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Copyright © 2019 by Nicci Gerrard
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First published as What Dementia Teaches Us about Love in Great Britain by Allen Lane, an imprint of Penguin Random House UK.
Excerpt from “The Old Fools” from The Complete Poems of Philip Larkin, edited by Archie Burnett. Copyright © 2012 by The Estate of Philip Larkin. Reprinted by permission of Farrar, Straus and Giroux and Faber and Faber Ltd.
Excerpt from “Apple Blossom” from Collected Poems by Louis MacNeice. Copyright © Estate of Louis MacNeice, reprinted by permission of David Higham.
ISBN 9780525521969 (hardcover)
ISBN 9780525521976 (ebook)
Version_1
To John Gerrard: Letting Go
(And to Patricia Gerrard, Jackie Gerrard-Reis, Tim Gerrard,Katie Jackson: with gratitude and enduring love)
‘Abyss has no Biographer’
– Emily Dickinson
‘For the next ocean is the first ocean
And the last ocean is the first ocean’
– ‘Apple Blossom’, Louis MacNeice
CONTENTS
Title Page
Copyright
Dedication
Epigraph
Beginnings
1. Facing Up
2. Getting Older
3. The Brain, the Mind and the Self
4. Memory and Forgetting
5. The Diagnosis
6. Shame
7. The Carers
8. Connecting through the Arts
9. Home
10. The Later Stages
11. Hospitals
12. At the End
13. Saying Goodbye
14. Death
Beginnings Again
Notes on Sources
Bibliography
Acknowledgements
About the Author
BEGINNINGS
‘O the mind, mind has mountains; cliffs of fall
Frightful, sheer, no-man-fathomed . . .’
The year before my father died, he came with us to Sweden for the summer. He had been living with his dementia for over ten years by then, and – mildly, sweetly, uncomplainingly – he was gradually disappearing, memories falling away, words going, recognition fading, in the great unravelling. But he was very happy on that holiday. He was a man who had a deep love for the natural world and felt at home in it; he knew the names of English birds and insects, wildflowers and trees. When I was a child, I remember him taking me to listen to the dawn chorus in the woods near our house. Standing under the canopy of trees in the bright wash of sound, he would tell me which song was the mistle thrush and which the blackbird. At least, I think I remember this, but perhaps I make it up as a story to tell myself when I’m sad.
In Sweden, he picked wild mushrooms in the forest, went to a joyful crayfish party where he drank aquavit and wore a garland in his white hair, sat with a palette of watercolours looking out at the meadow although his paintbrush never quite made it to the paper. And one evening, we took him to have a sauna – he loved saunas because they reminded him of the time he had spent in Finland as a carefree young man. Afterwards, we helped him into the lake. It was a beautiful, soft dusk; in the fugitive light, the trees were massed shapes and there was a moon shining on the water. I remember the stillness, just the occasional lap of water against the jetty.
My father, old and frail, swam out a few yards and then he started to sing. It was a song I’d never heard before, have never heard since. He was swimming in small circles and singing to himself. He seemed quite contented, happy even, but at the same time it was the loneliest sight: as if there was no one left in the world, just him in the half-darkness and brimming silence, with the lake and the trees and the moon and scattered stars.
The edges of the self are soft; the boundaries of the self are thin and porous. In that moment, I could believe that my father and the world were one; it was pouring into him, and he was emptying out into it. His self – bashed about by the years, picked apart by his dementia – was, in this moment of kindness, beyond language, consciousness and fear, lost and contained in the multiplicity of things and at home in the vast wonder of life.
Or that is what I tell myself now, three years later, trying to make sense of an illness that has the power to dismantle the self, that comes like a robber in the night to sneak into a house built up over a lifetime, to wreck and plunder and despoil it, sniggering behind the broken doors. The following February my father went into hospital with leg ulcers that were slow to heal. There were strict visiting hours and then, with an outbreak of norovirus, a virtual lockdown of the ward, which meant that for days on end he was alone: nobody to hold his hand, speak his name, tell him he was loved; nobody to keep him tethered to the world. His leg ulcers were healed, but away from the home he loved, stripped of familiar routines and surrounded by strangers and machines, he swiftly lost his bearings and his fragile hold upon his self. There is a great chasm between care and ‘care’, and my father fell into it.
When he at last came home, he was a ghost of himself, skeletal, immobile, inarticulate and lost. No more saunas for him, no more forests and lakes and flowers in his hair; he wasn’t in the twilight of the illness now but in its gathering dark. After several months of radically slowed-down dying, as autumn turned to winter and with a hard cold wind blowing, he left us at last. But against the memories of his terrible last months – the small room downstairs where he lay in a hospital bed waiting and waiting for nothing while the birds he loved came to the bird table outside his window; the routine of washing, feeding, lifting; the nurses and doctors and carers and the whole bureaucracy of illness and death; the sense of a mind dying and a body crumbling and not a damn thing to be done about it – against this stifling, drawn-out ending, I set the memory of my father in a Swedish lake, in peace, in soft dusk and that mysterious fusion of the self with the world.
