The Last Ocean

by Nicci Gerrard

  When is it time to say goodbye and leave the party? Is there ever a point at which we cease to be ourselves and become ‘a little piece of hell’?

  During his last months, the disease attacked my father relentlessly on all sides. He had no way left to defend himself. I used to say that he had lost everything – but that’s too simple. In some mysterious way, he did not lose his self. Somewhere inside John Gerrard there was always a John Gerrard. When people (me) reach after metaphors to describe what happens to a person with dementia, nothing quite fits. My father wasn’t like a boat slipping its anchor and drifting out to sea – or not only. He wasn’t like a landscape, ruined and the wind ripping through it; a city, bombed; a house, demolished; a deck of cards, shuffled; a glass, dropped; a manuscript torn into shreds.

  Something is wrong. I don’t know what’s wrong. Something. What?

  A complex brain disease, for which there is no cure . . .

  He was like a man, an infinitely helpless and bewildered man, at the mercy of the world.

  4. MEMORY AND FORGETTING

  ‘All this goes on inside me, in the vast cloisters of my memory. In it are the sky, the earth and the sea, ready at my summons . . . In it I meet myself as well.’

  My father might have been absent-minded, but he was very good at remembering things: the speed of light, the dates of battles, the periodic table, the Latin names of plants and the English ones of wildflowers, the bones in the body, mathematical equations and chemical formulae, whole chunks of poems, the colours of flags, capital cities . . . Then he began to forget and the painstaking acquisition built up over a lifetime gradually fell away.

  When did my father’s dementia begin? We don’t know. We’ll never be able to put a finger on the danger spot: there. Like fog that creeps up stealthily, imperceptibly, until the foghorn booms and suddenly there are dark shapes looming at you out of shrouded darkness – you think you’ll notice, but often you don’t. Then you can’t.

  I wonder when it began for my father, that unobtrusive slide of memory, the wind going out of his sails. I’m sure my mother sensed it before the rest of us. But what about him? When did he hear the boom of the foghorn? Was he very scared? Was he sad?

  ‘Life without memory is no life at all.’ Without memory, things don’t fit together; the narrative of one’s life crumbles, the walls of one’s self tumble down. Without memory, you are adrift in a helpless present tense, and ‘the world glides through you without leaving a trace’. How can we love without memory, have relationships, empathize or plan or imagine or anticipate, keep track of oneself, stand on firm ground? Memory as thought before thought and knowledge before knowledge; memory as a way of editing our own life; memory as a way of joining all our different selves together into a coherent whole; not a tool for thinking but an act of thinking; memory as a lie, a creation, a different kind of truth. Collective. Deeply personal. At war with death.

  The terror of losing memories is the terror of losing the active self: that which holds us precariously together into the shape we have built up over our lives. To have and to make memories enables us to be the (often inaccurate, self-deceiving or misinformed) narrator of our own lives. Memories connect us to our past and launch us into our future; they link us to other people and bridge the labyrinths of the inner self to the abundance of the outer world. But memory’s vast cloisters can crumble and fall into darkness; are the memories still in there, like restless ghosts, or have they been obliterated? Where, as Sally Magnusson asks in the title of her groundbreaking book about her mother’s dementia, do memories go? And what are memories anyway?

  In the summer of 2017, my mother and I revisited the house where our family lived for the first nineteen years of my life. It was something I had wanted to do for a long time. I drive past it every time I go to see my mother, and catching a glimpse through the trees my heart skips a beat: that was my past; there, half hidden, was where I used to be young. My siblings and I all grew up in the house; it was the architecture of our childhood, where we became the people we are. I had vivid memories of the place – too vivid, too sunlit, glowing with colour and replete with feelings; not just a home but a locus of selfhood and a place of innocence.

  My mother and I went up the drive together and rang on the bell. They let us in.

  Forty years had passed since we were here, and the house had changed a great deal. Walls had been knocked through and other walls built; rooms rearranged and joined together; trees chopped down and others grown tall. And inevitably, our memories had hardened into shapes that perhaps had more to do with how we wanted to remember those times than with reality. The two of us walked inside, stared about us, waited for something to happen.

  Then, all of a sudden, at a twist in the stairs, the past gushed back so powerfully and purely that it didn’t feel like memory. It felt like being there, being young again, and I was almost sick with longing and distress. And then again, those black and red tiles by the front door; that larder built into the sandstone; that cornfield by the side of the house that I used to run down with my siblings, and I was there once more, trying to keep up, bare, scratched legs and eyes full of the sky, and I could almost see our dog, Candy she was called, a golden retriever with sorrowful eyes. Now the house was full of ghosts. My mother stood by the window of the bedroom that used to be hers and my father’s and she looked out at the garden, tears streaming from her nearly blind eyes, down her old and captivating face. Some memory is muscle-memory; much is voluntary – we search around for the memory, like opening drawers in the mind, make an effort to recall it. But here, memory was involuntary and engulfing, and felt more like a return to the past than a recollection of it. We were in the ‘permastore’ of long-term memory storage, where the past becomes ever more vivid. These flash-memories, which like lightning in the sky can suddenly illuminate a hidden landscape, strike everyone: they are a gift, an injury, seemingly random, triggered by the smell of sweet peas, a bar of music, the way light falls through the trees. Back come our former selves, unbearably familiar and yet almost strangers. Where have they been hiding all this time?

