- By Carol Levine
Summer reading lists are an old standby. But winter is a great time to pick up a good book and settle down for a cozy evening.
After I published an anthology of short pieces about family caregiving (Living in the Land of Limbo: Fiction and Poetry about Family Caregiving, Vanderbilt University Press, 2014), I turned to novels on the same subject. Some are well known (The Corrections by Jonathan Franzen and Still Alice by Lisa Genova, for example). But I found a lot of books, some old, some relatively new, that are not often associated with family caregiving, though are built around that experience.
Here are five of my favorites:
The Last Days of Ptolemy Grey
By Walter Mosley (2010)
Walter Mosely is a prolific mystery writer. The best-known character in his more than 40 books is Ezekiel (“Easy”) Rawlins, who moves from the South to the Watts section of Los Angeles in the 1940s and becomes a reluctant detective. Ptolemy Usher Grey is a detective of sorts as well, but his story is much more than an attempt to solve a mystery.
Ptolemy is 91, lives alone in an apartment surrounded by filth, and is beset by memory loss and apathy. His grandnephew Reggie is the only person he can more or less depend on.
But when tragedy strikes, Ptolemy wants to find out why. Robyn, a teenager living with Reggie’s family, rescues Ptolemy from squalor and helps him regain his dignity. Mosely, who was a caregiver for his mother, has skillfully portrayed a man sinking into dementia and his relationship with an unlikely but resourceful young caregiver.
By Edith Wharton (1911)
Ethan Frome is a classic short novel, remembered mostly for the sledding incident that transformed a doomed love. But it is also one of the first unsentimental depictions in American literature of the impact of illness and trauma on a family.
Many people are nostalgic about a past where families took care of their own without outside help or complaint. This romanticized past is put to rights in Wharton’s description of bleak poverty and isolating winters in rural late 19th-century New England. Relatives sent unmarried young women to other households to provide care, not from any generosity of spirit, but to repay financial or other debts.
Mattie Silver is one such indentured servant to Zeena Frome, Ethan’s wife, who was herself his mother’s caregiver. Eventually, fate intervenes, and characters swap roles and caregiving responsibilities. Although set in the distant past, the story has resonance today because caregiving affects so many people in ways they could never anticipate.
After Auschwitz: A Love Story
By Brenda Webster (2014)
The Holocaust might seem like an unlikely backdrop for a novel about family caregiving. In fact, caregiving is a double theme.
Set in Rome in 2010, the novel moves back and forth between the present and the past. After World War II, Renzo, an Italian filmmaker, marries Hannah, a young Romanian woman traumatized by her experiences as an Auschwitz survivor. After 20 years, he leaves her, but they remain close. When Renzo starts to succumb to dementia, Hannah, in turn, becomes his caregiver.
Real people like Primo Levi, a writer who described his concentration camp experiences, figure in the story. The novel explores the power of memory, love and commitment to heal even in the face of personal turmoil and a background of unspeakable horrors.
By Michael Ignatieff (1994)
Dementia is among the most-feared diseases of our times. Scar Tissue by Michael Ignatieff follows a family through the tensions and upheavals that accompany a mother’s diagnosis, decline and death from this disease.
Ignatieff is a political scientist, university professor, and sometime politician in his native Canada. The narrator is a philosophy professor, his brother a neuropathologist. The tension between the worldviews of science and philosophy in the novel may reflect Ignatieff’s own struggle to understand and accept his late mother’s illness and death from dementia.
Ignatieff chose as his title the evocative image of scar tissue in the brain. But it may also refer to the scars left by family dissension and accumulated hurts that persist after a long ordeal with dementia, which the rest of the novel explores. Ignatieff seems torn between an intellectual interest in the specialists’ view that dementia is a “disease of memory function, with a stable name and a clear prognosis” and the more abstract philosophical view that it is “an illness of selfhood, without a name or even a clear cause.”
One True Thing
By Anna Quindlen (1994)
Ellen Gulden is an up-and-coming magazine journalist in New York when her mother is diagnosed with cancer. Her father, a self-absorbed but much-adored professor, expects Ellen to come home to take care of her mother. ”It seems to me another woman is what is wanted here,” he says, using passive language that takes him out of the equation.
Ellen’s boss says, “Not to be crass but a sick mother means three weeks off and a very nice arrangement of flowers sent by the staff.” So Ellen becomes a family caregiver by default and, in the process, learns to appreciate her mother more and understand her father’s weaknesses more clearly.
The story is framed by present and past narratives about a criminal trial involving Ellen. While this device adds some tension, the day-to-day descriptions of caregiving and how it affects the family are the most compelling aspects of the novel.
Carol Levine directs the Families and Health Care Project at the United Hospital Fund in New York City. In addition to Living in the Land of Limbo, she published Planning for Long-Term Care for Dummies in 2014.