The Last Ocean

by Nicci Gerrard

  The carers of people living with dementia make up a large portion of this vast, invisible army: in the UK, about 700,000 men and women look after people with dementia (in the US, there are about 43.5 million carers, 15.7 million of whom look after someone with dementia). Sixty to seventy per cent of them are women; the longer the caring lasts, the higher the percentage of them are likely to be women – in other words, women carers tend to have more endurance in this hardest of tasks. Forty-four per cent of carers have a long-standing illness or disability, including depression; many of them are partners or spouses and are therefore likely to be older themselves; in the US, the average age of a female family carer of someone with dementia is 69.4. Thirty per cent of those caring have been doing so for between five and ten years, and just over 20 per cent for over ten years. In the UK in 2013, an estimated 150,000 years were spent caring for people with dementia, or 1,340 million hours.

  My mother never had to become my father’s ‘carer’. She remained his wife, living with him and loving him as he inched towards self-loss. In the final, terrible year she could not possibly have looked after him: she was in her eighties, disabled by years of chronic back injuries and registered blind. A rota of professionals came in to do the jobs (lifting, cleaning, dressing and undressing . . .) that are so bodily and for many intimate carers so distressing. So, by and large, she remained his wife, and he her husband. She was lucky in this.

  ‘It’s a killer,’ a friend who cares for her husband says to me. ‘It’s savage.’

  * * *

  • • •

  To care. To be careful, never careless or carefree. To be careworn. To be a carer.

  We say it easily, indiscriminately, carelessly. ‘Carer’ is a word in whose small frame lives a great jostle of seething emotions, an army of feelings that collide and clash, while all the time the image is one of saintliness, a serene self-sacrifice in the name of duty and affection. In the same way, the word ‘caregiver’ has a troubling ambiguity about it. It makes care seem like an object rather than a process, and it presents the act of caring as a gift, something one person generously and self-sacrificially offers and the other receives, implying a lack of reciprocity. Some people prefer the careful new term of ‘care partner’.

  It matters what words we use. Vocabulary is always active. To ‘accompany’ someone on their journey into loss and into darkness: can we ever really do this? To be the ‘loved one’ when sometimes the loved one doesn’t feel love at all but hostility, alienation, abandonment, repugnance and despair.

  Because dementia happens in slow motion it is barely possible to say at what point the term ‘carer’ sticks. A woman who has been a wife for fifty years (or of course the man who has been a husband), whose husband is perhaps the only lover she has ever had, finds herself taking on the tasks that used to be his, making decisions he used to make, taking over the finances, covering up for his slips. She finds herself becoming the diary-keeper, reminding him of where he is supposed to be. The timekeeper. She stops him getting lost, or finds him when he is. She comforts him when he is anxious. She tries not to become impatient when he repeats himself – or shows her impatience and then feels guilty. She tries to remember that it is the illness not the man when he shouts at her or is indifferent and cold. She tries not to mind that what she does, day in and day out, is unseen, unvalued: nobody to say thank you or tell her she is doing a good job. She tries not to resent the fact that she is giving up things for a person who doesn’t understand her self-relinquishment. She tries to hold on to her own self but feels it is slipping away from her and that life is unfair. And so it goes, slowly, slowly, a gradual incremental loss, until one day she finds that he no longer remembers what happened yesterday or that morning; he can’t recall things they did together; their shared memory bank is dwindling away; their relationship is no longer one of reciprocity. She is the memory, the voice, the judgement, the choice, the custodian of their past, the narrator of their story, the gatekeeper. Then she is talking to him very patiently like he is a child – or loudly and crossly, like he is a very naughty child; she is helping him eat; she is feeding him like he was a baby; then she is washing him, then she is wiping his bottom, then she is clearing up the mess and trying not to feel disgust. This body she once desired. Then she is putting on his nappy, sleeping in a different bed. Then he is shouting at her, attacking her with shit-encrusted nails. Then he calls her ‘Mummy’. Then he has no name for her. He has no words. He is a figure in a bed. She finds she is alone and everything they made together has crumbled about her, a wreckage of the future.

