementia? The sense is there but the associations are wild and the gaps between the words get wider and wider.
There is someone - I forget the name, anyone know? – who has written poetry from conversations with people with dementia. Psychoanalysts and others listen to the music behind the words. In Tavistock group relations conferences some people do well with understanding what is going on, when they are unfamiliar with the language being spoken.
If I had thought of a Christmas tree earlier, it would have saved an hour of mental pain. This is more difficult than Sudoku. ‘It gets to my top,’ she said., meaning her headache. ‘I’m frightened I’ll have no brain or something.’

Tuesday, May 23, 2006

Do I think it’s cathartic, writing this? I realise I take the question as a criticism. The OED definition of cathartic is of a purgative, ‘Producing the second grade of purgation, of which laxative is the first and drastic is the third.’ I don’t know. Is that what I am wanting? I feel like I am writing messages in bottles and throwing them into the ether. It is difficult to write about experience. Soldiers don’t talk about important stuff except to other veterans. You don’t want the response, it must have been awful, I don’t know how you survive, but that is the universal response.
I don’t want to be going to the toilet in public, like Diogenes living in his tub in Athens. But I don’t like the implication that living with dementia is somehow dirty, shameful, not something you talk about in polite society.
Of course there is another question – do I want people I meet in other circumstances to know about this? Probably not. It is not relevant, and so probably they won’t be interested to read this, even if they know about it. I have a simple observation that you don’t have to scratch far below the surface to find a sorrowful story or two in almost anyone’s life.

‘I won’t be a person who’s horrible, bashing people about.’
‘I’m worried that it’s going to go down. I’m usually quite white, upper.’
In these ways Anna talks about her depression and the anger., both of which she wants to manage still.
Her language is original but logical – it is common enough to talk of black moods but not of being white – eg, cheerful.
She cannot manage her moods, of course, or her behaviour all of the time. In this she is like anyone else. She does not remember the details of her outbursts but she remembers having them.
A week ago I went to a funeral, a lovely old lady called Ursie Smith., who had become a bit confused herself. I did not take Anna because of the crowds, an impressive send off for an 85 year old. I have just got a letter from her husband, Bill, who describes their last meeting, last summer, how Anna got to her feet and moved towards Ursie and stood by her, as Ursie sat, interested, attracted, warmed towards her, something mutual.
I have wondered about the friendships that could develop. Perhaps that is what day centres are for: Anna certainly was interested in one or two of the clients, the few times she attended. But I think a day centre is too groupish to allow real friendships easily. I have in mind very small clusters, perhaps two or three people living locally, sharing a support group perhaps. It would no be easy. There was a neighbour, who wanted to be a volunteer, who came to see us a couple of times, brought her knitting. But Anna turned against her, when I was away, and we lost her.

Monday, May 22, 2006

8.00 in the evening and Anna has gone to bed, Daisy with her, and I hoping she will sleep, as she is tired. The front door bell. I think it might be my son Dan, who was in a car accident yesterday. But it is one of those young men, unemployed, with a tray of cleaning materials for sale – our cupboards are bulging with them. I point at the notice on our front door –DOOR TO DOOR SALES? PLEASE DON’T RING.
‘Can you read, ‘ I say, for starters.
‘Yes, I can, sir, and can I explain, people sometimes move away …’
I interrupt. ‘The notice is for a reason. I am not just been unfriendly. I have an invalid here and I don’t want unnecessary calls.’
‘I didn’t know that …’
‘I’m telling you.’
‘ You’re not listening to me. The reason I rang is that people sometimes move away …
‘You’re not listening to me,’ I say.
‘Why are you shouting at me. Can’t you see it’s making me worse.’
‘I can,’ I say, and close the door.
‘Cunt,’ he says. ‘ I’ll send my friends round.’
Fortunately Anna has not woken up.
This is a meeting of different worlds – the angry disturbed young man, treading the streets, doing his best, I suppose, and the angry (disturbed?) old man, trying to protect his home as a sanctuary of a kind. I complain about social isolation but I still want to protect the boundary if I can. And it is strange to build a defensive wall with vulnerable people on both sides.

We had a sociable weekend, more than usual, family and friends. I even cooked a vegetarian lunch. Anna slept well and likes company, though got lost in the conversation, when there were more than two people. So, after lunch, she and I sat quietly together, while the others finished the meal. She looked very sad and I asked her what she was thinking. ‘I want to get out of it,’ she said.
Meaning the illness, as if she could get out of a bad situation. Like I dreamed last night of getting out of a bad situation at work. You can always do that, walk away or get the sack. Isn’t there an issue about prison sentences, that there has to be the possibility of remission even to life sentences to give the prisoner hope? In some cancers and M.S and other diseases, there may be times of remission. I don’t know if it is better or worse to be allowed hope and then have it taken away again. But it means that you can fight the inevitable.
I am not emotionally interested at all in the possibility of a cure for dementia. That sort of hope is not relevant for us. But we need to have some sense of progress (apart from the disease ‘progressing’), of making sense, of overcoming some problem or other set up by the fates.
In Philip Roth’s new novel, Everyman, his daughter repeats at his grave his stoical maxim, There’s no remaking reality. Just take it as it comes. Hold your ground and take it as it comes. (Page 5, I have only been able to read a few pages as yet.)
When I talk about the fates, does that mean anything other than reality? So I get exaggerated pleasure out of very small triumphs – repainting the hall is progress of a kind. Building a ramp into the garden will be a major achievement, even though we won’t know until it’s done if Anna will want to walk down it. A threshold can be as much an obstacle for her as a brick wall.

