There’s a crucial distinction between losing the sense of self and losing the self. One of the reasons the philosopher Ronald Dworkin supports those who chose death should they have advanced dementia is that at this point ‘they are ignorant of self . . . Because they have no sense of a whole life, a past joined to a future . . .’ The value of their life is diminished or even destroyed, because ‘value cannot be poured into life from the outside, it must be generated by the person whose life it is, and this is no longer possible’.
Dworkin makes a clear distinction between the inner self and the outer world; he believes that meaning is generated from within. Individuals are their own meaning-generating world. But a person, as Bishop Desmond Tutu has it, depends on other people to be a person. And the philosopher Martin Buber, best known for his philosophy of dialogue, coined the term widely used by ethicists: ‘I–Thou’. ‘Speech does not reside in man,’ he writes, ‘but man takes his stand in speech . . . Spirit is not in the I but between I and Thou. It is not like the blood that circulates within you but the air in which you breathe.’ So we live in a ‘shared space of meaning’: language, which puts everything ‘out in the open’, creates a public space. The mind is not only inner; the boundaries between the inner and outer are porous. ‘It is messy and fascinating to be minded people in the world.’
It is this ‘I–Thou’ that Naomi Feil was entering, or trying to enter, with Gladys Wilson; the air they briefly breathed together. Although the person with advanced dementia cannot form the most basic narratives of daily life and all coherence of the self has gone, although words no longer make sentences, syntax is gone, words for objects lost and one thing no longer follows from another but falls apart in fragments which, like Humpty Dumpty, we cannot put together again, they still precariously exist in this ‘I–Thou’, in this dream of a common language.
In the ‘ruins of grammar’, in the ‘forever in my mouth/and forgetting’, in the ‘dirty taste of gone’, tiny bubbles of memory and memory traces come winking to the surface. Pronouns are often the last to go. ‘You’, ‘me’ and ‘I’ – that small, vital centre in Tommy Dunne’s concentric rings that he pulls up to show me. ‘I am.’ Until the very last stages there is still an I in dementia. The eighteenth-century satirical writer Jonathan Swift anticipated his own psychological deterioration, now widely thought to be dementia, long before it happened (‘See how the Dean begins to break . . . That old vertigo that’s in his head/Will never leave him till he’s dead . . .’). For him life was a ‘dark and desolate farce’ and the bulk of his inheritance went to founding an institution for ‘as many lunatics and idiots as possible’. The slow loss of his faculties made his final years painful ones; his mind failed, his sight failed, his speech failed until he was barely able to utter a word, and yet in the year before his death, he could say: ‘I am what I am, I am what I am,’ and the last words he uttered were, apparently, ‘I am a fool.’
Gladys Wilson can no longer say, ‘I am’; the few words she utters in the film are memory traces: a line of the song she must have sung over and over again.
Jenni Dutton’s mother, a tiny figure lying in her bed, probably could not say, ‘I am.’
Nor could Rebecca Myer’s mother in her final days in the home. She could no longer recognize her husband or her children; she was struggling to swallow. Because Rebecca’s father could not bear to take the decision to let her die, they inserted a PEG tube to feed her and keep her going: she wasn’t really living, though; she was dying, very slowly dying.
William Utermohlen was also, in those last years in a care home, beyond language – which for him had been the language of art. When he tried to write his own name, the words broke up, the letters toppled into each other. Syllable by syllable, William Utermohlen is disappearing. The laceratingly moving self-portraits are done with now. Over several heroic years he had confronted his own deterioration and portrayed himself as broken, mutilated, his world violently and dizzyingly slipping away from him. In making these works, he was attempting to ‘fix an image of the self’ and ‘calling forth his double’, like seeing himself in the mirrors that he became so scared of his wife hung drapes over them. This double is a ghost, or a shadow, or a man so existentially lost that we can hardly bear to meet his gaze. He sees himself with a saw in a premonition of the autopsy that will disclose his wounded brain; through bars; in disintegrating space, with one huge ear, his face dotted over, his nose like a beak, a vanishing object, the lines getting fainter, the world emptying around him and everything that anchored him gone. He erases himself. He is still there, faint lines that fade to white. He is nearly gone, a scribbled death head with eyes that remain his own, staring out at us from the terrible demolition of the self.
