The Last Ocean

by Nicci Gerrard

  I sit at a table in one of the living rooms next to Pauline’s mother. She smells nice, of the perfume that Pauline gives her and makes sure she puts on. A woman walks past pushing a little buggy with a baby doll in it. Nearby, a man who was once a famous musician sits slumped on the chair: CDs of his music are on the shelves. Pauline’s mother fiddles with the buttons on her blue lacey top and smiles, but smiles at nothing; Pauline holds her hand and smiles as well. When we leave she is visibly moved. ‘I feel guilty for my mother’s state,’ she says. ‘She is not dignified. She has lost everything she was. She is in this beautiful home. But every time I leave her I leave her alone. I feel guilty: I have left her there, knowing that she had wanted to prevent living this way. She is helpless in every way and I am guilty all the time. And in some ways, it isn’t good that she is round the corner, because she’s too near to me to distance myself from this feeling, which is overwhelming. And of course,’ she adds, always scrupulously honest, ‘it will be a relief to one day not have this feeling that I am leaving her there, in this beautiful place, in this awful situation.’

  * * *

  • • •

  What a difference a letter makes. ‘Home’ is a small word meaning the centre of one’s world, the place from which one sets out that is ‘at the heart of the real’. ‘A home’ in many cases doesn’t mean safety at all but removal and unbelonging. Home is domestic and personal; a home, however welcoming and homely, is professional and institutional. Home is where you are in control of your life; a home is where your life is partially or wholly arranged for you, and maybe not in the way that you desire. Home is where you live, and a home is usually the place you go before you die. For some it is the last refuge; for others a waiting room where you don’t want to be but don’t want to leave. One by one, you’re summoned.

  ‘Show me the way to go home, I’m tired and I want to go to bed.’ We are in a residential care home for people with dementia in Oxfordshire, seated in a circle, singing. A young woman with a guitar and a glorious fall of red hair leads us. The woman next to me is lusty, her voice clear, her swollen hands tapping out the rhythm; the man opposite in his wheelchair looks slightly dazed but he mouths the words. Most of us are singing, though some sit silently. I look from face to face and wonder what they are thinking, what they are feeling. ‘Wherever I may roam, on land or sea or foam,’ we sing. The woman next to me reaches out and pats me on the arm, as if to comfort me. ‘... You can always hear me singing this song: show me the way to go home.’

  Where is home for them? Are they at home here, now? Or is home somewhere else, in the past and forever gone? Where is home for Eddy Bell’s mother, who thinks she is running the one she is in and has sherry in the bath and other people’s dolls locked up in her wardrobe? Where is home for the woman in the hospital bed who pleads, over and over again, to be taken there? Or for the woman who runs away from her care home, wanting to get there? Where was it for my father, when he lay in his hospital bed downstairs, the bird table outside his window, and told us it was time to go there? Home is where they speak your language: by language, I do not mean just words but that which connects the inner self with the outer world. When all language falls away, nowhere is familiar.

  * * *

  • • •

  The building of a house and the idea of dwelling on the earth are intimately connected (bauen, to build, and ‘being’ have the same roots). Without a home, one is ‘shelterless’ and lost in ‘non-being’. Emigration means not only crossing the water and living among strangers but ‘undoing the very meaning of the world and – at its most extreme – abandoning oneself to the unreal, which is also the absurd’.

  In his film Human Flow, the Chinese artist Ai Weiwei follows the movements of the 65 million people who have no home. It’s a vision of populations in flight, trekking down mountain roads and across deserts, crammed into open boats to cross the Mediterranean, sleeping in ditches, under bridges, in tent cities, pressed up against tall wire fences, a staggering mass migration of people who are searching for a home, and all they have is what they can carry. They are on a quest; they urgently need their journey to have an end. As that much-missed philosopher of hospitality John Berger once wrote, home is not primarily a dwelling but an emotion and an identity, the ‘untold story of a life being lived’. It is preserved through habits – jokes, opinions, actions, gestures, ‘the raw material of repetitions turned into a shelter’, while memory is the ‘mortar that binds the improvised home together’. Within it, tangible mementoes are arranged. ‘Home becomes the ‘return to where distance did not yet count’. And Hisham Matar, in his moving memoir of his dead father, experiences his return to his childhood home in a similarly self-centring way, as ‘a precise and uncomplicated conviction the world was available to me. But wasn’t this an odd thing to think, now that I was finally home? Or is this what being home is like: home as a place from which the entire world is suddenly possible?’

  * * *

  • • •

  What makes a home into home? What makes a resident into a member of a new family and an institution into a place of welcome and belonging? Over the past few years I have visited a great many residential homes, at home and abroad, and each time I step over the threshold I feel an anticipatory lowering of the spirits, a kind of muted dejection. Large, medium and small; modern builds and converted old ones. Long corridors. Careful lighting. Matching, wipeable furniture, frequently in beige or in red. Hoists and stair lifts. Photos of younger selves on the walls. Photos of flowers, blown up large, and of tranquil water. Sometimes there’s a smell of urine, or worse; mostly these places are clean. I have been to music sessions, dancing classes, I’ve done the hokey-cokey and twisted again, like we did last summer. I’ve talked with the people who live there, who work there, sat in dining rooms and sitting rooms and bedrooms. The staff in these places are usually low paid, often on the minimum wage or zero-hours contracts, and their crucial work is barely recognized. Many of them show great kindness and patience towards their vulnerable residents, going beyond mere duty, and some of them seem genuinely to be enjoying their job and taking pleasure in the company of those they are caring for.