  Sometimes I remember my father because I think about him; I make a hard effort to see his face or recall his words, summoning him back from the dead. Sometimes out of the blue he returns to me: when I see the birds come to our bird table (for he would always gather crumbs from a meal and put them out for the long-tailed tits and the finches). When I notice the wildflowers (he knew all their names and tried to teach me, though I retain only a few of them). When water boatmen skim across the surface of some pond or ditch. When I’m by a rock pool and it’s almost as if he is suddenly beside me, peering into the crannies like a dreamy boy. Or looking at star-spangled skies and not knowing the names of constellations (but he would have). Or walking along overgrown footpaths and I remember how he would take his time tying back wayward brambles for walkers who might come after us. Moths knocking against the window with their powdery wings (he would catch them in his hands, carefully). Bees (he built habitats for them, to encourage them into the garden). Bonfires. A certain gesture. A figure in the distance (who isn’t him). The sound of a chuckle. And there he is, unlooked for, alive again.

  * * *

  • • •

  My father, in his years of forgetting, would gather stories about him in an act of self-protection. He had revisited them so often they were safe places for him. He didn’t get lost in them: he knew his way around and was agile and sure. His path was worn smooth by repeated use, and nothing tripped him up or ambushed him, no shadows in the corners or craters to fall into. He had memories he could enter through any portal, wander around, touching familiar things, seeing them again, smelling pine trees and mushrooms and bonfire, fresh paint and the sea, hearing voices of old friends. His face would ease and look younger. He remembered being evacuated during the war and tramping the countryside; Finland and the saunas he took there; Egypt, where he was sent on his National Ser
vice; his university days. He remembered being carefree and youthful, just starting out – and the photographs of him when he was young show someone slim and buoyant, a zest about him. But bit by bit through those dementia years the gates of memory started to close; he would falter and stumble in the telling. There were fewer and fewer places he could enter, until finally, there was nowhere left to return to where the ground did not shift and ooze under his feet. No safe place.

  We picture the memory as a place in which things are conserved and stored: a library, an archive, a chest, a wax tablet on which impressions are made and then rubbed away, a filing cabinet, a computer . . . Things are ‘burnt’ or ‘imprinted’ on to our memory. Trying to remember something feels like rummaging around in the attic of our mind, in dusty corners, in search of that elusive object: where have we put it? ‘If only this could be your memory. A spacious room. Light falls through big windows. Everything is clean and orderly. Your memories stand in rows along the walls, meticulously updated.’

  But memory is an ‘an activity, not a vault . . . a process not a place’: stored in different parts of the brain, memories are synchronized and work together ‘like an orchestra’. Virginia Woolf compares memory to a ‘seamstress, and a capricious one at that’, running her needle ‘in and out, up and down, hither and thither’, so that a whole ragbag of experiences is delicately, intricately joined together. And memories are no older than the last time they are thought of; ‘there are no “read only” files’. To remember something is to create something new: it happens in the present tense, so that in the act of memory old selves are created afresh – the rough draft of a life that is being continually revised. Subjectivity is built into the very nature of memory. Memories are fallible, frail and representational – and at the same time, imaginative, flexible, creative and re-creative. They are the stories we tell others and tell ourselves, and they are the way we can recognize a self that persists over time.

  Memory is always dominated by forgetting. If memory is the library or the cabinet, forgetting is the sieve, the thing with gaps – it’s ‘the minus sign’ and ‘exists within remembering like yeast in dough’. We have to forget or we will go almost mad with the overload, as is demonstrated by the sixty or so people identified thus far who possess the highly superior autobiographical memory known as HSAM. They can remember most of the days of their life as clearly as most of us remember the recent past. They can give the day and date thirty years ago, say, on which they did a particular exam, or tell you what the weather was like, what they and all their friends were wearing; they can remember a smell, a feeling, a mood . . . One middle-aged HSAM woman recalls a remark her mother made to her when she was a small child, and the memory brings back the flare of resentment that she felt all those years ago.

  Memory needs its ‘garbage heap’. Recent research has shown a connection between disturbed sleep and cognitive impairment. We have a nocturnal cleaning system (the glymphatic) that removes proteins called amyloid-beta, which accumulate into the plaques that contribute to Alzheimer’s and dementia. During sleep, cerebrospinal fluid flows through the spaces between neurons, flushing proteins and other neural waste into the circulatory system and away. This is one reason why chronic insomnia is a risk factor for dementia. Another is that, in deep sleep, with its large, slow brain waves, fragile new memory traces are consolidated into more permanent forms of long-term storage. The memories initially encoded in the hippocampus are moved to other areas of the brain, clearing the slate, as it were.