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Once people with dementia can no longer speak or communicate, reaching out to us from their darkness, how can we imagine their state or try to alleviate their suffering?
Illness has always been a subject for art and, over the last few years, as the population ages and the number of those who have the illness dramatically increases, dementia has entered our culture and our consciousness so quickly it is hard to keep up. From being hidden and largely invisible, it is at last talked and written about, and the uniquely cruel, distressing and destabilizing nature of its tragedy acknowledged. John Bayley wrote an elegy about Iris Murdoch’s loss of memory; Sally Magnusson wrote her groundbreaking book about her beloved mother’s dementia; Timothy West has been moving about the Alzheimer’s of his wife, the actor Prunella Scales. Terry Pratchett was heroic in his openness about his own dementia, both funny and sad. The floor of my study is piled with accounts by people living with the illness and memoirs by those who cared for them. Harrowing, funny, poignant, harsh, they crack open the locked room. Light floods in where once there was secrecy, shame and terror.
But most of these accounts – shocking, touching, candid, empathetic – are still, inevitably, external. They are often written by people at the start of their illness or by carers, the intimate observers of the process of self-loss. The final stage of dementia thwarts the attempts to describe its internal experience because it is beyond language. Art, however, can try to enter the silent darkness. I can come up with very few dramatizations of dementia before the last fifty or so years. Sometimes I have wondered if Haydn’s ‘Farewell’ Symphony – in which one by one the musicians lay down their instruments and leave the stage, music gradually thinning into silence – is an evocation of it. There is, of course, the melancholy Jaques’s seven-ages-of-man speech in As You Like It (starting with the ‘infant, mewling and puking’ in its nurse’s arms and ending with a ‘second childishness’ of decrepitude: ‘sans teeth, sans eyes, sans taste, sans everything’). Or King Lear, who endures a storm that is both literal and psychological, whose identity crumbles and whose words fall away, and who dies. Friends have pointed to the Aged P in Charles Dickens’s Great Expectations; maybe Mr Wodehouse in Jane Austen’s Emma; perhaps Don Quixote.
Recently, however, depictions of dementia have become so common in art that they are almost a trope. Films such as the Oscar-winning Still Alice have characters with Alzheimer’s at their centre, as does the beautiful and heartbreakingly joyful Disney animation Coco. But these are all realist texts that remain stable in spite of their subject matter. They can’t resist the notion of plot, order, a single coherent self. Dementia might be the subject, but it does not disrupt the narrative, or do away with it. During dementia’s end-game, a person goes to a place where we cannot follow them and can barely guess at. The bursts of lucidity that those with catastrophic memory loss can sometimes have are like bright, sharp flashes of lightning over a blasted landscape – or perhaps even that is wishful thinking and they signify nothing at all. We hang on to meaning and insist on it. The child learns to shape sounds into words and make boundaries around things; they tell stories and impose a narrative pattern on to chaos. Only in this way can t
he flooding world be comprehensible and endurable. But the person with dementia unshapes, undoes, disintegrates, unravels – from the formation of the self and language to its drastic unmaking. Words become mere sound again.
The art that attempts not simply to observe and describe but to inhabit that desolate place of self-loss edges us towards that darkness and silence and absence and becomes like an emotional modernism in which there is no central narrator, no coherent story, where things are fractured and the safe ground slides away beneath our feet. Exploring the experience of dementia and the loss of memory can bring about a powerful and vertiginously unsettling way of thinking about time, place and identity, where the notion of a stable reality and a single self breaks apart. It’s a de-creation, in which words and meanings are unmade – an apocalypse of the self. Instead of observing the experience of loss from the outside, we who still possess our selves are given the chance to imaginatively enter that world, briefly experiencing its terror and loss.
