The Last Ocean

by Nicci Gerrard

  The researchers found that the test monkeys, upon being released into a group of ordinary monkeys, ‘usually go into a state of emotional shock, characterized by . . . autistic self-clutching and rocking’. Harlow noted, ‘One of six monkeys isolated for three months refused to eat after release and died five days later.’ After several weeks in the company of other monkeys, most of them adjusted – but not those who had been isolated for longer periods. ‘Twelve months of isolation almost obliterated the animals socially,’ Harlow wrote. They became permanently withdrawn, and they lived as outcasts – regularly set upon, as if inviting abuse.

  These are monkeys, of course, not people, and they are babies, not adults. But Gawande believes that what is happening inside American supermax facilities amounts to a similar kind of experiment on adult humans, and we know enough by now to recognize this kind of social deprivation as a cruel, and cruelly effective, kind of torture: it sends many people out of their minds.

  There is confirmation of this experiment inside British prisons, where a combination of harsh sentencing policies and an ageing population mean that they have become the largest provider of residential care for frail, elderly people. Because of multiple factors, including lifestyle, availability of drugs and prolonged social isolation, prisoners age much more quickly than other people – they are about fifteen years ahead of the rest of the population, old at sixty-five. Cognitive impairment comes earlier and largely goes undiagnosed and uncared for. Dementia flourishes, unchecked.

  In many hospitals, places of healing and rescue, there is an inevitable social isolation that is dangerous for a person whose grip upon the world is already fragile. Put someone with dementia in hospital for a few weeks, wake them at six in the morning with food they don’t like, call them by a name they don’t recognize (or ‘dear’ or ‘love’ or ‘we’) or don’t speak to them much at all, rattle past them with trolleys, push pills into their mouth, rush them in a wheelchair down an endless windowless corridor, wrap tourniquets round their arms, put needles into their skin, stand at the bottom of their bed with several other strangers in white coats or green scrubs and stare at them and write things down with a frown, take away everything that is familiar to them, pull the props of routine from under them, put them in a nappy just in case, deprive them of the people who care for them and understand their needs and speak their language – and they will suffer. Suffer and deteriorate and fall away from their old self and very often never recover. In the UK, one in three people with dementia who go into hospital from home never return home.

  In the few weeks after we launched John’s Campaign we received hundreds and thousands of messages from carers saying: This happened to us too, to my father, mother, husband, wife, partner, friend. The stories that people have shared from all over the world, and the community of suffering and of goodness they reveal, ring multiple variations on the same theme: their spouses, their parents, were broken, often beyond repair, by their stay in hospital. The eighty-four-year-old wife who had to travel by taxi to visit her husband for the two-hour slot and who wasn’t allowed to stay for Christmas dinner; the son battling to keep his frail mother out of hospital after his demented father died there; the patient who lost 30 kilos in six weeks; the daughter whose father was in hospital for fourteen weeks (‘four bare walls and a sink’), where ‘the plug was pulled’ on his life. This life was wrecked; this heartbreak was played out in the very place that was meant to rescue them. The nurses and doctors and hospital staff are almost always diligent, clever and kind – and working for their patients beyond what duty requires. But they cannot possibly give the patient with dementia what they need, which is that intimate connection to the outside world. Stories poured in, full of anger, guilt, powerlessness and loss, countered by ones of encouragement, optimism and advice, and they are still coming.

  At the Tavistock Centre, Claire Kent talked of the existential loneliness people can feel while in hospital: ‘It’s like being by yourself in the dark,’ she said. ‘It must feel a bit like dying, something you have to do alone.’ All the things that keep a person tethered to the life they love may fray and break.

  We started the campaign in a kitchen, two middle-aged women saying: It shouldn’t have to be like this. My father was a few weeks dead and we had only just had his funeral. Julia’s mother, June, is in her nineties, with dementia, often chaotic, angry and scared; Julia has always been determined that, should her mother go into hospital, she would accompany her. I find it hard to remember the first months of the campaign with any clarity. I was in a state of distress and also a bit dazed. (I have a vague memory of going on Woman’s Hour at the time to talk about the novel I’d written, The Twilight Hour, which is about a very old woman who is looking back at her life as she moves towards death. I have a recollection of speaking very fast in a strained, emotional voice; everything meant too much; everything was charged with significance.)

  I said to someone (actually, I probably said to lots and lots of people, collaring them like a harrowed Ancient Mariner) shortly after my father died that now we could recover him: remember him as he was before the illness took hold of him. But with the campaign I see that I was literally trying to recover him. By changing the culture of hospitals, so that the confused and frail didn’t go there without their familiars, then I could help him. I was trying to be a saviour; I was trying to atone. I was insomniac, not eating much, fizzing with energy, a bit obsessive. I was insensitive to the feelings of my adored siblings. I wrote an impassioned piece in the Observer (the paper where I had worked for many years and which became the hub for the campaign, and without which we could have done nothing). I went on the Andrew Marr Show and leaned towards him and waved my hands in the air, while David Cameron, still Prime Minister then, looked on. I went on radio programmes, where it would take a single introductory question to set me off on my emotional tirade. I talked and I wrote about the hidden tragedies that were unfolding in hospital wards up and down the country. We visited the Alzheimer’s Society, where I spoke of our campaign as a small, unencumbered rocket. I felt like a rocket, whooshing about on a backthrust of loss and hope. I cycled everywhere, helmet-less, soaked by the rain, masochistic, self-punitive. We went to the House of Commons to talk to ministers. We sat in lots of offices, and kind men and women listened and some of them helped. Looking back at the pieces I wrote over the first few months of the campaign, I see they are full of words like ‘kindness’, ‘compassion’, ‘moral decency’, ‘loss’, ‘tragedy’, ‘hope’.

