This book is a journey through those stages of loss, from the first vague signs of the illness through to advanced, end-of-life dementia, which at its most radical can seem like a ferocious de-creation of the self and an apocalypse of meaning. It asks what dementia means, both for the person who lives with the condition and for those who love them. It looks at both the kindest and the most inhumane forms of professional intervention, and asks how far professionals can ‘care’ for those we care about and how much individuals and families must shoulder a burden whose weight can – and often does – crush lives. It explores dementia from the outside and – as far as it is possible – from the inside as well. It looks at the new and unsettling art that is being made about dementia – which is, I believe, a form of emotional modernism and which can help us imagine what is unimaginable, to find a language for that which is essentially wordless, taking us up to the threshold of darkness. It looks at the grief that is felt on the journey into darkness, both by the person with an illness that brings such desolation and also by those who care for them. And it looks at the aftermath of a life: at death, mourning and the kindness of an ending. It contains the stories of nurses, doctors, scientists, therapists, philosophers, artists – but above all, of people who are living with this disease and those who are accompanying them, bearing the unbearable, becoming the gatekeeper, the memory and the voice. Dementia calls forth what Atul Gawande calls ‘the endurance of the soul’.
My guide has been my father, vigorous at first and then frail, sometimes disappearing from view. He had also been my ghost. Always my ghost.
* * *
• • •
In the early stages – which are perhaps the ones that hold the most agony for the affected individual, or at least I hope so; I hope forgetfulness brings a form of relief – people with dementia can express their feelings. Later, it becomes more and more difficult for them to do so, until at last it is barely possible. What must it be like? Quite often I wake in the small hours of the morning, before light has come, and for a terrifying moment I can’t remember where I am or even who I am. An appalling blank that is followed by a scorching fear. Does this give a glimpse into what it feels like? Or that sense of humiliating befuddlement when one has lost track of everything and is slack and stranded in a muddle of thoughts, no traction and no grip on the world, an object not a subject: is that it?
A few months ago, I was cycling along a canal in the middle of the night; it was very dark and dislocating and eerie. There was duckweed on the water, so the water looked like solid ground while the solid ground wavered and shifted under the thin beam from my bike lamp. Bats like dark rags just above me; voices suddenly heard in the distance and then silence. I was unsafe. Unsafe in myself, small and unstable and swilling with dread. I felt, with a ghastly lurch, that perhaps this too was what someone might feel in the early stages of dementia: everything that was once certain now losing its shape, things looming out of the gloom. But I don’t know, of course. The mind is infinitely mysterious. And if it is hard to imagine the earlier stages, when the person is still articulate, how much harder to understand what it is like to have advanced dementia, a condition beyond language. There’s an existential loneliness and even despair about it: to become one’s own ghost.
For how does the I observe the I that is going, and how can language capture its own disintegration? Talking with people living with dementia, there can be eloquent gaps and slippages in their descriptions of what they are experiencing. When we talk about them – and inevitably, most of the accounts of advanced dementia are external – we turn to metaphor, using language to grope for what lies beyond words. From Dante’s image of a ship lowering its sails as it enters harbour, to comparisons with a deck of cards reshuffled, we try to find ways of comprehending the incomprehensible de-creation of the self. I know that I have variously described my father as a great ship untethered and slipping out to sea, a town whose lights are going out one by one, a bombed city, an ice floe breaking up and becoming smaller and smaller until there is no place left to stand. A friend described it as a manuscript ripped into tiny shreds; another as a precious glass, smashed. It’s striking how often the image of a ship is used – a boat going into the mist; ‘a sailing vessel that is becalmed. And then suddenly there is a breeze. I am sailing again. Then the world has a hold on me again.’
