'A Journey Through Memory And Forgetting': Dementia And Those Who Live With It

Published September 3, 2019 at 10:00 AM CDT

A patient affected by Alzheimer's disease attends a special therapeutic session. (Pierre-Philippe Marcou/Getty Images)

Her father’s dementia diagnosis led award-winning journalist Nicci Gerrard to investigate what the disease does to those who live with it and to their caregivers. The new book is called “ The Last Ocean: A Journey Through Memory and Forgetting.”

Guest

Nicci Gerrard, author of the new book “ The Last Ocean: A Journey through Memory and Forgetting,” who was motivated to write the book after her own father’s battle with dementia. Novelist and author known for her fiction work, written in collaboration with her husband Sean, under the name Nicci French. ( @FrenchNicci)

Interview Highlights

Gerrard on her father’s story

“My father, he lived — for about 10 or more years — he lived with dementia well. So he was living with dementia at his home, with my mother, who at the time of his death, he’d been married to for 61 years. He was mobile. He would go for long walks by the river. He would work in his garden, which he greatly loved. And feed the birds, and water the tomatoes, and talk with friends and see his family and tease his grandchildren. And although he was going into the darkness — and knew it, and was sometimes quite scared — nevertheless, he was most of the time contented.

“But then there came a day where he went into hospital, because he had leg ulcers. And he was in hospital for far too long — five weeks. And while he was there, they had very restricted visiting hours. And then, an actual lockdown of the ward that he was in, because of an outbreak of norovirus. And, so, we weren’t allowed in to see him at all. And for days and days on end he was unvisited. And he must have felt — I can hardly bear to think of it — he must’ve felt completely abandoned by us.

“I learned, far too late, that tens of thousands of people go through the same thing. That without us to tend to him, to read to him, to help him keep mobile, to help him eat — but above all, to kind of speak to him and look into his eyes and recognize him and keep those connections between the self from the world — he went off a cliff, in terms of well-being. So, by the time I went to collect him, he was wrecked. He couldn’t walk. He couldn’t sit up in bed. He couldn’t, kind of, lift a mug to his mouth. He couldn’t recognize anybody around, and he couldn’t say our names or his own. He was gone from us. And so for nine months, he was no longer living with dementia. He was dying with dementia. Kind of [a] radically, slowed-down form of dying.”

On the under-discussed loneliness of being a caregiver or family member of someone with dementia

“Sometimes, people don’t talk about it. Sometimes, it is still something of a stigma for some people; it’s still something of a shame. People kind of hide away with it [and] become lonely themselves.

“People’s lives get turned upside down by it. I mean, you know, financially, it can be appalling. Emotionally, it can be heartbreaking. It can be very lonely, people can become very depressed, they can become ill themselves. And if I had one word of advice for somebody who’s a carer, it’s try — if at all possible — to take time for yourself, each day. Even if it’s a small amount of time. Because, it is very easy for carers to be just wrecked in the process of caring. And you need to keep hold of this terrible tightrope — this impossible tightrope between loving and caring, and looking after and honoring the other person — but, not losing yourself in the process.”

On the “othering” of people living with dementia

“If you see a homeless person sitting on the street, it’s much easier to just to steer a circle around them and not meet their eyes and not recognize them as being human. So, we can devalue their humanity in order not to have to confront what it is they’re asking from us. And I think we do that in spades with dementia. And, I think, partly, that’s because it’s quite kind of pushed our society — it happens in kitchens and bedrooms and hospital wards and residential homes– kind of safely out of sight. And partly we do that because old people become invisible anyway. But, mostly we do that because it’s too scary. It’s too scary because it reminds us of our own mortality. That … we’re all heading in the same direction. And this is where we’re going to as well.”

On Pointcaller Kimberly, from Greenville, South Carolina, on her experiences caring for a family member with dementia

“Right now, I’m caring for my mom, who is 64. She has a really rare form of dementia called FTD, frontotemporal degeneration. And she was diagnosed about 10 years ago. And then I’m caring for her, while also taking care of my son. And she is right here on a puree diet in the kitchen, and my son is toddling around. …. When you talk about what it is to act in a human way, I think it’s looking at people who are in this place like my son does. Through a child’s eyes. Because — I don’t know — it’s changing my perspective, how he looks at her. He looks at her with so much love and admiration, and he’s the first to say, ‘hi, hi, hi,’ when, sometimes, people come over, and they don’t even look at her.”

