The Last Ocean

by Nicci Gerrard

  Denis East was known to his friends as ‘the memory man’: he didn’t just remember his own part but all the orchestral parts. In the camp, he would copy scores out from memory. And when his own memory began to fail he was angry, scared and frustrated, banging his head against the wall and shouting. (She shows me another photo of her husband, once more with his violin, but now his hair is silver. And another, wearing a red jumper and holding a glass in both hands, as if to steady it; his expression has become one of a familiar strained anxiety.) Maggie was still working as a primary-school teacher and Denis East’s minder was George, their Great Dane/Labrador cross (‘a medium Dane’, says Maggie), who kept his master on track for a while: ‘Every morning, Denis would take George for a walk, buy ham from the village shop and put it in the fridge, go upstairs to his studio with George, play his violin until midday, at which point George would lay his head on Denis’s bow arm and show him it was time for lunch. Ham for George, sandwich for Denis.’

  And then the faithful dog died (just as Theresa Clarke’s dog died and left her to her confusion) and things began to unravel. Her husband started to get lost. He would ‘walk and walk and walk’. At the memory clinic, where he knew he couldn’t get out, he would climb over a high wall (a scared old man) and escape ‘like from prison. He wanted to come home.’ But home was starting to have a different meaning – not just Maggie and their converted chapel in Suffolk but also his childhood. ‘He became obsessed by the need to see his long-dead parents who lived in London: 48 Mora Road. I took him there once and he didn’t recognize it. He was always wanting to walk back to London, up on to the A134, going home to his long-ago past – although when he had returned from his terrible war, emaciated, traumatized and stricken, his parents didn’t welcome him back. They had been told he was dead, and when he appeared like a ghost his father simply said: “I don’t know what your mother’s going to say.”’ Maggie says he never got over that. Yet still he yearned to return to his childhood self, there in suburban Cricklewood, before the world became a savage, heartbreaking place.

  (Claire Kent at the Tavistock Centre talks of how people with dementia will often search for their earliest home – when they’re tired, when they’re anxious or confused, they want that place of safety. They go out at night especially, looking. Looking for what? Looking for something, but what is it? They’ve lost something: themselves?’)

  Denis East was often agitated and could be physically violent. Maggie sometimes locked him in to keep him safe (she falters as she tells me this). One day he escaped and brought the traffic on the A134 to a standstill. ‘Denis was weaving about on the road. There were about six people trying to stop him; he was pushing them away; he was trying to push his carer into the oncoming traffic. I persuaded him I would drive him to Mora Road – and then I drove him home. I bolted all the doors and he said: “You realize we’re locked in here? Trapped?” We were trapped together. A neighbour came round and asked: “What are you going to do, Maggie?”’

  She looks at me. ‘So. I took him to a mental-health wing in a hospital and I left him there. I left him.’ Tears run down her cheeks. ‘I saw him go downhill. He didn’t need a nappy, but they put one on him anyway. It was degrading.’ Then he was put in a secure wing in a care home, but he attacked an old woman and they wouldn’t let him stay. Then another spell in hospital, then out again into another home, where he stayed for three years. And he always wanted to go home, whatever home was by then, but he couldn’t escape. He walked and he walked in the garden, and then one day he fell and he could no longer walk or try to escape or go home to a time when he was safe, a violin tucked under his chin, music flowing through him.

  He loved Bach and Beethoven and was obsessed with Beethoven’s Opus 131: by the end the score was a ‘shattered copy’ that he fingered every day. He loved Mendelssohn’s violin concerto, and still played it – tried to play it – when he was in the home. Their shared dream had been to convert the old chapel they’d bought into a small concert hall – and now Maggie has done that in his memory, selling his precious violin to raise the money. She sits in the lovely home they once lived in together; in the garden are old gravestones that she tends, though the names of the dead are worn away or mossed over. She remembers her husband and is full of sadness: the man who tried to go home.

