The Last Ocean

by Nicci Gerrard

  I wait. Claire waits (she knows what is coming). He looks back at us.

  ‘She started to attack him. She would beat him up; properly beat him up. In the beginning, he could defend himself, hold her wrists to stop her, but later he couldn’t. He was dying, you see. One of the reasons they couldn’t ever see friends was because his arms were covered in dark bruises. I don’t know when we found out. There was a Sunday lunch when we saw him covered in injuries and he told us, “Your mother did that.” But he insisted we do nothing; he insisted.’

  Claire adds: ‘Jan was like a little child, looking down, walking away, not meeting our eyes. She knew what she was doing.’

  ‘Through our lives,’ says Andy, ‘these terrible things happen and we put them away and don’t deal with them, but Alzheimer’s unlocks that door and it is open at last. She couldn’t deal with her feelings then or now. Perhaps she couldn’t help herself.’ His body is folded over with sadness.

  ‘It’s like you put your memories in a kitchen drawer,’ says Claire. ‘And rattle them up and all the memories are in a sharp muddle: she remembered the feelings but not the events connected to them; she lost that connection between memory and feeling.’

  Perhaps Eddy Bell wanted help but he didn’t know how to ask for it. He wanted to repair the damage he had done all those years ago but knew he’d never be able to; he didn’t want to be separated from her, even though they were living in torment. He hated the idea of going into a home. Then, one day, he decided to drive them both to Lake Garda, where they had had their honeymoon – ‘Perhaps he thought he could jog happy memories.’ He told no one. (‘It was like Thelma and Louise,’ says Claire.) He drove there in two days. It was a terrible mistake: in that unfamiliar environment, Jan Bell was utterly disoriented, agitated and terrified. She wouldn’t allow any windows to be opened and always had all the lights on. She was walking up and down, up and down, never still. They cut the holiday short and drove back again, staying for one night only. ‘He was very upset, very poorly, had stopped eating anything: it was like his body was consuming itself. I went to see him and he burst into tears. My mother looked at him weeping there and just said, “What do you do with someone like that?” It was so cruel, everything was so cruel.’

  The ugly disorder had to end. At last the family contacted social services and the couple went into a home together. Even there she continued to attack her husband, though she said and still says that she was looking after him. Once a carer found her dragging him out of the bed – an emaciated, dying man – and kicking him; another time, she was found wielding a bread knife, and at that point they were separated, this couple who had loved and hurt each other all their shared lives, who wanted to be together and whose only chance of peace was to be apart. Eddy Bell died soon after. Now, after time, all of Jan Bell’s memories of her husband are ‘nice’ ones.

  ‘I tell myself it’s the illness,’ Andy Bell says. ‘I know it is. But she’s my mother; he was my father. When I visit her and am tender, it’s for him. I’m doing it for Dad.’

  * * *

  • • •

  With Jan and Eddy Bell, dementia – undiagnosed, untreated, unsupported, hidden away in the darkness – went on the rampage. But Claudia Wald is very clear that with the right support and treatment diagnosis is the start of learning to ‘live well’ with the condition: ‘I try to normalize it – which does not mean that I trivialize it. You have to gradually bring the goalposts nearer home. You have to make the most of your present and near-future.’ And Sube Banerjee agrees: ‘We have to focus on what the person with dementia can do, not what they can’t. It won’t be the same as it once was, and it requires time – which is the one thing we often have least of – and our ability to adapt to them, because they are not going to adapt to us. Kindness is the core. And hope. I sell hope.’

  * * *

  • • •

  Kindness and hope. The artist Jenni Dutton is humane, upbeat and almost joyful about her mother’s dementia, which has run its course now. Her mother died in 2015, five stone, blind, inarticulate, completely incontinent – ‘But oh, that little soul!’ says her daughter. Her face shines with memory and love.

  ‘I saw it as the next positive step in a life,’ were almost the first words that Jenni Dutton had spoken to me when we met, before seeing my surprise and adding: ‘Although I’m very good at forgetting the bad bits; I always have been.’