I used to say that we are made of our memories, but what happens when memories are lost? Who are we then? If we are out of our mind, where have we gone? If we have lost the plot, what happens to the story we are in? Even at the bitter end, I never thought my father wasn’t himself – although at the same time I felt he had lost himself. He was gone but he remained; he was absent and yet powerfully present. There was something that endured beyond language and recollection, a trace perhaps, like grooves that life had worn into him the way a river carves into rock. He still had his sweetness; his past lived on in his smile, his frown, the way he raised his bushy silver eyebrows. It lived on in us. He might not have recognized us, but we could recognize him. I don’t know what the word for this indelible essence is – once, it would have been ‘soul’.
Civilization, control and safety form a crust over deep waters. In all of us, often pushed into the corner of our minds, is the uneasy awareness of how frail our hold over ourselves is, how precarious a grip we have on our own minds and bodies. Dementia – all the many and often harrowing forms of dementia – makes us ask what is it to be a self, to be human.
* * *
• • •
It is often called the plague of our time; it is the ‘disease
of the century’.
In 2015, an estimated 850,000 people in the UK were living with a form of dementia; the same number was thought to be undiagnosed. As the population ages, it is estimated this figure will increase to over 1 million by 2021 and 2 million by 2051. In the US, the estimate in 2017 was 5.5 million people. According to the World Health Organization, there are around 47 million people living with dementia in the world. Someone develops dementia every three seconds.
People talk of dementia as if it were a time bomb. In truth, the bomb went off long ago, but quietly, privately, out of sight: a hidden demolition job. Men and women who live with dementia are often missing people – forgotten and denied by a society that values independence, prosperity, youth and success and turns away from vulnerability. They are the reminders that we get old, we decay; death comes to us all in the end. Of all the illnesses, it is the one we now most fear. It is ‘the story of suffering’ – and like suffering, it lasts.
And this suffering spreads, from the individual, to those who care for them and about them, to their community, to the country as a whole. Dementia is, as one doctor said to me, ‘profoundly disrespectful of patients, carers, health systems, social care . . . it doesn’t fit into the structures we’ve created’. There can be no other illness that’s so defined by its impact not just on those who live with it but on those around them. Its meanings are physiological, psychological, social, economic, political and philosophical. Its costs are unquantifiable – I don’t mean the financial costs, though these are huge (the Alzheimer’s Society estimates that, in the UK alone, the cost is £26 billion and, in the world, $818 billion – and steadily rising, set to teach $1 trillion by 2018 – more than the cost of cancer, stroke and heart disease combined), but the costs in human terms: the shame, confusion, fear, sorrow, guilt, loneliness. It provokes profound moral questions about the society in which we live, about the values we hold and about the meaning of life itself.
At the same time, we are the first generation to have really considered it mindfully. When I was a child, it was scarcely visible and rarely acknowledged. My grandfather on my mother’s side of the family had dementia, as did my grandmother on my father’s. Although I was aware of this, it was only in a muted way: they became like figures who had once been vivid in my life but were now being gradually rubbed out. I was perhaps embarrassed by them, these people who used to be figures of authority and now were so helpless, and I was also a bit queasy about the bodily nature of the disease, but I didn’t think about what it was like for them or let myself imagine the tragedy that was being played out, sometimes in the form of a nasty farce. It was a stigma, a source of shame, fear and denial, and it went on behind closed doors. The D word.
We are aware of it now in a way that is radically different from twenty or thirty years ago and this awareness brings social, political and moral responsibility. Now we can see that which was previously hidden. In the seventies, there were about 300,000 people with dementia in the UK, spread thinly across the country. Today, there are three times that number. In twenty-five years’ time, there will be something like 1.7 million. In the US, the incidence of death from Alzheimer’s alone increased 55 per cent in the fifteen years between 1999 and 2014. Go into a hospital ward, even a general one, and several or most of the beds are occupied by people with dementia. Go into a residential home for the elderly. Look at the obituaries. (When I was thinking about this book, I began a list of all the well-known people who were dying with the illness, but I abandoned it: there were too many and they kept on coming; I couldn’t keep up.) Read the news stories, the uplifting ones and the ones that make you want to howl in sorrow. I know scarcely anyone who doesn’t have some kind of intimate connection to the disease. It’s all around us, in our families and in our genes; perhaps in our own futures (approximately one out of six people over eighty get dementia, and the older the age the higher the chance; it’s like there’s a sniper in the garden). If it’s not you or me, it’s someone we love.
