Caregiver Resources - Editorial, Caregiver Issues
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Caregiver Resources - Editorial, Caregiver Issues

Family, friends providing informal care


COLUMBUS, Ohio —
The old man lives in a sunny front room, where a privacy curtain makes for a wall and vegetables destined for the summer garden sprout in little pots on the windowsill.

Dogs bark, pet birds squawk and teenagers come and go. “This is a wonderful place,” Bill May said.
It isn’t his. Not the house, not the family. The 78-year-old is here because he met a home health nurse with a big heart, a woman who looked into his milky eyes and believed him when he said he’d rather die than go back to the nursing home.

“So I signed him out of the emergency room, and I’ve had him ever since,” Lorrie Listebarger said.
Nursing homes, in-home-care programs and the battle for Medicaid dollars often grab headlines. But it is still family — and friends such as Listebarger — who provide most of the care for senior Americans.
Researchers at the Scripps Gerontology Center at Miami University say the value comparison isn’t even close.

Informal care, given to seniors by friends and family, is estimated to be worth more than $5 billion.
Yet like the pool of tax dollars available for formal care, the well of potential caregivers isn’t deep enough.

Divorce, relocation and a trend toward smaller families make for fewer branches on the tree, said Shahla Mehdizadeh, a senior researcher at Scripps. “But for the elderly, the need per person is constant.”

While many demographers say a full-blown informal-caregiving crisis is still years away, the math makes it appear inevitable. The 65-or-older population is growing a lot faster than the group of spouses and adult children expected to care for them: 2.3 percent a year versus 0.8 percent, studies say.

Listebarger, a Columbus Cancer Clinic nurse who worked in home health care for seniors, said she saw the situation every day. Forget the familiar stories of stressed-out family caregivers, she said. May, and many others like him, don’t have the ingredients for a sandwich generation.

“There’s nobody,” she said.

When she takes May to the doctor or to the hospital for tests, people seem perplexed, Listebarger said. “They’re like, ‘Who are you?’ They just cannot grasp that I have no relation to him.”

Ohio is an aging state, whose 2 million residents 60 or older make it the sixth-oldest in the nation. Informal care, whether from a friendly cab driver who drops off lunch or a waitress who checks on her regular customers, is crucial, said Libby Gomia, of the Central Ohio Area Agency on Aging.

“Informal support isn’t gone. These support networks that exist in neighborhoods and church communities are tremendous.”

Success, however, “is a two-way street,” Gomia said. “It depends on people willing to offer, and on people willing to receive.”

Listebarger knows that what she and her husband, Keith, have done for May is beyond what some busy families are willing to do for their own.

Since October, May has lived in a first-floor room at their Canal Winchester house. The earth-tone decor that Mrs. Listebarger chose for the room now competes with the clinical — a portable toilet, boxes of syringes, medicine bottles and adult diapers.

“I don’t mind sacrificing a part of my life,” she said. “In my heart, I feel good. He’s much less depressed, much more independent.”

While living alone, and later at the nursing home, May nearly wasted away. “I was at the home and they asked me what I wanted for my birthday,” May said, grinning. “I told ’em a dry diaper and a strong cup of coffee would be nice.”

He doesn’t want for such simple pleasures anymore. “Lori and Keith treat me like I’m their kid.”

However, the Listebargers said the situation isn’t permanent. May is showing signs of deepening mental illness, and his moods have made it difficult, and dangerous, to leave him alone even for short periods. He also is diabetic and has poor hearing and limited vision in the one eye he has left.

His adopted family will not, however, send him back to the place he hated. Mrs. Listebarger said she has May on a waiting list for a different nursing home, one where she can visit him regularly and take him to her house on weekends.

May still will have plenty of Sundays like yesterday. He rose early, ate breakfast with his family and then sat down to watch his favorite television preacher.

After lunch, he put on a hat, got help slipping into his tennis shoes and went to the grocery. “She lets me push the cart,” May said.

Mrs. Listebarger has to shop more slowly than she’d like. But she’d never ditch him, in the store or anywhere else.

“My plan,” she said, “is not to just walk away.” — AP