‘People of your age,’ she says, ‘start to fear their fading memories. With age comes effortful thinking and remembering’: much forgetfulness is age-related and non-problematic. We all forget as we get older, and this is normal, natural, part of the ageing process. Dementia is not natural, it is a disease. Nevertheless, there is a grey area, a place of uncertainty and trepidation, when forgetfulness deepens – when, as so many people with dementia say, something seems ‘not quite right’.
In her diagnostic work, Claudia Wald is looking for changes in behaviour. Almost always, the initial assessment is done in the person’s home, where the atmosphere is more relaxed, less contrived, and where much can be learned from context (the state of the house, of the fridge). She takes a detailed clinical history and uses scans only where there is diagnostic uncertainty: ‘I am trying to find out who the person was; I am looking for change.’ She must assess what part of the memory is affected: long-term memory? Language? (The language centre is next to the memory centre.) ‘The bank of words seeping away,’ she says – then adds: ‘This happens to us anyway.’ Recalling names? Faces? In her diagnostic criteria, at least two domains must be affected (language and memory, say; or memory and behaviour; or memory and sense of direction), before she gives a formal name to the symptoms she finds.
Between the inevitable process of ageing and the clear diagnosis of dementia lies the swampy territory of mild cognitive impairment (MCI), an interim stage which some see as a pathologizing of natural forgetfulness and others as a helpful indication of future problems. For there is no scientific boundary between disease and normality; lines may be drawn, but their exact location is a matter of evaluative judgement. ‘It’s a grey area,’ says Claudia Wald. ‘And at what point in that grey area is treatment appropriate? What is “normal” as we get older?’
Often she will find that circumstances have changed, so that props are stripped away: the death of a spouse who had been compensating for failing cognitive function, going into hospital, breaking a leg, moving house. ‘These things can expose difficulties that had been hidden.’ Depression, she says, ‘can be a precursor and a risk factor’, and it can be very difficult to treat. ‘Old age brings with it profound losses: the loss of a spouse, of family, of friends, of work, of health. There is huge loneliness and fear of death.’
All this means that the diagnosis is often not straightforward, and often it is the relative or carer who notices the change – because how can the I know that the I is slipping?
* * *
• • •
William Utermohlen, that thin and sad-faced man who became one of the great chroniclers of dementia’s self-loss, did not know, or if he did he withdrew from the knowledge. He was living with his wife, Patricia, in their London flat overlooking the canal, a book-lined, painting-hung space where they both worked, he in the attic studio with a skylight. I sit in that flat now with Patricia, who is soon to be ninety, although she still teaches an art class and is eloquent and vital and pin-sharp. Her husband’s paintings are on every wall; his face and hers stare down at me; the table at which they sit is the table at which I sit now.
She talks about her husband with tenderness and honesty: how he courted her (she had been married before, to a man she had been head-over-heels in love with, so was resistant at first); how they never had children and in some ways she was his mother-figure; how he never achieved the recognition he wanted. A figurative painter in a period when conceptual painting was dominant, he had some success in the early sixties but was then, in an exhibition of 1969, demolished by critics. He was ‘destroyed’, Patricia says, and perhaps he never quite recovered from the trauma, although the French art historian who represents Utermohlen believes that he started getting his energy back in the late eighties.
