Every life is precious: so easy to think and to say, much harder to feel and act upon. What if the person who suffers is different? What if they come from far away, in rickety boats? What if they are lying in a doorway in a rank sleeping bag with a can of white cider in their hand and an ugly, loyal dog beside them?
And what if they are old, forgetful, decrepit, adrift and seem like creatures from a world we don’t want to think about? For many decades, those living with dementia have also been missing people in our society. Sometimes they have withdrawn (or have been withdrawn) from the public sphere and are out of sight, in hospitals, in care homes, behind closed doors. Sometimes they are more existentially invisible. Because they are helpless, at the mercy of others, a kind of erasure of social meaning turns them into forlorn and ghostly figures. They are there but not really there, not part of the thick flow of life. The light does not fall on them.
I remember being in a restaurant when my father was in the early stages of his great decline, and he was having difficulty with his order, on a loop of indecision. The young waitress was smirking and rolling her eyes at us, as if we were in on the great joke. I followed her when she left the table and gave her a dressing-down; she looked so bewildered and upset that I was ashamed of myself. She wasn’t cruel; she just didn’t know, didn’t understand. She thought she was in a different kind of play – a light-hearted farce, not a tragic one.
And I’ve lost count of the times that I’ve witnessed people being impatient, maybe a bit contemptuous, of men and women in public spaces who are old and confused and slowing things up (of the times I’ve been like this myself). Or the occasions that I’ve witnessed good, hard-working doctors and nurses talking about and across their frail, confused patients rather than to them; snapping on plastic gloves before they touch them, without explanation, as if their bodies were contaminated objects; looking at computer screens rather than at the vulnerable and often anxious person who’s in an unfamiliar situation and needs their help; just seeming a bit in a hurry or a bit indifferent, other things on their mind. I will always be grateful to one of my father’s doctors, a melancholy and exhausted-looking man from Eastern Europe whose manner was invariably one of tender respect. I’ve no idea what he was like as a clinician – but my father was at a point in his life when he no longer needed a gifted clinician but a sympathetic human being who would ask his permission to sit on the bed and take his hand, talk to him deferentially, address him formally by his title (Doctor), recognize that, for all his losses, he remained a subject, an I.
As with so many other groups of the forgotten, it is easier to ignore those living with dementia if they are subtly dehumanized, made less. It is built into the way we talk about them, the stock phrases we use without stopping to consider their implications: they are not the person they used to be, we say; they are not all there and they are no longer themselves. They are shadows of themselves. As the loss deepens, the language becomes starker: we say that they are gone, minds become sieves. We say that they have lost their mind (where is it, then?), or are out of their mind (where are they, then?). And perhaps we say that they are mindless: the living dead.
Not one of us.
We are all diminished if we think like this.
* * *
• • •
Several years ago, one of my daughters fell off a horse and was knocked unconscious. She was taken by ambulance to the nearby hospital, where she was kept in overnight because not only could she not remember the accident, nor the weeks preceding it, neither could she make new memories. She was on a loop: every time we told her what had happened, she would express surprise in identical words, with identical intonations, with the exact same expression of comic disbelief – and then a few minutes later ask for an explanation again. The ward was a general orthopaedic one, but except for my daughter and another woman who was calmly reading a book, her glasses balanced on the end of her nose, every other patient was old and had dementia. My daughter’s condition in some ways mimicked theirs – she was unable to remember – but she was going to recover her memories; they were not.
Since then, I’ve visited many hospitals and become more used to what they are like, but at the time I was very shocked, and also scared to be leaving my daughter there. The air felt thick with distress, helplessness and fear. Several of the women were lying slack and unresponsive, mouths open; they looked sick and absent from the world. One woman was writhing on her bed and screaming the same words over and over: ‘No, no, please don’t. Teacher, don’t.’ She had her hands on her stomach: ‘It’s down there,’ she cried. I imagine she was perhaps reliving some kind of trauma: while most memories had been washed away, this ugly one remained, repeated, a nightmare she couldn’t wake up from because she was awake and buried in herself. It looked like a kind of fresh hell to me. The nurses were extraordinarily patient and respectful, but there was no way that they could respond to everyone, and probably they had become used to it. In a ward of people with dementia, this amount of distress and chaos was normal, like a kind of background noise.
Not long ago, I visited a ward where one of the patients was in a pitiful state. She could barely speak but she knew she wanted to go home; had to go home. She kept trying to get out of bed, to escape back to where she felt safe and cherished, which was probably somewhere long ago. A young doctor, stopping by on her ward round, explained why they were not going to be able to let her leave, however much she wanted to; it was for her own good. The woman wept; her face was wet with tears and she could not be comforted.
Or another ward at another time: a woman lay immobile, only her bony hands fluttering; so thin her frame barely disturbed the sheets. On the table next to her was a photograph in which a radiant girl from the distant past stands on a beach, ankle deep in the waves, holding the hand of a man and smiling. It was painfully hard to reconcile these two selves – the woman in the bed and the one on the beach, the one in love with the future before her and the other approaching death.
