In the Wellcome Foundation’s airy Hub, high above the roar of London’s traffic-clogged Euston Road, Seb Crutch talks with animation about how we should learn to value the experience of people living with the illness: ‘We want to be inspired by people with dementia,’ he says. ‘There might be scariness, sadness, depression, but there is also intrigue, interest, uncertainty. Our bias is towards the idea that there is value in the experience.’
People sometimes think, he says, that ‘the arts should make us happy. No! Music, for instance, can confirm the mood we’re in; confirm our sadness. It is allowing us to plug in to our inner selves.’ And he adds, ‘The arts should be done with, not to.’ It’s about collaboration, engagement, embodied knowledge, everyday creativity, the porous boundaries between the self and other, living in the moment. Music, words, pictures have the power to take you to a different place, like a kind of magic carpet.
When I talk to Alex Coulter of South-West Arts, who was a member of an all-party Parliamentary group looking into the benefits of the arts upon health and well-being, she reiterates this power of the arts to take us both into our self and into the world. After two years of evidence gathering, roundtables and discussions with service users, health and social care professionals, artists and arts organizations, academics, policy makers and parliamentarians from all parties and both houses, its unambiguous findings are that the arts can help keep us well, aid our recovery and support longer lives better lived; they can help us meet major challenges facing health and social care – ageing, long-term conditions, loneliness and mental health; and they can help save money in the health service and in social care. She tells me of an experience that the violinist Neil Valentine had: a woman in a hospital side-room was so disturbed that the staff could do nothing for her. He played his violin very quietly, over and over again, and gradually she was quietened and comforted. Something was happening: she was enabled to find a calm place inside herself.
It makes sense that one of the major risk factors for dementia is loss of hearing, because this cuts a person off from their world. They retreat into themselves. As Alex Coulter says, ‘What we need most of all is connection.’
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Many of the people I have spoken to in the course of researching and writing this book – those with dementia and those who care for them – set against the desolation, fear, frustration and muddle this healing and transformative power of art. They talk of it in almost religious terms: of being ‘saved’ by music, like a gush of clear water in the desert. For as long as was possible, William Utermohlen painted, making shapes and meanings to keep the shapeless and the meaningless at bay. Emptiness and terror were knocking at the door, but still he painted. Disie Johnson’s husband listens to music and she reads poetry to him. Jenni Dutton’s mother was collaborator, muse and consultant for her daughter’s haunting ‘Dementia Darnings’. Theresa Clarke writes poetry, though rarely now. Rebecca Myer’s father danced with her mother, taking her in his arms and returning them both to their courting days. We live in our bodies and our bodies remember; they respond.
In Sheffield I go to a dance class for people with dementia, where the teacher hands out ribbons, each end held by people at opposite sides of the circle. While we twirl and stomp around the space, we weave our coloured strips, gathering people together, making patterns, linking strangers – a visible reminder of what we are trying to do, which is to connect.
And a few weeks later, in a large hall in London, I hold hands with a tiny woman from Jamaica and a large man from Birmingham, and once more we dance. Bit by bit, our self-consciousness falls away and we grin at each other, laugh. Dementia has robbed them of their verbal ability – but there are many different languages, many different forms of embodied knowledge and ways that we can communicate with each other. The tiny woman is a beautiful dancer; music flows through her. She must have danced throughout her life. I try to imitate her, to borrow some of her lightness and grace. She’s showing me, being my teacher; her feet make tricksy movements on the wooden boards. For a while, we are all occupying the same space in the world, so that our categories dissolve. The carer isn’t the carer any more; the person with dementia isn’t someone who is hampered by incapacity; I’m not the observer. We’re equal, active and reciprocal and the music that is flowing through us unites us.
Or, sitting in a church in Essex on a Sunday in June, I look across at my friend Julia’s mother. She is in her nineties and has dementia. There are days when she is wretched, chaotic and scared, but each Sunday she is soothed and even enraptured by the experience of singing the hymns that she sang when she was a girl. The music has worn grooves in her memory and, while she may not be able to speak in full sentences any more, she can sing ‘Abide with Me’ in a true voice and her face, lifted up, looks young, eager, washed clean of anxiety. Julia thinks that at these moments her mother’s brain comes together, ‘like a flower reviving when it’s being soaked in water.’ People with dementia, she says, need to be drenched in art.
A friend sends me a YouTube film about the ‘Song-a-minute Man’. He has dementia; he can’t remember very much any more – but, oh wow, he can remember the songs he has been singing all his life. He and his son are in a car, and they belt out the words. He has a rich, true, full-throttle voice and a smile that would light up a room. The two of them are exuberant, grinning and singing and trying to outdo each other, caught up in the moment. Dementia is nowhere to be seen. (As Tommy Dunne says: ‘I may have dementia but I’m not going to let dementia have me.’)
It’s what is happening with the chamber orchestra Manchester Camerata’s ‘Music in Mind’, or with ‘Music for a While’, a project led by Arts and Health South West with the Bournemouth Symphony Orchestra, with Wigmore Hall’s participatory ‘Music for Life’, with the project ‘A Choir in Every Home’ and ‘Singing for the Brain’; with dance classes in hospitals and residential homes; with art galleries and museums that encourage those with dementia to come and talk about art.