In the early nineties, several years before the official diagnosis, he became increasingly anxious. ‘He was always an anxious man,’ his wife tells me. ‘But he became more and more so – and more withdrawn.’ It was at this time that he began his ‘Conversation Pieces’, a series of paintings which French psychoanalyst Patrice Polini thinks were born out of a need to ‘define his existential references and capture his familiar surroundings’, and show a ‘sense of urgency in the face of a gradually fading memory and disorientation’. Their titles – Maida Vale, Snow, Bed, Night, W9 – fix the images in time and in space. These paintings are in many ways a celebration of the life that he and his wife shared: he returns over and over again to their large living room, flooded with light; through one window a view of the garden and another the canal, houseboats and the great city stretching out beyond. At the centre is always their table, at which Patricia sits, alone or with friends. Figures lean into each other, smoke cigarettes, drink wine, talk. There are cats (there are still cats); a rubber plant (and there is one still), coffee cups and wine bottles and ashtrays. The same decorated jugs stand on shelves. There are books everywhere. A sense of companionship fills the paintings – intimate talk is what these ‘Conversation Pieces’ evoke – and Pat is unequivocally at the centre. But it is possible to see the illness lurking, not just because some of the perspectives are starting to tip and solid objects are precarious, but because of the sense of the artist’s loneliness. When he puts himself into his paintings, he is on the edge, a solitary and watchful figure; there’s a painful sense of exclusion. He is painting himself out of the circle of warmth and vitality. In Bed, he shows Patricia sitting up, reading, cats winding their way about her; she’s the painting’s focus and it is on her that light falls, the vital centre. The artist lies next to her, on the far edge of the bed, the covers pulled over him so that only his small head is visible and there’s no suggestion of a body attached to it. Is he dreaming? Is he awake? It’s a profoundly troubling image. At the time it was painted, the disease was progressing in an ‘underhand’ way; he may have had a sense of it but he had no name for it. Just a sense of dread.
Patricia tells me of the watershed time he went to Paris, a city he knew very well, and got hopelessly lost. ‘It shocked him deeply.’ And shortly after that came another, much more ominous sign: he had been commissioned to do a family portrait for friends, grouped around their own table. ‘For a whole year he sat in front of the canvas and he did nothing. Nothing. And then we knew.’ He had always drawn, wherever he was. That was how he communicated. But now he had stopped dead. Pat thinks that he had some sense of what was happening to him before she did, but he did not say, could not say. He was still young. How could he have dementia?
* * *
• • •
Rebecca Myer’s mother both knew and did not know. Rebecca is a nurse who works in the community, often with people with dementia. When she tells me her story, her manner is thoughtful and candid. She has a way of pausing after a question, thinking carefully before answering. Her thoughts take her back to a dark time, for the story of her mother’s dementia is also the story of a close family struggling to manage chaos and disintegration. Her mother was an ‘immensely gracious woman, thoughtful and kind’. She met Rebecca’s father when they were both young, at an ice rink: ‘she thought he was a show-off, twirling round and coming to a stop in front of her. Dad used to say that he wore her down.’ They married when they were both twenty-one and were parents by the time they were twenty-two. ‘They were very close,’ she says. ‘They’d hold hands in the back row of the cinema. I’ve a photo of them and they are just looking at each other and it says it all. The degree of loss,’ she says, ‘is relative to the degree of love.’
When Rebecca talks about the terrible years that tore her life in two, her face is bright with love and sorrow. Her mother was clever, and had been a grammar-school girl, but her parents had no expectations for her when she was growing up and she lacked confidence. She had part-time jobs and did voluntary work for a charity. She liked books, poetry, puzzles. She always read stories to her children and played games with them: Rebecca starts to tell me about a game of cat-an
d-mouse she and her mother used to play when as a tiny child she would help her mother make the beds – and then she stops and smiles. ‘Strange what one remembers,’ she says softly. ‘So strange.’
‘But what I really remember was that she was always there. When I came out of school, she’d be there; or later, when I came home from school on my own, she’d be there. When we watched TV, I’d sit by her and put my head on her shoulder. I’d tell her everything and she would listen to me for hour after hour. When I left home to train to be a nurse in London, I was very homesick. I missed them. I still miss them.’
