Monday 19 August 2019

Intimate, poetic account of dealing with dementia

Non-fiction: What Dementia Teaches us About Love

Nicci Gerrard

Allen Lane, €23.80

Julianne Moore in 'Still Alice', a poignant movie about dementia
Julianne Moore in 'Still Alice', a poignant movie about dementia
What Dementia Teaches Us about Love

Frieda Klotz

Dementia is an illness we all hope to avoid but most of us will know someone who is affected by the disease. In this book, which builds on her late father's experience, Nicci Gerrard grasps the nettle by delving into what the condition meant for her family.

She talks to other dementia patients and explores its terrible impact on body and mind. The book avoids being depressing, not just because of Gerrard's exemplary writing, but also because she goes beyond dementia to ask questions about society and humanity.

What does our treatment of sufferers - that most vulnerable demographic -say about us?

Gerrard is a journalist and novelist, who writes thrillers with her husband under the pseudonym, Nicci French. After her father's death she set up John's Campaign in his name, because she wanted carers of people with dementia to have the same rights as the parents of children who are sick.

Towards the end of his life, her father entered hospital for routine treatment. He got stuck there for five weeks and an outbreak of the norovirus meant family were not allowed to visit.

He was cared for but isolated, with no one to talk to or read to him. "The doctors doctored," Gerrard says. "My father, who was a very polite man, lay quietly in his bed." When he left the hospital, he was skeletal and his capacities had been abruptly and brutally reduced and he died not long afterwards.

Dementia challenges us in a philosophical way because sufferers depart before they have actually died. As Gerrard notes, "To mourn someone who is still alive brings a particular, complicated pain. And it often brings guilt: to mourn someone who has not yet died is to consign them to a kind of death."

This is far from the first book to trace the trajectory of the illness from a relative's perspective. John Bayley famously depicted his wife Iris Murdoch's struggle with Alzheimer's. And a host of other books convey what it is like to watch a loved one drift away.

Dementia patients, themselves, include some of the most brilliant minds of our time - Terry Pratchett is one example. Gerrard talks of a man she encountered, often in London. She would see him standing amidst the traffic wildly waving a fork.

After he died, she learned that he'd been a psychoanalyst and gifted musicologist, and his gestures were a bewildered attempt to conduct the traffic. Still we often fail to treat sufferers with adequate respect because of the difficulty of dementia, and perhaps the fear it invokes. It leaves sufferers naked in body and soul and inspires pity, disgust, Gerrard suggests, even mockery.

She observes that we dehumanise or infantilise dementia sufferers, describing them as animals, vegetables, objects, aged babies - "although the comparison between old people at the end of their life with small children is cruelly inappropriate."

Gerrard is at her best when she probes and analyses language. In her research for the book, she visited many old people's homes and no matter how expensive or well-kept they were, they always fell short because they were artificial, unloving. That dementia sufferers, already disoriented, are removed from familiar surroundings and put into homes can only exacerbate their loneliness and confusion.

But Gerrard moves from "homes" to "home," more a metaphor than a place - a foundation of the self and source of shelter. She cites a film by Chinese artist Ai Weiwei charting the flow of millions of migrants across the globe, and their search, or quest, for home. And she introduces her own story. When she got divorced, her children became accustomed to moving between houses and would instantly unpack when they arrived anywhere, eager to create a home.

Elsewhere, too, in the book, she turns the lens inwards and reflects on her own life and ageing.

As a young woman, "Rejection, divorce, failure, humiliation, all the setbacks and ambushes of life: I was under construction and they were materials. Now I've begun to feel that my ramshackle cobbled-together house is pretty much built and I have to live in it, even if the tiles are loose, the windows rattle."

This ability to personalise and universalise - to link between different types of experience - underpins the book and makes it much broader than its title suggests. Memory, identity, ageing, loss and death, will affect us all, and in her light, poetic prose, Gerrard asks us to think about them.

What Dementia Teaches Us About Love offers an intellectually rigorous, yet intimate account, of the illness and its consequences. The issues Gerrard raises are live, current and political. With a cure still elusive, and 47 milion dementia sufferers across the world, it's a story that will continue to be told.

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