  * * *

  • • •

  William Utermohlen went into the Princess Louise nursing home in 2004. He had stopped painting or drawing. He was incontinent. Although in his self-portraits he looks like a small man, he was over six foot. He kept falling and Pat couldn’t pick him up. She could no longer cope. ‘I felt dreadful when I let him go. Dreadful and cruel,’ she says, not letting herself off the hook. In the photographs of him at the home he stands among the jostle of other residents but the sense of his loneliness is palpable. He is tall, taller than anyone else in the room, and stooped. He never smiles. He looks shockingly sad, existentially alone.

  * * *

  • • •

  After years of violence and disorder Jan Bell is contented in the home where she now lives. There is order, calm, a sense of being on solid ground at last.

  * * *

  • • •

  And for Jenni Dutton, ‘The care home wasn’t a difficult decision at all.’ Her mother was becoming increasingly disoriented, and it was time. ‘There was lots of music there, reggae – Mum loved reggae – and Ella Fitzgerald, not Vera Lynn and the war, which is what they often play. I would walk in and they would all be dancing. I became part of the unit. I looked after people; we’d chat. It was such fun. They taught me how to deal with what was happening. You have to go in positively. I had no family with me and I was quite free. I’d go in at all sorts of times; sometimes at eight or nine at night. Everyone who worked there was lovely – simply amazing! It was a home and I was a member of the family.’ She looks at me shrewdly. ‘I’m not a perfect person, you know. I was getting a great deal out of it.’

  This sense of reciprocity is woven through Jenni Dutton’s story of caring for her mother. We are often told we have to enter the world of people with dementia, and that is useful advice – but we should also remember that they have something to teach us. Even when the dementia is advanced, there can be reciprocity. These people have lived longer than most and they have the best stories, the most knowledge. Their memory might be failing but their human value remains intact. There is absolutely nothing dutiful or martyred about Jenni Dutton’s account of her mother’s final years. She talks about them with joy, and with the sense of having received a gift as well as given one. They collaborated together on the ‘Darnings’, her mother sitting very still while her daughter picked out her image with thread or telling her if she’d got something wrong. And during her mother’s years at the home this involvement continued. Even when she was lying in bed, five stone, frail as a bird in winter, Jenni Dutton would sit beside her mother, seeing how the light fell on her face, holding her hand, sometimes taking pictures. She shows me one of these photographs, her mother’s head on the pillow, her eyes closed; she could be dead. It’s so mercilessly tender and intimate that I almost have to look away, which she notices: ‘I did have to stop and ask myself it this was right.’ I look at the ‘Darnings’ hung on the walls around us; the repeated face ageing and unravelling until it is the face of a ghost. ‘But old people often look sad, you know,’ says Jenni Dutton, reading my thoughts. ‘Their muscles relax and sag. We project things on to them.’

  She was in it until the end with her mother: daughter, carer, collaborator, recorder of a life that was gently fading. ‘I knew from the outset I must have nothing to regret – I guess there’s a self-consciousness about that.’ That home was home for her mother for a while, or she made it so.

  * * *

  • • •

  The desire to go home lies very deep in us: it’s our place of self-belonging. Odysseus is striving to return to where his wife, Penelope, waits and sew
s and unpicks the threads, and where his ancient dog will lift its head and recognize him, although to everyone else he is a stranger. Leopold Bloom in James Joyce’s retelling of the myth is attempting to go home, wandering through the labyrinths and perils of Dublin. Dorothy in The Wizard of Oz travels through witchy lands, along yellow roads, in order to get back to Kansas, at last learning that ‘there’s no place like home, there’s no place like home’. T. S. Eliot’s Four Quartets weaves itself around this urgent need to be centred in a time, a place and a self: ‘We shall not cease from exploration / And the end of all our exploring / Will be to arrive where we started / And know the place for the first time.’