  At what point in this inching towards obliteration does she become the ‘carer’? At what point does the child who is looking after the parent call themselves ‘carer’ – and how do they accommodate the wrenching, dislocating experience of seeing their mother, their father, so helpless, so very bodily. Some people talk of the hard privilege of being a carer: Tim Dartington, who looked after his wife, Anne, and kept her at home during her last years, told me that what happened with his wife ‘transformed my whole way of thinking, who I was, what I was doing, what my values were. It changed everything. I was a better person for it . . .’ Ronnie Carroll, a dear friend of William Utermohlen who was steadfast during his last terrible years and cared for him tirelessly, spoke with tenderness and love about the experience in the short film made about the artist: ‘Poor Bill got really bad. I would give him a shave; if he needed to go to the toilet, take him to the toilet. I’d make him lunch – he was a great eater; he loved eating, especially if there was a chocolate ice at the end of it . . . Then I’d get him dressed . . . and we’d go out, along the canal . . . to his favourite pub, and we’d sit and have a couple of half-lagers and we’d tell these silly stories and laugh. It was magical. It was the closest bond I’ve ever had with a man in my whole existence. It made me a different person, there’s no doubt about it.’

  But other people speak of the despair and the erosion of selfhood. Andrew Cooper at the Tavistock Centre tells me of a patient he had when he was a social worker whose way of life was ‘unsustainable’ and who could no longer make any decisions for herself: ‘It’s the most anxiety I’ve almost ever felt, in my entire life. It was a void. The void was in her and in us. There was nothing to connect to and I felt panic, which probably reflected the panic in her’ – but he was a professional and could go home at the end of the day.

  ‘She has possessed me and I am diminished,’ writes Andrea Gillies in her excruciating memoir about her mother-in-law, Keeper.

  Caring can be exhausting, farcical, revelatory, horrifying, enriching, tragic. In the act, the physical and the emotional fuse. People find themselves, lose themselves; give things up and take things on; are diminished and expanded; behave terribly and beautifully; are proud of themselves and ashamed; never do well enough and do more than could possibly be expected of them. ‘Carer’: there should be another word.

  The word ‘selfless’ is almost always used as a term of praise: the voluntary abandonment of one’s own wishes and desires for the sake of another. I’ve read a large number of books in the past year that speak of the act of selfless care in rapturous and almost religious or spiritual terms. Whereas curing is directed towards recovery and has a high value in society, caring is an end in itself. One writer compares this to the myth of heroic Prometheus (the Titan who defied the gods and was punished by them when he gave the human race the gift of fire) and stoic Sisyphus (who in Hades was condemned to repeatedly roll a rock up a hill, only to see it roll down once more).

  In a utilitarian sense, caring has little value and should be thought of in the light of a ‘covenant’ and ‘fidelity’. Reciprocity may be limited or even, in dementia’s end stages, entirely absent, and often achievements lie in what is not seen: no bedsores, no malnutrition, no falls . . . The carer needs to find meaning in the act itself, regardless of any outcome, regardless of any recognition. They are the ‘keeper of the psyche’
and must be a ‘person of faith’. The writer and professor of nursing Sally Gadow believes that caring is the process of entering another’s vulnerability and brokenness and ‘breaking oneself’. In this mutual brokenness, acts that are thought demeaning in a cure model (like lifting, washing and feeding) become ‘bonds of the covenant’.