In 2015 I went to see Florian Zeller’s play The Father (translated from the French by Christopher Hampton) and was completely winded by the experience. Its central character, who when I saw it was played with gusto and heartbreak by Kenneth Cranham, has Alzheimer’s. It starts calmly, with a comfortingly ordinary bourgeois living room: bookshelves, table, armchairs, pictures, an old man talking to his daughter. We realize that he is losing his memory but at first we are simply observing an all-too-familiar family drama. Within minutes we are wrong-footed; the ground gives way. Whose flat are we in – his or hers? Is she his daughter and, if so, who is this other woman who says she too is Anne? Who is the man who says he is Andre’s son-in-law, and why are there two of them? Was Andre a dancer or an engineer in his professional life? Why does the dinner of roast chicken keep repeating? Where is his watch? Is time on a nightmarish loop, is it slipping away, or is it more like a cancerous cell dividing and mutating?
We never know the answers because senselessness and terminal confusion are the point (‘It doesn’t make sense,’ says Andre, over and over again). Between short scenes interspersed with increasingly jarred and stuck music the furniture on the stage gradually disappears, just as the furniture of the old man’s mind is broken up. In the end there is just a white-sheeted bed in a white-painted room, an old man calling for his mother. Here is the radical slowness of death reaching its end point at last. The audience both inhabits Andre’s mind and at the same time tries to decode its erratic signals, for The Father – beautifully, heartbreakingly and exhilaratingly – continually reminds us of our need to make a story out of chaos while brutally undercutting it. Like Bernlef’s excruciating Out of Mind, for example, or like Kazuo Ishiguro’s The Unconsoled, it evokes the painful struggle with language and the thwarted attempts to communicate that which lies beyond communication, the impossibility of capturing the ‘de-wording, de-languaging, de-remembering’.
Language is also memory; dementia brings a double silence. The death of the self is the death of an entire world. Beta-amyloid plaques and tangled brain neurons; lifeless grey patches spreading through glorious colours of the working brain. Words seep away like blood. Hidden people, in that cave where light doesn’t reach, and from which no signals return to us. We can only stand at the threshold of the silence, the darkness and the absence.
I think of the people I have known and loved who have spent their last years in the hidden land of dementia from which none return. We come into the world with nothing and gradually we build up the vast, rich palace of the self: language and knowledge and relationships and belongings and experience and memory and love. Above all, memory and love. All these fall away as life returns to that state of nothing. When we cannot even say ‘I am.’ When we cannot.
Yet still the old man waves his fork into the air. Perhaps he hears music.
13. SAYING GOODBYE
‘What is loss? Loss is a sleeping giant.’
My father had retired late, just as his illness was starting to take a grip on him. He didn’t have time for the retirement he had planned: working in his garden, wandering in the woods and walkways near their house, tracking butterflies and collecting the seeds of wildflowers, travelling with my mother to Corsica, where they had had many holidays. Instead, he entered a kind of twilight zone, bit by bit slipping away from the life he had planned for; knowing and then mercifully not knowing what he was leaving and what he was losing.
Dementia is a particularly long farewell to the self. With most illnesses, death comes quite swiftly. With dementia, the flicker with which life ends is excruciatingly slowed. People who live with it may have plenty of time to contemplate their own going; their carers have even longer, often many years of imagining and preparing and rehearsing. There’s an anticipated, ambiguous grief; a premature mourning of the self, or of the beloved other.
During dementia’s last stages, a beloved person may be there and yet absent, a powerful reminder of the self’s loss. Dismantled in the drawn-out end-game, yet they remain – like apparitions, haunting us and themselves: the figure in the mirror who they no longer recognize or perhaps recognize as their dead parent, their ghostly other. Of everyone I’ve talked to, only Patricia Utermohlen said that her husband’s real death happened before the actual one, at the point at which he laid down his pencil. This was the vanishing line. Nevertheless, she did not stop visiting him, and nor did his old friend Ronnie Carroll.
