The Last Ocean

by Nicci Gerrard

  * * *

  • • •

  ‘It’s important to talk of, say, hatred, or of murderous feelings,’ says the CEO of the Tavistock Centre for Couples Relationships, Andrew Balfour, much of whose work involves supporting couples through the illness that affects one of them and ensuring that they do not feel entirely alone and unsupported. ‘If people can’t acknowledge that, they may enact it or withdraw and cut off from the relationship. People need their strategies and defences.’ He talks of ‘containment’ theory, usually applied to infants: the idea is that development takes places within a series of relationships. He is careful not to imply that people with dementia are like children, and he dislikes the ‘saccharine infantilization’ of frail older people, but he says that, like children, they need a kind of containment. ‘And the container of someone with dementia needs containment themselves – it’s the Russian-doll model. Carers need support if they are to remain emotionally available. If, for instance, you’re screamed at over and over again, you need help to tolerate how that makes you feel.’ You can’t, he believes, do it alone. And it is vital that the carer’s work of looking after a person and ‘rescuing something meaningful’ is properly recognized: too often, he says, it is ‘invisible, unremarked, unrecorded’.

  Every story is different. I give a talk at Suffolk Family Carers and meet a man who looks after his daughter, who has mental-health problems, and his wife, who has dementia. He cares for them and does the household chores from the moment he gets up to the moment he sleeps. He had to give up work to do this profoundly important job that most people don’t recognize as a job; their income has plummeted. He has lost most of his friends and, if he stops to think about it, understands that he is lonely and sad. He is very matter-of-fact. He is just doing his duty. He doesn’t understand he is a hero.

  I meet a woman whose husband lashes out at her. She knows it is his disease, not him. He was a gentle person before he became ill and perhaps he still is.

  I meet a woman who looks after her daughter, who has epileptic fits that are gradually obliterating her, while at the same time looking after her mother with dementia. This woman wears a bright pink knitted hat and a pink scarf and has the kind of wilful, gallant cheerfulness about her that I’ve seen in other carers.

  I meet men and women who are old and not strong but who every day lift their partner, take their weight: it’s physical, strenuous work.

  I meet children who have taken their parent with dementia into their home and whose lives have been turned upside down.

  Children who are caring for a parent who never properly cared for them, even who abused them, when they were young, and it is as if they were in some way restoring order and decency to their world.

  Grandchildren who are part-time carers and worrying about how to do well at school as well.

  Carers who barely go out themselves any more: home has become a prison; they are waiting out the sentence together.

  Carers who have moments of hatred for the person they are caring for, and who hate themselves for hating.

  Carers (and this is almost every carer I meet) who feel guilty because they get impatient and lose their temper, or because they sometimes accept help from outside, or because they occasionally go out alone and do things that are just for them, brief moments of selfishness. Selfishness has a bad name – but it can be another word for sanity.

  I meet carers who are humorous, optimistic, tender and unresentful, who regard their task as a difficult privilege, something given to them, but who have nevertheless become depressed, ill, angry, poor, chaotic, flattened, trapped, heartbroken, utterly undone and at the end of their tether; they feel that they can’t go on and still they go on. And on and on and on. There are hundreds of thousands of them, not saints but ordinary people who too often struggle on alone.

  * * *

  • • •

  The most unsettling interview that I did turned out to be the one with Tommy and Joyce Dunne, in their neat, cheerful bungalow. It started out as a story of hope in the face of catastrophe: a man who came through terror and despair and who is now leading a good, purposeful life, trying to make lives better for others who live with the illness; a woman who has been unswervingly loyal and supportive through their marriage’s terrible ordeal, giving up her work to help him with his; a story of fidelity, courage, resilience and optimism. And it is that story still, but underneath it lies another one, much more complicated.

  I had been with them for some time, and for the most part we had talked about Tommy’s experience, Joyce helping him in the telling. And perhaps that sense of once more being on the sidelines of his story, not at the centre of her own, was the trigger for what came next. They were describing the play about dementia that Tommy had co-written and that they were both taking part in, and it sounded very jolly. They were smiling, laughing, joking, and out of the blue, quite matter-of-factly, Joyce says: ‘I would say we don’t have a relationship as a man and wife any longer.’

