In one hospital, a nurse tells me about the man with dementia who doesn’t have any visitors and who has just spent his eightieth birthday there. No one visits him. The nurses asked him what he most wanted and he told them that when he was a boy his favourite treat was the treacle tart his mother used to make. They bought him one from a shop down the road, put candles on it, and nurses, carers and other patients gathered round to sing ‘Happy Birthday’ to him. He wept; everyone else wept; I nearly wept when I heard the story. Small acts of intimate, daily kindness that revive the sense of collective humanity and of the enduring self.
* * *
• • •
I spend the day with Jo, the dementia lead at a large hospital trust, and her colleagues Lucy and Aishlene. Jo was one of the first people to contact us about John’s Campaign, and calmly, quietly, resolutely, she has put the principle of welcome for carers into practice across every ward in all the hospitals in the trust. Self-deprecating and humorous, she is an invincible champion for people who live with dementia. In the hours that I am with them, in their office, on their rounds, I learn something of what their job entails. It is both simple and painfully, complicatedly hard.
Rowan Harwood – the Nottingham professor – once genially rebuked me, saying, ‘There’s more to it than just being kind, you know,’ yet in a sense, what I witnessed all through that optimistic day was precisely kindness. But kindness isn’t easy; it’s never just kindness. It involves a scrupulous vigilance to individual needs; a nimble, improvisatory imagination; a common-sense and patient determination to find the unique and precious person who may be obscured by their dementia. The team’s job is one of hope (which is also how Sube Banerjee describes his). They believe that their patients are legible beings and, however confused and chaotic, however violent or passive or apparently incoherent, they possess a meaning and a self. Jo and her team always have faith that they can crack a person’s code and find their way through the apparently impassable muddle and distress to reach them. A large part of their job is to understand each patient as an individual, with a long history, a set of relationships, unique needs and desires. Jo calls herself, Aishlene and Lucy ‘investigators’: they find out the person’s work, family, interests, likes, favourite foods, any of the triggers that might bring them back. This bringing-back can seem miraculous – like someone returning from the underworld.
‘We are on the side of the patient,’ Jo says. ‘You have to learn to understand what they are telling you. Nobody can say our patients don’t communicate. Oh, they communicate! They might not be able to use words, but they can throw things, spray water over the nurses, shout. They don’t lose their self, just their ability to communicate. They still have feelings, they still have stories. They are still there. They partly can’t communicate that, and they partly can’t conceal it.’ This sense of being both hidden and exposed makes them very complex as patients, and the task of Jo and her team is intricate and subtle. ‘And fun,’ adds Jo. ‘They’re more interesting than most patients and you have to be able to have fun; you have to love difference.’
I go round the wards with Aishlene. We talk to patients, take their hands, look at their photos, meet their relatives. Aishlene gives them pictures she has printed out. A cricket team. Flowers. A familiar face. One of them loves reggae, and she puts on music; he half dances in his chair, shuffling his feet on the floor.
Then we sit high up in the labyrinthine hospital, in the small room that is the headquarters of their investigations. Several desks and computers have been inserted into the small space. The shelves are crammed with squeezy pigs, squashy balls, aroma stones, soft toys and twiddlemuffs. The kettle boils. The phone rings constantly – relatives who want advice and reassurance. They tell me stories about their patients and I’m struck by how they like them, taking enormous pleasure in their eccentricities and difficult behaviour. Even their rudeness and violence are seen as symptoms that they can, with ingenuity and imagination, resolve.
* * *
• • •
The stories they tell are ones of salvage: a man who was continually agitated is now calm because they can show him picture books that will take him back to his past. The couple who cared for each other devotedly and who were admitted to hospital together when the husband was in his last days so they need not be separated. Another couple who died within a day of each other, the husband lying beside his wife as she breathed her last, and then it was his turn. The severely depressed patient who felt he was in prison there and so they wrapped him up, put him in a wheelchair and took him into the streets. (‘You should have seen his face: he was in awe of the air!’)
The woman who was always crying out and distressed. Her family said that it was normal: she was always like that. ‘It’s not normal to be always agitated. She was telling us something. Eventually we discovered that the woman had arthritis and it was uncontrolled pain that was making her so upset. We have given her pain patches and now she’s out in the corridor, playing bowls.’
Or the man with seventeen adored grandchildren who found great solace in the baby dolls that Jo and her team gave to him to look after.
The woman with red glasses, one lens missing, cursing like a trooper and no way that anyone is going to tell her what to do, using her soft-toy dog like a whip.
The woman who had never been seen naked, even by her own husband, with whom she’d had three children: ‘She was refusing to have a shower and no wonder. At the very least, she shouldn’t have a male nurse.’
The man who loved numbers and was very agitated: ‘We gave him sums, which we had deliberately got wrong, to mark.’ The woman – stick-thin and floridly psychotic – who thought Tony Blair was trying to kill her. She would spend her time crouched under the nursing station, taking cover. ‘She was very religious so we took her to the chapel where she had a rapturous evangelical moment, crying out: “Praise be to God, and where am I?”’