The notion of being at sea conjures both the terror and the mystery; there’s a solemnity and a dignity in this metaphor that sails grandly and kindly over the nasty horrors of the deep. In his harrowing meditation on his mother’s early and cruel dementia, Stammered Songbook, the Belgian writer Erwin Mortier struggles to make meaning and give shape to what is meaningless and shapeless. He conjures up a disease that is not grand but vicious and ratty, sneaking underground, eating away at wires with its sharp yellow teeth – it wrings his mother out ‘like a floorcloth’ and slings her in a corner. It’s a stagnant fen, a tide going out. His mother is a buckled cage with a mechanical songbird rusting away inside, an hourglass of skin and bone, a house that’s slowly collapsing, grammatical ruin, an old valve radio, an owl chick somewhere in the tangle of collapsed beams; one great vanishing point.
Metaphors used about dementia evoke disappearance and dissolution (the sea, the mist, the lowering of the sails), but also corrosion, fracture, queasy slippage and a sinister mutation of the self. They are an attempt to give meaning and shape to what resists both, making a fragile bridge between the known and the unknowable and at the same time signalling the impossibility of the task. The ocean becomes the swamp; the house becomes its basement. Terror lurches into horror, horror is suddenly brightened by hope, a shaft of light through wreckage. Language strains to accommodate a condition that is profoundly connected to the failure of language and the connection of the self to the world. Words fail.
* * *
• • •
But words are not the only way of speaking. On my desk, I have images of the self-portraits by the London-based German-American artist William Utermohlen. I never met him but I have spent many hours talking to his widow, Patricia Utermohlen, and I often return to his paintings to remind myself of the special terror of dementia. Utermohlen was formally diagnosed with Alzheimer’s in 1995 when he was sixty-one, although the hints of his illness may be seen in his ‘Conversation Pieces’ of the early nineties. Unsparingly, he looked at himself and painted himself even as he lost the sense of himself. His self-portraits over the next five years give a sense of excruciating instability, haunting self-loss. In the first, he is recognizably himself, although his thin face has a watchful expression (he was, Patricia tells me, an anxious and disappointed man). But quickly the perspectives flatten, the spatial sense is lost. He is both inside the world of self-loss and observing it. He is inscribing the dementia on to the canvas. The neuropsychologist Professor Seb Crust, who was one of his doctors, remembers how, when they met, Utermohlen skilfully made a sketch, and yet in it both arms were coming out of one shoulder. At the same time the portraits give a unique narrative of the artist’s subjective experience, in which the order and sensory richness of the first give way to a disquieting strangeness, a sensory dislocation in which walls tip, perspectives are destabilized, the table lifts up, objects float and an ill wind blows through the dismantled room in which the artist sits and watches what he is becoming – or unbecoming. Things are torn, broken, crushed, dissolved and lost. The space empties and at last the painter is alone in a void. The face, the self, recedes and disappears in shadows. In the final portrait he is simply a scribbled death-head.
Seen individually, Utermohlen self-portraits are profoundly sad. Seen as a series, they are terrifying in their portrayal of loss over time, suffering over time, the gradual, inevitable stripping away of all that holds him together in the shape of a man. And yet for several years of living with Alzheimer’s, William Utermohlen was at home with his wife and his paintings; he saw friends and remained in the rich flow of life. Above
all, he continued to express himself, putting his mark on the canvas, saying, I am here. To be human is to have a voice – and by voice I mean that which connects our inner and outer worlds, the delicate and miraculous web of communications that ensures we live in community with others, not in solitary confinement with ourselves. There are many different ways to have a voice and to reach out into the world.
Even when memory is gone, language is splintered and lost, recognition has crumbled, and the notion of a self is hard to hold on to, there are ways to find the human being trapped in the wreckage, to hear them and to acknowledge that they are still humans, precious, and one of us.