  I stare at her, taken aback.

  ‘No,’ she continues. ‘Tommy doesn’t look at me. And I live on eggshells. He will shout at me about anything.’

  She is still smiling. Tommy is also smiling, seemingly unperturbed by her words. I suddenly realize that, all this time they have been sitting together on the sofa, they haven’t looked at each other, touched each other, talked to each other. Everything has been directed towards me. Looking back at the transcript of our talk, I examine the pronouns they used (pronouns often give us away: along with prepositions, articles and conjunctions, they are the connective tissue of language and can reveal much more than ‘content’ words because we use them so often and so unthinkingly.) Tommy never says ‘you’ to his wife; he doesn’t say ‘we’ or ‘us’. He says ‘I’ and ‘she’.

  Joyce’s words turn a dial in my mind: the performance that had been played out in front of me takes on a different meaning: no longer a movie by Richard Curtis but a play by Pinter or Beckett, a scene about hard, grim loneliness.

  ‘It’s true,’ Tommy says calmly. ‘I can’t do reality any more.’ He sounds like he’s talking about a stranger, one he has no responsibility for.

  ‘And it’s sad,’ says Joyce. ‘It’s very, very sad.’

  ‘It’s as if all emotions have been stripped away,’ Tommy continues, as if she hasn’t spoken. ‘I can’t understand why she needs to be told why she looks nice. It makes no sense. I see it logically but the empathy part doesn’t exist. It’s been taken away.’

  I remember Professor Martin Rossor, clinical neurologist and National Director for Dementia Research, in his pleasant room in Queen Square, telling me about people with dementia who lose empathy and who no longer feel a sense of distress, for others or even themselves. I also remember his saying that perhaps the loss of empathy is what denotes a loss of self. I don’t speak: what can I say?

  ‘If I said, “I love you,” I’d only be saying it because I’d been told to.’ Tommy still isn’t looking at Joyce. ‘I used to think that she was the sun rising every morning and going down in the evening. I remember that I did feel that once . . . To get home from work and to see her.’

  Joyce nods. ‘He’s no longer interested in me. He never says: How was your day? Who did you meet? Do you want tea? It’s not worth saying anything to him: sometimes I just go out of the room, count to ten, and then return.’

  ‘But when she goes out’ – still not saying ‘you’ to Joyce, who is talking of heartbreak – ‘it’s as if she’s been out for minutes, not hours. I have no sense of time passing.’

  I say something inadequate, about how profound this loss is, a sucker punch the illness had delivered.

  ‘I grieve every day for the person I was,’ says Tommy. ‘I miss the Tommy I used to be. Sometimes I wake up and I don’t recognize Joyce. It frightens me. Like seeing myself in the mirror and thinking it’s my father.’

  ‘He gives ou
t the wrong message,’ says Joyce. ‘He’s the most loving person to everyone else. He’ll give anyone a hug, tell them they look nice.’

  It’s true: when they collected me from the station, Tommy hugged me and we linked arms. He felt adorable.

  ‘Well, we always push the closest one away.’ Tommy gives this bland assessment smilingly, agreeing with all that Joyce says.

  ‘He’s in this Twitter group,’ says Joyce. ‘He’s a different person then! He loves it. I’m looking at him, and he’s so excited and like this.’ And she makes an animated face and lifts up her hands expressively.

  I ask Joyce if she’s angry.

  ‘Angry? Oh yes! I know it’s the illness, but I’m angry. I can’t show it, though: Tommy would just throw something at me.’ Tommy nods mildly. ‘I love Tommy, but I’m not in love with him any more. He’s pushed me further and further away from him.’

  Not long ago, she persuaded him to go to marriage counselling with her, but he hated it: ‘It was hearing about reality. It was hearing about my failings. There’s a difference between knowing how to do something and doing it. I could read a book on how to fly a plane, but I couldn’t fly it.’