  But I’ve only been to the homes that wanted me to visit them and were prepared for me – available for inspection. ‘Home’ might be a word for safety and belonging; it is also where most of life’s bad stuff happens. Cruelty and violence don’t usually take place out in the streets, done by strangers, but in those private, hidden spaces where we can’t observe it or prevent it, behind closed doors, and against people who are powerless. Abuse flourishes in intimate, secret places, close to home.

  In the US, there are apparently more than 2 million cases of elder abuse each year in nursing homes; one in ten old people will experience some form of abuse. People with dementia are much more likely to be abused than those without it. What’s more, elder abuse is probably the most under-reported form of violence in the country.

  It’s the same depressing story in the UK, where the care system is under severe pressure, with many experts saying it is disintegrating: home-care workers are paid paltry amounts of money to spend tiny amounts of time in the homes of the old and vulnerable. There have been over 23,000 allegations of home-care abuse in the last three years – which means there must be more, because often the people who are being abused can’t tell tales (which, of course, is partly why they are being abused). Many care homes are understaffed and operating within a punitive, impossible budget; the tens of thousands of allegations of abuse over the last three years include neglect, physical abuse, psychological abuse and sexual abuse.

  All over the world, in poor countries and rich ones, hundreds and thousands of old and vulnerable people live the last part of their life in fear and distress, in loneliness and in sorrow.

  * * *

  • • •

  Even where there is no overt mistreatment it isn’t uncommon for people to be treated as ob
jects, spoken over and about, not to, and stripped of all autonomy. Although when I’ve visited residential homes everyone was aware I was there as a writer, journalist and watching eye, I’ve nevertheless witnessed staff being sluggish and indifferent towards those in their care. They seemed not to notice distress, or dismissed agitation as a person being ‘difficult’ – like a child behaving badly. I think they have genuinely ceased to notice that these people are depressed or purposeless (indeed, for many people, old age is almost synonymous with depression) or that they are lonely. ‘The package of care’ is often the package of loneliness. As Atul Gawande writes, ‘We end up with institutions that address any number of societal goals . . . but never the goal that matters to the people who reside in them: how to make life worth living when we’re weak and frail and can’t fend for ourselves any more.’ The adult children who often choose the homes prioritize safety. For the people who have to live there, other things might be more important: autonomy, for instance, or sociability, or fun. I know about all the health and safety regulations, the necessary bureaucracy of professional care – but why can’t everyone who wants and is able cook together, or keep hens in the garden, have dogs and cats and other animals, be in charge of their own life as far as possible, with a purpose to each day? Being kept safe is a tiny part of what makes a home.

  Things are changing from the days that my grandmother was in a home, where the dark hall was thick with the ammonia stench of urine overlaid with air freshener, and where residents spent their days sitting around the edges of rooms, half asleep, occasionally being given jolly, time-passing, soul-destroying activities to do (bingo, jigsaws . . .). Increasingly, there are homes that allow pets – and why not? Alcohol with meals – and why not? A coming and going of the residents, because, after all, that’s what they’ve always done. There are homes that are built on the grounds of schools or colleges; homes where young people volunteer, where residents are stakeholders, helping to select staff. Homes where the people who live there are in control of their days as far as possible. Probably (I don’t know), more residential homes are good than not-good. Although a handful are downright appalling, quite a few are outstanding, and in these places of refuge and companionship, people may flourish again.

  For twenty weeks in 2013, the poet Sarah Hesketh visited a residential care home for people with dementia as part of an artist-in-residence programme. The men and women who lived at the Lady Elsie Finney House in Preston had advanced dementia; some were dying there. It was, she says, ‘a surreal environment’. There were ‘weird things on walls’ – stickers of portholes with seagulls perched on them; heart-shaped posters; a skeleton wearing a pair of glasses. People were locked into their rooms. Many of the staff, she says, ‘were great’ and several opened up to her, telling her how hard their job was and how unrecognized. At the end of her first day she felt scared and sad; ‘I kept being sad but I never felt scared again.’ At the Elsie Finney House, ‘Nobody thought they were in the place they lived in.’ They found ways to explain why they were there: one woman believed she was back at school and the staff were her teachers. (I think of Jan Bell happily thinking she was running the home where she lives). Sarah Hesketh says that no one went out into the garden in the nine months she was going there, and that there was a sense of living on the far edges of life. Hospitals are often at the centre of things (‘choirs and MPs visit them’), but ‘homes are on the margins’, so there is often a sense of being ‘shut away out of sight; of loneliness’. Old age can push people to the edge of society; dementia often pushes them right out of sight, and then out of mind. They are the missing persons.

