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Mindful : February 2015
So many of us will find ourselves caring for a loved one as they brave the journey through old age, decline, and death. Caregiving is demanding—at times overwhelming—and it can cultivate intimacy, wisdom, and insight. Mary Jessup had great difficulty remembering plans, who’d called earlier, even whether she’d eaten lunch. For five years, Mar y—who was living with vascula r dementia—stayed in her daughter Penny ’s home. Every weekday, while Penny worked, Ma ry sat on a worn, green couch and watched TV. In the morning she turned to The Price Is Right and Family Feud. At noon Mar y pushed her walker to the kitchen a nd got herself lunch—peeled a bana na, 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. Mea nwhile Penny worked full time as a botanist at a college. All through the years Mar y lived with her, Penny cooked her mother’s meals, managed Mary’s fina nces and doctor ’s appointments and medications, oversaw the work of home health aides—and made sure Mar y stayed safe. Penny was one in a g rowing crowd: people help- ing family members through the long, slow decline that is today’s typical old age. Family caregivers’ work is often physically grueling, emotiona lly stressful, and isolating—unrecognized beyond the home. In earlier centuries, care for the old and ill was communal a nd familial, shared among women a deeper kind of love By Nell Lake who traded remedies and took turns sitting with the ill a nd 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 symp- toms and medications, a nd 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, ca regivers often give up parts of their own. Every Thursday afternoon for two years, I sat at a conference table in the basement of a sma ll Massachusetts hospital, listening to Penny and other ca regivers 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. → PHOTOGRAPH©JOVANARIKALO/STOCKSYUNITED February 2015 mindful 61 love