Rebecca’s mother was in her fifties when her family started to notice that something wasn’t right. She had always been ‘a worrier’ but now she became more so, and was struggling. ‘Now, in hindsight, I see there were signs,’ says Rebecca. Her mother could no longer work out money. She couldn’t measure out the formula for the baby milk for Rebecca’s baby daughter. It was Rebecca’s sister-in-law who eventually said: ‘Your mum’s not right; something’s wrong.’ But Rebecca’s father was hiding it from everyone, and from himself: ‘He just couldn’t deal with the distress. Mum would say to him that she thought something was wrong, and he would tell her no, everything was fine, she wasn’t to worry. His desire to protect us was incredibly strong.’ And so he wouldn’t confront what was happening in the heart of the family, and he wouldn’t let her confront it either.
* * *
• • •
Tommy Dunne did not know. I visit him and his wife, Joyce, in Liverpool, where they live in a small, neat bungalow with flowers outside the front door and everything in its proper place – this is where they moved after he knew that he was ill, leaving their ‘dream home’. He and Joyce sit together on a sofa, facing me as we talk, telling their story between them. They met each other when they were both sixteen, at a skating rink, like Rebecca’s parents – though they weren’t skating but going to an Edwin Starr concert. Tommy and his friend were sitting at the bar drinking (illegally). Joyce didn’t fancy him at first; it was when she saw how kind he was to her baby sister that she started to take notice. They are both one of eight siblings and so they have a clan-like family in Liverpool. After they married, Joyce did odd jobs and Tommy worked on the railways, at first as a driver and then in management. Their son was born when they were just eighteen, their daughter several years later. They had, says Joyce, ‘a good life. Everything was going the way we wanted.’
Tommy has a round face and is a man of smiles; he smiles as he talks now, but the years leading up to his diagnosis were hellish ones. His first symptoms were not of memory loss but of his world shrinking, and he takes out his iPad to pull up a diagram showing a series of concentric circles, each differently coloured ring representing aspects of an individual’s world, from the bull’s eye of me, to family, friends, work, community, city . . . ‘The outer rings begin to fall away,’ he says. He swipes left, left again. Circle after circle disappears.
Joyce joins in: ‘I had noticed years before, perhaps as many as ten years before, that something was wrong. Tommy’s job was quite stressful; he became absent-minded; got very quiet – he didn’t speak as much as he used to. But I put it down to stress. You dismiss things and think, “Just get on with life.” We didn’t talk about it, but gradually I started to wonder if he had Alzheimer’s. It wasn’t just his memory. For example, we had this glass cabinet for appointment cards and things, and he couldn’t see them. He couldn’t find his coat when it was right in front of him.’
And then, ‘One bad day at work’ – Tommy goes on, smiling – ‘I could feel it happening and I could see it. It was like one of those old films unravelling.’ He makes a violent gesture with his hands. He stops talking.
‘He shut down,’ finishes Joyce for him. ‘Completely shut down. I came home and he was lying in bed, shaking and shivering. I took him to the doctor and he was signed off for two weeks.’
Two weeks passed. Tommy went to see the work doctor who said, in front of him, ‘This man will never work again.’ He went to see the work psychologist, who thought he was having a nervous breakdown. Nothing changed. Tommy lay in his bed in a state of terror. Six months later, a psychiatrist diagnosed him as bipolar and he was put on lithium, gradually increasing the dose. ‘I knew he wasn’t bipolar,’ says Joyce. ‘He’d always been quick-tempered, but it wasn’t that. I knew.’
Three times a day, he was visited by health professionals because he was believed to be a suicide risk. For a year, he lived with a sense of oppressive foreboding: ‘A dread. I could feel it coming. Twenty-four hours a day. I thought I was going to explode, like a spring compressed and compressed and compressed inside me.’ When Joyce left the house he would unplug the phone. If someone knocked at the door, he would go to bed and pull the covers over his head and wait for whoever was outside to go away. ‘Time slowed right down. I was never going to get out of it, like a snowball rolling down a hill, worse and worse and worse.’
But he didn’t know he had dementia.
* * *
• • •
Pauline’s mother in the Netherlands did not know ‘until that test drawing of the clock . . . She was constantly laughing, fearfully, at the silly mistakes that she made.’