  Their two children are a great support to her: her daughter tells her she must live her own life; her son advises her not to let Tommy control her. ‘Because he does. It’s because he’s losing so much.’

  ‘When she’s not there, I miss her,’ says Tommy.

  ‘I feel like I’m mourning,’ says Joyce.

  ‘It’s the long goodbye.’

  ‘But I can’t get depressed. I can’t. I just get on with it.’

  ‘I cry,’ says Tommy.

  ‘I’ve never once seen you cry!’

  ‘I do, though. When I’m alone. When she’s here, I feel safe.’

  ‘I miss so much. Work. The things I used to do and love to do. All our plans. I miss intimacy: a kiss, a cuddle. If I ever try to cuddle him, he’ll just give me his cheek, trying to get it over with. But he can’t cope if I cry. Never could. I have to push things down and down and down. Sometimes I think he would never stand up for me. It’s really hard. It’s a terrible, terrible thing, how it’s made us question our whole relationship, which has always been so strong and good.’

  ‘I’m on an escalator. It’s quite a slow movement, but it’s down.’

  ‘I don’t think we’ve got hopes left,’ says Joyce, tearless and bleak.

  ‘Dementia takes hope away.’

  ‘But I’m proud of myself,’ says Joyce, ‘Very. No one else would put up with Tommy and, if it was the other way round, Tommy wouldn’t be here.’

  ‘I wouldn’t. If she’d done to me what I’ve done to her, I’d have ripped my hair out long ago.’

  ‘I’ve gone through hell,’ says Joyce.

  Tommy looks at me sympathetically. ‘I know. If you make a film, you want a happy ending, don’t you?’

  I went away feeling shaken by this interview and by the cruelty of an illness that can attack the very things that are most precious – taking away not only memories and capacities but love. At the start of our meeting Tommy had shown me concentric circles, with the world at the edge, and I at the centre. It was as if for Tommy, only I remained intact, the links connecting it to humanity fraying and broken. How lonely for him, how lonely for her.

  * * *

  • • •

  (And this isn’t quite a happy ending, but the following day Tommy sent me an email:

  I really enjoyed our talk, but the most important thing I will take away from that is I am not letting dementia beat me, so why should I let it take away my love for Joyce? I am really going to make the effort to get back to the love that we had, or should I say have, because if you fan a fire that’s nearly out you can get it to roar again, so hold the last lines in that chapter.

  And several months later he wrote to me again:

  It’s been hard work every day trying to control the beast that is dementia, but Joyce has been fantastic. She has somehow learned to adjust . . . and accepts that on bad days it’s the dementia not Tommy that’s speaking and doing things, and has learned that by going with the flow rather than arguing or confronting me she can calm me down. She now understands that none of those things are directed at or meant to hurt her. We now have lots of laughs and plenty of cuddles, therefore we are in a much happier place than we were before we met you and realized that if we didn’t make the effort, then something beautiful would be lost.

  Joyce wrote to me as well, reiterating what Tommy said:

  While it is still hard to see Tommy not be able to do all the things he once did, we are at a happier place at the present moment. I still miss the old Tommy and wish with all my heart that I could have him back, but I know that cannot be. We try to enjoy all the time we have together and I enjoy going to the various groups with him, as I know that to really enjoy quality time with him I’ve got to enter into his world. There are a few bad days when dementia wins, but the good days help make up for them. The most important thing is to never give up. I wake up every day and hope that Tommy is still here and that he knows me.

  In this stoic message, a phrase stands out: ‘I’ve got to enter into his world.’ There’s the carer’s perpetual dilemma: how much to hold on to the old world, the independent self, and how much to relinquish that in order to be kind, to be loyal, to keep a relationship alive, to care.

  ‘Hold the last lines in that chapter,’ Tommy had written in his previous email. Full of admiration and disquiet, fearful with hope, I’m holding.)

  8. CONNECTING THROUGH THE ARTS

  ‘And hand in hand, on the edge of the sand

  They danced by the light of the moon.’