  This is pure selflessness: to enter into the other’s word of fear and loss and frailty; to leave your own world behind; to leave your own self behind in order to accompany the one who is in need. It places a high value on self-relinquishment and suffering. While such a way of thinking about the act of care recognizes the profundity of the task and places unquantifiable value upon it, it at the same time attacks the notion of autonomy, independence and selfhood. Well, of course, ‘autonomy’ is too easy a word, as is ‘agency’; all these phrases I have so blithely thrown around throughout my adult life – standing my own ground, being my own self. Is there ever such an untrammelled thing? We are born into dependency and dependency is part of the human condition. In the journey through life, our experience as flesh and blood, as a self with a body, an embodied mind, as a part of a rich and changing network of relationships, is one of continual vulnerability. Perhaps our twenty-first-century world has become too preoccupied with defences and with boundaries. Boundaries must always be breached. Caring for others and being cared for in our turn is part of the fabric of civilization. The most basic questions about how to live a good life are questions of relations. We are all connected politically, emotionally, psychologically. And yet, and yet . . .

  To be selfless necessarily means not be in relationship to others (because, without self, there can be no reciprocal relationship), so how is it that women, in particular, have come to speak of themselves as if they didn’t have a voice or experience desire? Carol Gilligan, the American ethicist, feminist and psychologist and author of the classic work In a Different Voice, explores how hero legends such as The Iliad or The Odyssey are tales of radical separation; they are the exemplary stories for men, tracing an individual drama of separation, the dream to which relationships are subordinate. All the while Penelope sits patiently at home, waiting, weaving, remembering and holding faith. Masculinity, Gilligan argues, has long been defined through separation, femininity through attachment. But how much empathy should women and all those in nurturing and ‘female’ roles be expected to have? Should they be destroyed by it?

  Unconditional love – the greatest of gifts – is ravaging. Many parents know this with their children, for whom they would lay down their lives without pause. When I became a mother (each time I became a mother), I was shattered by the rush of rapturous, self-obliterating devotion to this little creature, pink and bawling and new, who was utterly dependent on me. I put up no resistance at all. I used to say I fell in love, plummeted; but I also felt lifted out of the tangle of myself into a pure and dangerous realm where all my energies were directed towards this tiny, powerful, endlessly demanding, tyrannical other. Motherhood can be a category that swallows up all the other selves. It’s seductively easy to get lost in it because love for a child is so absorbing and unanswerable. And it’s painfully hard to rescue oneself from being secondary, invisible, self-sacrificial, adoring, mythical; from being annihilated as a person who has desires, craves freedom (and sleep), wants to be foolish and irresponsible and childish.

  But in this consuming love story babies become children become teenagers become adults, grow up and grow away and leave home, and you release each other. The tide that rushed in ebbs out. Love doesn’t abate but the nature of the attachment changes. For carers of those with dementia, when the self is being unmade rather than made, the flow is all in the opposite direction, towards helplessness and diminishment. Leaving home is dying.

  The philosopher Jane English poses the question ‘What do children owe their parents?’ And she answers, like a hammer coming down: ‘Nothing.’ In her view, parental love and sacrifice do not create debts, rather they create love and friendship: filial obligation can serve as a ‘maleficent ideological warrant for the destruction of daughters’. Like Persephone locked into darkness, there is a mysterious disappearance of the female self into the underworld. If I think of my own children, then I pretty much agree with Jane English: they owe me nothing. There are no debts and there should be no guilt. They should be free of me. And yet it doesn’t work the other way round: I do feel I owe a great deal to my parents and would be crippled by guilt if I didn’t in some way try to repay them for all they did for me. It’s not only love, it is a sense of obligation and perhaps it is also a sense of self-respect. I have an image of the person that I want to be.

  But history is full of unseen, silenced women – silenced in the name of love.

  ‘Everyone gets it for kids,’ says Sube Banerjee. ‘As a parent, you will compromise in what you believe, not just what you do. But our generation finds it difficult to make the same kind of compromises for our parents. There is a pleasure that comes from realizing what you are doing is pleasurable for the other person – that instead of them failing at things, you are enabling them to succeed. It’s true that the traditional notion of autonomy is exploded; you have to trade off things like success, and that’s really complicated. Kindness is the core,’ he adds. ‘And the state doesn’t provide kindness; it can’t. It’s our problem, and there are things one gives and takes as one goes through the stages of loss.’