* * *
• • •
And my father? It’s like mortality: until there’s a test, a diagnosis, a name, knowing isn’t knowing.
‘You are no different the day after diagnosis,’ says Sube Banerjee. ‘Except that you recognize what you are facing.’
I nod. That’s quite a large except.
‘A diagnosis,’ says Claudia Wald, ‘is just the start of learning how to live well with this condition. There can be a paradoxical comfort from knowing there’s a name and a reason for this changed sense of self, but some people do not want to know.’
I notice a subtle change in her manner. She picks up her pen: ‘Are you ready?’
My racing heart, my sweating palms. It’s like being back at school and doing an exam – except I am the exam that I don’t want to fail.
‘Remember these words,’ she instructs. ‘“Apple”, “penny”, “table”. I will ask you for them later.’
I nod. Apple, penny, table. Apple, penny, table.
‘I am going to give you an address which I want you to remember. David Barnes, 73 Orchard Drive, Kingsbridge, Devon. Have you got that?’
‘Yes.’ I am holding the lines in my head, repeating them to myself. Apple, penny, table. David Barnes, 73 Orchard Drive, Kingsbridge, Devon.
She asks me the date and I get it wrong by a day. My heart bangs harder. She asks me who the prime minister is and this I get right – though I am talking in an oddly jocose, self-conscious manner that I don’t like at all. My face feels stretched.
She asks tells me to count back in sevens from a hundred. I was never quick at maths. ‘Ninety-three,’ I say. ‘Eighty-six. Seventy-nine.’ Apple, penny, table. ‘Seventy-two.’ David Barnes.
Next I have to give as many words as possible starting with ‘P’. My mind blanks but off I shoot, hectic; my voice comes out scratchy and I am grinning foolishly. The words arrive as jerky Latinate multisyllables – parsimonious, peri-menopausal, penitential, patriarchal, pertinacious, programmatic, plausibility – with the occasional home-run of simple ones: put, plant, pot, press, poppy, potato, poem. As I reach the end of my minute, I realize I forgot all the ‘ph’s.
I haven’t told her how I find it increasingly hard to recognize faces. I haven’t told her that sometimes I’ll fail to see what’s in front of my eyes.
I repeat the address, and the burden of holding it in my mind lifts from me. I say: ‘Apple, penny, table.’ My heartbeat is slowing. She asks me to draw a clock. I do so and then see, appalled, that I’ve put one o’clock at midnight and midnight nowhere at all.
‘You’re fine,’ says Claudia Wald. I know I am really, but I want to weep.
&nbs
p; 5. THE DIAGNOSIS
‘We have heard the chimes at midnight.’
Leaving the memory clinic, I am slightly breathless. I feel thin-boned and insubstantial. Relief hasn’t yet flowed into the place where anxiety had been; I have a sense of being scraped out. But I’ve been reassured that I’m still on track. Those appalling blanks, those moments of addled vacancy when I scramble around in my mind for names, dates, certainty, a sense of connectedness to the world around me, are simply a product of age and normal forgetting. I unlock my bike, put on my helmet, cycle off, the wind in my face.
However kindly and tactfully it’s delivered, however parenthetical, it’s a sentence. You have dementia. We all know that we are going to die, but we don’t really know, not until we are sentenced. Dementia is a terminal illness, one that usually works with grinding slowness, chipping away at the mind’s sense of itself.
‘Do I use the “D” word?’ asks Claudia Wald. ‘It depends.’
‘I felt cold water running down my spine,’ says Tommy Dunne in his little bungalow in Liverpool. Beside him, Joyce sits quite upright, her face calm, her hands folded on her lap. ‘I thought: “My life is over. I’ll become one of those people sitting in a chair. My family will come and visit me, first once a day, then once a week, then once in months, until they don’t come at all. Just me, a chair, a bed, a room.”’ The countdown.
The Last Ocean Page 8
