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Mindful : February 2015
member or f riend who is older tha n 50. Dementia caregivers make up about a third of them. By 2050, the demand for long-term care is likely to nearly double; fa mily ca regivers will continue to meet the greatest pa rt of that need. In the actual world such abstract statistics describe, the caregivers I followed wrestled con- stantly with personal challenges. They stood face- to-face with loss, with their loved ones’ declines, with hard choices, with no choices at all. I was moved by their struggles, by the slow loss their loved ones experienced. At first I found it difficult to stay open to my subjects’ suffering. But I also learned the great value—for the caregivers and for myself—of simply listening. I came to think of the experience as “compassionate witnessing.” Every week, the members listened as others gave updates in their sagas. They ra rely offered one another explicit advice. Sharing weekly stories with people in similar circumstances gave solace. As one mem- ber put it, “There’s so much that everybody under- stands that you don’t even have to say.” Penny and Anne were statistically typical care- givers—working, middle-aged women helping their mothers. But not everyone fits this mold, of course. Increasingly, men are stepping into the role. More and more ca regivers, too, are elderly, taking care of spouses. Like other members of the support group, 90-year-old Daniel coped not just with someone else’s needs, but with his own increasing frailty. Daniel’s wife, Leanne, was 25 years younger than he and bipolar. She was afflicted with debilitating pain. Daniel struggled to meet her needs. He drove her to doctor ’s appointments, cooked her meals, and weathered the erratic bipola r moods. She fell at night. Unable to lift her, he dialed 911. Several times, after her illness worsened, he drove her to the hospital. “She has all kinds of physical ailments,” he told the group. He leaned over the table nearly every week and said, “It’s hard for me to take care of her— because I’m so old.” The group listened, sometimes suggesting resources—a particular doctor, a visiting nurse ser vice, an eldercare law yer—that Daniel might turn to. Some of these solutions seemed beyond his grasp. Even so, Daniel found solace in the suggestions and concern. The caregivers I followed learned, g radually, to adapt to their loved ones’ difficult declines, to dis- cover inner resilience a nd live with a new normal. In returning and responding to difficult circumsta nces over and over, they practiced a kind of necessar y, private heroism—g reat and ordina r y courage. Daniel, Penny, a nd the others were in balancing acts: They sha red the wholesome desire to take charge and make things better; they also helped one another recognize that, in the deepest sense, they had to let go. They confronted the stark truth that, in the end, control is elusive. I grew into a better view of this truth, too. Wisdom happens, I lea rned, in a balance between control and surrender. Continually facing what ca me along—all the surprises, difficulties, and losses—the caregivers grew in this wisdom, and in friendship, and a durable, deeper sort of love. ● Nell Lake is the author of The Caregivers: A Support Group’s Stories of Slow Loss, Courage, and Love. Names in both the book and in this article are pseudonyms. PHOTOGRAPHBYCOREYKOHN February 2015 mindful 63