* * *
• • •
One of my friends died when he was fifty, after a decade of living with a brain tumour. Ten years later, I still dream about him quite often. He’s my night visitor and it’s always a joy to see him; I remember how I’ve missed him. In several recent dreams, we have been jumping on a trampoline together. Sometimes he doesn’t realize that he’s dead but I do and we talk about this. Sometimes I believe he has returned; his deadness is a mistake, a dream itself, or it is out of bounds back there in the waking world. But as far as I know, I’ve never once dreamed of my father. He never visits me. Perhaps this is because I don’t properly believe that he has died. Part of me feels that I can have a second chance and can do it all better this time, see what’s happening to him more swiftly and make it unhappen, turn back the clock that ticked him to his end. ‘Hello, Nic,’ he’ll say, and hold out his hand.
I want to remember my father as he was before his illness, and I do – but the image that most often flashes up in me and takes me unawares is of him in his final months, when I am looking at him through the window, lying propped up on his hospital bed, staring out at the garden he had made and loved. Gone and still here; part of life and banished from it. Shortly after my father died, I launched a campaign with a friend that fights for more compassionate hospital care for those with dementia. Of course, I know that in part I’m trying save my father, who’s beyond rescue. So too, in writing this book, I realize that secretly I ‘write partly to make a confession’, or as the French philosopher Jacques Derrida has it: as soon as you write you are asking for forgiveness.
1. FACING UP
‘I am! yet what I am none cares or knows.’
Sean and I have a house in a comfortable area of north London, where we write our psychological thrillers under the name Nicci French. The Victorian terraced buildings on the tree-lined street are attractive, with well-tended gardens and geraniums in window-boxes. There’s a small green where people throw sticks for their dogs, a playground. There’s a primary school; each weekday morning little children cluster outside its gates, a babble of bright voices. There are restaurants, cafés and shops a few minutes away. And at the far end of the road stands a huge prison, its high walls topped with barbed wire; at its rear are unmarked graves where executed prisoners used to be buried. I sometimes see windowless vans driving in through the gates, or out of them, and quite often at night there are helicopters hovering like giant chirring insects above it, spotlights swinging through darkness. People say they’ve spotted drones around the building as well, dropping drugs or mobile phones. But I can’t see in; I’ve never glimpsed any of the people who are incarcerated there; never heard their voices.
Bad things, terrible things, go on inside this prison, where more than 1,200 men live in overcrowded, squalid, inhumane conditions. Twelve-foot by eight-foot cells built for a single occupant often hold two men, with a badly screened toilet just a few feet from where they eat and sleep. The toilets are often blocked; the sewage leaks; there is rubbish on the floors; cockroaches have a field day; the budget for their meals is not much more than £1.50 a day, like swill for pigs. Drugs are pervasive, especially the new ‘zombie’ drug Spice, which induces a semi-comatose state, enabling the inmates to better endure their time. Gangs are in control. There’s bullying and violence and suicide and a climate of misery and fear. But we outside go on with our comfortable lives, not wanting to think about this institution right next door. These men are out of sight, out of mind, shut away from the world and stripped of their basic rights as humans. Indeed, many people believe that prisoners have forfeited their human rights; they deserve punishment, are not owed anything. In a culture of credits and debits, they are paying their dues. So it’s easy to forget about them: not one of us, after all.
We often feel and act because of a sense of identification: a person is like us or represents a world we are familiar with or aspire to. In some way or other, they feel near to us, intimate, and if they are in danger we have a fierce rescue impulse. Some people are injured, or abused, or go missing, and we care, with a surge of empathy. Some people go missing and we’re indifferent. Some go missing and we don’t even know.
At the end of 1995 and into the start of 1996 I covered the long, grim trial of Rosemary West for the Observer. Frederick and Rosemary West had been an apparently ordinary provincial couple living with their children, getting on with their neighbours, drinking mugs of tea and cooking Sunday roasts, who over a span of sixteen years sexually abused and murdered their own children, and tortured and killed other young women. They were serial killers who treated their victims like living sex aids before burying them in their garden. Fred West killed himself while in prison, so only his wife stood in the dock, in a trial that gripped the country and still has resonance today. For several weeks during that winter, a window was half opened on to a world most of us had never imagined existed, a world of obscenity, degradation and unravelled violence. It was as if a scene from Hieronymous Bosch had been played out over many years in a small terraced house in Gloucester that was abattoir, brothel and Sadeian torture chamber all at once. By the end of the trial, when Rosemary West was convicted of ten counts of murder and given life imprisonment, I felt I had been poisoned and needed to somehow cleanse myself.
