I Remain in Darkness by Annie Ernaux

Annie Ernaux’s I Remain in Darkness is a deeply personal account of a parent living with dementia. I was excited to read it when I discovered she’d written about this subject – she’s a writer I hugely admire (and I’m not alone: she won the Nobel Prize in Literature).

First published in 1997, the book recounts her mother’s decline and eventual death in the 1980s. It’s striking to read it now and see how much the conversation around dementia – and the treatment of people living with it – has changed. At times I was surprised by the way she describes her mother and other residents in the care home. There’s a strong emphasis on horror and shame that, today, can feel uncomfortable.

That’s something I’ve worried about myself when writing about dementia. If I’ve ever come across as insensitive, I truly apologise. But I suspect that when Ernaux was writing, there was far less public conversation about dignity, advocacy and challenging stigma. It was horrifying to read that on more than one occasion she arrived at the care home to find her mother tied to a chair.

What I’ve always loved about Ernaux is her unflinching ability to look directly at the core of human experience. Here, she recounts her mother’s decline through fragments – scraps of paper she wrote in the moment. The book feels raw because it is raw.

The title comes from the last coherent sentence her mother wrote, in a letter to a friend. It’s heartbreaking in its awareness of cognitive change, but it also captures something else. We remain in darkness: unable to understand what is happening inside the mind of someone we love and enveloped in the sadness and anticipatory grief that accompany their decline.

Ernaux searches for language to describe what is, in many ways, indescribable – enormous and unfathomable. Dementia brings us face to face with mortality and with the limits of our understanding.

In the foreword she writes of “living in this dual form, at once dead and alive, like those characters in Greek mythology whose souls have been ferried twice across the River Styx”. She refers to the strange moment of waking from a dream in which someone dead is alive again. But it also speaks powerfully to the experience of dementia: the sense of losing someone who is still physically here.

She writes, too, about the guilt of moving her mother into a care home after trying to care for her at home. She knows the care home is imperfect, but “letting her stay at my place would have meant the end of my life”. That line captures something many carers feel: it isn’t really a choice, yet it can feel like a failure. At one point she even wonders whether she has caused her mother’s decline – a thought I recognise. Perhaps many carers do. A quiet, irrational sense that it must somehow be our fault, even when we know it isn’t.

After her mother’s death, Ernaux realises that writing about her mother was a way of holding onto her life. That made me pause. Am I holding onto my dad’s life by writing about him? I’d never framed it that way before, but perhaps I am.

Sometimes it feels as though he has been erased – he’s not fully with us most of the time, and people often don’t mention him, yet he is not gone. And here I am, speaking of him as much as I can. Sending out my own scraps into the world. But like Ernaux, I still struggle to understand the world as he now experiences it.

We remain in darkness — yes. But we also remain. And sometimes remaining, loving, witnessing, and remembering is the only light we have.

Have you read this book – what did you think? Let me know in the comments.