  When people in homes try to go home it must be because they no longer feel at home in their lives. In their lostness, they suffer a ‘searing’ homesickness for the site of ‘psychic security’. This sense of absence causes feelings of ‘abandonment and dread’, like an infant registering the loss of the maternal presence. Apparently, when men feel homesick, it is most often for where they were born and for the comfort of the woman who bore them (all those soldiers who die calling out for their mother). But women who are mothers themselves yearn for that time when their own children were born.

  * * *

  • • •

  My father loved home. Although his most vivid memories in his dementia years were of being carefree and unattached, in unfamiliar places (evacuated during the war, being in Finland as a young man, national service in Egypt, the heady days of university), he was a homebody. My mother is an adventurer and explorer at heart, often restless, but my father loved returning to his place of safety. Above all, he loved his garden: planting, weeding, pruning, making bonfires, identifying insects and wildflowers, watching small brown birds in the undergrowth, getting his hands dirty. If we ever rented a holiday house, he would make a compost heap there. In many of my childhood memories he is a toiling figure seen through the window, sinking a spade into the soil or gazing intently at something I can’t see. His garden was the centre of his home.

  In his dementia years, the familiarity of home was increasingly important: everything in its right place, everything known, the shape of the day a comforting repetition, the clock on the wall showing the time, the flowers and plants outside marking the seasons. A few years before my father died, my parents moved from the house they had lived in for three decades in order to be in the middle of a town, where they could walk to the shops and the doctor’s. The move itself was a ferocious upheaval – weeks and months of going through possessions that had accumulated over a lifetime. Like many people of their generation, they were thrifty and neither did they throw anything away. My father had about eighty or ninety ties, many faded and fraying. My mother had kept the inner soles of discarded shoes (I remember learning at her funeral that one of my aunts had kept dozens of looped hems that she had cut off from trousers that were too long for her short frame), and Tupperwares that no longer had tops. There were boxes of glasses in the cellar, rolls of moth-eaten carpet in the attic, battered biscuit tins that brought memories of oat cookies and ginger cake flooding back, piles of letters and papers and twenty-year-old bills and plant catalogues from years ago. Chipped china, plates they had bought on their honeymoon in France, tapestry comb cases we had stitched in school when we were little, photos of people whose names they could no longer remember. We found a card my father wrote to my mother: ‘To Pat, a short word meaning home.’

  In the attic, my sister discovered a canister in which was a reel of film. She took it to be converted into a DVD, and the following Christmas, when my parents were between homes and living with each of us in turn, the extended family gathered to watch it. None of us had any idea what we would see. After a splutter of light and sound, the jerky lines resolved. There was a black-and-white image of a small English church. There were men in suits and women in calf-length dresses and pork-pie hats standing by its porched gate. The church door opened and down the path came a couple, he in a morning suit and she in a wedding dress with a foaming train. A radiant pair, so young and so untried. My mother had her hand tucked into my father’s arm and they were both smiling. Smiling at each other and smiling at us, who are waiting for them down the ladder of years. They walked towards us out of the past, radiant with hope for the future. We received them in an anguish of love.

  My father’s dementia was quite advanced before he left home for a few weeks, to have his leg ulcers healed. (If we could turn back time.) He came back a month later, but he never came home. He never came home to himself.

  10. THE LATER STAGES

  ‘I’m all these words, all these strangers, this dust of words, with no ground for their settling, no sky for their dispersing . . .’

  Looking back, I think I was strangely acquiescent during my father’s long drift, or at least a touch unfocused. It happened so gradually, in those barely discernible, incremental changes that sneak up, Grandmother’s Footsteps in the mind, and you don’t even know that’s the game you’re playing. And I was busy, had four children myself, was working hard, blah blah; the excuses we make. Only later, backlit by the trauma of his last months, did I see his decline with any clarity. So that’s what was happening; that’s where he was going. I want to ask him what it felt like; I want to hold his hand and tell him we’re all here with him and it will be all right (which of course it won’t be, it wasn’t). Or just sit in the garden together as the sun goes down.