We can no longer just talk about ‘them’ – it’s ‘us’ now, and how we face up to this challenge becomes a question of our collective humanity. For in an age where autonomy and agency are so highly valued, there are questions we urgently need to ask: what do we owe others and what do we owe ourselves? Who matters? Why do some people seem to matter less than others? Why do some people become ignored, invisible, neglected, abandoned? What is it to be human, and what is it to act in a human way? The word ‘we’ is used persistently and easily. It speaks of community, democracy, collaboration. It lays claim to a collective voice, as if we were, as the politicians like to say, all in this together. In the same boat – well, yes, but some people are in the first-class cabins with a sea view and cocktails at dinner, others are down in the hold, and still others are not seen at all. The light doesn’t fall on them; we don’t even realize they are on board with us. And quite a few have fallen into the cold water and they’re drowning out there in the darkness, while the band plays on.
Those we do not see. Those we do not care about. Those we do not mourn. Those we neglect to the point of death . . . If my father had been an important man, I think he might have been treated differently at his time of greatest need – and of course, he was important, but only to those people who knew and loved him and whose lives were bound up with his. A sense of the preciousness of every life should be designed into a system, a society, so that we do not need to feel identification in order to rescue each other. We all have an obligation to each other – even to people we are hostile to – because the world is ‘given to us in common’, to share and to pass on. There is no I without a you, no me without us. We are at each other’s mercy in the end, and we should have a passionate, unequivocal commitment to everyone, to anyone – honouring them not out of love but out of common humanity.
In the last few years, I have been thinking a great deal about the meaning of rules and of boundaries: the walls of institutions on which rules – thou shalt not – are posted; the fences around gardens, the doors (that can be shut fast or open), the borders (that are often more porous than I understood), the minds (that are also embodied); the bodies (that both contain us and yet expose us to the world), the I and the we, the us and the them, self and other. How much are we connected to each other and how much are we separated? How far are we private, discrete people and how far part of a public, communal life? How much can we – should we – rely on others and be relied on in our turn? What are our responsibilities to the world in which we live, and then what are our responsibilities to our self?
As a mother, I sometimes have difficulty in knowing where my children end and I begin (even though they are all adults now and I really should have learned). I can feel to myself too much like an open wound and I don’t know how to say no. At the same time, I’m a lifelong feminist who believes wholeheartedly in the right to have a life that belongs, at least in part, to oneself. Attachment and responsibility and, above all, love, continually threaten self-belonging. The claustrophobia I can sometimes feel at my responsibilities is a fear of self-loss. We all need boundaries to possess a self, and we all need to breach those boundaries in order to live in a world of relationships and connections – for what other world is there? It’s not a balancing act, quivering and tense on a tightrope hung between two opposing imperatives, but a continuing flux: advancing and retreating; giving and withholding, reaching out into the world and retreating back from it.
Dementia undoes this delicate and endless negotiation with the world, this tidal shift of reciprocity. Bit by bit, those living with it become helpless, at the mercy of others and reliant on the kindness of people who are close to them and of strangers. It is hardly bearable to think how lonely and beyond reach they must sometimes feel. A few weeks ago, I was in a care home with Sean (my husband and writing partner), visiting one of his relatives who has dementia. As we were leaving, an old woman stumbled towards us; she was wearing a cheery red cardigan and beads and her s
houlder-length hair was white; on her face was a look of anguish. I stopped and she grasped my hands and her body bent in grief. ‘Hymns of comfort,’ she said. ‘Hymns of comfort.’ I looked around for someone to help her. I told her they were coming soon. ‘No one is coming,’ she said. ‘No one is here. Hymns of comfort.’ A member of staff arrived and took the buckled figure from me. She said – as if this made it all right – that the woman was always behaving like this, and she led her away. ‘Hymns of comfort.’ What should I have done? What are we doing?
To explore dementia’s meaning and its excruciating losses is to think about how far we as a society and as individuals are responsible for the suffering of others: what we owe each other, what we care about, what matters in this world we all share. Who matters.
* * *
• • •
At the word ‘dementia’, many people jump-cut forward to the imagined end. They see themselves or the person they love stripped of all memory and capacity, lying befuddled in a bed; they see themselves as aged babies (although the comparison between old people at the end of their life with small children is cruelly inappropriate), animals, vegetables, objects that other people handle or neglect. Many people emphatically state their determination to end their life well before they get to this end; some people do so. Mary Warnock famously argued for a licence to ‘put people down’, and while this sounds harsh and was controversial, there is an argument that we put animals down when their life has become one of intolerable suffering but we do not extend the same kindness to humans who have to endure beyond the limits of endurance. What we wouldn’t do to a dog we do to ourselves.
But there are many stages in dementia, as there are in grief – although as with grief these stages are rarely clear and steady. The diagnosis is not a sentence but the start of a process that can take years, even decades, and that can contain hope and kindness and adventure as well as fear and sorrow and heart-wrenching loss.
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