The Last Ocean

by Nicci Gerrard

  ‘The thought,’ says Gerard, ‘of ending my life like Pauline’s parents is quite appalling to me. We knew we were reaching the age when we had to face such questions.’

  I am impressed, unsettled. The present self is making a decision about the future self – but what if the future self does not agree? What if, when they arrive at this conjectural time of diminution, wreckage and loss, they are content and have no wish to die?

  They nod. ‘It’s a pre-binding of the self,’ says Gerard. ‘Just as countries have constitutions.’

  ‘So if the future you,’ I ask, ‘says that you want to live after all – what then?’

  ‘If Gerard is able to communicate his wish to live, no doctor will perform euthanasia. What we are talking about is the discussion we need to have in the limited time slot between diagnosis and the later stages of Alzheimer’s,’ Pauline replies calmly. ‘Then I’ll help him by reminding him of his past self. If we let that opportunity go, in the later stages of Alzheimer’s only the option of refusing treatment will be available. Because Gerard has appointed me as his representative, I will point out to the doctor that in these circumstances that is what he – his former self – had wished.

  ‘But,’ I say. ‘But could you?’

  ‘I take as my example Odysseus and the Sirens,’ Gerard says. ‘His sailors bound him to the mast of the ship and he told them that however much he cried out, begging to be released, they should not do it.’

  They look at me with kind expressions.

  ‘We have to love each other a great deal to do this,’ says Pauline, and I’m reminded of how a friend said to me recently that she would be unable to end the life of her mother, who has advanced dementia, because they had a difficult and damaging relationship and she does not love her enough to kill her.

  So Pauline and Gerard have chosen to write a statement, each on the same day, stating their conditions, which are basically the same, and they have discussed their statements with their doctor, to whom they reconfirm their commitment every year. They have named each other as their first representatives and Pauline’s daughter and Gerard’s son as their second.

  Gerard says that writing this down is lifting a burden from their children: ‘It’s not their decision; you are removing the burden of the very painful decisions that they would otherwise have to make.’ The crucial thing, he says, is that he is deciding under certain conditions that he does not want to live. He is asking Pauline to grant him that wish; he is asking the doctor. ‘It’s a request.’

  They are tranquil and stern, talking about the way they want to die, very sure that at a certain point a life is ‘completed’ and fulfilled: you cross a line, which is not the line that separates life from death, but the self from its own self-knowledge. ‘Identity is not a kernel inside yourself; what we call our “identity” is the outcome of our actions, decisions, our personal and professional life, not their source. One’s “self” is a network of social relationships, all one’s attachments. The idea that identity is something in us, inside us, is part of a Christian heritage. We know as we get older the networks shrink. If they shrink beyond a certain point, your life no longer has meaning.’

  * * *

  • • •

  On the opening page of Admissions, a wry and elegiac account of his life in medicine, the neurosurgeon Henry Marsh writes of the suicide pack he keeps at home, ready for when he is diagnosed with a disease such as dementia. He sees himself as a ‘transient electrochemical dance, made of myriad bits of information’, and his work has continually forced him to confront the changeability of personality because of damage in the brain. He wants to die before this happens to him.

  Hugo Claus, one of Belgium’s most renowned writers, best known for the novel The Sorrow of Belgium and his caustic portrayal of his country, was diagnosed with Alzheimer’s disease in his late seventies. On 19 March 2008, in the Middelheim Hospital in Antwerp, he died by euthanasia, choosing the time and the place of his death. Friends said that he wanted to depart with dignity and pride. ‘He left us as a great glowing star right on time, just before he would have collapsed into a stellar black hole.’