  There came a point when my father was no longer living with dementia but dying with it. And it wasn’t a blurred line he softly crossed, it was an abrupt and unignorable rupture – like someone who has been very slowly falling through water suddenly plummeting like a stone, nothing to stop him. To cut a short story even shorter: he went into hospital for treatment that was routine but that he badly needed, and for all sorts of complex reasons got stuck there for five weeks. During that time (I’m wincing as I write this) he was very often quite alone. The hospital had rigorously enforced visiting hours and then an outbreak of norovirus, so that for many days on end visitors were not allowed in at all. (The category of visitor in this case included the family and carers.) The nurses did their job of nursing, in a ward that, though general, was largely made up of people with dementia and where many patients required a level of attention they could not possibly receive from hard-pressed hospital staff. The doctors doctored. My father, who was a very polite man, lay quietly in his bed. He didn’t eat, he didn’t drink, he didn’t walk or talk or smile into the smiling face of someone who loved him. No one held his hand and read him poetry. If someone had asked him how he was, I’m sure he would have genially said: Very well, thank you (until the day when he couldn’t find the words to answer).

  It was February 2014, a time of storms and floods. The river near my parents’ house grew monstrous and flooded into roads and fields. There were swans on the cricket pitch. One time, driving back from the hospital, I saw a man standing on the parapet of the main bridge, police all around him, trying to persuade him not to jump, and water rushing past just beneath him. The sky was like a bruise. Everything felt wild.

  My father came home at last, skeletal, immobile, inarticulate and helpless. But he never went upstairs again, or walked in his garden, or danced with my mother, or seasoned the gravy, or teased his grandchildren, or lifted a glass of red wine: your good health. I’m a middle-class, middle-aged professional woman; a writer and a journalist. I come from a family of doctors (my father, my brother, one daughter, one nephew, a brother-in-law . . . ). I’m impatient, reasonably assertive and don’t mind challenging rules – Sean would say I like to. For better or for worse, quite often for worse, I tend to charge into situations where I think I see unfairness or when my blood is up. I find it much easier to act impulsively than to wait things out: I don’t bite my tongue, I don’t count to ten and I don’t let sleeping dogs lie. Why was I so blind and so obedient to the rules? I still don’t understand.

  * * *

 
• • •

  In December 2014 I launched a campaign, together with my good friend Julia Jones. It was named after my father. John’s Campaign has a very simple principle: that the carers of people with dementia should have the same right to accompany them in hospital as parents do with their sick children; that people with dementia have the right to be so accompanied. It seems unimaginable now that, not long ago, parents were not allowed to be with their children; soon it will seem unimaginable that in many hospitals carers are allowed in only during strictly enforced visiting hours.

  John’s Campaign, born in the UK, is relevant everywhere, because hospital, everywhere, is hazardous for people who are old, frail and confused. The healthcare model in most countries is one of heroic intervention: a tumour removed, a heart set beating again, a leg mended . . . Hospitals are closed, medicalized spaces full of experts, machines, rules. But today, with an ageing population who often have multiple medical conditions and who may get stuck in hospital for months, this model is insufficient. A patient is also a person, valuable and precious and precarious; an infection may be cured and a life wrecked. We are embodied minds in a world charged with intricate connections, webs of belonging and recognition.

  Human beings are social beings – and we require social interaction, not just for contentment but for actual function and for survival. Put a person in solitary confinement for a few weeks and they will start displaying signs of mental disturbance. In an article for the New Yorker, Atul Gawande asks if the solitary confinement that tens of thousands of prison inmates endure in the US amounts to a form of torture. He cites the work of Harry Harlow, a psychology professor at the University of Wisconsin, who studied the baby rhesus monkey. His most influential, controversial study was on the effect of these monkeys being separated from their mother but, in a later study, he examined the effect of total isolation.