By Nell Lake
Mary Jessup had great difficulty remembering plans, who’d called earlier, even whether she’d eaten lunch. For five years, Mary—who was living with vascular dementia—stayed in her daughter Penny’s home. Every weekday, while Penny worked, Mary sat on a worn, green couch and watched TV. In the morning she turned to The Price Is Right and Family Feud. At noon Mary pushed her walker to the kitchen and got herself lunch—peeled a banana, perhaps, opened a cup of pudding, microwaved soup. Back at the couch, she ate off the tray of her walker and gazed again at the television: Who Wants to Be a Millionaire, Andy Griffith, Oprah.
Meanwhile Penny worked full time as a botanist at a college. All through the years Mary lived with her, Penny cooked her mother’s meals, managed Mary’s finances and doctor’s appointments and medications, oversaw the work of home health aides—and made sure Mary stayed safe.
Penny was one in a growing crowd: people helping family members through the long, slow decline that is today’s typical old age. Family caregivers’ work is often physically grueling, emotionally stressful, and isolating—unrecognized beyond the home. In earlier centuries, care for the old and ill was communal and familial, shared among women who traded remedies and took turns sitting with the ill and dying. Today, while society is saturated with images of youth and apparent cures for every ill, caregivers toil mostly in private, uncelebrated and hidden from view. They shuttle their loved ones between home and doctor’s offices, monitor symptoms and medications, and coordinate care for their charges in a fragmented medical system. Sometimes they even provide direct medical care.
Along the way, they often struggle with fear, guilt, and resentment. Their challenges take a toll: Caregivers seem to face higher rates of depression and anxiety, lower immune function, and higher rates of death than non-caregivers. In helping others through the end of their lives, caregivers often give up parts of their own.
Every Thursday afternoon for two years, I sat at a conference table in the basement of a small Massachusetts hospital, listening to Penny and other caregivers discuss such challenges. For a book I was writing, I kept a digital recorder running and took notes. The support-group members were gathered in an effort to prevent dire outcomes for themselves. They urged one another to take care of themselves, soothed one another’s feelings of frustration, anger, and guilt. Most of all, they told stories.