  Luckily for sore, wonky me, there was Julia, pragmatic and steadfast. And luckily for us, there were the carers, the nurses, the doctors, the organizers, the people who worked for charities, the managers, the doers and the thinkers who showed us the way to go, introduced us to the right people, advised us, encouraged us, joined us. ‘Be kind, for everyone you meet is fighting a hard battle.’ Over that year, I became freshly aware both of this great battle we fight and of the kindness of people that runs like an underground river beneath the noise and hurtle of public events. And yet change – even change from which everyone benefits – is hard and slow. I had an image in my mind of a door: pulled open from the inside by the professionals; pushed at from the outside by the carers. Take those doors off their hinges. Let us in. ‘Us’ is the crucial word, and ‘we’. Too many people battle and suffer alone.

  In the first year of the campaign we learned what we should have known anyway: there is no magic key. We expected resistance from hospitals and experts and were ready to counter them. Costs: there aren’t any, unless hospitals choose, for instance, to put a reclining chair by the bed or subsidize parking, while the benefits are vast. Health and safety: they do it in children’s wards and in other countries. The carers’ need for respite: this is a right, not a duty; carers may be in great need of respite themselves and should not be made to feel a moral obligation to stay with the patient. The plight of patients without carers: the nurses will be able to give them more t
ime. But in fact, we have met only help and encouragement. We have found there are many tireless groups and individuals who have similar aims to us. Indomitable, humane senior nurses have backed us and shown us examples of enlightened practice, where old, frightened people are treated with respect and humanity. But while people are kind, fragmented, rule-bound systems can grind you down and change comes painfully slowly.

  At a Carers UK reception, the chief executive gave me a piece of paper on which she had written down this quotation from the anthropologist Margaret Mead: ‘Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.’ At the time of writing, every acute hospital in England has made a commitment to John’s Campaign. There are John’s Campaign posters on the doors of hundreds of wards saying the carers are welcome. There are passports for carers. John’s Campaign is part of the national audit for dementia. We work with Age UK to implement the campaign across the country. We talk at conferences, produce leaflets, sit on committees. We travel to other countries and take part in the international debate about hospital culture and end-of-life care. But this campaign is the thin edge of a wedge – or maybe it’s a Trojan horse. We’ve never been paid, we’ve never had a staff (though sometimes people call up and ask to speak to my PA) and we’ve never had any bureaucracy. We’re not a company, not an organization; we’re a tiny movement that’s part of a larger, worldwide movement for change.

  The culture is already transforming – and fast. In the old days (not so long ago or so old) dementia was barely recognized. Andrew Balfour tells me that when he started working as a clinical psychologist he was ‘appalled’ at how people with dementia were treated. ‘It was very distressing. It wasn’t that people were deliberately nasty or cruel, but dementia was invisible in those days. As a young man I’d never heard of it!’ In those hospitals, ‘there was a wiping out of meaning, and of the sense that people’s communications were meaningful. It felt like a premature foreclosure of meaning that is an enactment of the illness: a social death of meaning.’ He remembers some of those hospitals being ‘like Bedlam’. Some people had been in hospital for most of their adult lives with mental illnesses, and now they had dementia too and ‘they were warehoused’.

  He tells me of an incident that was revelatory for him. One of his patients was an old woman who was always standing up and screaming. Everyone on the ward found her ‘very irritating, very grating’. ‘I said to her, “You seem very angry,” and she replied, “I’m frightened, fucked up and far from home.”’

  Frightened, fucked up and far from home: I think of all the men and women I’ve seen lying in their hospital beds, crying out, moaning, obviously frightened but without the words to say of what. Wanting, but not able to say what they want, need, hope for, must have. We don’t understand their language. Maybe we have to listen harder and learn it better.

  * * *

  • • •

  Fifteen months after my father died Sean and I were with my mother in the north of France. It was our first evening there; we’d unloaded the car and stocked the fridge, and now we were sitting in a small, dimly lit brasserie. My mother had a plate of garlicky snails in front of her. She was talking about the day and suddenly she stopped talking; a puzzled expression slid across her face. Her mouth twisted and then she fell against me, her head tipped back, her eyes opened and rolled back, and her whole body slumped: a dead weight – and we did think she was dead. She didn’t seem to be breathing.