  We are sitting in the café at Salisbury Art Centre, surrounded by her ‘Dementia Darnings’, an extraordinary collection of sixteen tapestries that she made over the last years of her mother’s life. She took photographs of her mother and squared them up on a large canvas so that she has a grid that is a guide to the placing of shapes and colour and she doesn’t need to view the piece as a whole as she works, which can be a ‘distraction’. So she weaves the wool, not looking at the whole image, dissociating from the nose, the mouth, the eyes, often working upside down (‘A bit like having dementia,’ she says – ‘seeing things in patches’). The result is eerie: some of the huge portraits are lifelike and look from a distance like traditional oils; in others, the wool is pale and sparse, coming undone, and in later works it is impossible to see, close up, that this is even a picture of a face. The threads are a maze (‘as is a brain’) and tangled up (‘like in dementia’).

  ‘I’m exploring loss,’ says Jenni Dutton. ‘There’s such symbolism around weaving – a stitch in time, losing the thread, being like Penelope, a woman waiting. In these tapestries, things are coming apart, but it’s also an act of mending.’ Over the series, we see her mother recede, become less decipherable. The pictures are an account of the stages of self-loss: they depict ‘one little old lady, my mum’ and at the same time offer the viewer a timeless account of age and dissolution. The face is undone before our eyes, but softly, so that it feels almost like a liberation in which the stitched-up, coherent, tightly patterned self is freed into a soft unravelling. Whereas William Utermohlen scrutinized himself with a dispassionate and pitiless gaze, these images are very tender and some are so intimate it feels almost indecent to look at them. Jenni Dutton nods. ‘I know. But this work is important. We mustn’t shy away from decline and decay. It is crucial that we are not frightened of these vulnerable images. And my mother was supportive of my work, intrigued and proud.’

  Jenni Dutton sees dementia differently from anyone else I’ve previously met; she views it as a difficult gift, something to be embraced rather than resisted. Her mother was very different from her – small, dainty, pretty. Her illness began gradually, but because her own mother had had dementia the family understood that she was declining. She lived in her own home and carers came in several times a day. Jenni Dutton was often there, building her working days around her mother’s needs. She would ask her daughter what was wrong with her, and Jenni would reply, ‘You have dementia’ – but ‘I always reassured her that she would be supported, and would be all right.’ At the memory clinic where she received the formal diagnosis she didn’t ask questions. So she both knew and did not know what was happening to her. She went slowly into the land of forgetting.

  It seems that, instinctively, Jenni Dutton understood how to accommodate the illness and enter into her mother’s changed and shrinking world. If her mother rang up wanting to go to the shops and it was nine at night, ‘It didn’t matter.’ If she ate all the food that Jenni had left out for the entire day by the middle of the morning, ‘It didn’t matter.’ She did not come to harm, and the important thing ‘was not to let her get upset’. Sometimes she would become lost and disoriented: ‘She would walk and walk with her little dog; she would rattle, rattle, rattle at the doors we had to lock to keep her safe.’

  In these first stages of her illness Jenni Dutton’s mother was given a safe structure, boundaries (‘I’m very good at boundaries myself; all those years of therapy!’), a circle of support and a form of validation. People with dementia are continually
contradicted and corrected: It’s Sunday not Friday; You’ve already eaten your breakfast; You haven’t cleaned your teeth; That vivid memory is false; I’m your wife, not your mother; I’m your daughter, not your wife; Anyway, you are old and she is dead; The past is over. Their version of reality is denied – but reality is not a rigid structure; it’s impermanent, multiple and subjective. There are many ways of seeing.

  In her familiar home, with her little dog, her carers, her daughter coming several times a day, her granddaughter too, her mother managed for a while. Her life stayed pretty much on track. One day, ‘we were going through photo albums and she recognized old family and friends and I started embroidering their faces on to the dress I had made: little sketches in thread.’ So began a process that produced the haunting images staring down at us. It seems to me that this collaboration between mother and daughter in some strange way made the process of disintegration an exploration of loss for both of them, as well as the experience of it. They were on a poignant adventure that would end only with her mother’s death.

