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Mindful : February 2015
checking.’” Penny often felt annoyed, and then guilty about her annoyance. She was trying to manage her mother’s care with skill a nd goodwill. But she often wondered how much more of this she could take— the “water torture,” as she called it, of dementia caregiving. Someone who was once independent can begin to need more a nd more help. It’s called new depen- dence. At first, a son or daughter might assist with finances, then with driving to doctor’s appoint- ments. Suddenly a pa rent might fall, and a g rown child might spend all night with the parent at the hospital. Ca regivers face ever-more frequent health emergencies. In the case of dementia, dependence grows as a person’s thinking inexorably declines. With growing dependence comes not just greater involvement, but greater intimacy, often both lovely and unwanted. On the lovely side, there might be new closeness, the relief that comes with a soften- ing of entrenched roles and boundaries. But role changes also often mean intensive and stressful physical intimacy: Penny felt repelled by cleaning up after her mother’s incontinence. “ Role rever- sal” seems fa r too simple: While a pa rent’s care for a child is usually one of gain, elder ca regiving is infused with growing loss. As a loved one’s abilities diminish, a familiar relationship skews. A ca regiver often feels alone in a strange new land, grieving a loss that goes on and on. “This is slow grief,” one group mem- ber, Anne, told me. Anne had been ca ring for her elderly mother for years, through mouth cancer a nd radiation and liquid diets a nd chronic pain. Anne described a caregiving marathon. Psychotherapist and author Pauline Boss calls the process “a mbigu- ous loss”—a prolonged, unresolved decline, in which a loved one is gone, and yet not. Caregiving isn’t new. But caregiving marathons are. We used to die fa r more quickly. Medical adva nces have wrought a paradox: We’re sur viving longer, but spending more of our late lives in drawn- out illness. Life expectancy has increased; so too has chronic disease. Ma ny with chronic disease stay alive through interventions that did not exist even a few decades ago. More people, too, a re develop- ing dementia—the gradual, progressive, incurable impairment of memory, reasoning, language, and personality, caused by Alzheimer’s and other brain diseases. More than 5 million people have Alzheim- er’s, the most common form of dementia. By 2050, this number is likely to nearly triple. With this increase in chronic disease, more and more people depend on day-to-day ca re from family members a nd friends. The dema nd for unpaid, at- home care is accelerating as baby boomers age and the health-ca re system is stretched thin. According to the Family Caregiver Alliance, more than 43 mil- lion America ns—about 18% of adults—tend a family They also laughed at the things they were going through. “ We do laugh a lot. Even at a lot of things that aren’t funny,” said a woman whose husband had Parkinson’s. “ We make them funny,” said Ben, the group’s facilitator. Penny nodded. She was adept at laugh- ing at the everyday, exasperating situations that seemed to arise all the time: The day, for instance, her mother snuck up and gobbled down two can- noli—ra re treats—that Penny had brought home for them to share. Or the incessant, maddening phone conversations with medical receptionists, home health agencies, VA, and Medicare staffers. Watching reruns on television, Mar y often asked Penny, “Have you seen this?” “ Yeah, Ma,” Penny would reply. “ Well, how could you see it without me seeing it?” This had become a familiar routine. “Mom, you have seen it,” Penny always answered. As she recounts this, Penny laughs. Over the years she learned, from her support group especially, about the needs of forgetful people. She lea rned to avoid correcting her mother, to try to meet her mother “where she was.” This meant not arguing with Mary’s forgetfulness or delusions—doing whatever eased Ma ry ’s mind. This wasn’t easy, of course. Penny hated the TV running in her house, the “mind-rot box,” as she called it. The sound of it, its pervasiveness, reminded Penny that her life revolved around Mar y. Penny was losing her mother, a nd had already lost the woman her mother had once been. Every night before bed, Mar y rolled her wa lker into the bath- room and brushed her teeth. Penny called down the hall and reminded Ma ry to take her nighttime pills. Mar y stood over the pill orga nizer, which Penny filled at the beginning of each week and kept on the table next to the sink. Mary looked at the rows of compartments, marked with the days of the week. “She calls to me,” Penny said, imitating her mother’s voice, “‘Is today Wed.? Is today Thursday? Just As a loved one’s dependence grows, so too does their intimacy—both emotional and physical—with a caregiver. This can be stressful, unwanted, and also lovely. 62 mindful February 2015 love