  In the ambulance, she briefly came to and I promised I wouldn’t leave. When we arrived at the hospital I ran after the paramedics as they sped her towards the emergency room. But the double doors shut against me and I couldn’t get in. I hammered on them and shouted in my rusty French. If she was dying, I needed to be with her. I could feel the panic sharp under my ribs. Eventually I was admitted and led to her bed, where she lay, a tiny figure barely disturbing the sheets, with drips and tubes attached to her, eyes closed but breathing in long, shallow gasps. After a few minutes the nurse told me I could come back in the morning; I said I had to stay. A more senior nurse was summoned and told me to leave; I said I wouldn’t. A doctor arrived and said that there were rules: I could return later. I said, ‘Non.’ In spite of the fact that by this time I was running a campaign in the UK about open access to carers, it felt hard to stand my ground, and perhaps it wasn’t even necessary. I was fighting the battle I had lost without even a struggle many months ago. But I’d promised. I could feel my emotions rising in me like a great howl. I couldn’t leave (because I had).

  There was a French shrug, a long frown of disapproval. I could see myself through his eyes, a dishevelled, hyperbolic, out-of-place woman with a chipped tooth and bags under her eyes. I stayed the night, on a stool, falling asleep and lurching awake through the small hours, listening to my mother breathing. Being there.

  * * *

  • • •

  I have learned many things during the years of running the campaign – acronyms and bureaucratic structures, train timetables to destinations I never would otherwise have visited, how to read audits, nutritional information, statistics about dehydration and hospital falls and lengths of stay.

  Above all, I’ve learned how lonely it is just to be I; how uplifting and consoling to be part of a we. Alone, I can do little; together, we can do a great deal.

  And I’ve learned what of course I knew but somehow didn’t, that I can’t turn back the clock and recover my father, bring him home unbroken. But we can rescue others, as we would wish to be rescued in our turn.

  11. HOSPITALS

  In hospitals, time is measured in many different ways. There are clocks on the walls of wards; fob watches tucked inside nurses’ pockets, the machines at the head of the bed and the sonar pulse of a heartbeat. The myriad of routines measure off the minutes and the hours; a day is divided up in a rigidly complicated timetable. The lights stutter on in the early morning, the trolleys rattle along corridors which seem to stretch for miles; breakfast, bathroom, bloods, drugs, thermometers, therapies, ward rounds, lunch, visiting hours, menus handed out and filled in, discharge forms, coffee (milky), tea (often tepid), toast, monitoring, maybe visiting time again, supper (very early), meds, bathroom, the lights flicker overhead, machines bleep, and even when the rooms are dimmed and people are sleeping or trying to sleep, the ward rounds continue, people’s voices, an emergency somewhere, feet clicking on the linoleum through the night which never really comes, which is endless.

  Time is everywhere in a hospital, and inescapable, a bureaucracy in which the patients have little or no control. But it also becomes something unreal and mechanical. It’s never dark and never still and never silent. The circadian rhythms of sleep are banished. Morning seeps into afternoon into evening into night. It’s a bit like being in transit in an airport terminal, life put on hold, and you could be anywhere, any time, anyone. A body in a bed. An object being processed. Waiting in the small hours, waiting in the dead time, always waiting.

  Time can be a tyrant; timelessness a torment. People with dementia often stay in hospital for many weeks, or even months. My father was there for five weeks, lying in his bed, white hair on his pillow, hyper slow-motion wreckage, smiling genially at the nurses. The calendar in his head quite gone, days gone and seasons gone, at last adrift on the formless sea of time. Tick tock. Time running out. Clangs the bell.

  * * *

  • • •

  There are large clocks in the flagship ward run by Rowan Harwood, professor of geriatric medicine at Nottingham University Hospital, whose work on providing dignified and compassionate care to his patients with dementia has been something of an inspiration to me. They show the time, the date. I wish my father had come here. It’s bright, spotlessly clean, freshly painted, spacious. Each eight-bed area is painted a different colour. There are photos beside every bed. Everything is clearly signed. There are activity areas, social eati
ng, therapeutic interventions. Carers are welcomed and treated as part of the team of support. In this calm, bright space, distress, apathy and even violence are seen as efforts to communicate.

  At Sussex University medical and nursing students are paired with a person with dementia and their family so that they can gain insight into what it is to be old and become interested in a humane way in an illness that they will almost certainly encounter in their career. The patients become their mentors. ‘Our job,’ says Sube Banerjee, ‘is to create the next generation who are a bit less rubbish than we are.’

  Hospital after hospital, up and down the country: I wish I could name them all and the people who work there, my roll call of gratitude. There are art classes, music sessions, volunteers who come to do patients’ hair for them, paint their toenails, give them hand massages, thumb through photo albums, hand out tea. There are ‘This is Me’ booklets at the end of beds, so that while the patient might be unable to articulate their own likes and dislikes, they are written down clearly (what name they want to be called by, who their family members are, what food they love or hate, what their interests are, what their job once was, where they lived as a child, what makes them them). There are charities that bring in dogs and other animals. That make twiddlemuffs – knitted comforters that people with dementia often find it reassuring to hold and fiddle with. Rooms for carers who want to stay the night. Rooms for the dying. (Most people don’t want to die in hospital and most people do.)