  * * *

  • • •

  According to Raymond Tallis, it is in its early stages that the illness is most eloquently expressed by the affected individual. To find the ‘courage to be’ in the face of the diagnosis can be painfully hard, and becomes less so only once they begin to forget. By the end, says Claudia Wald, we just have to ‘pray that the fear has gone’. Shortly after William Utermohlen got his diagnosis in 1995, he made his last large painting, Blue Skies. In it, the artist sits alone in the empty glare of his attic studio. The walls are blue and yellow; the table is yellow; the skies are blue. The open skylight that dissects the image hangs above him like a guillotine. The slight figure sits hunched over the table, holding on to it as though it would otherwise slide away – or as though he would. Whereas the ‘Conversation Pieces’ are full of physical objects and the comfort of things, here there is nothing. Just a man in a space. It is a desolate, pitiless image.

  ‘He locked himself away,’ says his widow, remembering that terrible time. ‘He would stare into space like one of the living dead. He was scared and he was ashamed.’

  But William Utermohlen’s most famous work, his revelatory self-portraiture, was ahead of him, although he did not know it (and perhaps he never knew it). When the artist was briefly admitted to the National Hospital for Neurology and Neurosurgery at Queen Square, in London, he met the nurse Ron Isaacs. It was Isaacs who encouraged him to continue drawing and to portray himself. So he picked up his brush once more. Painting and drawing were the ways in which he could connect his inner self to the outer world; they gave him his voice, the thread that would take him out of the labyrinths of the self. For a while . . .

  6. SHAME

  ‘Pray, do not mock me: I am a very foolish fond old man . . . Do not laugh at me.’

  Most of us find it extremely painful to be laughed at, to be the joke in the room. Perhaps it is even more distressing to people of my father’s generation, for whom dignity is central to their notion of identity. And I think men are often more wounded by the loss of dignity than women.

  When I look back at the early stages of my father’s dementia and try to imagine what it must have been like for him during those early years, I slide up against something soft, insidious. Not loss (though loss is there), not fear (although that too), or denial (of course), or a sense of life continuing after all (I hope) and the comfort of ordinary moments. Something else. A sensation that makes the skin prickle and the guts coil: doors flung open, eyes watching, lights switched on in the darkness and if you cover your face your naked body is exposed; the sound of knowing laughter and the intake of breath. Layer after protective layer is pulled away, the defences that have been built up over a lifetime crumble, and something pulpy and secret and infinitely vulnerable, something that no one should ever see, even those who love you most, especially those who love you most, is laid bare.

  My father sometimes pulled the covers over his head and lay in the darkness, wrapped in his own warmth where no one could see him. He didn’t exactly hide his diagnosis, but nor did he talk about it. By some kind of unspoken agreement, we didn’t use the ‘D’ word to him. His friends skirted around it.

  Jan and Eddy Bell pulled the door shut, click, locked it against the world. Tommy Dunne closed the curtains, turned out the light, unplugged the phone. Patricia Utermohlen says her husband would sit alone in his studio; he was scared and above all he was ‘ashamed’.

  Shame is a word that comes up over and over again in connection with dementia. I spoke recently to someone whose father would not – could not – tell anyone of his diagnosis of early-onset dementia even though that had meant losing his job and his livelihood. I know of many couples who tell nobody – although, of course, lots of people know or guess and, of course, the couple knows that they know . . . But it’s a secret; a dirty secret; shameful.

  Almost everyone I have talked to whose lives have been personally touched by the illness has spoken about their sense of shame. Shame comes in many guises and is felt by the affected individual and, by association, their family. Shame because of the stigma; shame because of the loss of power and control; shame because identity is cruelly stripped away and leaves the vulnerable self exposed; shame because, over time, the disease becomes so bodily and the body is a messy, leaking vessel; shame at the acute loss of dignity; shame because the person with dementia feels repeatedly caught out; shame because bit by bit all those things that have been kept private and hidden are on display; shame because we are all performative beings and learn to act out our selves on the stage of our lives, but dementia brings the mortification that comes in our dreams of standing in front of an audience and not remembering our lines, of being found sitting on a toilet with everyone watching, of being seen naked. Naked in our body and in our soul: that soft and quivering part of us that we try all our lives to protect from the judging world – and, crucially, from ourselves.