  On 20 May 2014, Sandy Bem, a Cornell psychology professor in her sixties, took her life after careful preparation. She was a person whose identity was intimately entwined with her capacity to think and to write, and her diagnosis of Alzheimer’s filled her with terror at the prospect of becoming ‘hollowed out’ by the illness, with no memory or sense of identity. She also hated her powerlessness in the face of the illness: ‘She wanted to squeeze in as much intellectual and emotional joy as she could before she died, but she wanted to make sure she didn’t wait too long. She needed to be engaged enough in her life to be able to end it.’ It is extraordinarily difficult for one’s body to die in tandem with the death of one’s sense of self; she made a vow that she would take her own life before she lost this sense. She kept a journal that tracked her decline, and she talked to her ex-husband, who had remained her close friend, and to her children, telling them of her decision. ‘What I want,’ she typed in her journal in an emphatic boldface font, ‘is to die on my own timetable and in my own non-violent way.’

  She read books to find out gentle ways to die, she continually reaffirmed her decision to take her own life, she became a grandmother, which gave her great joy, she spent much time with her ex-husband, and she gradually declined, until it became clear that the suicide window was closing and, before long, she would no longer be able to make a decision about ending her life. And at this point she chose a month – May, when the world would be beautiful again, after the winter – and a date, Tuesday 20th. She wrote her death-day on the calendar that hung in her kitchen. She was deteriorating rapidly: a time came when she asked her sister who that woman was who’d just been with them. She was Sandy’s daughter. Two days before the date she was to die, her family held a party for her, full of reminiscences about her life. (‘Did I really do that?’ she would say, pleased.) On Tuesday, 20 May, just as she had planned, she took her drugs of choice with a glass of wine, her ex-husband sat with her, and soon she fell into a sleep. The family were summoned and they watched her breathing and then they watched as the breathing stopped.

  The psychiatrist Paul Wolfson did it alone. When he was diagnosed with a rare form of early-onset dementia that erodes the ability to think and speak he was sixty, happily married to his second wife, Lore Windemuth, with two small children. Over several months, he and his wife recorded their discussions about his illness, his slow and relentless decline, their radically altered future. He dreaded going into residential care but equally hated to think of himself still at home, his two young children seeing him ‘pissing and shitting’, and a carer there to ‘contain’ him. He foresaw the time – coming towards him swiftly – of not recognizing his children, not caring about them, not caring about his wife, ‘only caring about myself . . . It’s not brilliant, is it?’ And so, aged sixty-one, he took his life. He did it with great thought. His wife took the children out for the day and when she returned he was dead. On the table beside him was a photo of his parents. He had left flowers for her and a Valium on her bedside table. So he departed from those he loved, in an act of generous love.

  * * *

  • • •

  I have long believed that for many people, especially those living with dementia, life lasts longer than it should and becomes a cruel burden both for the subject and those who care for them. We should be better able to choose when to take our leave. Yet against the calm certainty and rationality of Gerard and Pauline, the decisiveness of Sandy Bem and Paul Wolfson, I have to set the tiny, dashing figure of Theresa Clarke, a woman with dementia who crackles with the desire to live life to the hilt and possesses a radical optimism that can seem like a kind of fury.

  The first time I meet her is in Heathrow Airport. My train is held up and I am late to arrive. As I hurry to Arrivals, a miniature woman with silver ha
ir races towards me, clattering a bag behind her, her eyes glittering, one hand lifted, on her face a look that in its intensity of excitement and fear is almost feverish. I hold up my hand in greeting and she spins to a halt, gives a full-throttle laugh, flings her arms around me. She has flown, unaccompanied, from Antrim to talk at a conference about dementia that is to take place the following day. I am small, but I tower over her. And I’m bowled over by her: her courage and determination, the way she wants to immerse herself in life, her refusal to give up on herself or be scared.

  Theresa is the daughter of an Irish labourer, the eleventh of thirteen children, educated in the school of hard knocks. Though her father died when she was four, she remembers him vividly – running to meet him, ‘and he would put me on his shoulders and away we’d go’. After his death, the family were very poor. Her mother – all these years later, Theresa still talks of her with a fierce protectiveness – worked in a munitions factory and as a cleaner. But Theresa remembers her childhood as ‘full of fun’. If her mother had a spare ‘roughness’ (a coin), she would take them all to the seaside for the day or take a tram to the end of the Falls Road and have a sandwich. She remembers being interested in everything: she was a ‘tomboy’, a footballer. The boys would call at her house and say, ‘Can Teasie come and play?’ She tells me this and I can picture her as that child, wiry and quick, fierce with hunger for life.

