Emory Report
April 11, 2005
Volume 58, Number 26


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April 11, 2005
Sharing in the caring

Johanna anderson is programs manager for the center for health in aging

Stories of caring for an older adult are never exactly the same, but they hold many common elements. When we listen to another’s story, we feel supported in our own process; when we share a common understanding, we laugh and cry together.

I may have started thinking of myself as a caregiver when I began to phone my mother every evening. Her husband, Walt, had broken his hip for the second time and went from the hospital to a nursing home. Mother was alone.

Walt not only had a broken hip, he had Alzheimer’s. Increasingly, his days were spent sleeping, and he was known to offer visitors a quarter to leave. He had no real interest in rehabilitation. There had been several episodes of nearly losing him, but with visits to the emergency room and a few days of hydration, Walt would stabilize and return to the nursing home. Finally his physician told Mother he no longer could be fed by mouth, and she had a decision to make about inserting a feeding tube. And because Walt did not have a living will, the decision fell to her, though she deferred to Walt’s younger sister, a retired surgical nurse.

Later, as Mother’s own care continued to shift to her daughters, my question was whether I would know what to do and when to do it. How could a daughter living in Georgia, talking by phone to a mother in Kentucky, know when she needed more care? On the phone she always sounded competent, upbeat, free of complaints. Would I be able to detect when she needed more?

Mother loves people. She’s a good storyteller, always ready to talk. But after Walt was gone, she seldom wanted to leave the house, saying she “didn’t have the energy” to interact with others. Her doctor prescribed an antidepressant (to increase her “energy”), and soon she began to reach out to people again, calling everyone in her church directory to wish them a happy day. Extended conversations often followed.

Long before I was aware, Mother could feel her memory slipping, and she made lists of things to remember to tell me. When I asked what she had for dinner, her account would sound convincingly delicious, frequently describing meals she said the neighbors brought; I could not tell by phone that she found it easier to grab peanut butter and crackers than to prepare meals, or that her food, out of sight in the refrigerator, had been forgotten.

More questions crept in for me. Was her physician knowledgeable about care for the elderly? Would he address her problems or ignore them with a “What do you expect at your age?” Had she lived in Atlanta, I would have arranged an appointment at Wesley Woods, where geriatric physicians make the elderly their central focus. There she could get an in-depth assessment of her health, memory and medications.

But traveling to Atlanta was not an option; it was difficult enough to get my mother to go 10 minutes across town to see her trusted doc. “There are too many sick people in the waiting room,” she’d say.

Fortunately, Mother lived in a small town, where family, lifelong friends and fellow church members all played parts in watching over her. Her close neighbor checked on her several times a day. My sister lived in town and could help her with paying bills. Also, the town had a certified elder attorney who helped organize her legal and financial matters.

Many long-distance caregivers aren’t lucky enough to have such a spectrum of support for their relatives. But most regions have an Area Agency on Aging (AAA), a good place to start to put together a team of local services. AAA can provide information on care managers, geriatric centers, home care, delivered meals, housekeepers, home adaptations, long-term care facilities and much more. Serving 10 metropolitan counties, Atlanta’s AAA features an Aging Connection line (404-463-3333) that can help find solutions for aging relatives’ unique needs.

More than anything, I wanted Mother to remain independent and active as long as possible—and to feel useful. I resisted the temptation to hire someone to clean, sweep the driveway, or handle any chore she still wanted to do herself. Activity would keep her healthy. Of course, her independent nature helped, but when she had a couple of near falls, when the neighbor reported she wasn’t eating well, when I visited and saw the burn marks on her teapot, it was time to talk about change.

Long ago, my sister and I realized Mother had no intention of ever moving in with either one of us. She and Walt had been so enthusiastic when two assisted-living facilities were built in town. But was she ready to move into one now? No, siree. “As long as I can feed myself and am content to sit here watching the birds in the backyard,” she said, “I will stay at home.” We continued these discussions over many, many weeks.

I made peace with the idea that it might take a crisis to change her mind, and in fact a near-crisis helped do just that. I had no qualms about colluding with her doctor, asking him to recommend that she no longer live alone. It took her four days to finally say yes. Mother’s friend provided the tipping point: “If you don’t go now,” her friend said, “the next crisis may leave you in such poor condition that assisted-living will not take you; you’ll end up in the nursing home.”

Mother moved that day, and she’s been there over a year. She loves it, and she loves the people there, and not once has she expressed a wish to return home.

My mother’s acceptance and positive attitude are a gift to me. It parallels her lifelong tendency to look for the bright side in every situation and take action before it’s too late. I am also thankful to have friends, similarly caring for their parents, who share their experiences. Through our sharing, we pass around a lot of useful information and mutual support.

Every year the needs of caregivers are receiving more support and attention. The need to plan for end-of-life care has been highlighted by recent national debate. “Five Wishes” is a document available from the nonprofit agency Aging with Dignity (www.agingwith-dignity.org) that helps families talk together about end-of-life issues before such care is needed. When completed, it is recognized in Georgia as a legal document. “Critical-Condition” (www.critical-conditions.org) is another program developed by Georgia Health Decision that provides training for professionals, employees and families dealing with end-of-life care.

Five Wishes, along with a range of other information and services for caregivers, will be available at this week’s fifth annual “Sharing in the Caring” conference, April 16. The event is organized by the Emory Center for Health in Aging (www.cha.emory.edu) and the Fuqua Center for Late Life Depression.

For more information or to register for Sharing in the Caring, call 404-778-7777.