The Last Ocean

by Nicci Gerrard

  Claudia Wald says that to move from fear to certainty can be a relief, and Sube Banerjee agrees. ‘It can be really bad not to know. Of course, some people don’t want to, but by knowing you have access to care. Knowledge is power trumps ignorance is bliss.’

  But still, the sound of the gallows being built beneath the window . . .

  ‘I take my cues from them,’ Claudia tells me. ‘I sometimes use euphemisms: it is possible to be honest while omitting some things. There is no simple rule: you have to respond to each person as they present themselves. I do not say: “It’s a progressive, relentless disease for which there is no cure,” because how many people can live with that? You have to instil as much hope as possible; make them know they are courageous to come – and they are! – and that by coming they will be supported.’

  The diagnosis of dementia may be a confirmation rather than a surprise – a small step across a shifting, blurred and arbitrary line. Nothing changes and yet everything does. The person is no different the day after the diagnosis than in the days before – they are in a world that’s both eerily the same and yet utterly changed and which can hold unspeakable terrors for those who are unsupported and unprepared. The bravery and endurance that the diagnosis requires – from the person who has the illness and from those who care for them – is very great. It shouldn’t have to be borne alone. Often it is.

  Andrew Balfour is a psychoanalytic psychotherapist and the CEO of the Tavistock Centre for Couples Relationships, where he has developed the centre’s ‘Living Together with Dementia’ work. Both the affected individual and their partner are supported by therapeutic, person-centred interventions, particularly at the point of diagnosis, where couples can feel abandoned. He tells me of a time early in his career when he told a patient that he had dementia. He remembers watching him and his wife through the window of his room as they walked away, supporting each other, in a ‘very powerful image of distress and mutual love’.

  The disease crept into my father’s life slowly and silently, no broken windows or alarm bells shrilling, just occasional rustles in the night, a creak on the stairs, odd things missing from their usual place but not missed. I don’t know when he suspected and I don’t know when we did either, or which came first. His mother had had dementia at a young age; his elder sister too. And my father had always been absent-minded – which is no indicator of dementia, but it felt like one, as if his future was woven into his benevolent, abstracted personality, the way he could disappear into his own secret world where no one could follow.

  Fog thickened. His vagueness became a kind of lostness. His cheerfulness (perhaps a form of stoicism) was punctured by an anxiety that sometimes blighted his final decade, even when he was – this is one of those catch-all phrases that catches less than it drops – ‘living well’ with the condition.

  Time heals; time undoes. In those sliding-down years there wasn’t one thing, a particular event, though of course I look back now and I recognize the signs. When he struggled to remember the name of a flower that grew in the hedgerow. When his hand, holding a mug of tea, shook. When he lost his hearing aid yet again, lost track of what he was saying, lost his way (but we all do that). Scraped the car against a gateway. Left the key in the lock. When we asked him the time and he told us the cricket score (but he always was absent-minded). When on his face I would see an expression I didn’t recognize (but he was always a little mysterious: he stood just out of reach). We didn’t talk about it at first: when is the point at which you say, Do you think that something is wrong, that your memory is beginning to fail you?

  There came a time when we all knew. He went to see a doctor; he had his memory test; eventually he received the sentence, hedged about with reassurances and strategies and tact, but there it was nonetheless: you have dementia. For me, it wasn’t a punch to the solar plexus, more like a soft nudge that pushed him over that moveable line – from knowing really to really knowing. In fact, I can’t even remember hearing the news.

  My mother is a fighter; she believed that together they could face down the disease, hold it at bay and beat it. My father is a stoic. (Was a stoic.) He believed you must simply and with dignity endure what life hands you.

  I don’t know what he felt about the diagnosis. A man of inwardness and reserve, he didn’t talk a great deal about his emotions and believed in getting on with things, no matter what. Up at the same time every day; make the breakfast, empty the dishwasher, mow the lawn, pay the bills, feed the birds, prune the roses, do the crossword; keep to the structure of the day, the week. That shape standing to one side, that shadow falling coldly – don’t give it attention. Keep looking ahead; not too far ahead, where darkness obscures the path, just a few paces.