  She always wanted to be a nurse, and she always wanted to travel: ‘A new country, a new job, new people: I’ve always been a seeker.’ She has worked as a psychiatric nurse and a midwife (the ‘most glorious job’), and she has lived in Cyprus, Australia, in Arctic Canada, in America. She loved to camp, to hike. She lived in an ashram in India for seven years. ‘I wanted to be free. Twice I was engaged – people expected you to marry. But I’m so glad I held on to my freedom. A free bird.’ She worked on social justice projects (‘standing for myself, standing for others’), wrote poetry, was a bit of a hippy, a bit of a mystic. It seems to me that she’s a woman who has always hurled herself at experience, chin up, plucky (as Helena says of Hermia in A Midsummer Night’s Dream, ‘though she be but little, she is fierce’). Her mother once told her that she had ‘a heart like a lion’.

  Ten years ago, Theresa Clarke’s wandering ended. She came back to Northern Ireland and lived in the Glens for a few happy years with her beloved dog, moving to Antrim when she had heart trouble. In 2010, she was diagnosed with dementia. But she already knew. ‘Oh yes!’ she gleams. ‘I knew just what it was. I knew I was forgetting things. I knew there was a wrongness in the way I was thinking. My dog knew as well. She would look at me when I made a mistake: she had different looks for different mistakes and I always understood what she meant. Well, well: you have to face up to whatever you find in yourself.’

  She knows that she is beginning not to know and that the not-knowing is getting worse. She will stop mid-sentence and stare blankly, waiting for the strangeness to recede and saying, ‘Where am I? It will come back, it will come back.’ She has a phrase she uses quite a lot to cover the lacunae: ‘something of that ilk’. Whenever I ring her, which I do fairly often, she greets me with a bark of surprised laughter and then more or less the same words: ‘Nicci, where have you been? I thought you had disappeared off the face of the earth.’

  She feels the illness here – she bangs on her head with the heel of her hand. ‘The brain power is running out; things disappear. It’s a muddle and I get so tired.’ But here – and she raps at her chest, as if the door to her heart can open wide – she remains herself. ‘I am me, here, now.’

  When I visit her in Antrim I see on her noticeboard, among multiple reminders and exhortations, the message: ‘You are not this body; you are not this mind.’ (The others include: ‘Switch off electrical appliances!’ ‘You’re doing well, keep it up.’ ‘Take your meds.’ ‘Nicci is coming on Friday.’) She does ‘walking meditations’, pacing her miniature living room and garden, saying to herself, ‘I am calm, I am smiling. The present moment is a wonderful moment.’ Her insistence both impresses me and makes me uneasy: I wonder if she is hanging on to the notion of life’s bounty by her fingertips, and if what she calls joy is actually her way of coping with despair. I don’t know.

  At the conference, Theresa talked eloquently about how people with dementia are too often treated as if they no longer had a stake in their own lives. ‘We can still contribute to society, our family and the world beyond,’ she declared in her quick-fire voice – she talks as if rushing to get a sentence out before she loses its thread. ‘But for this to happen, we need to be part of the conversation about dementia: not just spoken about, like an object, but talked with and to.’ Later in the day, she took part in a round-table discussion with several of the leading spokespeople in the field and was smiling, proud, diminutive, indomitable, sure of her place at the table.