Saturday, May 20, 2006

‘I don’t want to upset people.’ Anna used to say that, when she was still able to write her account of the illness. Why not? I thought. There has been a lot on television recently, including Coronation Street. In the Alzheimers Society newsletter the chief Executive Neil Hunt commented that some people ‘ think it focussed on the experience in such a negative way that it will deter people from seeking help. It is a difficult area. We know early diagnosis brings many benefits, but don’t we have to face the fact that dementia does bring many desperate challenges?’ I agree with him on that. The newsletter itself is - probably rightly – very positive in its approach, with success story about self help and support and tips for coping.
I remember when Anna and I were asked to a meeting with another couple. The woman - with Alzheimers – was silent and the man spoke about her as if she was not there. I was able to observe how good Anna must have been as a family therapist, as she cut across the man and got the wife to speak for herself. At the end of the hour the man was distressed, his defences weakened. Was this helpful? I thought so at the time, though the professionals present looked uncomfortable. It was only when Anna was herself able to see a psychoanalyst that she found a professional who was able to talk about her fears about what was happening to her.
If we are not upsetting people, what are we doing? I see Anna’s friends, when they visit, and how distressed they get. Dementia is upsetting in a particular way - it is devastating in its cruelty, as if we are being played with by a malignant spirit: so you thought you were clever, made in God’s image, cock of the walk, king of the castle, the ego centre of your universe, well, we’ll see about that. (Yes, I know these images are male – dementia is an attack on potency. Perhaps that is why of Anna’s old friends, it is more often the women than the men who are still able to visit.)
Anna doesn’t remember the details now when she has been angry, difficult, shouting at the carers, refusing to be helped. There was a lot of that in the last week, perhaps because she had a headache, perhaps an infection. Although she doesn’t remember it all, she sometimes apologises, as if she is trying very hard to be good. When she herself is in tears, this is natural enough – normal, if such a word has any meaning. It is difficult enough without having to be cheerful all the time.

Thursday, May 18, 2006

I am in a state of mind when I am losing things. Put down my glasses and I don’t find them again. I am having to use Anna’s. Yesterday I was going to a meeting with social services and health about the support we are getting. I could not find a form, outlining the ‘care plan’. I searched for two hours but I still can’t find it, staring me in the face probably. Perhaps I can’t bear to look at it.
At work, if I lost an important document like that, I would be worried. We talk about losing our mind. Anna wrote about how her unfaithful brain left her, as she said. ‘Maybe it left itself behind with my briefcase, full of a career built on thinking, and forgotten on an underground train.’
I have a simple theory about losing things, that it happens when your mind has had enough. I remember some years ago getting up very early in the morning to go to an important meeting outside of London. I had everything ready, kissed Anna as she slept, and went to go out the front door. No car keys. I looked, at first urgently and then with increasing panic, trying to remember where I might have put them down, what clothes I had been wearing, etc. . I woke Anna and together we searched. Finally I ran off down the road to catch a bus to the station – I arrived at my meeting, two minutes late. When I git home that evening, I found the keys: they were on a hook by the front door, exactly where they should have been. I reflected on this madness, and thought that if I was that agitated it was better that I did not drive. Who knows, I might have had an accident. The failure of my mind may have saved me that day.
But the failure of Anna’s mind – what is that saving her? She goes round in circles, literally, round and round the room, trying to complete a thought. ‘It’s all from the garden’. She means she had not liked a vegetarian dish the carer had prepared. That we can understand, but now she is struggling with something else … ‘You know, we were talking about it!’ We were talking about all kinds of things, clothes, friends. I make a guess, I make a list of guesses. Her frustration is acute. ‘You know, you know!’ But I don’’t. The thought is lost without a thinker.

Wednesday, May 17, 2006

It is a simple thing, I was going to have a drink with a friend, Andrew, but I didn’t make it. He is a professor of social work and we were going to talk about the future of social care among other things. Anna had been complaining of headaches and her back and might have an infection and I could not think of anyone to come and be with her for a couple of hours. The care system was exhausted. Not much in itself, but it felt like a defeat. A door banging shut.
I get the support I can - including a weekly meeting with a psychoanalyst – but this week the carer on Wednesday mornings has gone home to Poland to celebrate her marriage, and there is not anyone else I can trust at this time. It is only the second time I have missed a session in six years, but it is the second time in six weeks. Another door bangs.

