The new book telling the cruel story of Alzheimer’s

For a condition responsible for almost one in eight deaths in England and Wales each year Alzheimer’s remains a condition relatively unexplored and unexplained. Most of us will know or know of someone affected by a disease that ruthlessly and relentlessly strips the sufferer of everything from their memories to their dignity, slowly erasing all the facets and traces of a human being in possession of hopes, loves, hates, relationships and dreams until they’re a breathing, blinking husk waiting to die.

I lost my father to Alzheimer’s in 2016 and the experience was unimaginably cruel for him and everyone connected to him. He was effectively tortured to death by the incremental removal of his faculties, fast enough that he wasn’t able to understand what was happening to him but slow enough to leave him at best utterly bewildered and at worst terrified.

Three years on it’s still impossible for me to make any kind of sense of the end of his life, the final two years of which were spent in a care home room overlooking a car park with the empty picture hooks of the deceased previous resident still screwed into the walls because the hospital had released dad two days before the home was ready to receive him. There was anguish during those years of course, plenty of desperate, yearning anguish, but also moments of great tenderness and even, bizarrely, happiness and laughter.

There can’t be many people on these islands who have not been touched by the disease, whether it’s a friend, family member or the family member of a friend. We’re still a considerable distance from understanding what causes Alzheimer’s let alone how to prevent it or cure it, but more and more of us are coming into contact with its sly, stealthy stifling of a vibrant life.

It’s possibly the utter mystification that Alzheimer’s induces in its sufferers and the people close to them that explains why so little has been written about it so far, outside scientific research journals and newspapers reporting the chronic underfunding of dementia research and care.

Nicci Gerrard published the excellent What Dementia Teaches Us About Love earlier this year, in which she detailed her father’s decline and met others affected by the disease, but so fast has the growth in sufferers been in recent years that any kind of literary response has been slow to catch up even in an era when memoir and life-writing has never been more popular or of higher quality.

There have been some brilliant, heartrending books by cancer sufferers and people battling and overcoming addictions but very little about the biggest health threat facing us in the current millennium, a disease on a relentless rise for which there is no cure.

A book that may start to change all that is one written in French during the 1980s and published this month in English translation.

Annie Ernaux is one of France’s most decorated writers and specialises in a form of memoir that strides confidently along a blurred confluence of fiction and autobiography. Most recently her book The Years, published in France in 2008 and whose 2018 English translation was shortlisted for this year’s Man International Booker Prize, has been hailed outside France as a masterpiece. Documenting her life from her birth in 1940 to 2006, The Years serves both as a personal memoir and the story of contemporary France in what the author calls a “collective autobiography”.

As well as anecdotes and the recollections of events – narrated as “she” or “we” rather than the traditional first person singular – there are photographs, songs and even old adverts to bridge the gap between author and reader. Making the personal general is an extraordinary difficult trick to pull off successfully but Ernaux managed it in what the New York Times described as “a Remembrance of Things Past for our age of media domination and consumerism”.

From a working class background Ernaux spent decades as a schoolteacher, publishing her first book Les Armoires Vides, translated into English as Cleaned Out, in her mid-30s in 1974, a fictionalised account of an abortion she had ten years earlier when abortion was illegal in France. Further autobiographical works followed including La Place (A Man’s Place), a stylised account of her father’s life that earned Ernaux the Renaudot Prize, and L’Événement (Happening), the story of her abortion told this time as a hard-hitting first person memoir.

Ernaux first wrote about her mother’s life in 1991’s Une Femme (A Woman’s Story), detailing their relationship with searing honesty, but the final years and the trauma of her illness and death were not explored in detail. In I Remain In Darkness, translated into English by Tanya Leslie and published this month by Fitzcarraldo, she uses extracts from a journal Ernaux kept from 1983 when her mother was first diagnosed with Alzheimer’s to produce an unflinching, occasionally visceral and deeply personal account of the shattering decline of a loved one through a vicious illness.

“Perhaps I wanted to leave behind only one image, only one version of the truth about my mother and my relationship with her,” writes Ernaux in her introduction of her decision to omit this material from A Woman’s Story, and I Remain In Darkness not only completes the original narrative it’s also a valuable insight into the merciless malevolence of this cruel disease.

It’s a slim book, weighing in at a little over 70 pages, but so sparing and sparse is Ernaux’s prose that the reader has a strong sense of time passing and gradual decline. The title is taken from the last thing Ernaux’s mother ever wrote, a letter she’d begun (“Dear Paulette, I remain in darkness”) but abandoned after four words that are a perfect expression of the bewilderment and debilitation of dementia, both for the sufferer and those close to them.

A strong sense of guilt that will be familiar to anyone who has been through something similar runs through the book. The guilt of absence, of not visiting often enough, and the guilt at the surges of anger or frustration, however brief, in response to childish or unreasonable behaviour.

