Theresa Clarke says that the time will come when she will no longer be in possession of her true self. ‘I will do the best I can here for as long as I can. I don’t know what it will be like as my memory closes down. But I hope I have enough time to go out on my own terms.’ Her eyes are bright, her expression canny. ‘I am quite happy to end my life, you know. I have no children. My siblings are all dead or old. I can do it on my own terms. I will see myself out in my own way. I’ve thought about it – and not in a negative way at all. I’m realistic. I’m not a saint, but I believe I’ve been a good person. I’m counting on my experience to notice what is changing; I’ve always had an agile brain. I’ll be leaving because I no longer have control in my life or joy in my life. I won’t tell anyone. I love life, but I have no fear of dying. Actually’ – she put her head on one side in that way she has – ‘I am quite looking forward to it. For life is a struggle. I explored. I was nosy. And I want to be aware that I am leaving life. I’ve seen other people in those last stages – it isn’t good. I need to go on my own terms. My mother would say: “That’s our Theresa.”’
She means it, may likely do it. But it’s hard to say goodbye to ourselves.
* * *
• • •
One of my favourite jokes goes like this: How do you make God laugh? Tell him your plans.
Dementia has become the illness we most fear: and this is a special way of being afraid, not just Philip Larkin’s furnace-fear of death but fear of a living death, of a nightmarish incarceration within the decaying body and mind.
I trawl through the advice on how to prevent it. There’s a lot of it, some precise and some general, some feasible and some not. Eat raw fruit and vegetables. Exercise. Eat fish. Get a hearing aid. Do crosswords or some such brain-training thing . . .
(There are brain-training sessions you can download: five minutes every day of exercises, starting off simple – as in, here are three words: hut, hot, spy; now tell me what’s the second letter of the first word, the first letter of the third word, the last letter of the middle word? – and getting more complicated. I quickly get myself in a pickle.)
. . . Learn a new language. Stop smoking. Sleep better. Eat a Mediterranean diet. Take K vitamins. Meditate and be mindful. Think. Run. Communicate. Complete secondary education. Lose weight (if you’re overweight). Don’t be lonely. Seek help for depression. Sing. Dance. Play an instrument. Walk. Laugh. Connect. Connect. Connect. Only connect.
* * *
• • •
When I started writing this book I made myself a list of the things that I would do should I discover that I had dementia.
Put my financial affairs in order and update my will
Write a living will, stating my precise wishes, including a DNR
Investigate ways of choosing the time and manner of my death
Say the diagnosis out loud to everyone I know, taking Tommy and Theresa as my inspirations
Write a letter to Sean
Write a letter to each of my four children
Throw away things I don’t want people to find
Radically tidy my home
Start giving things away
Say sorry to a few people who are on my conscience
Do those things I’ve always promised myself I would do, one day, when I have time, space, freshness (not one of those bucket lists, but read the great novels that I’ve missed; revive the disintegrating Italian I used to speak; listen to nightingales sing in the woods near our house)
Have fun (as the great Dr Seuss says in The Cat in the Hat, ‘fun is good’, but it’s strangely easy to forget that)
Stop hurtling through life in that great race against time we can never win . . .
Read poetry every day, out loud
Do more wild swimming
Dance with abandon
Avoid self-pity: as Tommy says, Why not me?
Make peace with myself; let go of anger; still my restless heart
Eat oysters every day
I should probably do most of these things anyway, of course. We shouldn’t have to wait for a diagnosis before we attempt to lead a better life. Life is finite from the start – a finite life is a precious one. We will all be mourned in the end.
* * *
• • •
I think of Theresa Clarke, walking, walking, walking, up and down, and round and round the small room that contains her whole world now. Holding on to herself, waiting for the time when she can no longer . . .
I think of Tommy and the concentric rings that he showed me on his iPad, and of his heroic attempts not to lose the protecting circle that is Joyce, that is love, that is the final circle before he only has the lonely I.
Of William Utermohlen making his marks on the canvas: a staring eye, a beak, a white space where once the world burst in.
I think of my father. I think of him smiling at me – ‘Hello, Nic’ – and am rinsed through with sadness and gladness. When the long trick’s over.
To live until we die. If only.
14. DEATH
‘Death twitches. “Live,” he says. “I am coming.”’
It has become easier to live longer but harder to die well. In previous centuries, death was familiar and not hidden behind institutional walls: before the twentieth century, there would have been scarcely an adult who had not seen their parents, some of their children and their friends die. Moreover, there was faith that it was not the end. People witnessed death, dealt with it, prepared for it, even embraced it; it was public and accepted. Now, although we live with the sense of our own ending, we don’t, really. We know we’re going to die, but we don’t know. Our body doesn’t know, except in dizzying moments of terror, not until the sentence has been uttered and the gallows are being built under the window.