  The body is unimaginably complicated and clever. It ‘knows’ that the weight of remembering, the hoard of recollections, is an impossible burden. It knows we need to remember but we also need to forget. Sometimes when memory floods back pure and raw, as it did when my mother and I went to visit our old house, it can feel like a curse. Intense memory hurts; we need to recover from its injury. It does not feel like recollection – a dispassionate and voluntary pondering on past events – but more like an ambush from within, grabbing us, dragging us back to the past that we thought had vanished, or we thought we had escaped. Memory is also trauma; to forget the past is to lose our memory of loss. If love is intimately bound up with remembering, so too is grief. Love and grief and loss can overwhelm us.

  My mother used to tell a story from her childhood: it was one among her collections of anecdotes, shaped and polished and taken out at family gatherings. In 1941, during the war, she was evacuated from Palestine with her mother and brother. She would have been nine. The ship they were on, the Georgic, was bombed in the Gulf of Suez and they were put in a lifeboat, while behind them the ship slowly went down. My mother would tell us about the strong young sailor who picked her up and swung her over the side into the boat. And how when they were back on the safety of land a cry went up that someone’s handbag had been found. The group of people, who had been leaving Palestine with all their worldly possessions on board, went eagerly to see whose it was – and of course, it was my mother’s toy bag, containing no treasures.

  That was the little story. I never really thought about what lay around its neat, domestic edges. Then a few years ago, out of the blue, she started to talk about another memory: the bombing had created a massive oil spillage on the surface of the sea. The water was on fire, and in the water – burning, drowning – were people crying out for rescue. Some of them she knew; they had been her neighbours and friends and now she saw their faces in the flames. But the lifeboats were already too full and so they rowed through the figures in the water. Her memory, her little story, was a screen against this terrifying episode; the bag had been a flimsy shield against the horror, but it had served her for a remarkably long time, until in age it would no longer do. We all have the stories that we polish and pass around, and we all have screen memories. But they can be fragile defences against the floods: my mother’s story has ceased to protect her from what happened nearly eighty years ago. Now she remembers what she tried to forget and she dreams of people reaching out to her from the flaming water.

  Remembering gives us our sense of self, our narrative, our identity. Forgetting keeps us sane. In dementia, this subtle negotiation between what we keep and what we let go of can break down. The distant past floods back, unmediated, with a freshness that can be joyful or tormenting, while the recent past fractures and disappears. Yesterday is swallowed up by darkness, but sixty years ago remains vivid. My father was lucky; he most often remembered saunas in Finland, carefree days at university. That old woman I saw in the hospital bed who was shouting out: ‘No, no, please don’t. Teacher, don’t. It’s down there’ – she wasn’t so lucky.

  * * *

  • • •

  To lose one’s power of remembering is not like losing a tool that is broken: you can look at the tool and see it is damaged, but here you are the tool; you are the process: forgetting wipes away the traces of itself. You don’t notice the fog descending, though perhaps there is the warning boom in the gathering night. Things are gone without being missed; forgetting takes place unnoticed and you don’t see that you aren’t seeing. There is a special kind of terror in this silent obliteration that ploughs through the self like a furrow.

  I read on a government website that you should seek advice and help if you: struggle to remember recent events, forget the names of friends and everyday objects, lose the thread of what you’re saying, cannot recall things you have seen or heard, have problems thinking or reasoning, sometimes feel anxious, depressed or angry, get lost on familiar journey, often feel confused . . .

  When I have no memory whatsoever of a film I saw the week before; when I find yoghurt on the bookshelf and crisps in the fridge; when I make the whole family look for my watch that I remember dropping on the floor somewhere in the house and then discover a few hours later is actually on my wrist, obscured by a long sleeve; when I order the same shirt online three times; when I carefully pour ground coffee into the little dishwasher capsule for soap; when I go upstairs for
something but then have no idea what; when I point at the Thermos flask and call it a Tupperware; when I can’t find my way home though I know I know the way; when I open the door and for one terrifying moment don’t recognize the familiar face; when I look in the mirror and see my shirt is inside out and I only have one earring in; when I lose my supermarket trolley; when I can’t remember where I parked; when my dreams leak into my day so I can’t tell them apart; when I see people exchanging glances as I speak and realize that I’m repeating myself; when I have that sudden flushing awareness that I’ve somehow lost my grip on what’s going on around me, the wind going out of my sails.

  When does forgetfulness that is natural and part of getting older become something more sinister? How do we know when to be worried? When does the foghorn boom?

  ‘Ah yes, worried-wellness,’ says Sube Barnerjee wryly when I talk to him about how my middle-age forgetfulness always triggers the terror of dementia. He is an old-age psychiatrist and Professor of Dementia and Associate Dean at Brighton and Sussex Medical School who has served as the UK Department of Health’s senior professional advisor on dementia. His research focuses on quality of life in dementia, and he is energetic, articulate, optimistic. ‘Worried-wellness as in when I call my kid Sandy, which is actually the name of my dog. A life can be poisoned by the fear.’

  * * *

  • • •

  Dr Claudia Wald is consultant psychiatrist at the Kensington & Chelsea and Westminster Memory Service, which provides dementia assessment and diagnosis and ongoing support for people with memory difficulties. Memory clinics like this are based on models from the US and were set up in the early eighties in every region of the country. She sits in her pleasant room, sunlight falling through the window. She is tall and open-faced, and her voice is reassuring; she feels a kind place to be.