The Last Ocean

by Nicci Gerrard

  In the early years of his illness he would have vivid false memories, not uncommon in dementia. They were almost always connected with public humiliation: the one that repeated most often was to do with driving, or no longer being allowed to drive. He thought – remembered – that he had been in his car and police on motorbikes were following him, their faces concealed by helmets and visors, horribly impersonal forces of the law. It was like something out of Kafka’s The Trial. They pulled him over and told him he had been driving dangerously and took away his licence (which had indeed been taken away from him). In frequent versions of this paranoid story his name was given to the newspapers so that everyone could read of his failure – which was a failure of male competence. He would write formal, distressed letters to the council trying to clear his name, which had been dishonoured.

  People who live with dementia need more than ever to be treated with respect and dignity; it’s a fragile carapace that protects the vulnerable and terrified self. Often, of course, the opposite happens: they become objects of mockery. When Rita Hayworth was in her first stages of dementia people thought she was drunk and ridiculed her. As they did the Prime Minister Harold Wilson. And President Reagan. And Margaret Thatcher, looking vague and clutching at her handbag in her later years (she was known to be partial to whisky). People with dementia are often laughed at, because forgetting oneself is perilously close to the stuff of farce: the clothes put on clownishly askew or not put on at all, the garbled sentences that can be a source of hilarity, the muddle over dates and times, the mistaken identities, the sudden obscenities, all the banana skins and all the slip-ups. But the joke’s on them; the joke is them. ‘Pray do not mock me,’ says King Lear, as his patriarchal, self-aggrandizing identity is dismantled and he is at last left as a bare, forked worm, a human among other humans. ‘I am a very foolish fond old man.’ In Ian McKellen’s revelatory portrayal of Lear, he took off all his clothes and stood before us, an old man whose descent into madness was a form of dementia and whose nakedness was of the soul as well as the body.

  I can hardly bear to think of my father, my courteous, proud father who polished his shoes every day, shaved carefully, knotted his tie just so, washed his hands like a surgeon about to perform an operation, being ashamed.

  * * *

  • • •

  Sitting in Theresa Clarke’s little living room in her bungalow in Antrim, I ask her – with some trepidation – if she ever feels ashamed. She puts her head to one side. ‘Ashamed?’

  ‘Yes.’

  ‘Nicci,’ she says, as if she is a bit disappointed in me. I should know her better. ‘We’ve got to know what makes us tick. If we don’t, we’re losing ourselves, dementia or not. You have to delve into yourself. I feel that I know the real me. I feel no shame because I can’t be caught out.’

  Not many of us can’t be caught out.

  * * *

  • • •

  Shame. Humiliation. Exposure. I used to think that guilt was the superior emotion – the voice of conscience, inner-directed, the ‘sound in oneself of the voice of judgement’ – whereas shame seemed more narcissistic, a kind of superficial vanity and petty sense of mortification; that blushing, flushing, sometimes crippling adolescent self-consciousness. I thought that as one became more confident and wise (oh, if only) then shame would fall away and the deeper, less egotistic sense of guilt would take its place as the pilot of behaviour. But shame, though connected with appearance, is an enduring and deep-rooted human emotion.

  ‘Identity and shame are intimately connected,’ says Gerard de Vries in Utrecht. ‘You become an ego by building up a self-consciousness, and that brings shame.’ It’s not just decorum or prudishness or embarrassment. A ‘crucial part of self-respect is respect in the eyes of others’, and this need has deeper roots than rationality or self-determination: respect is intimately related to shame and ‘both are inseparable from one’s identity and visibility in the social order’. Shame is the shame of oneself before the other – it’s a defiling exposure and a kind of appalling recognition that I am as the other sees me. Shame is the shame of the self. I am that object.

  In Shame and Necessity, the philosopher Bernard Williams discusses the implications of the inner world coming up against the outer one. The basic experience connected with shame, he writes, is ‘that of being seen, inappropriately, by the wrong people, in the wrong condition. It is straightforwardly associated with nakedness.’ (The roots of the words ‘shame’ and ‘genitals’ are apparently indistinguishable in many languages.) Where guilt is rooted in hearing – the voice of judgement and condemnation – shame is rooted in sight and in nudity. It always involves the gaze of another, but it can be an imagined gaze of an imagined other: the internalized other; the respected, ethical other. So it can mean the exposure of the self by the self; the disclosure of the self to the self. And it happens at a much deeper level than egotism and the failure to live up to other people’s expectations. In its experience, one’s whole being seems diminished: ‘The other sees all of me, and all through me, even if the occasion for shame is on the surface, for instance in my appearance; and the expression of shame . . . is not just the desire to hide, or hide my face, but to disappear.’ To disappear: to cover one’s face, to hide one’s head in one’s hands, to want to crawl into a hole, to sink into the ground; to wish the ground would swallow one up. I could have died.