  His role in life had been one of steady competence: he was the protector and now he needed our protection, the carer, and now he needed our care. He had looked after the finances (long after he could handle money, he kept his soft leather wallet with him and would often take it out, looking through the old membership cards that were in there), the garden, done the shopping, read the map and driven the car. (Claudia Wald tells me that, for men in particular, the issue of driving can be a watershed: ‘It’s a further stripping away of the self.’ It’s not uncommon that they refuse to take the test because of the risk of losing their licence.) He had kept the house in order, fixed things that were broken. Now something in him was broken, or breaking. To acknowledge vulnerability when his task had been to help vulnerable others was painful, almost impossible. He didn’t fall apart and he didn’t articulate his fears, but every so often he took to his bed, where he would lie under the covers, shaking. Life went on around him – the hum of the vacuum cleaner, the rise and fall of voices, the chink of cutlery, a phone ringing somewhere, a dog barking, cars outside, the smell of baking, of garlic frying, my mother coming softly into the room and standing beside him a while – and he would lie there until the shaking stopped.

  * * *

  • • •

  Some people do fall apart, especially when the diagnosis comes at them like an ambush. Tommy Dunne had been told he was bipolar, and that was bad enough. But when he got lost in a car park and had a panic attack so severe that he was taken to hospital suspected of having had a heart attack, he found himself referred to an old-age psychiatrist.

  ‘I thought, “Old-age? But I’m only fifty-seven.”’

  The doctor told Tommy and Joyce that the good news was that Tommy wasn’t bipolar after all, and neither did he have a brain tumour. But he did have Alzheimer’s. We tend to think of Alzheimer’s as a memory-loss disease because, as Sube Banerjee put it, ‘Memory is more measurable.’ However, Tommy Dunne’s particular version of the illness affects perception more than memory, is spatial as well as cognitive: ‘Little bits of me feel like they’ve dropped off and gone missing. Everything seems nearer than it is; puddles look like gaping holes; the escalator is a chasm. Then there are gaps and jump-cuts in time. I remember being on a bus journey that I was very familiar with, had done a hundred times, and suddenly I’d missed several stops and had to get off and go back in the other direction. It was like watching things on CCTV, things jerking forward.’ He smiles at me, his round face strained. ‘I’m frightened of my own shadow, if I’m honest.’

  Their doctor broke the news gently, telling them it was the best dementia to have and that there were many things that could be done to help him. For Joyce, it was a relief. For Tommy, it was not. He immediately imagined himself at dementia’s end-stage, like one of Philip Larkin ‘old fools’ in his bitterly bleak poem of that name. Pessimistic, corporeal, viciously mocking but with no target to mock, the poem describes not simply anger and humiliation at old age but fear and disgust, when the mouth ‘hangs open and drools’ and the body disintegrates into unlovely body parts: ‘Ash hair, toad hands, prune face dried into lines.’ Tommy’s imagined future self filled him with utter dread.

  Things changed only whe
n he and Joyce went to a post-diagnostic group and Joyce volunteered him to be part of a group working on dementia (‘He gave me a stare that would have stopped a galloping horse’). Grudgingly, he went along, and once there he found that speaking out ‘for my peers, the ones who don’t speak’, gave him confidence again. Bit by bit, he became an advocate and a spokesperson for people living with dementia: he had a purpose, a community and a status.

  Tommy tells people that he meets he has dementia because he doesn’t want anyone to think he’s stupid. ‘I’m ill, that’s all.’ He gets very tired (after he gives a talk he feels like he has run a marathon) and he gets very angry, and ‘I grieve every day for the person I was. I miss the Tommy I used to be. But I never say, Why me? Why not? It’s the straw I’ve drawn and I have to make the most of what I’ve got – like a torch won’t work without a negative and a positive. This is the best I can make.’