Pauline, who describes her mother as ‘the living dead’, imagines the sadness she will feel when she is finally gone. ‘What will I say at her funeral? That she tried to make the best of it. I’m still sad she couldn’t do more.’
To mourn someone who is still alive brings a particular, complicated pain. And often it brings guilt: to mourn someone who has not yet died is to consign them to a kind of death.
Disie Johnson gave away her husband’s paints. She can’t bring herself to give away his beautiful suits, though he will never wear them again.
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Rebecca Myers describes the final years of her mother’s life as ones of ‘mourning’. Her mother died a long fourteen years after her diagnosis. She was struggling to swallow and they put in the PEG tube that kept her alive: ‘and once the tube is in that’s giving her food, it’s very difficult to remove it. It becomes an active decision.’
Shortly after her mother went into the home her father was diagnosed with multiple myeloma, a cancer of the blood. He had to have a marrow transplant and was very sick. At the same time, Rebecca’s husband, a GP, was hit by a tipper truck and both of his ankles were crushed. He had multiple surgeries over the following years and lost his practice. There was trouble over the funding of her mother’s care, which was judged to be social, not medical. Now they were told they needed to pay £2,000 per month, money they did not have: her father had been spending all his money after his cancer diagnosis (her mother died before their appeal could be heard). They were in a sea of troubles. Rebecca had to return to work. Her mother was at the end-stage; she needed end-of-life care. It was suggested that a DNR should be put in place and nature should take its course – but even now, ‘it was a tough decision’ and one her father struggled to come to terms with. At last he agreed.
Just before Christmas her father was rushed into hospital with kidney cancer; her mother was rushed into A & E, where she was given antibiotics – ‘But why? Why? My mother was in hospital; my father was in hospital; my husband was on crutches; and I – well, I was a madwoman.’
Sometimes, we outlive our selves.
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Jo and her team of ‘investigators’ are acutely aware that sometimes people need to be let go. ‘If they are at their end,’ says Jo, ‘we will know from their story.’
She tells me about a Somalian woman who was clearly at the end of her life. She knew it herself: she kept trying to pull out the tubes that were keeping her alive. But her son wasn’t
ready for her to die. She had been an amazing woman, an amazing mother – and moreover, when she died, he would be the head of the family. ‘He needed time,’ says Jo. ‘So we gave him time.’ They kept the tubes in, kept her going, and after a week he returned and said: ‘I’m ready.’
‘It’s really hard to have that conversation. It’s really, really hard to say goodbye.’
Research commissioned by the Dying Matters Coalition in the UK in 2018 showed that, of the people interviewed, nearly 70 per cent said they were comfortable with talking about their wishes for end-of-life care with the family, and only 29 per cent had discussed their wishes. And while most people believe it is important to draw up an Advanced Care Plan, only about 10 per cent actually do so.
A survey conducted by the Conversation Project in the US in 2013 demonstrates how this reluctance to talk about dying and death is universal. Nine out of ten Americans believe it’s important for them and their loved ones to talk about end-of-life care but only three out of ten have actually had these conversations. The reasons people gave for this were several: they aren’t sick yet, the subject makes them uncomfortable, they don’t want to upset their family, it’s not the right time, they are waiting for someone else to start the conversation . . .
It’s difficult to talk about dying, about becoming dead. To mourn is to know what one has lost – but to mourn what one has not yet quite lost is to be in a kind of limbo.
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Tommy Dunne says that not a day goes by when he does not grieve for the Tommy Dunne who is no more. ‘I’ve never been scared of dying. If I was told I had three days left to live, I don’t think I would be scared. But I’m frightened when I look in the mirror and don’t recognize myself. And I miss the Tommy I was.’
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