  When people talk of the shame caused by dementia, it is often deeply connected to the failing body. It’s about mess. While other things spill out – obscenities, mumbles, cries, wild and garbled speech, an incoherent flow of the mind that’s lost hold of itself – it’s the physical manifestations of loss of control that can be the most upsetting and humiliating. We learn from a very young age to keep things in or to let them out only in private: the incontinent waste of the self. The inside comes out in unwanted ways when the boundaries that have been policed for so long and with such rigour collapse. ‘Don’t worry; it’s natural; it’s just your body,’ I hear a nurse say reassuringly to a patient. But a body is never just a body. A body is where we live and how we live.

  * * *

  • • •

  And there is in dementia an additional terror about what has occurred during those periods that are erased from memory, leaving only an indistinct imprint of disquiet, the nudge beneath the ribs. Something happened. What happened? What did I do and what did people see? Was it ridiculous? Was I ridiculous?

  I have a vivid un-memory from when I was about sixteen. I went to visit my elder sister, who was at a university in Devon and sharing a house with a group of friends. I was anxious not to let her down and I wanted to impress her friends; I wanted them to like me. There was a small party in their house and I drank a large amount of cheap, harsh cider. I got hideously drunk. I have no idea what I did, what I said, where I went. It’s an unforgiving blank into which excruciating fragments drift: me in the toilet with one of those young men who I wanted to impress holding back my sticky hair; me lying in bed with my sister sitting beside me, being kind; me wandering around the garden, holding forth about poetry or love or something; me weeping about a relationship that was going awry. The next morning, feeling grimly awful and embarrassed, I went to the sea with my sister. We didn’t speak about the night before; I tried to behave as if nothing had happened. It was very sunny and I lay on a rock, slack and nauseou
s, and slept. When I woke I still felt awful but now I was sunburnt as well, hot and stinging and rawly scarlet. It was as if my face wore a permanent blush of shame. I kept seeing myself as I might have been during those awful lacunae: I imagined what I must have looked like when I had no control over how I presented myself to the world, how risible. Even now, decades later, a wash of remembered humiliation passes through me.

  A sense of shame is an essential part of being a self-conscious individual and having an identity; it lives in the gap between the self’s actions and its standards. People with no shame at all and therefore no self-censorship may violate the notion of what it is to be a social, decent being. But shame, with its sense of being watched and judged, can bring a toxic self-consciousness.

  The self as other, the self met in the mirror, the self naked in the world and the sense of flooding shame – not at anything done or said or thought or imagined, no flushing out of secrets, but shame without a useful object. The self as the object of shame. Patricia Utermohlen used to have to cover up mirrors because her husband was so terrified of seeing himself exposed in them: he had become unbearable to himself, an object of acute humiliation. Quite often, in hospitals or homes, I see people with dementia put their hands over their faces, hiding in plain sight from a world of shame.

  * * *

  • • •

  Dementia is pitiless. It unpicks not just the sense of self but the control over that self. My father was never vain, but he did care about how he presented himself to the world. He shaved every morning without fail (and probably didn’t look deliberately in the mirror for the rest of the day); he polished his shoes and tied the laces with a firm double bow; he combed his hair, tucked in his shirt; when he went to work it was in a nice suit with the tie done up just so. Even when he was alone, he never ‘let himself go’ (I let myself go all the time). He used to say that ‘a gentleman is someone who uses his butter knife in private’ – and we’d hoot with laughter and mock him, because who talks about gentlemen and who has a butter knife? But I think he would have used his butter knife in private if he’d had one, and would have shaved on a desert island, and polished his shoes. Because you keep up appearances – and this isn’t a shallow thing at all, it’s rooted in the sense of self. Shame assaults that self-image.