But alongside the feeling of horror and foulness – a world turned upside down – there was a less garish but more enduring sense of loss that changed the stories I wanted to write as a journalist and even the way I thought about the world. Several of the young women who got sucked into the black hole of 25 Cromwell Street over the years had disappeared with barely a ripple; some were never reported missing. The Wests usually chose people who were vulnerable and powerless, who had been in care, who were unemployed or rootless and did not belong to a community. They had no safety nets. When these women and girls went missing, they were not missed. There was no frantic search, no nationwide grief, no lament. They were invisible people and when they disappeared they remained invisible and largely unmourned. Only when their bodies were found many years later did they briefly claim our attention.
Some months after the trial ended, I spent several weeks with London prostitutes, sitting in dimly lit and overheated rooms hearing about their lives, stepping out when clients arrived. They were all young, some still teenagers; most of them had been physically or sexually abused; all but one was a crack addict; almost all had been in care of one kind or another – and heartbreakingly, what several said they most wanted to do if they got a chance was to be a foster parent themselves, rescuing kids like themselves; rescuing their younger selves. The street they worked was a stone’s throw from where I live now. It’s since been transformed into an area of corporate cool, but then it was run-down and surrounded by wastelands where the women took their clients if they weren’t lucky enough to have a room. Why hadn’t I noticed them before?
We each live in a tiny pool of light, and around us lies the darkness of our un-seeing. We see what we look for and what we look at. There is an experiment first conducted nearly two decades ago and repeated in various forms since that demonstrates this ‘inattentional blindness’: people are shown a video and asked to keep a silent count of how many times basketball players, three dressed in white and three in black, pass a ball between each other. After about thirty secon
ds, a woman in a gorilla suit enters the rooms, faces the camera and thumps her chest, then walks away. See this video knowingly and it’s dumbfounding that anyone could fail to notice her. But half the viewers miss her: they are busy concentrating on the players and they aren’t looking for her, and so she is invisible.
(I have my own version of this story. One summer holiday, my daughter, aged about three, her elder brother and her cousin were sitting on a jetty, fishing with their makeshift rods. She was between the two of them, and all of a sudden she tipped forward and neatly plopped into the lake. The two boys continued fishing; they only reacted when a fully clothed adult charged past them and jumped into the water.)
We are all trapped by the limits of our mind. It’s not possible to see the world we live in, only minute, shuttered portions of it where the beam of our attention falls. When I was a teenager, I noticed other teenagers. Pregnant, I suddenly saw all the pregnant women; then the babies; and then the world was full of small children and their exhausted parents; full of single mothers . . . Now I see countless people who are frail and scared – but that’s only because I saw my father so frail and so scared.
We can’t see everything, but perhaps we can learn to be more aware of just how blind we are and make some kind of amends. A few years ago, when I was working on a novel called Missing Persons, I spent weeks wandering around London, suddenly seeing what had always been there: the figures under the arches, the people huddled in doorways, in Underground stations, on benches, in makeshift tents, pushing supermarket trolleys filled with plastic bags of tatty possessions, holding out cardboard signs saying ‘Help Me’, old beyond their years, faces burnt by sun and wind, matted hair, thick beards, trying to meet the eyes of those who pass them – who are trying very hard not to meet their eyes, who are making a wide circle to avoid them. Walking through a grim underpass in a big city, I see fliers posted on columns: ‘When did you last see a homeless person?’ And further on, the response: ‘The more you see, the less you see.’ The homeless and the dispossessed, who have fallen through every safety net, remind us of what happens when luck fails. Best not to look: not one of us, after all.
The Last Ocean Page 2