  ‘The contradiction between inner and outer’ which Helen Small identifies in her humane and wide-ranging book exploring old age, is ‘of a different order to anything we have previously faced.’ This is powerfully amplified in the early stages of dementia. The self watches the self that declines, is both the subject and the object, the cringing audience and the actor who keeps forgetting their lines, whose soiled trousers are around their ankles, who stumbles through the wrong door into the wrong room and on whose face is a look of humiliated surprise. To see your self as a disgraced other; to see your face in the glass but it belongs to your dead father, or to a disgraced interloper failing to perform the self you spent so long making.

  * * *

  • • •

  At the Tavistock Centre, psychoanalysts Tim Dartington and Andrew Cooper and Claire Kent, clinical lecturer in social work, talk to me about ‘confabulation’ – which means, says Andrew Cooper, ‘enacting a pretence’. People with dementia often find alibis for themselves, says Tim Dartington (whose wife, Anne, died with dementia at an early age and who herself wrote eloquently about the disease that came upon her slowly, like a fox, and about her ‘unfaithful brain’). ‘But,’ he goes on, ‘you give yourself away by continually repeating it, getting it slightly wrong. We want to be found but not found out – and some people with dementia devote large amounts of energy to avoiding discovery: not just literally hiding away but finding strategies that will cover up memory lapses, confusions and mistakes.’

  Alongside the alibis that Tim Dartington talks of there’s the habit of generalizing: asking questions or making comments that do not disclose lack of knowledge. It may be that the person with dementia does not know if they are seeing you for the first time in months or have seen you a few minutes ago and are trying to gauge this with their vague greeting. It may be that they know that they know you but are not quite sure of the exact relationship and are looking for cues. Or that they remember that they’ve been asked to do something but can’t remember what. It’s hard and stressful work to be continually ad-libbing, catching hold of prompts, finding landmarks, small patches of solid ground amid swampy uncertainty.

  People who care for the person who has dementia – above all, if they are their partner or spouse and have built up a relationship of mutual affirmation – often collaborate with them in this task of confabulation. After all, they have been taking part in the same performance for so long, a double act and each other’s audience. Just as Eddy Bell prompted his wife in terror that she would reveal their shared secret, so carers g
ive their loved ones alibis, cover for them, finish their sentences, take up the stories they are telling, explain them to others, even join in with the stressful pretence of normality.

  In part this is a simple act of kindness: if shame springs from the understanding that the vulnerable inner self needs protection, then of course you will help someone you love with this act of protection. But because in relationships the identity of the other and the self are bound together, more or less tightly, shame can spread from one to the other like an intimate contagion. We do not just suffer and grow anxious with the other but within ourselves, because where does one person end and the other begin? When people recoil and keep their distance, it may not be because they lack compassion and empathy but because they feel so endangered.

  ‘Yes indeed,’ says Pat Utermohlen stoutly. She is determined not to shy away from full disclosure and she wants other people to know that their feelings of shame are not shameful. ‘I certainly did feel shame sometimes. He would defecate in the most inconvenient places. There was a time at Kew Gardens. It was a nightmare. I was very embarrassed – there I was on the train with this smelly creature. Or arriving at a friend’s house and he would defecate.’ She nods. ‘But I always took him with me. I am not squeamish. But it’s very hard.’

  The shame that the person with dementia feels largely belongs to the earlier stages of dementia. That it often falls away during later stages, when the body fails and the narrative self is dismantled, is one of the few kind losses amid a pile-up of cruel ones. They no longer know – or if they know, they don’t care – that they wear a nappy, defecate, urinate, dribble, make sounds that are not intelligible. They have returned to a state of innocence, before the fall into self-consciousness and identity.

  In Out of Mind by J. Bernlef, the saddest and most illuminating work of fiction about the illness that I’ve read, his narrator Maarten is at first aware of this dislocation and is in a state of constant anxiety and hyper-alertness. He sees people look at each other when he is speaking; he knows when he puts a foot wrong and tries to retreat to a place of safety. He understands the importance of holding on to routine events or, when that fails, to imitate them: ‘To lie and then believe the lie – to invent a life from minute to minute.’ Bit by bit he loses his tormenting sense of wrongness. When he utters obscenities, he feels no responsibility. When he touches himself in the bath, giving himself an erection, he can’t understand the horrified reaction of the nurse and his wife. When he sees an old man in the mirror, his ‘belly streaked with shit’, he is glad that it isn’t him.

  When eventually the memory and the relationships that have held the self together dissipate, then the individual is adrift between self and other, times and places, night and day. While for an observer this may be uniquely terrifying, there can be a kind of mercy that oblivion delivers – the kindness of letting the bewildered, frantic, humiliated self go. To no longer recognize oneself; to no longer feel panic and shame. To be in the world and not distinct from it.

  But the shame they have mercifully been released from can be passed to those who look after them. For carers, particularly partners and spouses, it is often hard or impossible to rid themselves of a sense of inherited humiliation. In a relationship that has lasted decades, the boundaries between self and other are blurred and identification is intimately bound up with the other. If they become the voices and the memory of the person with dementia, why not the shame as well?