Even then, death is often held at bay and life prolonged at all costs: the fragile and disintegrating body is plugged into machines, pumped full of oxygen and blood and drugs, its gallant heart restarted and kept going, no matter the pain, no matter the hopelessness of the endeavour, no matter that at a certain point this isn’t living, just a slowed-down, drawn-out, painful and undignified dying. Death has become an aggressively medicalized and bureaucratic process placed in the hands of experts; sometimes banal, sometimes farcical, sometimes painful or undignified. Modern, sanitized death becomes a dirty little secret, almost embarrassing: our language circles around it, we don’t like to name it, cross the road to avoid those recently touched by it and shy away from the physical, squeamish fact of it.
Most people want to die at home; most die in hospital. Most want to be with family; often they are alone or with strangers. During the years of John’s Campaign we have received hundreds of letters and emails from people whose loved one died in pain, died in fear, died neglected, malnourished, dehydrated, restrained. Died alone. Have we lost our way with dying and with death?
* * *
• • •
A beloved friend described the death of his wife at too early an age. She was at home, in their bedroom, and by the end was clearly suffering, but hanging on. My friend summoned their two children, who were not yet teenagers, and told them that their mother needed their permission to leave. They sat beside her and each took one of her hands. And they said in turn: ‘You can go now, Mum.’ And quietly, on the words, she went. She left, and she left them with the gift of herself that they carry still and will always.
Another friend, dying in his forties, tried to get out of his hospital window, as if he could escape death that way.
Sean and I went to see our friend Nick just an hour or so before he died. He knew he was nearly there. The morphine was making him woozy – he thought that the floppy quince blossoms that his wife had put at the end of his bed wer
e ballerinas dancing for him in their pink tutus. He had no religious faith, but he was good-humoured as he lay dying, propped up on the pillow. ‘Nearly too late,’ he quipped when we came in. We read poems to him (I remember Sean chose Tennyson’s ‘Now Sleeps the Crimson Petal’ and I ‘The Sunlight on the Garden’ by Louis MacNeice), and then our time was up. ‘We’ve got to go,’ I said, and he smiled. ‘No, no, it’s me who’s got to go.’ Years later, and I’m still astonished by his wit and grace in the face of his own extinction. Every May, at quince-blossom time, I remember his gallant way of leaving.
Animals perish; only humans die – because we are creatures who are aware of our own mortality. This awareness, which can feel vertiginous, unendurable, is also what gives us selfhood and life shape and meaning. ‘Death destroys a man: the idea of Death saves him,’ wrote E. M. Forster. It is Henry James’s ‘distinguished thing’, Rochefoucauld’s sun that we must not stare at too long lest we go blind with seeing. It makes us and it destroys us.
Dementia has no cure; not yet, anyway. It may take years, it may even take decades, but it is terminal. It comes slowly, creepingly, menacingly. Day by day, week by week, the disease settles in, the sneaky intruder in the house. Doctors, nurses – the whole medical system – are trained to cure people, restoring their patients to the life that was endangered. Hospitals are places of medical intervention, of experts and operating tables and drugs, where death is a failure. In England, more than 50 per cent of deaths take place in hospital, more than 20 per cent in residential and care homes (and only about 8 per cent of people with dementia die in their family home), yet hospitals are not set up to enable people to die well.
But for people who are at the end stages of dementia, death should not be fought against. It’s a kindness. Let them go.
* * *
• • •
Rebecca’s mother died towards the end of January 2013, after a period of chaos and distress. The family were reeling under the successive blows the illness had dealt. It had gone on for fourteen years. They had endured more than was possible to endure.
‘On the morning of her death,’ Rebecca says, ‘I had gone home for a short rest. I was walking the dogs and it was a beautiful day. I said the words out loud: “It’s all right, Mum. You can go now.” I said it. And when the call came, I knew.’
Her face is suffused with tenderness. She pauses for a while, then tells me about her father’s death, which happened exactly one year later. He collapsed: ‘When I got to the house, I found him being resuscitated by the ambulance crew. I said that this was not what he would want. They said: “Are you asking us to stop?” Oh God. It was awful. I rang my brother and he agreed.’ They had learned from experience, and so now she told the paramedics to stop. They stopped. ‘They let him go.’
And so it was over, and years have gone by and it’s a story that she tells, a tragedy. ‘You don’t get over it,’ she says. ‘But you adjust. Of course, they’re not here. But they’re here. In my head. In my heart. I feel their presence and I hear their voice.’
* * *
• • •
Denis East died in the care home which, by the end, he was no longer trying to escape. His running away was over; his violin playing was over. The Denis East Quartet had ceased to exist – although the trio still visited him and played to him. His daughter, a talented musician herself, came and played the cello, although sometimes he became agitated because he couldn’t join in. His grandson played the horn. And Maggie would always make sure he had music on his headphones. He died listening to a Brahms violin sonata. At his funeral, the hymn they sang was ‘The Day Thou Gavest, Lord, is Ended’.
* * *
• • •
The husband of the writer who chose to remain anonymous died peacefully in the home in which he had lived for several months. He had been moved from the dementia unit, where he was distressed by the noise and agitation, to the nursing level, and there had been settled. Then he had a stroke, losing all speech. His wife went to see him every day; they listened to music and she read him Northanger Abbey. His son read him poems by Coleridge. ‘But it was so constricted a life,’ she wrote to me in an email, ‘and I couldn’t want him to have to bear more. So his slipping away one Sunday night was a grief and a relief.’