Tuesday, May 16, 2006

‘He is too old for me’. This was the reassuring comment that the carer Joanna made to Anna. It is a difficult thought, but Anna the jealous wife is wary of the women who have come into our life. Sometimes she thinks that all women must be after me – no cheap jokes, please – or more painfully that I will be after them, as she senses the loss of her own capacity to flirt, to charm, to seduce. (Though she has very successfully used that charm to get doctors and other professionals to lisdten to her, even now. As the psychiatrist , a woman, said to her recently, you have style.)
But sexuality is still an issue, as she struggles to hold on to her place in the world. There are two young carers, Joanna and Marta, Polish, who sit with Anna some mornings and afternoons. They have a special patience and respect with Anna, which means that they are good at the job. They need this patience because often she will look angry when she first sees them, ask what they are doing in her house, and may be restless for an hour, before she relaxes with them.
It was on one of these times yesterday that Joanna reassured her that I am too old for her. It will be all right as long as we can be light-hearted about these things, for the passions below are very real. ‘You want to leave. You hate me.’ No amount of reassurance takes away the fear.

Monday, May 15, 2006

Of course Anna does not always smile. Suddenly she is angry and frightened – very difficult to find out why or what. Any help you give her is a threat – so that she rejects it all. ‘I can do it myself.’ But she can’t do anything.
It is a dilemma, when you think someone is disturbed, you know they are, but you want still to respect their autonomy. Anna used to have quite a benign hallucination, that she was carrying one of the cats. She would clasp her arms round her bosom and seem very content and totally convinced by this. It did not seem necessary or helpful to say, there is no cat there, it made no sense to her.
But what if she wakes in the night, scared, pointing wildly in a sudden terror? You try to reassure, say there is nothing there. But this makes no sense to her, also.
I remember my first wife, Judy, who was manic depressive. She has some wild ideas – if you wanted her to keep talking to you, you had to listen and with sympathy to what she was saying.
The rules are different at home than they are in a consulting room – but there is the same need to hold a line, when it seems that reality is under threat.
The response is immediate. ‘You hate me’.
I make reassuring noises, less and less convincing with each repetition. ‘You’re mad’, she says. Or: ‘You think I’m mad.’ Whichever, it is a recognition that we are in different worlds at the moment.
I am surprisingly calm, too calm. It is over six years since the diagnosis. I used to get more upset than this. Every change in Anna felt like there was a step missing and we were falling into hell. Worst were the psychological tests that recorded clinically her loss of spacial awareness, her losing the ability to recognise objects. But I am not shocked any more by the deterioration in her condition.
I despair at the way time is drained from each day, as we sit and stand, stand and sit, circle restlessly.
It may be she has an infection. It would be good if there is something we can do to help.

Sunday, May 14, 2006

I don’t know how you do it, people say.
Nor do I. It is worth thinking about, what you learn from living with someone with dementia, about them about yourself, about how we think about a lot of things in this hypercognitive world.
Anna is saying something. I’ve missed it. I say, Yes, and she looks at me, knowing I haven’t been listening. ‘What did I say?’ I don’t know and she can’t remember. She gets up out of her chair. She walks to the front door. I guide her back into the room, try to offer her a drink, get her to sit down. ‘I’m cold,’ she says. I put her shawl around her. The heating is already on, the gas bil was over £600 last quarter. We are doing our bit for global warming.
‘I want to …’ She can’t complete the sentence and looks at me, begging me to understand. She wants to go to – the toilet? Venice? Or any place in between. She is angry with me for not knowing.
It is a different world, where the wheels turn very very slowly.
It costs me £10 a time to come out of this world – to pay for someone to be with Anna, to mediate, because on her own she cannot understand what is going on around her. I think of this tenner as a kind of toll I pay for living in the ordinary world. I am living with dementia, but so is she – all of the time. No ten pound voucher for her to join the people she used to know.
I would like to think from the inside about living with dementia – what would help people living so far on the inside that you don’t even know they are there – where they are faced all the time with the transience of things, when a thought is forgotten before it can be expressed..
It’s not all bad, that’s the first thing to say. You focus on the essentials. It is not at all like meditation or other spiritual exercises. But you learn how to focus minutely on ine thing at a time. There is no time to do anything else. You remember the poem that John Clare wrote: I Am.
I am: yet what I am none cares or knows,
My friends forsake me like a memory lost:
I am the self-consumer of my woes …
I look at Anna and she looks at me. She smiles. I smile. It is not always so peaceful but for a moment we don’t have to think about anything else. .I try to imagine what it all looks like from her perspective. The blur of movement. The cacophony of sound. Meaning slipping away like a vivid dream you think you will remember but a moment later you don’t.
She says, ‘Can I go with you?’ I shake my head. ‘You don’t want to go there,’ I say. But she would, of course, still, even as she stops on the threshold, paralysed with fear.