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I attend one of the monthly sessions at the Royal Academy, modelled on New York’s Museum of Modern Art’s ‘Meet me at MOMA’ project led by two practising artists, where people with dementia who have been art lovers through their life and are art lovers still come to talk about a particular work. We sit in front of an enigmatic painting that we are told at the end of the session is by John Singer Sargent, and there is an air of calmness, patience and, above all, time. There are no wrong opinions here, for there are many ways of seeing. People with dementia are continually contradicted and corrected, but in this humanizing democratic space people are encouraged to see, think, feel, remember and express themselves. Slowly at first, they begin to talk. They describe the painting – three women dressed in white in a formal walled garden, a mysterious statue at the end of the path that the eye is drawn to; outside the walls a dark mass of trees. One man thinks we are looking at a harem; another believes it is a garden somewhere Mediterranean (it turns out he’s right: this is Italy). One man stands up and points his trembling stick. ‘There,’ he says. ‘That’s where the eye is drawn. Through there.’ The stick wavers.
‘Good and bad,’ says another man. ‘At end of death; he himself didn’t do as well as he should have done.’
His wife, who is his carer, quietly intervenes: ‘He’s thinking of the American art critic Bernard Berenson,’ she says.
‘It might be raining,’ someone says, looking at the cloudy mass of trees in the painting, beyond the wall. ‘Soon it will rain.’
‘It looks like the back end of a horse,’ says another, to a ripple of laughter. He grins, pleased with himself.
‘The trees isolate the central part of the painting.’ The man with the stick points again. ‘Those bits outside have no meaning whatsoever. Even the women are quite meaningless.’ He seems suddenly angry.
I remember something that Andr
ew Balfour told me, about a piece of work he did with his patients with dementia. He showed them photographs and asked them to describe what they were looking at. There was a match group of people who were not cognitively impaired. One of the photos was of Yehudi Menuhin as a boy, playing a violin. ‘The people with dementia said things like: “He’s deaf . . . he’s very deaf . . . there are tears in his violin.” These people saw damage in the boy and in his instrument. It was very poignant.’
(And yet at the end of the Royal Academy session, one of the artists leading the discussion talks about the ‘Sargent void’ that critics perceive in his work: so the man with the stick was right after all.)
‘The women are all going off in a huff,’ adds another member of the group. ‘They’re saying: We’ve had enough.’
They are making up little stories and they are searching for clues. They talk about focus and where the line is drawn and I’m learning about how to look.
‘There’s a line that’s cutting you off,’ says one, and I see that there is; the eye is halted. ‘It’s stopping the women from getting to the statue, which is something very precious. There’s something in the way.’
Is he talking of the painting in front of us or of himself? Everyone is looking for signs, listening to each other and responding. There is a clear sense of language returning, thoughts feeding off each other. They are heard with respect and are validated.
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Validation is crucial. We are social beings and exist in dialogue; we all need to be recognized. In health, in wealth, in happiness, in youth and in vigour, we live in a world rich with meanings that we can call upon as a conductor calls upon the orchestra, and are linked to each other by a delicate network of communications. This is what it is to be human: we need to reach out to each other across all that separates us; communication as ropes thrown across the abyss between self and other. The arts can come to our rescue when traditional language begins to fail: to sing, to dance, to put paint on paper, making a mark that says I am still here, to be touched again (rather than simply handled), to hear music or poems that you used to hear when you were a child, to be part of the great flow of life.
I remember Sean’s Swedish grandfather, who I only met once, shortly before he died. He had dementia and could barely speak. But he could still play the piano, his fingers moving up and down the keys. Embodied memory; memory at his fingertips; music flowing from him. I remember seeing an old woman half carried into a room where her siblings waited: she looked thin as a bird in winter and close to death, but then her siblings began to sing a song they knew as children, long ago. Like a miracle, she revived; her face softened and became younger, her eyes brightened, and she smiled and then she sang.
The film Alive Inside was made about a music project in a huge care home in the US. Family and carers are asked about the music the person with dementia used to love, and then this is played to them. An old man with severely advanced dementia sits slumped in a wheelchair. He drools; his eyes are half closed and it’s impossible to know if he is asleep or awake. A few times a day, soft food is pushed into his mouth. We see photos of him when he was young; strong and handsome. He loved Louis Armstrong: his daughter remembers he would dance her to school, swinging around lamp posts and singing. Someone puts earphones on the man’s head and suddenly the music from his glory days is pouring into him. His old head lifts. His foggy eyes open and knowledge comes into them. His toothless mouth splits into a beatific grin. And now he is dancing in his chair, swaying. And then this man – who doesn’t speak any longer – is actually singing. The music has reached him, found him, gladdened him and brought him back into life.
It’s like a miracle – but one that happens every day, in care homes, in community halls, in hospitals, wherever kind and imaginative people are realizing that the everyday creativity is not an add-on to the basic essentials of life but woven into its fabric. Oliver Sacks wrote that ‘the function of scientific medicine . . . is to rectify the “It”’. Medical intervention is costly, often short term and in some cases can be like a wrecking-ball swinging through the fragile structures of a life. But art calls upon the I. It is an existential medicine that allows a person with dementia to be a subject still.