There are occasions when you forget even momentarily that it’s not their fault, that it’s the disease doing it, clogging their synapses, manufacturing plaques that calcify the brain, smothering the millions of connections and charges that zip around our grey matter furnishing us with our personalities and storing our memories. It’s not them doing it, it’s what’s happening to them.

There’s also guilt at witnessing the debilitation of a loved one, of how attending voluntarily the slow removal of their dignity along with everything else can feel ghoulish. My dad was bedbound for the last couple of years of his life and seeing the man who’d guided and advised me through life with quietly charismatic calmness and unimpeachable wisdom wailing like a frightened child as he was carried to the bathroom in the sling of a mobile hoist left me guilty at witnessing him at his most vulnerable.

The descent may be gradual but its landmarks still punch you at the core of your being. From early days of seeing my dad scrabbling at a closed door with his fingers because he’d forgotten how to grasp and turn the handle to the advanced stage of non-stop nonsensical muttering via putting a bib around his neck and spoon feeding him meals, those moments never got easier.

If there was a positive it was in the tenderness I was able to show him, returning the same tenderness he’d shown me as a child now he was the helpless one unable to execute the basic actions of everyday life, growing older yet getting ever younger. I saw his eyes gradually lose their sparkle of intelligence until they were constantly widened in a childlike cross between vacant incomprehension and innocence.

“When she’d had enough of her brioche she hid it under her skirt,” recounts Ernaux of a visit to her mother. “As a child I would steal sweets from the shop and stuff them inside my underwear.”

It took me a while to realise the degeneration I was watching was in effect this same regression, an unlearning of the rhythms, rituals and mores underpinning adulthood that we accumulate from earliest childhood. Alzheimer’s sufferers live their lives in rewind, from talking about long-dead family members in the present tense to needing help with basic aspects of washing and dressing themselves.

“She had become a child again,” writes Ernaux of her mother, “one who would never grow up.”

The landmarks come thick and fast 
in the advanced stages of the disease, such as the first time my dad didn’t remember who I was. “I’m sorry,” he 
said one day, “I know of you, but I don’t know you.”

After I’d left he asked my mother if “that nice man” would be coming back. Sometimes I would shave him with his electric razor – as Ernaux does for her mother – an act I found tenderly intimate that made me think how as a small boy I would open his bedside drawer and take out his shaver, switching it on and off without daring to press it to my own face, smelling the foil and thinking it smelt reassuringly of being a grown-up. There are still days when the sufferer’s windows of lucidity seem to open, sometimes for a moment, sometimes for a few hours, as if the synaptic blockages are forced open by what you hope is willpower, allowing a little of the person inside the illness to emerge like a sliver of light through a door ajar.

These are delightful occasions tempered by the realisation that it’s temporary. One of the cruellest aspects of Alzheimer’s is when it taunts you with hope, when after months of slow decline suddenly the person reappears and part of you thinks, wait, they’re getting better, they’re recovering, things are going to be like they used to be again.

Then you see the light switch off in the eyes and you’re back in that airless, soulless room with its throaty rattling soundtrack of the mattress inflator hooked over the end of the bed. The worst thing you can do with Alzheimer’s is allow yourself to hope.

In the advanced stages of the illness Ernaux’s mother wondered aloud whether she would ever leave the geriatric ward in which she spent her final months.

“She is alive, she still has plans for the future,” realises Ernaux. “All she wants is to live.”

I Remain In Darkness is a powerful and honest account of a loved one enduring a cruel, debilitating and fatal disease. The events Ernaux describes took place in the early 1980s but are still vividly recognisable in the 21st century where not much of the lived experience has changed. The doctors know a little more and there is medication that can slow the process but nothing can stop it.

The relentlessness of the disease is exhausting, eliminating hope as it erases the person you love in front of your eyes. Its ruthlessness is malevolent and its consequences are captured perfectly here in this beautiful little book by one of France’s greatest living writers.

Ernaux’s descriptions of her response to her mother’s death are as concisely perfect as they are heartrending. At the end of this blisteringly honest book she looks back at her relationship with her mother and the memories that have flooded back since her death.

When my dad died, almost mmediately I began thinking about him as he was before he fell ill. Almost as soon as he’d taken his last breath he was no longer the bedbound presence with blank eyes, raspy breath and a face wracked by desperate incomprehension but the funny, kind, warm, intelligent man who’d brought me up. I could hear the soothing tones of his voice again, and hear his laugh.

“At least I still have her voice,” says Ernaux towards the end of this deeply affecting piece of writing. “Voice is everything.

“The worst thing about death is the loss of voice”.

– I Remain In Darkness by Annie Ernaux, translated by Tanya Leslie, is published by Fitzcarraldo Editions priced £8.99