  Gerard and Pauline believe that the self exists in a rich and intricate network of connections and relationships; to be alive is to have a narrative of your life, with a past to reach back into and draw upon, and a future to anticipate and project on to. For them, identity involves self-consciousness, memory, language, rationality, all things that are gradually dismantled in dementia. But for Theresa, the self is ‘not just my brain, not just my memories, much more than my experiences. I’m here, in the moment, alive and whole.’ She is aware that her world is shrinking and the horizons are closing in: once, she travelled the globe, followed her questing spirit, went to the source of the Ganges. Once, she read books and wrote poetry. Today, her world is her little bungalow; her past dissolves behind her, everything she does during the day forgotten; her future is unknowable; the structures of her life have fallen away. ‘But I’m still resonating,’ she says. ‘In the present. Now.’

  * * *

  • • •

  Sean and I often talk about what we would do if we got dementia. After seeing what happened to my father, it’s no longer an abstract question but an urgent, practical one. Would we want to choose our time of death? For a long time we have both supported someone’s right to die if they have a terminal illness – and dementia is a terminal illness, after all; there comes a time when a person is no longer living with it but dying with it, becoming dead. The problem of course is that it is always too early – before you are ready to leave life but while you still have the capacity to make the decision – or too late; the departure gates have closed. And how do we make a decision for the unknown self we will become?

  I’m struck that while both of us would want to accompany and care for the other – or we think that we would, which is something very different – we would not want to be looked after by the other, at the mercy of their kindness and the object of their pity and disgust. I’m also struck by how we talk about these possible selves who exist in the conditional future as dreaded strangers. The self of our childhood may feel starkly different from the self of our teenage years, and that self seems barely connected, save by memory and the story memory makes for us, to the self we become. Yet it feels continuous. For Raymond Tallis, ‘It both is and it isn’t. For instance, I still feel responsible for a mistake I made as a junior doctor in 1970. To be exact, 8 March 1970. I do believe it was the same person. There’s a continuation of the body; there’s a psychological continuation.’

  We are attached to our past selves because we have been them and they are still lodged within us. All our infinite, shifting versions are contained by the present self – moment after moment, now and now and now, unquantifiably small fragments of experience piled up in the complex formation of the self. The child I was, the awkward teenager I was, the young mother ambushed by love, the woman in her thirties, her forties, have gone and the river of time runs on, and yet they are part of what made me. They are inside me, continually perplexed at my age and my wrinkles and my many follies and mistakes. We can’t escape each other.

  But the future self is a dizzying number of continually changing
possibilities. To talk of a me in the future is just bewildering. Not long ago, I uploaded a photo of myself on to an age-progressing app, which operates on the same principles used by forensic scientists to work out what missing children would look like today. A woman appeared on the screen: a small, wicked onion face, features barely distinguishable in a scrunch of wrinkle, mouth puckered in what might be the remnant of a smile but looks more like malice. Nope. That’s not me. I refuse to become that mean old woman. I’ll be someone different.

  What is it to be a self, and where does the self end? Does it end with death or, in some cases – where a mind is picked apart by dementia – can it end before that?

  The influential utilitarian philosopher Peter Singer has a list of indicators for ‘personhood’: ‘self-awareness, self-control, a sense of the future, a sense of the past, the capacity to relate to others, concern for others, communication and curiosity’. This is a brutal catalogue that dismisses many people who do not possess such ‘personhood’. In a society that places high value on reason, agency, memory, instrumental value, people with dementia count less or don’t count at all – which in turn can mean that they are no longer treated with love, respect or dignity. If we lose the sense of our self – our self-consciousness, that which gives us our identity – do we also lose our self? Our value? Our reason to be alive?

  ‘Neither cogito (I think) nor ergo (therefore) but sum: I am,’ writes one passionate champion of the rights and the value of people with dementia, who believes that those with dementia have, individually and collectively, been deprived of their human dignity and respect because of our culture’s increasing emphasis on autonomy, rationality and self-possession. This excludes ‘the socially outcast, the unwanted, the marginalized and the oppressed’. People living with dementia become, over time and implacable decline, defenceless, powerless, easily victimized. At the end of their long life, at the time of their greatest need, they cannot speak for themselves. Our moral commitment should be to the vulnerable: fellow human beings on this little planet of ours.