‘90s FAMILY : Caregivers Face a Cycle of Challenges

Magnolia Manor, a Methodist retirement center and nursing home just down the road from Plains, Ga., would be perfect for her 89-year-old mother, former First Lady Rosalynn Carter said the other day. The only problem is, her mother doesn’t want to go. Instead, she lives by herself, still driving somewhat precariously through the tiny town and depending on her children.

So Carter, the oldest of four siblings and the designated caretaker, worries. She feels responsible. Plus, she said, “I feel really guilty I can’t be there with her all the time.”

In some ways, Carter can relate to the country’s estimated 10 million caregivers, for whom she has co-authored a guidebook, “Helping Yourself Help Others” (Times Books, 1994).

In a sweet and low but rapid Southern drawl, Carter, 67, reeled off facts about care-giving gleaned from the Rosalynn Carter Institute for Human Development in Americus, Ga., where she is a director:

* Eighty percent to 90% of people who require care in the United States are being cared for at home by relatives, many of whom suddenly inherited the role without preparation. More than just worrying, many provide nursing care, shop for groceries, cook, manage finances and navigate a confusing health-care system.

* Eighty percent of caregivers are women, who are frequently exhausted and upset with relatives who aren’t participating. When men are responsible, they take on a more managerial role, Carter said.

* The situation is becoming critical. With advances in medicine, more people are living longer, surviving serious illness and accidents, and need more care. At the same time, the caretaker pool is shrinking because of social changes. More women are working while fewer children--caretakers of the future--are being born.

“With this issue we’re about in the same situation we were in with day care for children in years back,” Carter said.

Her hopes for widespread, publicly funded respite care to relieve caregivers or an adult day-care system for the frail elderly, faded with the recent election of Republicans to most congressional seats.

Meanwhile, she said, what caregivers want most is education--about their loved ones’ illnesses and whether or not they are doing the right thing.

“The best thing we can tell them to do is find a support group, to find some kind of outlet in their lives, to be with other people in the same situation,” Carter said. “It makes so much difference.”

Lonely and isolated, caregivers “feel they’re the only ones in the world in that situation. They feel guilty and angry with the loved one. I want them to know that all of that is normal and there are resources in the community.

“The amount of help caregivers receive depends on their willingness to ask for it,” she said.

In some cases, they cannot avoid the dreaded nursing-home issue, a topic Carter believes is too personal for her to advise anyone. But she said she was a guest on a recent radio call-in show when a woman called and said that “her three sisters had all agreed her mother needed to be in a nursing home. One brother said, ‘My mother does not need to go.’ I told her she just had to be firm.”

Easier said then done--even for the former First Family.

Jimmy Carter’s widowed mother, “Miss Lillian,” didn’t want to go to a nursing home, nor did she want a nurse even after a succession of falls, Rosalynn Carter wrote in her book. Until a week before she died in 1983, Miss Lillian lived by herself in Plains, asking that the ex-President visit her every day. Rosalynn Carter said they went when they could.

Also insisting on independence, Rosalynn Carter’s mother, “Miss Allie,” would never want to live with her children, Carter said. “I think it was because she took care of my granddaddy until he was 95.” They haven’t even discussed Magnolia Manor.

As for herself, Carter said she, too, would never want to be a burden to any of her four children. “We’re fortunate to have Mary,” she said, referring to the family’s longtime housekeeper, Mary Prince.

“I just would rather go off by myself if I were in really bad shape,” she said. Talking it over with her husband, she said she told him: “Just take me over to Magnolia Manor.

“He said, ‘I don’t want to talk about it.’ It’s so typical.”