  * * *

  • • •

  Some people who get the diagnosis of dementia have already lost the capacity to understand what it is that they live with, and that lives with and inside them. They hear the words, but the words have no grip on them. Some – like Theresa Clarke – have to look at the truth full in the face (‘It is what it is,’ she says. ‘I’m in it. I’m not embracing it and I’m not fighting it’). But as Claudia Wald acknowledges, for some it is an impossible sentence; they don’t want to hear, and won’t. Indeed, she believes that for several of her patients the diagnosis, however kindly delivered and appropriately supported, would be ‘the death of them’. She thinks of a particular man she has recently been seeing with a ‘mighty intellect’ that is crumbling: she is helping and supporting him and he is on the drugs that hold back the advance of the illness, but she is not giving him that word that would topple him.

  Rebecca Myers’s father feared the diagnosis would topple his wife – whom he adored and fiercely protected. At the official diagnosis in 1999 she was, like Tommy, only fifty-seven. It was Rebecca – a trained nurse – who insisted that her mother needed to be properly assessed, while her father still resisted: ‘He just couldn’t cope. He had this terrible internal struggle: having to face something he couldn’t bear to face; knowing what was coming and not knowing. He wanted to take away her struggle.’

  Rebecca’s mother was always terrified of the illness, having watched her own mother lost to it. Her father insisted that she should not be told the diagnosis. ‘And we colluded in his decision,’ says Rebecca. ‘We never told her. Would it have helped her? Now, as a professional, I’d say: How can you possibly not disclose it? But it came from a place of love. She would ask what was wrong and we’d say, “Something’s changing a bit in your brain,” and she’d say, “OK. OK.” The hardest bit was when she was between knowing and not knowing, going, “Why am I like this? What’s the matter with me?” She started to hallucinate and they put her on meds for a while – that pharmacological cosh. She’d get up at night. Sometimes I’d arrive in the morning and find Dad in the garden, smacking his head against a tree. No one knew how to handle it. The services aren’t like they are today, though the Alzheimer’s Society person was fantastic. I was working part-time and looking after my two little children and trying to help Dad, but he was completely exhausted and he was grieving massively, and so I gave up work, because I couldn’t bear it. And he couldn’t either; he just couldn’t bear to see her distressed, hallucinating, screaming. Sometimes she was frightened of him, and of me. I tried to talk to him about strategies. For instance, they used to love dancing; they went to dance halls when they were younger, and I remember how they would jive together in the kitchen. So now he would put on music and they would dance together.’ She pauses; she isn’t really talking to me any more. ‘Theirs was a wonderful love story.’

  (My parents also loved dancing, my father especially, who did a nimble foxtrot and a graceful waltz and knew how to tango. They too used to dance in the kitchen while we, embarrassed teenagers, would look away, not wanting to watch their intimacy. When they celebrated their sixtieth wedding anniversary the year before my father’s wretched final year and his death, we arranged a thé dansant for them. It was in September, cool and blustery-bright, and we hired a little marquee for their garden. We put on an elaborate, absurd English tea – miniature cucumber sandwiches, tiny cup-cakes, éclairs cut into the shape of swans, coin-sized scones – and we set up speakers for the music they had loved in their courting days. We all wore fancy clothes, and when they were led into the garden all dressed up, she in a long red dress and he in his evening suit, we made a circle around them and they danced. Arm in arm, they danced together as the day shaded towards evening. There are things we should hold in our memories, however frail and subjective those memories may be, to set against the times of wreckage and ruin.)

  * * *

  • • •

  For every diagnosis, half-diagnosis and diagnosis withheld, there is an avoided diagnosis: so many men and women up and down the country who, gripped by dread and humiliation, hide from their disease and in so doing hide from the world, locking themselves in with the monster they most fear.