From The Reading List

From “The Last Ocean” by Nicci Gerrard

BEGINNINGS

“O the mind, mind has mountains; cliffs of fall Frightful, sheer, no-man-fathomed. . .”

The year before my father died, he came with us to Sweden for the summer. He had been living with his dementia for over ten years by then, and—mildly, sweetly, uncomplainingly—he was gradually disappearing, memories falling away, words going, recognition fading, in the great unravelling. But he was very happy on that holiday. He was a man who had a deep love for the natural world and felt at home in it; he knew the names of English birds and insects, wild flowers and trees. When I was a child, I remember him taking me to listen to the dawn chorus in the woods near our house. Standing under the canopy of trees in the bright wash of sound, he would tell me which song was the mistle thrush and which the blackbird. At least, I think I remember this, but perhaps I make it up as a story to tell myself when I’m sad.

In Sweden, he picked wild mushrooms in the forest, went to a joyful crayfish party where he drank aquavit and wore a garland in his white hair, sat with a palette of watercolours looking out at the meadow although his paintbrush never quite made it to the paper. And one evening, we took him to have a sauna—he loved saunas because they reminded him of the time he had spent in Finland as a carefree young man. Afterwards, we helped him into the lake. It was a beautiful, soft dusk; in the fugitive light, the trees were massed shapes and there was a moon shining on the water. I remember the stillness, just the occasional lap of water against the jetty.

My father, old and frail, swam out a few yards and then he started to sing. It was a song I’d never heard before, have never heard since. He was swimming in small circles and singing to himself. He seemed quite contented, happy even, but at the same time it was the loneliest sight: as if there was no one left in the world, just him in the half-darkness and brimming silence, with the lake and the trees and the moon and scattered stars.

The edges of the self are soft; the boundaries of the self are thin and porous. In that moment, I could believe that my father and the world were one; it was pouring into him, and he was emptying out into it. His self—bashed about by the years, picked apart by his dementia—was, in this moment of kindness, beyond language, consciousness and fear, lost and contained in the multiplicity of things and at home in the vast wonder of life.

Or that is what I tell myself now, three years later, trying to make sense of an illness that has the power to dismantle the self, that comes like a robber in the night to sneak into a house built up over a lifetime, to wreck and plunder and despoil it, sniggering behind the broken doors. The following February my father went into hospital with leg ulcers that were slow to heal. There were strict visiting hours and then, with an out- break of norovirus, a virtual lockdown of the ward, which meant that for days on end he was alone: nobody to hold his hand, speak his name, tell him he was loved; nobody to keep him tethered to the world. His leg ulcers were healed, but away from the home he loved, stripped of familiar routines and surrounded by strangers and machines, he swiftly lost his bearings and his fragile hold upon his self. There is a great chasm between care and “care”, and my father fell into it.

When he at last came home, he was a ghost of himself, skeletal, immobile, inarticulate and lost. No more saunas for him, no more forests and lakes and flowers in his hair; he wasn’t in the twilight of the illness now but in its gathering dark. After several months of radically slowed-down dying, as autumn turned to winter and with a hard cold wind blowing, he left us at last. But against the memories of his terrible last months—the small room downstairs where he lay in a hospital bed waiting and waiting for nothing while the birds he loved came to the bird table outside his window; the routine of washing, feeding, lifting; the nurses and doctors and carers and the whole bureaucracy of illness and death; the sense of a mind dying and a body crumbling and not a damn thing to be done about it—against this stifling, drawn-out ending, I set the memory of my father in a Swedish lake, in peace, in soft dusk and that mysterious fusion of the self with the world.

I used to say that we are made of our memories, but what happens when memories are lost? Who are we then? If we are out of our mind, where have we gone? If we have lost the plot, what happens to the story we are in? Even at the bitter end, I never thought my father wasn’t himself—although at the same time I felt he had lost himself. He was gone but he remained; he was absent and yet powerfully present. There was something that endured beyond language and recollection, a trace perhaps, like grooves that life had worn into him the way a river carves into rock. He still had his sweetness; his past lived on in his smile, his frown, the way he raised his bushy silver eyebrows. It lived on in us. He might not have recognized us, but we could recognize him. I don’t know what the word for this indelible essence is—once, it would have been “soul”.

