A Nobel Prize Winner’s Memoir of Caregiving Through Alzheimer’s

By Becca Schuh | April 25th, 2023

Nobel Prize-winning writer Annie Ernaux's memoir 'I Remain in Darkness' chronicles her attempts to make sense of her mother’s Alzheimer's — and to process the unresolved aspects of their relationship.

In October of 2022, French writer Annie Ernaux won the Nobel Prize for literature for her body of work: 23 books over the past fifty years, mostly autobiographical. While most of the coverage of the prize and her work focuses on her working class upbringing, her love affairs, her political causes, less mentioned is this ragged, emotional, and unsparing examination of the last years of her mother’s life. 

Ernaux herself is now 82 years old, but when she was in her mid-forties, her mother was diagnosed with Alzheimer’s, and she cared for her both in her own home and in a long-term geriatric care hospital ward. Published in 1998, I Remain in Darkness chronicles Ernaux’s attempts to make sense of her mother’s condition and process the unresolved aspects of their relationship. 

Ernaux has referred to her spare writing style as l’écriture plate, French for “flat writing.” Although “flat” denotes a seemingly blank palate, the phrase refers more to the lack of ornamentation: stark, certainly, but it is by no means emotionally flat. Rather, this so-called flatness lends itself well to the straightforward nature of the caregiving narrative: declarative descriptions of the days as they are, detailing the changes that Alzheimer’s puts upon the body and mind. 

In contrast to these bare descriptions, the book’s emotions are ragged and big rather than distant and contained. This is an important move in the narration of illness: when cultural narratives so often demand stoicism and courage, it’s necessary to come clean with the messy emotional weight of watching a loved one’s memory and physicality decline. 

Where much personal writing strives for distinction and singularity, Ernaux’s writing luxuriates in building on the commonality of experience. Ernaux describes her initial belief that her mother’s memory would return with the input of familiar surroundings: “I was convinced that the familiar surroundings and the company of my two teenage sons Éric and David, whom she had helped me to bring up, would cause her symptoms to disappear and that she would soon become the energetic, independent woman she had been for most of her life,” she wrote in I Remain In Darkness.

We can know everything intellectually about the progression of a disease, but still find it shocking when the disease becomes our reality. Alzheimer’s is difficult to conceptualize until we’re faced with it: How can someone forget? In a disease that is so mysterious even to scientists and doctors, it’s natural to admit how it continues to befuddle those who encounter it every day. 

I remain In Darkness, or rather the original French, Je ne suis pas sortie de ma nuit, were the last words that Ernaux’s mother ever wrote down. This fact seems almost impossibly poignant; that in her last moments of being able to write down coherent thought she came up with what would become such an apt title for a memoir. 

In a recent live talk with hospice chaplain Ellie Douglass, Douglass described the method of active listening and sometimes writing down phrases that her late-stage dementia patients uttered: “I listen with an inquisitive ear, and I often write down these phrases or things I hear that I want to be with and contemplate more,” Douglass told Being Patient. “Writing down the speech of individuals who have dementia has been really healing for me in the sense that I now have multiple people’s words memorized and so they stay more alive in my heart. It can be really helpful for the grief journey to be able to relate to our loved one, write down their speech.”

Ernaux describes a similar process, though with a less inspirational tenor: she “began jotting down on small undated scraps of paper the things she said or did that filled me with terror.”

Whether the act of recording is intended as healing or as observance of ‘terror,’ as Ernaux wrote, both are a way of grounding the interaction in the moment and making fleeting words tangible. I Remain In Darkness, like much of Ernaux’s work, is constructed out of these notes and diary entries. The diary is a writer’s companion, but it can also be a caregiver’s. 

Of the challenge of watching a loved one become unable to live in a familiar fashion, Ernaux writes: “I could not bear to see my own mother slip into such a state of decline.” And yet, she manages to write it down, therefore giving others the comfort of knowing that the discomfort is not theirs alone. Ernaux’s willingness to name the stark physical realities of Alzheimer’s offers an act of communion to everyone affected by the disease. 

Ernaux writes with specificity about the physical difficulties that accompany the mental anguish of the final years of her mother’s life: “She is in a state of extreme agitation, she keeps trying to wrench away the bar of her wheelchair. She clutches it and pulls with all her might, her body straining with the effort.” 

Her words enshrine the physical struggles that her mother endured, making them come alive again on the page. Much of the book considers these abject physical challenges, and again, Ernaux refuses to apply a literary lacquer: 

“Saturday, threw up her coffee. She was lying in bed, motionless. Her eyes were sunken, and red around the edges. I undressed her to change her clothes. Her body is white and flaccid. I started to sob. Because of time passing, because of the past.”

Alzheimer’s is a confrontation of time and mortality, and Ernaux charts this passage carefully, refusing to turn away from decay and abjection. And yet, the ritualistic writing, the obsessive recording, do not prepare her for the inevitable. 

Even though she has spent the recorded years anticipating its arrival, death, in the end, still comes as a shock: “She is dead. I am overcome with grief. I haven’t stopped crying since this morning. I don’t grasp what’s going on. That’s it. Yes, time has stopped. One just can’t imagine the pain. I long to see her again. This moment was something I had never imagined or foreseen.”

Just as Ernaux legitimizes the self and womanhood through her autobiographies, she legitimizes the experience of the people with Alzheimer’s through detailing the last months of her mother’s life. 


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