  Denial can be a valid and necessary strategy. Truth can be brutal, and we can’t face up to everything. Michael Kinsley, the American political journalist and founding editor of Slate magazine, whose self-identity depended on ‘his edge’, has exuberantly defended it as a ‘legitimate option’. Kinsley for many years kept his diagnosis of Parkinson’s Disease secret – from other people and largely from himself, shrieking inwardly every time someone mentioned Parkinson’s and cognition, Shut up! Shut up! Shut up! He dreaded being pitied and ‘written off’ and he would refuse to look at the research and the implications of his condition: ‘I’ll stop there, if you don’t mind.’ But denial is a strategy that depends on secrecy; eventually the secret springs a leak, and there often comes a time when it is no good just plugging the holes in the dyke. Truth will flood in.

  There is a difference between the kind of denial we all practise and which makes the world go round and the denial that is a corrosive, self-blinding avoidance. One is a strategy to protect the vulnerable self, like a bulwark built against the storms of the world; the other is self-destructive and often agonizing. And it spreads: the area that is being desperately fenced off grows larger and larger, like a stain spreading, until everything becomes terrifying, everything taboo.

  The story that Andy and Claire Bell tell me about Andy Bell’s parents is one of a terrified refusal to accept dementia – a refusal that actually meant it gnawed and burrowed its way into every corner of their life, growing fat on buried secrets and lies. Before we talk – I know them already; their daughter and mine are great friends and they have been a constant, generous presence in her life – we visit Andy’s mother, Jan Bell, in the home where she now lives. She is small, slightly plump; her grey hair falls around a soft, sweet face. Claire says that she was always a ‘gentle, self-deprecating’ presence. She is neatly dressed; her skin is smooth and she looks peaceful and content, younger than seventy-three. Her sentences are a refrain of amiability and gratitude (‘I’m lucky,’ she says; and ‘I’m very happy’; ‘Everyone is so lovely to me’; ‘Oh how lucky I am’). Jan Bell believes that she is helping to run the residential home, cooking and making beds and ironing (‘This is not entirely true,’ says her daughter-in-law wryly) and she can be dismissive of other residents who are no longer able to talk, who wear nappies and spend their days asleep on the sofas, toothless mouths open. She blithely removes things from their rooms – teddies, soft toys: recently Claire opened her wardrobe to find a lifelike baby doll staring up at them.

  It would be easy for this to be a cheerful, slightly cute story – oh, the funny things that the old get up to! But while Jan Bell might be placid and contented now, her story is full of violence. When Andy tells it to me, his shoulders are heavy and he is visibly distressed. It’s the story of a marriage and of a family, for while dementia is an illness,
it is one that often feeds upon the stuff of the past. Jan and her husband, Eddy, both came from poor and damaged families. At the time of their marriage, Eddy Bell was having an affair with his wife’s best friend. She found out and she never forgave him. ‘They loved each other; they were in their way devoted. But there was always that anger.’ Perhaps in retaliation, she had an affair herself: Andy remembers walking into her bedroom while his father was working away and finding their neighbour in bed with his mother. ‘She took me out of the room and told me I was having a bad dream – I didn’t forgive her for that.’ When his father returned, he kicked down the door of the neighbour’s house and beat up the man, who was never seen again. Andy thinks that his mother had other affairs: he has memories as a child of his parents’ bitter arguments, her hitting out at his father, running after him to stop him from leaving, hanging off the car as he drove away. Eddy Bell made his wife have an abortion because he didn’t believe the baby was his. So there were, Andy says, understating it, ‘complications and resentments in their relationship’.

  When Jan Bell started forgetting things, she and her husband literally shut out the rest of the world. Although they had been sociable, they no longer went out. When Claire and Andy phoned, Eddy would prompt his wife, filling in the gaps and correcting mistakes, covering for her; they had multiple strategies for hiding the truth. Even when Eddy discovered he had all-body terminal cancer they kept the doors to their house firmly shut. Neither of them could cook any longer, and they were living on crackers; their health was rapidly deteriorating. Ashamed and terrified, they sought no help at all – not from professionals, nor from family and friends.

  ‘As her dementia got worse, as she was increasingly remembering the distant past and was back in that time of betrayal, she –’ Andy stops. ‘They were in such a stressful position,’ he says, looking into the distance. ‘They were not coping.’