* * *
• • •
Jenni Dutton speaks of her mother’s death with joy. ‘I was with my mum when she died,’ she says. ‘It was the most wonderful experience of my life. She was awake and it was the middle of the day. We knew she was dying: she could no longer eat. I watched her, holding her hand, talking and singing to her, telling her how wonderful she was, and how beloved. Very gently, she stopped breathing. And then when someone’s dead, they’re just gone. I’ve studied my mother’s face. That tooth making a bulge in her lip. The light reflecting on the back of her throat as her breath left her body. No pain and no fight – just a glorious amount of gloriousness.’
* * *
• • •
William Utermohlen died fifteen months after he left home. ‘The day he died,’ says Pat, ‘I was holding a party for my students. The phone rang. They said that Bill was getting ill; there was something wrong with him. I went straightaway. They took him by ambulance to Charing Cross Hospital, and for a while he seemed to be improving. After I’d been there for some time I asked if I had time to go home and have a shower. And, you know, he promptly died. I think he heard me; he must have heard me. I was very relieved; pleased it was over at last for him. He had been so very unhappy. The grieving took place while he was still alive. He died in 2000 when he could no longer draw, and I wasn’t sorry when he actually died. I think of the two of us, trotting around the museums of the world together. When I miss him, that’s who I’m missing. He was younger than me. He was a quiet man. A very nice, quiet man.’
* * *
• • •
Death can be a friend. Enough is enough. There has been so much time to prepare and to say goodbye. But when at last they go, we want them back: just a few days longer; just for those words we never spoke; a last farewell. To hold their hand and keep them with us a short while more. Don’t go. Please don’t go.
* * *
• • •
My father was one of the lucky few who die at home.
He left us on 9 November 2014. No last words. My mother had said goodnight to him and kissed him. She was in the bathroom cleaning her teeth. His carer was lifting him into a comfortable position on his pillows. He gave a small cough and he died.
We are frail creatures at the last.
The breathing stops and a whole world ends.
BEGINNINGS AGAIN
‘Golden lads and girls all must,/As chimney-sweepers, come to dust.’
When people with dementia die their death is often experienced as both loss and release – both for them, who have been dismantled by the illness and have suffered long enough, and for those who loved and cared for them. We say, They lived beyond their time. We say, It was time. A carer who has spent the last ten years looking after their partner, washing them, feeding them, cleaning up their accidents, weeping over them, recoiling from them, loving them, hating them, bored by the thankless task, trapped by it, exhausted by it, despairing about the lack of reciprocity and their own loss of self, would have to be a saint not to sometimes want them to go, and the long, hard slog to be over. To get a life back.
And then they die and desolation rushes into the spaces carved out by these wretched, unavoidable feelings. Because even though we say that people with dementia are ‘gone’, are ‘husks’, are ‘not the person they used to be’, are the ‘walking dead’, what we discover when they die is that they were after all still alive. They were after all themselves, although they had lost their self. The difference between my father a few weeks before he died, with his smile that only he ever smiled, and his small chuckle that no one else will give again – the difference be
tween that and the man who I saw dead in the small room at the funeral director’s is unquantifiable. People have said to me that there is a spectrum: someone is unequivocally themselves at one end but they gradually slide towards self-loss, so that in a coma, for example, they might be breathing, but they have gone. Nothing remains but the body. A friend of mine had to decide at what point to turn off the machine that was keeping her partner alive: he was in a vegetative state and she had no doubt that it was the only thing to do. But it was a solemn, wrenching decision. To say: this life is over. To say: never more. They will not come again.
And there’s the great mystery of life. A person might have nothing left, no memory, no language, no consciousness that they exist in the world. And yet, in this broken body of theirs, some indelible essence of themselves is lodged.
* * *
• • •
I had been due to go and see my father on the Tuesday, two days after the day on which he died. We knew he didn’t have many weeks left, and I had planned which poems I was going to read to him, and what I wanted to say. To thank him. To tell him how well he’d done. To hold his hand, stroke his soft white hair, say goodbye. I wanted to see him one more time before he died – or perhaps it was more that, as soon as he died, I wanted to see him one more time, because although I had thought I was ready for his death, it turned out of course that I wasn’t. For so many years – most of my life – I had taken him for granted, a modest, clever, kind, honourable, maverick man who didn’t have a mean bone in his body and who cheerfully put his shoulder to life. Just our father. When he died, I stopped taking him for granted. Everything about him became infinitely precious: the way he loved to feed the plain brown birds that came to the bird table in winter; the way he knew how to tie knots and mend china; the way he ate with such deliberation, putting food in small, neat packages on to his fork; the way he took painstaking care over shaving (when I was little, I used to love watching him shave, the rasp of the razor, the line of smooth cheek, just as I used to love watching my mother getting ready to go out, holding loops of beads against her dress, pressing her lipsticked mouth on to a tissue . . . ); his absent-mindedness, his eccentric belief in water-divining and the power of dreams; his ancient moss-green jersey; his polished brown shoes; his particular smell . . .
The Last Ocean Page 21
