Nell Lake’s grandmother, Hildegard, valued health and independence. Facing frightening medical news at 78, Hildegard ended her own life. Looked at one way, Lake acknowledges the dignity of Hildegard’s choice; still, she wonders what the family missed, including “the intimacy that may come with tending and being tended to. The opportunity to love, to move toward even what frightens us.”
Lake tells the story in a prologue to her beautifully written account of a year in the company of caregivers. The wives, husbands, and daughters of the very ill (mostly dementia patients), Lake’s subjects came to weekly support group meetings at their small city’s hospital. There they share their stories, often with astonishing candor.
While Lake’s book is thoughtful and clear-eyed, she is likewise forthright about its limitations. She makes clear from the start that this group isn’t widely representative of all caregivers — the members are all white, mostly middle-class and above — and that she fairly rapidly moved beyond a standard reporter’s distance from her subjects, ultimately seeing many of them as friends. Like Lake, readers come to know the caregivers over time, with different voices taking turns yet always in conversation with each other.
THE CAREGIVERS: A Support Group’s Stories of Slow Loss, Courage, and Love
Gently led by a social worker, the group shares laughs and tears (since the social worker can never remember to bring tissues, they wipe their eyes on the cafeteria napkins), advice and wisdom. On any given day, Lake writes, “the presence of others is its own solace.” The comfort and strength the group provides its members is particularly crucial, Lake points out, because today’s caregivers often face isolation in addition to the mountain of worry and work in caring for their loved ones.
We didn’t used to do this alone. For one thing, people in the past died more quickly — our ancestors were less likely to linger in the kind of prolonged decline we now see as normal. Nursing and eventual death took place at home, where wives, mothers, and daughters (who then as now took on most of the duties) could lean on other women and consult a trove of experience to guide them.
Today, Lake writes, about 18 percent of adults manage the care of a family member over 50 (a third of these suffer from dementia). These caregivers, she adds, “face fairly universal challenges: emotional and financial strain, physical stress and exhaustion.”
Lake finds in Penny, who has moved back to her hometown to care for her mother, Mary, one of the book’s examples of the caregivers’ “great and ordinary courage.” Penny’s a recovering alcoholic and drug user with a history of bad taste in men. Her mother can drive her crazy — all Mary wants to do is sit and watch television, and Penny grits her teeth as she tries to force her to take a daily walk.
And yet, Lake writes, over time Penny finds “that in caring for another she herself becomes more steady and kind.” Not all dementia patients are as likeable as Mary (who retains a wicked sense of humor).
One caregiver, Liz, struggles with anger at her abusive husband, now diminished but still difficult.
Sometimes when people want to praise a book of nonfiction they’ll say that it reads like a novel — usually they’re complimenting a particularly well-paced, energetic narrative. “The Caregivers” is as elegantly constructed as a novel, but more than that, Lake writes about these people with such warmth and vividness that they feel as memorable as our favorite fictional characters. In sharing these stories with readers, Lake has written a book that bears witness to their “necessary, intimate, private heroism.”
Kate Tuttle, a writer and editor, can be reached at kate.tuttle@ gmail.com.