Or in a care home visiting the mother of a friend, where a tall, skinny, snaggle-toothed woman came up to me and gripped my hand hard, clearly upset and trying to tell me something, her eyes glittering with the need to communicate. But I couldn’t make out a syllable; she was talking in nobody’s language. Words that weren’t words poured from her. Nobody could understand her: there’s loneliness.
* * *
• • •
The culture around dementia is changing; the illness that used to be hidden away is now recognized and talked about, the subject of political initiatives, international research, global campaigns. No country and no community can escape the disease and almost every country and community has found ways of ameliorating the lives of those who live with it. There are hundreds and thousands of charities throughout the world, some huge and far-reaching like the Alzheimer’s Society, with a presence in dozens of countries, and some small and specific, like the tiny, local one I am patron of, the Creative Dementia Arts Network, which focuses on the power of creative arts in dementia.
There are imaginative new ways of approaching the illness. In countries including the Netherlands and Denmark there are dementia villages, places that enable their residents to preserve their sense of autonomy. In the US, the collaborative Dementia Friendly Initiative has been set up to foster nationwide awareness and dementia-friendliness. In Japan – whose ageing population means that about 5 million people live with dementia, a figure set to rise to 7 million by 2025 – there are a host of recent devices to monitor and care for those who are frail and confused (a teapot sensor, for instance, that transmits an alert to a family member if tea hasn’t been made for some time; a sticker with a QR code in case that person is lost, for lostness is an increasing problem; robots that will fetch food or provide comfort).
In Denmark, most municipalities have set up activity centres for the old to reduce the risk of inactivity. In Dresden, a nursing home has re-created an entire
historical era (of communist East Germany) in order to reactivate memories and bring vitality to the lives of their elderly residents. In the UK (as in many other countries), there’s dementia training in hospitals and out of them, supermarkets where all the staff wear dementia-friendly badges, whole towns that are aiming to be ‘dementia friendly’. There are partnerships between nurseries and old people’s homes; collaborations between residential homes and schools; exchange programmes in which university students live rent free in a nursing home in return for a set number of hours a month acting as neighbours to the often isolated residents; intergenerational housing developments . . .
And there seem to be conferences for every day of the year at which people from all over the world come together to pool knowledge and share ideas. We know the figures, the scarifying percentages, the graphs with lines that rise like a jagged cliff, up and away into oblivion. Hollywood films, bestselling memoirs, documentaries, plays, sobering headlines, optimistic ones. The word ‘dementia’ has almost become a prefix. When I went to the 2017 UK Dementia Congress, held at a racecourse, the vast hall was full of stands advertising dementia mattresses, dementia decorations (images of flowing water and bright flowers), dementia clocks, publications, projects, food, care homes, hoists . . . It seems ridiculous to say that people with dementia are like missing persons.
And yet: old men wandering down the corridors with their pyjamas round their ankles. Old women weeping and unconsoled. People lashing out at doctors and nurses. Patients called ‘bed-blockers’ or, in the US, ‘GOMERs’ (Get Out of My Emergency Room), and the dedicated healthcare staff doing their best not to see them as objects, burdens, statistics and problems, so that someone crying out, ‘Help me! Help Me!’ is just irritating, their words of agony mere verbal tics.
Each year, news stories reveal the neglect and abuse that goes on behind closed doors – because to be a professional carer is a woefully undervalued and underpaid occupation, and if someone can’t remember they can’t tell tales; and because as a culture we have infantilized and even dehumanized the old, frail and cognitively impaired.
Dementia can bring soul-sickness and despair. In April of 2017, a ninety-five-year-old man was spared a prison sentence for trying to bludgeon his beloved eighty-eight-year-old wife (‘the most beautiful woman in the world’) to death with a lump hammer and a ceramic pan after she repeatedly begged him to kill her. She had ‘fragile’ mental health and he was her carer, resolutely refusing assistance from social services. She wanted him to kill her before she had to go into hospital or a home, ‘And I haven’t managed to,’ he said to the police officers who came to their home, ‘and now I have just increased her suffering . . . I would happily be a murderer. Please tell me I killed her.’
To want to die rather than be dependent and helpless, in a home away from a marriage of sixty-five years; to try to kill the person you love the most because their future seems mere torment: what does this say about our culture? If a person ceases to be a moral agent, in control of their lives, if they cease to have self-consciousness and rationality, a narrative sense of themselves, does that mean that they are less of a person and their life less valuable? What is it to be alive, after all? Dementia is one of those disorders that ‘seriously jeopardizes the faculties we ordinarily define as uniquely human: memory, personality, recognition, awareness, the capacity to love, even a sense of hope. The brain, the mind, the spirit, and the will . . . which constitute the central locus of humanity, are affected.’ What does it mean for individuals to live ‘under conditions that place them outside the usual criteria used to describe humanness’?
