Shortly before the publication of my first novel, I learned that my mother’s cancer had returned. I am not yet her caregiver but I have cared for folks with cancer before – and Alzheimer’s and Parkinson’s and other afflictions, mostly of old age. I worked as a professional companion for elderly people for nearly nine years before I began writing about my caregiving work in the form of Say Say Say – the story of young woman who cares for a woman with a brain injury, and the complex intimacies that emerge within her family as she declines.
During that time I thought about why people might want to read work on difficult or dark subjects, but it was largely an abstract consideration. By the time I began reading and rereading for this list my own pre-emptive grieving was well under way. It changed how I experienced the stories; I was startled by the comfort they offered. Certainly my tears were closer to the surface than when I had first encountered these texts, but I felt grateful when the tears came, grateful that the words could pull me outside of my own sadness and into empathy.
These caregiving narratives have survival tools embedded in them: humour, anger, beauty and poignant joy. They aren’t all loss and decline, though those very human experiences deserve all the artistry that writers can muster. A sense of redemption and awe remains possible within the scope of describing tragedy, and wryness or rage can thwart impulses towards cloying sentiment or “life lessons”. And then there is the magic of having your very private experience captured in language.
But these stories aren’t only gifts to those who are grieving. They illuminate the experiencing of caring and being cared for, whether as the children we once were or as the vulnerable adults we may yet become. Their focus is not loss. It’s the sometimes messy but often life-affirming help that people can offer one another.
1. Purple America by Rick Moody
“Whosoever knows the folds and complexities of his mother’s body, he shall never die.” Thus we are introduced to Hex Raitliff, the primary caregiver for his 70-year-old mother Billie, who suffers from a neurological disease similar to MS. What follows is an incredibly poetic description of bathing her, a breathtaking opening to an unusually masculine take on caregiving.
2. The Bear Came Over the Mountain by Alice Munro
Grant and Fiona have been married for many years when Fiona develops Alzheimer’s disease. On the day Grant moves her into a nursing home, “she was talking about the time that they had gone out skiing at night under the full moon and over the black-striped snow, in this place that you could get into only in the depths of winter. They had heard the branches cracking in the cold. So if she could remember that so vividly and correctly, could there really be so much the matter with her? It was all he could do not to turn around and drive home.”
3. Eileen by Ottessa Moshfegh
In this macabre and funny novel, Eileen tends to her alcoholic father. “Once, after a good six-day absence, a bender of greater proportions than I had ever seen my father go on, I got a call from a hospital two counties over and drove out there to pick him up. That persuaded me to gather up all his shoes and keep them locked in the trunk of the car from then on.” A bracing balance to more tender caregiving narratives, we bear witness to codependency, resentment and other dark feelings.
4. Family Life by Akhil Sharma
Caregiving through the eyes of a child: Ajay is the younger brother of Birju, a high-achieving teenager who becomes severely brain-damaged after a diving accident. A raw, sensitive story of an immigrant family grieving. “‘Why don’t you make Birju like he was?’ As soon as I asked the question, God stopped feeling real. I knew then that I was alone, lying under my blanket, my face exposed to the dark.”
5. The Children’s Hospital by Chris Adrian
Trying to entice a physician friend into reading this book, I described it as medical magical realism. It’s an apocalyptic tale of a paediatric facility afloat on a flooded Earth, full of very sick children and featuring a medical-student protagonist. “Here in the sicker regions of the hospital, her power seemed to grow. To the murmur and thrill of primary pulmonary hypertension she said hush, and they grew still. The mushy brains of the meningitic grew firm and springy at the touch of her mind. Every species of shock, cardiogenic, neurogenic, septic, anaphylactic, she calmed.” A surreal and reverent examination of illness and death with a hauntingly strange ending.
6. Inheritance by Lan Samantha Chang
A gripping story about sisters growing up amid political turmoil in China, this novel also gives meaningful attention to Hu Mudan, a family servant, offering a rare glimpse of the complex intimacy between caregivers and employers. “She had been hungry. She had been alone. In that time of trouble, Chanyi had made room for her. Hu Mudan believed in the old loyalties, and she immediately began to serve as Chanyi’s maid. Only she knew how to comb Chanyi’s knee-length hair, beginning at the ends and moving gently to her scalp. Only she understood how to keep her mistress safe from the despondency that haunted her.”
7. In the Cemetery Where Al Jolson Is Buried by Amy Hempel
A woman visits her dying friend in the hospital in this touching and irreverent short story. Some of the jokes I found off-putting, but writing about death and dying with both humour and depth is rare and worth noting. “‘This is a good movie,’ she said when the snipers felled them both. I missed her already.”
8. Breath, Eyes, Memory by Edwidge Danticat
Though this moving novel features an adult daughter unhappily but dutifully caring for her elderly mother, childcare features more prominently – the multi-generational efforts to raise the protagonist Sophie are divided between her Tante Atie and grandmother in Haiti and her mother in New York. “According to Tante Atie, each finger had a purpose. It was the way she had been taught to prepare herself to become a woman. Mothering. Boiling. Loving. Baking. Nursing. Frying. Healing. Washing. Ironing. Scrubbing.”
9. As We Are Now by May Sarton
A frail but mentally sharp 76-year-old describes the loneliness and powerless rage she experiences living in a nursing home. “Perhaps if this story of despair could be published it would help those who deal with people like me, the sick in health or mind, or the just plain old and abandoned.” Old age as passionate, smart and furious.
10. The Times As It Knows Us by Allen Barnett
An angry, tender short story about a group of gay friends and lovers who care for one another as many around and among them are dying of Aids. Grief is explored in all of its complexity, from the language of loss to public demonstrations of mourning to the experience of being one who survives when many others do not. “Looking down at him who is dead and gone, then lying across the broken bridge of his spine, the beachhead of his back, you would gladly change places with him. Let your weeping be bitter and your wailing fervent; then be comforted for your sorrow. Find in grief the abandon you used to find in love; grieve the way you used to fuck.”
• Say Say Say by Lila Savage is published by Serpent’s Tail. To order, go to guardianbookshop.com. Free UK p&p on orders over £15.