People with dementia, they tell me, never do what you expect. ‘You have to go in at a deeper level. You have to think outside the box. And then, just to see the difference – any difference. To see someone smiling when you’ve been told they never smile. Just to get some of what is left inside.’
So there they go, walking down the corridor with a photo album, a bottle of wine, a zoo of soft animals and twiddlemuffs, with hope and determination. The investigators.
‘Dementia is hideous if it’s managed badly,’ says Jo. ‘But it needn’t be hideous.’
I left the hospital feeling moved but also strangely exhausted, like there was a thick sludge under the brightness. Optimism in the face of so much distress and disorder is a tiring business, a question of will and endurance: never to give up.
There is still a self, Jo says. They are still here.
* * *
• • •
It is possible for a hospital to be a place of safety and kindness for a person who is frail and confused and full of fear, where a patient is also protected as a person, cherished as a human, and where their sense of self is rediscovered and salvaged. But – to state the bleeding obvious – it is often not like this. It can be a place where a precarious sense of self is finally extinguished and the social being is obliterated.
No matter how resourceful and kind the nurses are, how good and clear-sighted the doctors, the needs of an individual can be easily lost in the vast, intricate mechanics of healthcare. Rules that grow up for good reasons become muscle-bound and intractable; effective management can harden into sclerotic bureaucracy. Staff are pinned to their work stations by computers and forms and boxes to tick. There are drugs and operations and meals and regimes and machines beside each bed; there are crises that trigger swift medical responses – and all the while, the slow-motion crisis of a mind in the process of being picked apart goes on silently, invisibly, in hundreds and thousands of bays: men and women living become men and women dying. Going and going and gone.
> To have dementia ‘is physiological, it’s psychological, it’s social,’ says Sube Banerjee. ‘It doesn’t fit into the structures we’ve created. We’ve got to think complex. We’ve got to change the culture. We’ve got to know what good looks like; it’s our business, everyone’s. And the perfect time is always now.’
Hospitals have traditionally been places of cure. Sometimes people can’t be cured. They can be cared for, recognized, seen not just as bodies but as embodied minds. In every country, it is increasingly understood by healthcare staff that hospitals are hazardous places to be for people with dementia. Huge efforts are being made to reduce the risk they pose (which is where John’s Campaign comes in). But the wheels of change turn slowly and, in the meantime, intimate tragedies unfold.
12. AT THE END
‘We possess art lest we perish of the truth.’
I used to see an old man in shabby clothes standing at the busy junction near our house in north London. He held in his hand a piece of cutlery (usually a fork, I think), which he waved high in the air as the cars and buses roared by, sometimes with enormous energy and sometimes quite calmly.
He didn’t seem unhappy, but he was certainly a solitary figure, unaware of the people who passed him by. He was in his own world. I assumed – rightly – that he had dementia. Then he disappeared. The obituaries that followed revealed that he had been a psychoanalyst and brilliant musicologist whose research had added significantly to our knowledge of how Beethoven and Mozart composed their music. Only then did it occur to me that perhaps with his fork, his spoon, he had been conducting the traffic to the music in his head. This image has always haunted me because of the great disconnect between what we all saw – a demented old man weaving around on the pavement – and what he was experiencing, which I like to imagine was both the music of the composers he had so loved and also a sense of centrality and of control over his world.
No one comes back from the land of advanced dementia to tell us what it is like there. Like the pulsing light on a sonar screen, they dim until they can no longer be traced, and we can’t imagine what they are experiencing, there in the cold, deep darkness. The old woman lying in bed next to my daughter, who shouted the same terrified words over and over again: was she vividly experiencing a past trauma or had her mind simply snagged on a stump of memory and stuck there? The woman who stumbled towards me at the care home, repeating: ‘Hymns of comfort, hymns of comfort’ – was she distressed, or were the words separated from any meaning? When my father joined in with ‘I must go down to the seas again’, I have no idea if he was seeing in his mind the spume flung off waves, the sea mist and the white sails shaking, or if these words were traces, just the last random sparks thrown out by a dying mind.
To think about the final stages of dementia is to think about what it is to be human, and it is to acknowledge the essential loneliness and separation of the individual mind. We spend our lives forging relationships with others, trying to imagine ourselves into their lives, trying to communicate our own feelings – throwing frail bridges across the great divide of self from self. To fall in love is to believe that we can be known, truly known, by someone else, and that we can in turn know them, feel with them, and through overwhelming attachment and desire merge: two stories streaming into one. (To fall out of love is to withdraw into the defended self again, to pull up the bridge.) We may reach out, strain towards each other, tell our stories and spill our guts, give secrets as gifts, but we can never enter into the mind of another or know what the world looks like through their eyes, what their particular pain feels like, on the skin or in the heart. In the end, we’re mysterious to each other.
Towards the end of my time with Jo and her team of dementia nurses, Jo asked me if I’d seen Gladys. I didn’t know what she meant or who Gladys was. She sat down at her computer and searched for the site, then pressed play. The four of us watched the short film that Jo thinks every nurse – and every person – should watch. In it, Naomi Feil, founder of Validation Therapy, which began in the US but is now practised all over the world, is shown with Gladys Wilson, a woman with severely advanced dementia who is now unable to speak. Validation Therapy is about communication through empathy, about entering the world of the other. ‘Their desperate need for connection is all inside now,’ says Naomi Feil. ‘If the person is all alone, even if they’re very, very deteriorated, there is a longing for this kind of closeness.’
