Book Review
A Lifelong Duty
Review by Charles R. Meyer, M.D.
Glimpses into the lives of caregivers and the loved ones they tend to.
After a six-month journey from nursing home to hospital and back again, my father-in-law moved in with us. Our involvement in his medical care stretched from attempts to stay in touch with his physicians in Chicago by phone regarding his cascade of medical problems, moving him to a nursing home in Minneapolis so that I could assume charge of his care and my wife could visit him almost daily, and, now, tending to his needs while living in our home. Although our story is not as poignant and wrenching as many in Nell Casey’s book, An Uncertain Inheritance, the maelstrom of emotions and the deluge of details depicted in these stories are all too familiar.
Family can evoke the rawest emotions, and illness in family members can uncover new sore spots, as caregivers find themselves caught in the crosscurrent between their loved one’s needs and their own lives. All of the caregivers in Casey’s collection need to help, most want to help, but many find helping an unredeeming exercise in futility. In her essay “My Father the Garbage Head,” Helen Schulman describes the exhausting “endless game of gambling on what I hoped would prove to be lesser evils, an endless practice of emotional triage” as she and her brother shared caring for their stroke-disabled father. Despairing that no silver lining appeared after all her efforts, she laments that “All that tender loving filial care was supposed to help my father, but it didn’t. It was supposed to build me into a better person; make me more compassionate, effective, stronger. I think that people like to believe there is a reward in the end for caregiving. There were no rewards. There was only my father’s compelling need, and my useless love for him.”
The stress associated with caregiving is not just the byproduct of time devoted to personal care or dealing with the inundation of medical bills or even not knowing whether the patient will improve or die. It’s also the result of how relationships between the caregiver and the cared-for change, sometimes disastrously, and how illness may make a person almost unrecognizable. Ann Harleman dramatizes this in her aptly titled story “My Other Husband,” in which she intersperses vignettes of her joyful life with her husband before his diagnosis of multiple sclerosis with the saga of his physical and mental deterioration. She escaped as the target of his anger when he finally moved to a nursing home and she was no longer his physical caregiver. “I’m no longer implicated in his illness. His resentment of his body, his despair over his inability to command it, his shame—these no longer extend to me. Because our bodies don’t connect, our hearts can.”
Inevitably, many of these stories tell more about the caregiver than the patient. Feelings of guilt, anger, and frustration swirl around the narratives as the writers try to cope with themselves as they cope with their family member. “Death in Slow Motion” by Eleanor Cooney tells about her mother’s decline with Alzheimer’s disease, but we hear a lot about the author’s travails, “moneylessness, my manuscript deadline, guilt, sorrow, relentless responsibility, and no life of our own: we were trapped, swimming hopelessly in circles, sinking.”
To anyone who has practiced medicine and listened to families of the elderly, these stories sound like a day at the office—the falls, the gradual decline of memory that goes from funny verbal slips to dangerous mental lapses to total oblivion, the calculations about how to adjust to some new lost capability.
As medical providers, we should know how to handle these cases gracefully; yet many of the essays reflect poorly on the medical profession. In his story “The Gift,” about his mother’s terminal breast cancer, Sam Lipsyte quotes his father, who said “you had to ‘charm’ doctors into caring about you. You are auditioning for a part in the doctor’s psyche. Otherwise you’re just meat.” Lipsyte goes on to describe instances of rudeness and insensitivity in his mother’s medical odyssey.
Not all of the stories in Casey’s collection are of unrepentant gloom. Many writers did experience refreshed, rewarding relationships with their ill family members. Yet the overall theme of the collection is that caregiving is tough duty.
At the same time my father-in-law was moving in with us, my daughter gave birth to our first granddaughter. As I watched her washing and feeding little Nola, connecting as she cared, I thought of my father-in-law. Caregiving is lifelong, a duty but also a life-changing privilege. MM
Charles R. Meyer, M.D., is editor in chief of Minnesota Medicine.