AARP Eye Center
Almost every night for 13 years, Sylvia Brown slept by her ailing mother’s side. Then suddenly, she was alone.
Brown had been the primary caregiver to Johnnie Mae, paralyzed on her right side from a 2003 stroke. They shared a bedroom in their Detroit condo by choice — Brown wanted to be close enough to hear her mom’s breathing. That lasted until two years ago, when Johnnie Mae died at 81.
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Some nights still, Brown, 65, awakens and imagines Johnnie Mae sleeping next to her. During the day, Brown remembers the tasks that consumed so many hours of each day for so many years. She would prepare meals, get Mom situated in her chair, make sure the important items — the TV remote, her Bible — were within arm’s reach. With Johnnie Mae’s passing, “it’s like a huge hole, or vacancy, or void in your life,” says Brown, “because the feeling is, Now what?”
Now what, indeed. Caring for another adult — as about 40 million U.S. adults do, according to a recent AARP Public Policy Institute report — can be demanding to the point that caregivers put much of their own lives on hold. When those duties suddenly end, the caregiver is left not only grieving but also processing new emotions about their own station in life.
“Some find they’re not quite sure what to do with themselves because their reason for getting up in the morning, their all-consuming job, has now ended,” says Ruth Drew, director of information and support services for the Alzheimer’s Association. “Some people tell me that for the first six months to a year they’re just finding their bearings, and it takes awhile to feel like themselves again.”
AARP talked with several former caregivers about the struggles they faced in this major life transition. Here are some lessons they learned.
Don't let isolation overcome you
It may sound obvious, but it is also essential: Stay busy to fight loneliness and depression. Find that thing that gives you purpose. “With me, traveling is it,” says Brown, a chief clinical officer for the Detroit Area Agency on Aging. Brown had been able to take her mother on trips, and even without her, she continues to pursue that passion. She jumps on planes for excursions to Las Vegas, New Orleans, Florida, Jamaica and Cuba; a trip to Nigeria with a coworker is in the works. “As they say, life goes on, and so I cannot just go and bury my head in the sand because I have hopefully a few more years, so you fill that with things to do.”
Jeannie Moloo, 57, found relief in writing. “I was almost a cortisol junkie, or adrenaline junkie,” says the nutrition lecturer at California State University, Sacramento. That was life caring for her ailing husband, Nasir, while raising three children. “It was just run from one thing to the next to the next to the next. When you live that way, you don’t have to process a lot of emotions because you’re just running around, putting out fires.”