  For surely the endeavour – the never-quite-possible endeavour – for a carer is to tread the quicksand strip of middle ground between the abandonment of the self in the name of love and duty and the unyielding protection of the self in the name of survival. To both give and keep hold of the self, to accompany the person who is leaving while also staying behind. To have courage, stamina, compassion, empathy, to be in it for the long haul and yet not to be wrecked to the point of self-extinction. If selflessness is the ideal and the aim, if suffering is seen as a virtue in itself, the carers – those hundreds of thousands of people up and down the country, those millions across the world, who, unseen and undervalued, toil at their Sisyphean task in the name of duty and of love – will always feel that their work is never good enough. Guilt floods in – guilt at being human and having desires and needs of one’s own. Health and survival can come to seem like acts of infidelity; to have a space for oneself a betrayal.

  * * *

  • • •

  In 2017, I talked to two women who have meant a great deal to me, in their different ways. The first, Mary Jacobus, was once my tutor. She was still young when I was an undergraduate and I was both a bit scared of her (although she isn’t a scary woman but softly spoken and attentive) and wanted to be her. She was – and still is – attractive, quite private, formidably clever, scrupulous, self-questioning and kind; a woman of integrity. She was a bit of a pin-up for the male students: I remember her giving her lectures sitting on the edge of the platform, wearing boots. (And because I had been brought up to be a good girl, I also vividly remember an occasion when, in a small seminar when I was the only woman, she asked who would drink their coffee out of a jam jar, since she had run out of mugs, and I at once offered. She looked at me severely: ‘No. I’m asking the men. Don’t do that.’ A small jolt of pleasure ran through me.)

  We didn’t lose touch. I have visited Mary and her husband in Ithaca, upstate New York, when her children were little and sat in her lovely old house there, full of books and paintings and baby clothes (she has lived there for four decades but is now in the process of selling and ‘dismantling’, downsizing to a condo); been to her terraced house in Cambridge when she was living there; she has come to see me, bearing a fragrant rose bush that still stands in my garden. She’s become my friend – my friend whose husband has dementia. He was diagnosed several years ago and is now entering the mid-stage of the illness, and she is his main carer – although ‘carer’ is a world she has grave reservations about. Throughout her career, she has been a powerful advocate for women
’s writing and the female voice. She’s a feminist who came of age in its second wave, and she is psychologically acute about the ways in which women have to actively resist selflessness: the ideal of female saintliness that can be deadly. She talks about the experience carefully, without resentment or self-pity; she’s her own shrewdest critic. She is experiencing it and she is thinking about it, what it means, how to find a way to live, what her boundaries should be. She is thinking about how to survive.

  Normality, she tells me, provides a form of scaffolding: they walk their dog each day (an adopted border collie who is a great bond); they do, or try to do or fail to do, the Guardian crossword together. But ‘it is endlessly difficult to do or think about anything other than managing our situation in Ithaca day by day . . . it consumes all the time unless I absent myself.’

  ‘It’s a two-body problem,’ she says to me as we sit in the café of the Fitzwilliam Museum in Cambridge. ‘My own mind is affected. I’m not just the memory. I’m also the anxiety.’

  Her husband has become ‘happy-go-lucky. He doesn’t recognize his limits. So I have to be the anxious one.’ Because he feels omnipotent, he can experience any kind of criticism as a form of persecution, a ‘very primitive thing’. She becomes his ‘corrector’. She also becomes a kind of narrator for him, making order out of what is confused, foggy and ‘in pieces’. This is a difficult enterprise, one that threatens the balance of her life. ‘You have to keep time for yourself,’ she says. ‘One needs to defend oneself, to preserve one’s own mind. Where there is chaos, you have to manage it. Splitting is a kind of defending. I’ve always been quite fierce – and maybe frightened of being dependent; of being powerless and helpless.’ She adds: ‘Carers go on and on and on and on.’