If it was me, if it will be me, I want Matisse’s cut-outs and Bach’s violin partitas. I want Lucinda Williams singing ‘Are You Alright?’ in her gravelly drone, which always makes me cry. Leonard Cohen, Bob Dylan, Mozart. Kate and Anna McGarrigle’s ‘Heart Like a Wheel’ over and over again, and their swimming song. I want music I heard when I was young and music my children heard when they were young and we sang together in the car on long journeys. I want music I danced to long ago, and I want to dance again, like I did when I was young. And I want Sean to read me poems by Louis McNeice and Elizabeth Bishop – ‘the art of losing isn’t hard to master’. Shakespeare (‘Fear no more the heat o’ the sun’). Nonsense verse. Words and music to seek me out and find me, wherever I have gone.
9. HOME
‘You can go home again . . . so long as you understand that home is a place where you have never been.’
Not long after we had met, the writer and academic who chose to remain anonymous finally acknowledged that it was no longer possible for her to look after her husband in their family home.
The descent towards helplessness is uneven and unpredictable: you think you’re on a straight road towards a known destination but it turns out to be a narrow path winding its way along a cliff edge, full of pitfalls, zigzags, vertiginous views. There often comes a day when something that was being managed becomes unmanaged and unmanageable. Routines are no longer sufficient; days lose their safe shape and turn unruly and full of ugly surprises. The person with dementia may become more confused or distressed, angrier or more agitated. Their body betrays them and their memory lets them down. They need more care than a carer can possibly give – and when the carer gives that as well, they need still more, and so it goes.
But the decision that the time has come for them to move into a home is almost always profoundly painful, often couched in terms of hard necessity and bitter defeat. I had to . . . There was no choice . . . Even when it is clearly the right call, the only one, for everyone, the sense of failure is often very marked in these conversations – which are conversations about loss. Something ends: married life, self-possession, being part of the thick flow of the world. We leave home when we are young, starting our own life, making a new home for ourselves. And then we may leave home when we are old – but now it’s about the closing of something, a goodbye. However positive the change turns out to be, it marks the ending of a stage of life. The threshold is crossed; the door shuts. That was once home.
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We take home for granted until we don’t have one. It’s not just an address, a roof, bricks and mortar, comfort, a key to a door, a place to lay your head and cook your meals and welcome your friends. Home is existential: a deep human impulse and an anchoring sense of belonging and of being. Just as some biologists think that a bird’s nest can be interpreted as an extension of the bird’s brain, which happens to make use of bits and pieces of the outside world rather than electrical impulses, so the self continues beyond the barriers of the body. To make a home is a way of continuing the self into the outside world and at the same time of gathering the world safely in and wrapping it around the raw and naked self like a blanket.
My first marriage ended when my two eldest children were just two and not yet one, and so they spent their whole remembered childhood moving between different houses, with their teddy bear and panda accompanying them. Both houses were their unequivocal homes and yet I knew at the time, and they told me much later when they had come through the worst of it, that for many years they were homesick wherever they were, always filled with longing. Whenever we went away, staying in a rented house or a hotel, my daughter would methodically unpack her t
hings into the drawers and arrange books on shelves, even if we were staying only for one night (in this way, lots of things got left behind on our journeys). Sometimes on walks she would insist on collecting up all the sticks she came across to take back to her room (in this way, in the Swedish forests of our summers, walks became slow and fraught affairs). She needed to make a home wherever she might be, using as props the comfort of things. She does it still; I do it as well. Cleaning, planting, filling the fridge, laying a place at the table, lighting candles, pulling down the blinds: it’s not (only) a domestic chore but a way of feeling secure in my world, arranging stuff around me so that I’ve made my own nest.
Almost two decades ago, while I was working on a piece for the Observer newspaper, I stayed a day and a night in a care home for people who were old and in many cases had dementia. It was a clean, well-run place; the people who lived there were looked after with kindness and imagination. I couldn’t fault it. But lying in my narrow bed that night, I felt a pang of desolation at the thought that this was how my own life might end one day: in a home, but far from home.
Gerard de Vries has a set of criteria that will indicate if the time has come for him to die. One of these, which he mentions to me several times, is the need to go into a home. The care home in which his mother-in-law lives is impeccable: when I visit it with Pauline, it feels more like a boutique hotel. It is an old building in the historic centre of the city, with a park on its doorstep, a dining room which is also open to the public, light flooding in through the large windows, a feeling of airy cleanliness and order. No stench of urine here, no one wandering untended and distressed down dingy corridors. It is well staffed; there are numerous activities. All the residents (I’m slipping into the jargon – you’re not a resident at home, only in a home) are dressed in nice clothes, hair carefully done. There are flowers everywhere, paintings. This is not a private home but a publicly funded one. Those with pensions pay a part of their monthly income; those without are covered by social security, so it is open to anyone who lives with a certain level of dementia.
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