  I visit a newly opened residential home in Berkshire, home to sixty or so women and men with dementia. It is made up of circular buildings and is flooded with light. As soon as I step into its fresh, clean, bright space, flowers everywhere, I am filled with relief. Such care and imagination has gone into its design. Each bedroom has its own numbered front door with a window next to it that holds objects and pictures the resident has chosen and a back door that opens on to a courtyard. There are small living rooms, a cinema, a real shop; there’s a well-being room; there are nooks with armchairs in them. There are books on shelves, and interesting objects; pictures and puzzles. It’s being home by mimicking home. The circular structure means there are no dead ends: people can walk and walk without getting lost or being brought to a halt. There’s a large garden and a gardening club. There’s a playground where grandchildren can play, watched over by their grandparents. And I’m struck by how staff hold and embrace and touch the old people they are caring for: so often old people are touched only when they are being washed and fed, and then it is often by gloved hands. The people who live there are part of the staff-selection process. At night, staff wear pyjamas so that if someone wakes they will know it is not time to get up. And, crucially, family and friends are welcome there at all times, even for the night. Of course, people still get upset and they still get homesick: sometimes for the place they have recently left, more often existentially – for their childhood, their parents, their old sense of safety and hope, of life unfolding in front of them. ‘You try to enter their world,’ says the manager. ‘You have to pay attention to small things, give them dignity, respect, their autonomy. You have to know each person.’

  I meet a man of ninety-nine who still misses his dead wife sorely but who is less lonely now he is in a home. He’s making new friends (youngsters in their eighties). I dance with a woman with piercing blue eyes and a smile that never leaves her small face who tells me her life is ‘smashing’ now she has left her own home, where time passed very slowly. A home is not often home, but care may be care – kindness in action – and in many homes there is great kindness and endeavour. At every stage in life people need to feel they have a purpose and a part to play, and recently I’ve been struck by the courage and optimism people have in the face of loneliness, frailty and profound loss. A home can become home. Or nearly.

  Mary Jacobus tells me how at the workshops she has been to in Ithaca carers are advised ‘never to say never’. And Raymond Tallis is adamant that, far from resisting the conditional idea of his elder forgetful self in a home, he welcomes it. ‘I do want to go to a home. I want to say to Terry [his wife]: “I don’t want you to remember me, after forty-seven years together, through a prism of three years of hell. Being a degraded body that’s behaving badly.”’ He chuckles. ‘I think maybe she should sign a contract to that effect.’

  When we talk of residential homes, there can be a whiff of the poorhouse, of warehousing the powerless. The clues are in the language: we speak of ‘sending’ people to a home, as if to boarding school or even prison; of ‘putting them’ there, as if they had become an object; of ‘residents’. Their world shrinks: from a house or flat, say, to a room, just a few possessions remaining and everything else left behind, or sold, or handed on; photos on the wall as reminders of what life once was. Then just to a chair by the window. To a bed . . .

  For Rebecca Myers and her family, the decision that her mother should go into a home was ‘terrible’, although they had reached a stage that was unsustainable. They all visited her, and until she died Rebecca’s father went every day and never stopped loving her. But ‘he met someone’, Rebecca says. The woman worked in the home where her mother was. She and her father started a relationship. ‘And Mum was still there, still alive.’ She looks at me searchingly; there’s no anger or resentment in her voice. ‘It was hard. I could see how lonely he was. And he became happy again – there was always that sorrow there, but he laughed once more. So I’m grateful to the woman.’

  It’s the reverse situation to the one portrayed in the film Away from Her, in which Julie Christie plays a woman with early-onset dementia who goes into a home. Watched by her anguished husband, she becomes romantically involved with another resident. Is it infidelity? Of course it isn’t. Of course it is. As Rebecca says, it’s hard.

  * * *

&n
bsp; • • •

  Maggie East weeps when she talks about her beloved husband Denis East leaving home. ‘I said, “I can’t do it.” I left him there.’

  Denis East was a gifted violinist who played in the BBC Symphony Orchestra, the Boyd Neel Orchestra and the Yehudi Menuhin Bath Festival Orchestra, as well as teaching at the Trinity College of Music. In the fifties he founded the Denis East Quartet, and later he played in a quartet with some of his students, who continued to play as a trio after he went into the home.

  He was many years older than Maggie and their affair and marriage caused a family rift. She talks of him with anguish and pride, showing me photographs of her husband as a handsome young man, dark-haired and solemn, his violin in his hands. His life had always been soaked in music. He was something of a prodigy, winning a scholarship at fifteen to study at the Royal College of Music. And music literally saved his life: as a Japanese prisoner of war in his early twenties, he escaped hard labour by playing at concert parties. (She shows me a dog-eared programme for a concert at Changi jail – and there’s his name, Denis East paying Chopin, Paganini, Bach.) When he had terrible ulcers, he was scheduled to have his hands amputated until the surgeon discovered he was a violinist and saved them. He was a ‘big, tall man’ who came home weighing seven stone and carrying an enduring terror of being locked into places – of being a prisoner once again – and who cried every time his friend George Wall with the beautiful voice was mentioned.