In her scorching memoir, Keeper, about the two years she lived with her mother-in-law and her rapidly worsening Alzheimer’s disease, Andrea Gillies asks, ‘What it is that dementia takes away?’ And she answers herself: ‘Everything; every last thing we reassure ourselves that nothing could take away from us.’ It’s the dementia abyss, into which meaning is sucked.
* * *
• • •
The day after her riding accident, we collected our daughter from hospital. Her ability to form new memories was returning, but she had no memory of the night she had spent among all the women who had been calling out for help, shouting, swearing, crying. And I too soon forgot about that shadowy world of distress and loss. I closed the door on it, for a while.
2. GETTING OLDER
‘Oldness has come . . . the heart is forgetful’
If you are lucky enough for life to take its expected course, then ‘you will be old for longer than you were ever young’.
The world’s population is ageing. According to a UN report, the number of people over sixty is projected to grow by 56 per cent between 2015 and 2030, from 901 million to 1.4 billion; by 2050, the global population of older people is projected to be double the size it was in 2015, reaching 2.1 billion. The global number of people over eighty – the so-called ‘oldest-old’ – is growing even faster overall: in 2015, there were 125 million people over eighty; in 2050, it is projected there will be 434 million. Crucially, the number of older people is growing faster than the numbers of people in any other age group: in other words, the share of older people in the total population is swiftly increasing. By 2050, one in five people will be over sixty; in high-income countries, where the pace of population ageing is rapid, the percentage is already much higher than this (33 per cent in Japan, for instance). In the UK (where life expectancy has actually fallen in the last three years), there were just fewer than 15,000 centenarians in 2016, while life expectancy for a baby boy was 79.2 years, and for a baby girl 82.9 years. It used to be that a man or woman could expect a handful of years after they retired; now it’s maybe fifteen or twenty, almost a quarter of an average life span. There’s an argument that old age should be redefined, in favour of ‘prospective age’, when the remaining life expectancy falls below fifteen years. Sixty (speaking as someone who nearly is) doesn’t have the same meaning it used to have; seventy barely counts as old.
But although life expectancy is so much higher and old age has become a hefty slice in the pie chart of our lives however it is measured, it doesn’t seem that we’ve got used to it, or welcomed it, or found a way to accommodate the shape of our lives to it. It’s like the material left over at the end that we – individually and as a society – don’t know what to do with. In the US, poverty among pensioners stands at over 20 per cent (in Australia it is around a startling 35 per cent) and many Americans live in fear of retiring poor. In the UK, about 1.7 million pensioners are living in poverty, and a quarter of older households live in non-decent housing. What’s more, according to a recent survey, more than three quarters of old people feel lonely; two fifths of those over seventy-five say that television is their main company.
For some (those who have money and health, family and friends, good fortune), old age can be a time of great happiness. For others, it is scary and desolating, a bitter end to a long life. How do we fund the extra years? How do we better care for those who are old and have health problems? How do we rebalance society so that everyone – the young, the middle-aged, the elderly, the very old – can have a purpose and can flourish? And how long will it take before being old is not in some strange way a bit humiliating, a bit of a failure, something of a disgrace?
* * *
• • •
Several years ago I was in a large department store, running late, looking for things I couldn’t find, hot and feeling a bit frazzled and itchy and out of sorts. As I was hastening along an aisle, a woman came hastening towards me. She was quite a bit older than I was, scrawny, and looked distressed and in a state of substantial disarray. As I drew closer I saw her shirt was wrongly buttoned. I put up a hand to prevent her bumping into me, and she put up a hand as well, smiling anxiously back at me. I stopped. She stopped. We stared at each other with a kind of pity. And with a sudden rush of mortification, I understood that she was me. I was looking at myself in
a mirror. Usually, we prepare ourselves for our reflection. Here, I was caught unawares and my self-image shattered and lay in pieces around me. I stood face to face with the self that others see.
Was I that tired and shambolic? Was I that old? That woman in the mirror wasn’t me. It never is.
* * *
• • •
That moment comes back to me when I’m on an Underground train. It is morning and crowded, with no spare seats. I stand in the aisle, put in my earplugs, turn on my music, tune out.
Then all of a sudden a polite young man is rising from his seat. He gestures to me, offering his place.
I stare at him wildly. I look around at the other passengers who are standing – surely lots of them are older than me. That woman with grey hair and a creased face: she must be a decade ahead of me. Perhaps he means her. But no, it’s me he is making way for.
I shake my head and thank him but tell him I am getting off at the next station – which I wasn’t, but of course then have to, hot-faced with the sense of my own absurdity. When the next train arrives it too is crowded so I stand next to the door, my face averted so no one can see me and kindly offer me their seat.
I speak to a friend of my age about the experience (swapping those consoling tales of middle-age humiliations) and she says yes, oh my god yes, she was offered a seat recently and was so agitated that she sat plump down on it and burst into tears. Like me, she insisted that there were lots of other people standing who were years – no, decades – older than her.
The Last Ocean Page 3