  This shame goes deeper than humiliation and the fear of being seen naked and defiled: it becomes existential, spreading through the whole of society, and it is one of the reasons we have dealt so inadequately with dementia as a disease. In the breached and self-forgetful state of those who are living and dying with the condition, we recognize our once and future selves. We want to resist identification. The squeamishness and horror that the spectacle of a person with advanced dementia can provoke comes not just from the way the disease, at its most cruel, dismantles a person, leaving them demolished and yet still alive. It threatens us by dismantling our sense of our own selfhood and predicts our future disgrace. One day, I may be like that. One day, I may wear a nappy, be turned in my bed and washed, shout long-kept secrets to the world. It’s hardly bearable; we turn away so that we do not have to bear it. Society turns away. Not me, not us, but them: the disgraced other.

  Jenni Dutton’s tender, unsqueamish, entirely accepting relationship with her mother during her long dementia years has much to teach us as a society. Somehow, she found the wisdom and humanity to look steadfastly at what it is to be a failing mind inside a wasting body and feel nothing but compassion, love and joy. Indeed, she seemed to be able to see her mother more clearly and value her more dearly as capacity fell away. She didn’t mourn what she had lost but embraced what she had become: ‘That little soul!’

  * * *

  • • •

  Yet this avid shame – which spies at us through keyholes and sniggers from corners – is also crucial to society as a whole. It’s like a law enforcer that keeps us on track emotionally, psychologically, socially, politically and morally. Civilization is held together by shame far more than by guilt. Good behaviour is maintained by it; rules are followed and promises are kept because of it; politicians rise and fall by it; morality is upheld in the knowledge that we watch and we are watched. Shame keeps an eye on us and holds us to account.

  In The Republic, Plato considers the question posed by the Ring of Gyges, a mythical object which makes its owner invisible at will (a bit like the one in Tolkien’s Lord of the Rings): what would we do if no one could see us doing it? People who care for those with dementia, especially in its later stages, wear the Ring of Gyges a lot of the time. The one person who can see and feel what they are doing will forget it. Nobody will know – except for the watching self, the I that observes the I. Dementia often does its work in secret, behind closed doors. It is impossible to know how much abuse goes on in homes, in hospitals, in care homes, in any place where powerless people are unable to say what is being done to them. In the US, the National Council on Ageing recently reported that nearly half of people living with dementia experienced abuse or neglect – this includes physical and emotional abuse, confinement, passive neglect, wilful deprivation and financial exploitation. Carers often say that their loved ones are not treated with dignity while in hospital. Stories about abuse in care homes are grimly familiar. I don’t think that bad people are doing bad things but that good people are – because the work is hard, stressful, underpaid, undervalued and because no one is watching and they have failed to watch themselves. If they did watch themselves, how would they bear it? Shame is useful.

  In the domestic home, the person who looks after the person with dementia usually works alone. It’s a hard task, both physically and emotionally, and can become hellish. Where there was once reciprocity, now less and less comes back. The person who hears what you are saying is you. The person who sees what you are doing is you. If you don’t watch yourself, who knows what will happen (what does happen)?

  When my father was in his middle stage of forgetfulness I remember occasionally feeling an odd, unsettling self-consciousness when I was alone with him. It was like I was in an echo-chamber, my voice coming back at me. I was aware that I was talking to him a bit artificially sometimes, as if I were performing the part of someone being nice to their father who had dementia. And I was. Because my father no longer responded in the way that he used to, I was standing in for him as well, becoming my own audience. Being a daughter and acting a daughter; talking to my father and talking to myself.

  Disie Johnson, a friend of Pat Utermohlen who often joins us for our talks because her husband also has dementia, writes me an email before one meeting that reminds me of what I used to feel. ‘Living with someone with dementia who is not making much sense out of life and struggles to comprehend simple things is like having to act a part all the time . . . I have to pretend that it’s perfectly
normal to lead this life of conversation – if I can even use that word – that is really just a series of requests by me, or repetitions of what I’ve just said, or explanations . . . being with a person with dementia all the time is a bit like being on stage all the time, or at least acting a part all the time, and perhaps this is why we get so tired.’ She goes on: ‘And all the while, in very, very slow motion, you are watching the disintegration of a person in the real sense of person.’ When we meet that evening she talks about this sense of her own theatricality: ‘Such self-control!’ Her laugh is wry. ‘Such a fine performance. I’m looking at myself and asking: How are you doing? How are you reacting? Are you being good? I try to be good. I’m lucky that he is so very sweet.’ She’s not sweet: she’s sour, dry, splendid, theatrical and authentic, acting herself out in the theatre of her life.

  7. THE CARERS

  ‘How far that little candle throws his beam.’

  And so, enter the carer, the caregiver – who has of course been on stage all along, just not noticed.

  The story of dementia is also the story of those who care for people living with the illness. And if people with dementia are missing people, so too are their carers. In the UK, one in eight adults are carers (that’s 6.5 million people), and almost 60 per cent of these are women. They save the economy an estimated £132 billion a year – and yet the carer’s allowance is currently £62.10 for a minimum thirty-five-hour week: £1.77 an hour (at the time of writing, the national minimum wage is £6.70 an hour). They are undervalued and largely unrecognized, but without them the structures of society would collapse.