In a society where 50 million people are caring for someone with a chronic or terminal illness, there is no shortage of literature on the subject, from academic papers to memoirs to practical guides. But in this new anthology, the first of its kind, the "literature" is really that.
"Living in the Land of Limbo" is filled with poems and stories about caregiving from some of the most renowned authors of the past half-century: Alice Munro, W. S. Merwin, James Dickey, Robert Pinsky, Mary Gordon, Rosellen Brown, C. K. Williams and 26 others.
How does one "review" such work? The answer is, one doesn't — but rather considers what their stories and poems have to offer the rest of us. The editor is Carol Levine, director of the United Hospital Fund's Families and Health Care Project, herself the author of many papers about family caregiving for leading medical journals. (I have interviewed her in my work from time to time.) She began collecting these pieces almost accidentally, during sleepless nights spent caring for her husband, Howard, who was left a quadriplegic with traumatic brain injury after an automobile accident. He lived in that state for 17 years; for solace and meaning, Ms. Levine turned to reading.
She organizes the book not by genre but by relationship: children of aging parents; husbands and wives; parents and sick children; relatives, lovers and friends; and paid caregivers.
This leads to some weak links. Finding literature about those for whom caregiving is a job, not an act of love or obligation, often intertwined, was difficult, Ms. Levine told me. Many of the stories and poems are about AIDS, beautiful and heart-rending but dated by treatment breakthroughs that make them seem like sepia-tinted photographs. And the section on parents and children — though graced by the magnificent "People Like That Are the Only People Here," by Lorrie Moore — should have included autism. The incidence demands it, and the literature exists.
I devoured the rest, the world fallen away, reading as I remember from childhood, heedless of traffic as I crossed the street with my nose in a book. What I found were three qualities that are the singular strengths of fiction and poetry.
First, the unsayable can be said, without the need to pretty it up or tone it down to spare a loved one's feelings. People don't merely "soil themselves," as how-to books would have it: Poets and storytellers have the freedom to tell us what they actually do, how it smells, how it feels.
Second, they give vent to the rage and selfishness that are not just felt but sometimes acted out in silly and spiteful ways — yet are described here without shame. I pushed my mother's wheelchair onto the lawn of the nursing home, even when she didn't want to go, because I couldn't stand another minute indoors and I had all the power. Once, she even cried to go back inside; I pretended not to notice.
Finally, fiction and poetry afford an almost infinite choice of points of view. My two favorites — Raymond Carver's poem "Where the Groceries Went" and Rick Moody's story "Whosoever: The Language of Mothers and Sons" — both alternate between an adult child and a parent. Never before had I truly understood, not merely empathized with, what "the other" felt.
The Carver poem recounts the second phone call of the day from a demented mother to her son, whose voice shakes with anger after spending hours buying her $80 worth of food only to hear her say that there is nothing to eat in the house but bologna and cheese. The mother replies:
Honey, I'm afraid.
I'm afraid of everything. Help me please.
Then you can go back to whatever it was
you were doing. Whatever
it was that was so important
I had to take the trouble
To bring you into the world.
For me, the Moody story rose above the rest, probably because the old woman's condition (paralyzed, losing her speech but cognitively intact) was virtually the same as my mother's. In sentences that span pages without a full stop, the son swings from tenderness to fury while bathing and feeding his mother.
He wipes "stalactites of drool from her mouth," uses rose bath salts and a violet washcloth "while soaping underneath the breasts where he once fed." But at the same time, he tunes the radio to a raucous station he knows she hates and is impatient to "go drink too much at a local bar."
Then Mr. Moody shifts the story to the mother, remembering her son and her husband at a Christmas past. The men had bought a computer with a voice synthesizer and software that would allow her to build sentences word by laborious word. They were so proud they had solved her problem, as "she'd been a talker."
She wants no part of their loving gift. Speech, she knows, is "a thing of the past," like "perfumed thank-you notes," something "consigned to the netherworld of orphaned socks and earrings." She refuses to cooperate, despite their importuning that she mustn't give up.
Instead, inches from her only child, she haltingly manages to whisper.
"Oh, darling," she tells her son. "Your mother is in some marvelously big trouble. I am alone."
A version of this article appears in print on 04/01/2014, on page D6 of the NewYork edition with the headline: Sharp Truths Only Fiction Can Tell.
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