We see Gladys Wilson sitting in a tall-backed chair, fidgeting her fingers on the armrests. There is a crocheted blanket over her lap. Her head is back, her mouth half open to show her two remaining teeth, one eye is shut and it is impossible to tell if she is seeing anything. Naomi Feil approaches her, crouches beside her, calls her by her proper name – Mrs Wilson – and takes her restless hand. Gladys Wilson holds on to Naomi Feil’s hand, pulls and shakes at it, rocks back and forth. There is a single tear on the old woman’s face and Naomi Feil wipes it away very gently, then strokes Gladys Wilson’s face with her fingertips – ‘where the mother usually touches an infant’ so that ‘every cell remembers that touch’. She is ‘no longer alone’. Gladys Wilson’s eyes are fully open now, and she is staring with a kind of desperate intensity into the face of the woman who is asking her to ‘let me in a little bit’. One hand bangs repeatedly on the armrest and her face works. Then Naomi Feil begins to sing to her, ‘Jesus, love me’ – because she knows that Gladys Wilson has always been very religious. She is still stroking the old woman’s face. The banging hand gradually falls into rhythm. When Gladys Wilson moves, so does Naomi Feil, mirroring her; when the banging gets faster, so does the singing, and when it slows so does the song. And then Gladys Wilson pulls the therapist to her so their faces are pressed together, like mother to child. Now, when Naomi Feil sings, Gladys Wilson joins in. ‘He’s got the whole world in his hands.’
I watch this poignant little film with Jo and her team, and I watch it again when I return home and I watch it once more before writing this. It’s beautiful: it recognizes the person trapped inside the failing body and mind and is an act of profound humanity. It’s like a trickle of clear water on parched land. It’s also terrifying: I can scarcely bear it. What is Gladys Wilson feeling as she clutches at the therapist’s hands, leans forward, tears on her cheeks. Joy? Relief? Peace? Utter despair? For a brief moment the old woman is touched, embraced, stroked, crooned to, loved like a tiny child is loved. Then she is let go. She sinks back again in her chair. Her eyes close again and her fingers scrabble at the armrest. I am left with a sense of squeamish disquiet. Was it purely good to briefly rescue her from her existential loneliness, or is it also a kind of torment?
This extraordinary act of recognition reaffirms the humanity not only of the old woman but of the therapist who joins her. We start by seeing Gladys Wilson from a distance, a wrecked, twitching figure in a chair, and we end by looking into her eyes, watching her cry, seeing her as a subject, not an object; a person, not a thing. Naomi Feil treats her with respect (she calls her Mrs Wilson, asks for permission before she comes close and embraces her). Respect means to look again. So we look again at Gladys Wilson, and we look again at all the people that we usually look away from: don’t see, don’t recognize. That man shouting in the street, that woman helpless in the bed, the person slumped in a chair, wearing a nappy, whose head is tipped forward, all those old, frightened, contorted faces that have such power to horrify us. We sometimes talk of people with very advanced dementia as animals or vegetables, precisely because it is much easier than acknowledging that they are one of us. It is painful to accept that we too might become like that, and even if we don’t, even if we happen to be one of the lucky ones through no virtue of our own, these old and confused people show us what it is to be mortal, bodily and at the mercy of strangers.
The mystery of what goes on inside the mind of another person becomes terrifyingly impenetrable in the final stages of dementia; twilight to pitch dark at the vanishing line be
tween life and death. Scientists can scan brains and measure damage but they can’t show us what it is actually like to be in a world where time has ceased to have any meaning, where the past does not connect to the present and where the present does not lead to an anticipated future. History is lost and expectation has gone and now is all that remains; now and now and now.
Nor can they show us what it is like to have no language left – or the barest scrap, a remembered word or phrase still lodged somewhere in the shattered memory, like a survivor of the wreckage.
(One of my father’s carers, in his last months, was French. She said to him one day: Ça va, John? And he smiled at her and said, Ça va très bien, merci – he must have chanted the phrase when he was a schoolboy sitting at his wooden desk, wearing the words into a groove of memory, and now it came back to him, miraculously finding its way through the self’s shattered landscape. Is this memory, or memory’s trace?)
Carol Gilligan writes: ‘To have a voice is to be human. To have something to say is to be a person. But speaking depends on listening and being heard; it is an intensely relational act.’ Gilligan defines voice as ‘something like what people mean when they speak of the core of the self’, so that ‘speaking and listening are forms of psychic breathing’. Home is where they speak your language; loss of language is an exile and a homesick separation from the self. Words are not like a skin over meaning but like a bucket dipped into a deep well. To speak ourselves is to make a narrative, and this narrative self is what gives us our coherence. We lose words, we lose the plot. Words fail us. At first they drop away individually, like pebbles off the mountain slope. More and more, until the sinister trickle turns into an avalanche of loss, meanings plunging away, a great roar of silence. At what point do we lose ourselves?
The Last Ocean Page 19