  My father loved to dance; as a young man, he’d been a nimble, fluent dancer and, old, his body still remembered all the steps and he was light on his feet. At Sean’s fiftieth-birthday party in Sweden, my father took to the floor and blithely danced the tango, proud of his agility, steering his surprised partners around the old barn. He loved to sing and from time to time he would sit at the piano we had for a few years and pick out tunes, jazzy, ragtime, improvised, the tip of his tongue on his lip in happy concentration. He liked painting, usually landscapes and still lifes in watercolour, but occasionally swift sketches in charcoal. Even during his last holiday in Sweden with us, he would sit with a paint palette and spiral-bound pad, looking out at the lake and the trees, occasionally dipping his brush in bright colour and trailing it across the thick paper. And he took pleasure in reading stories and poetry aloud, acting things out, boyish in his unself-conscious enthusiasm. In some ways, he was a shy man, but there was a buoyancy and confidence about his everyday creativity – as if the flow of life, in and out like breath, was unimpeded.

  In his last terrible months there would be music playing in his little room downstairs, and we often read poems to him: the same ones each time, the ones he had read to us many years previously. ‘The Owl and the Pussycat’, Ogden Nash fragments that used to tickle him, ‘The Highwayman’, ‘I Wandered Lonely as a Cloud’, ‘If’ – all the golden oldies. One time, I went into his room with Sean and all my four children and we read – chanted, really, raggedly in unison – ‘I must go down to the seas again, to the lonely sea and the sky’ – and he, who could no longer speak, joined in . . . We kept going, leaning towards him, smiling, tears running down our cheeks; he remembered the ends of lines, the words that rhymed, phrases and little fragments of freedom and friendship and death: ‘the lonely sea and the sky’, ‘steer her by’, ‘all I ask’, ‘sweet dream when the long trick’s over’ . . . In that tangled-up, snarled-up, muddled-up mind where everything seemed blocked off, barriers thrown up around the wreckage to prevent exit and entrance, the roar of the world beyond him, the memory of words he had loved long ago still delicately chimed. Moments like this were a gift – to him, and to us as well, miraculous spaces of reciprocity th
at opened up between us.

  I don’t know if this was happy or sad. It makes me want to howl. But I do know that art can seem magical in the way that it can find a person who had seemed quite lost. A golden thread weaving its way through the razed civilization, the rubble and chaos and shattered meanings, and a light glimmers in the darkness and a voice speaks. I am here. I am here. I was always here.

  * * *

  • • •

  A few months ago, turning on the radio, I heard a voice saying that creative writing can help wounds heal faster. Startled, I turned the volume up. Volunteers were given small cuts; half were then asked to write about something distressing in their life, the other half about something mundane. The wounds of the confessional writers healed substantially more quickly. A thought or a feeling is felt on the skin. Our minds, which have power over our bodies, are in our bodies and are our bodies: we cannot separate the two. Words, self-expression, can tangibly help pain and suffering. Art can be medicine, for body and soul.

  William Utermohlen, after he was diagnosed with dementia, withdrew in loneliness and terror into his own shrinking world. But the day came when he picked up his brush once more and for the next few years he made, in his astonishing self-portraits, a journal of self-loss that remains unique: the I observing the I that is disappearing. They are artistic, medical, psychological documents. They show the battle to preserve his identity as an artist and as a human being, uncannily occupying the interior world of the artist and also the exterior world that watches him. William Utermohlen had always expressed himself through his art, and with these self-portraits he was in communication with the world once again, and the world was in communication with him.

  At the Wellcome Foundation, Dr Seb Crutch – a neuropsychologist who was once one of William Utermohlen’s physicians – is heading a project called ‘Created out of Mind’. He wants to both ‘enrich our perceptions’ of what it is to live with dementia, presenting it instead as a multiplicity of diverse and not always or inevitably distressing symptoms, and also to explore the ways in which art can enrich the lives of people who live with the illness. Not art as a hobby, or a way of passing the time, but art as a way of unleashing everyday creativity and helping people remain part of the world’s intricate web of communication.