Civilization, control and safety form a crust over deep waters. In all of us, often pushed into the corner of our minds, is the uneasy awareness of how frail our hold over ourselves is, how precarious a grip we have on our own minds and bodies. Dementia—all the many and often harrowing forms of dementia—makes us ask what is it to be a self, to be human.

The Guardian: “ Dementia is our collective responsibility. We can’t ignore it any longer” — “There’s a silent crisis in our midst. Often cunning and stealthy like Grandmother’s Footsteps, sometimes swift and brutal, dementia is all around us. One in eight people die of it. In the UK, a person is diagnosed with it every three minutes. Yet we are still collectively failing to acknowledge this self-demolishing illness, which is now the largest cause of death in England and Wales and the one we most fear. Why?

“I’ve recently been doing talks around the country as part of John’s Campaign (named after my late father, who lived for 10 years with the disease), which I co-founded to encourage the NHS to collaborate more with families in the care of dementia patients. There is always time given to questions from the audience at the end. Often these turn out not to be questions at all, but confessions, or acts of bearing witness, or simply pleas to be heard, understood, recognised. In a hall in London, a young woman puts up her hand, stands, opens her mouth, then instead of asking a question she bursts into tears. In a church in the north of England, an old woman speaks of how for 15 years she cared for her husband with a particularly savage form of early-onset dementia until he died and how she was now the sole carer for her son, who has the same illness. She speaks with a terrifying calmness; it’s only when those around her offer help that her face crumples in grief. A man with white hair asks, ‘What shall I do? What?’ A daughter asks, ‘How do we tell him what is wrong with him?’ A son asks, ‘How long can it last?’ He also means, ‘How long can I bear it?’

“ Dementia is a terminal illness; there is no cure yet, only care. It usually comes gradually, a radically slow-motion form of dying in which the patient is increasingly at the mercy of those who look after them. Along with its particular medical symptoms, it can gather up fear, guilt, shame, loneliness, and a desolation that spreads out from the person who lives and dies with it to the people who love them. Its costs are enormous – not just the staggering financial cost to the individual and their family and to society, but the psychological and emotional ones.

“We turn away from dementia because we fear it and feel helpless in the face of its advance.”

Washington Post: “ Anxiety complicates life for dementia patients — and their caregivers” — “Late one night, the phone rings. It’s my mom. I brace myself and pick up.

” ‘The Baltimore police just called,’ she says. ‘Your brother is in jail!’

“I know — well, I’m pretty certain — that my brother, who lives hundreds of miles from Baltimore and is a law-abiding family man, isn’t in jail, but that doesn’t really matter. Right now, the point is to calm my mom down.

“So, I tell my mom that I’ll figure it out and get back to her. I take a deep breath and send a quick text to my brother, who confirms he’s nowhere near Baltimore or a jail cell and promises to call her right away. I call my mom back a few minutes later, and on this night, the calls do the trick. Everything is okay again, for the moment.

“In recent months, I’ve gotten quite a few perplexing and frantic calls as my kind, intelligent, 91-year-old mom struggles with Alzheimer’s disease.

“Unfortunately, she is one of many people whose descent into dementia has been twinned with a surge of anxious thoughts. Anxiety isn’t a cognitive issue per se, but it’s definitely a symptom that makes life much harder for caregiver and patient alike. Just imagine being stuck in your worst worries.

“Making it tougher is the strangeness of what my mother is anxious about — my brother being in jail or her needing to cancel an event, get to a meeting or get home (when she’s already home). It happens in person, too. Something is upsetting her, and she’s telling me about it, but I can’t get what it is she’s worried about. Quickly, her anxiety becomes my anxiety, too.

“Some 80 percent of people with dementia experience anxiety and agitation at some point, said Lea Grinberg, a neuropathologist whose lab at the University of California at San Francisco studies brain aging and associated disorders. She is exploring whether anxiety and depression could sometimes be early indicators of cognitive disorders.

” ‘Anxiety may be part of the disease process,’ she said.”

Dorey Scheimer produced this hour for broadcast.

This article was originally published on WBUR.org.