New York Times

March 15, 1998

Tradition of Care for the Elderly Thrives in Black Families

Later, she cleaned hospital rooms to feed her own children and cared for her grandchildren while their parents were working. In her 60s, she nursed her dying husband and her elderly mother.

Now, at 95, frail and slowly going blind, it is Mrs. Mitchell's turn. Four years ago, she moved across town to her retirement home -- a bedroom in her son Charles' house here, with bright green curtains and her large-print Bible on the nightstand.

Mrs. Mitchell collects $568 a month in Social Security and a pension of $45 a month from Duke Medical Center, where she retired from the housekeeping department.

She has about $8,000 in savings and no long-term health insurance. What she does have is her family, and her expectation -- redeemed by their promises -- that they will do for her as she has done for previous generations.

The Mitchells are following a tradition in the African-American community, where families have long been expected to care for their mothers and fathers and grandparents, as well as for their children.

It is a tradition born of "certain harsh realities," as Jacqueline Jones, a historian, puts it, "of a historic lack of access to good medical care, public support and the kind of jobs that guaranteed a secure old age."

Peggye Dilworth-Anderson, a sociologist and gerontologist at the University of North Carolina at Greensboro, is directing a four-year study of African-Americans in the state who are caring for relatives. "There are lots of Mr. Mitchells," Dr. Dilworth-Anderson said.

The tradition is hardly unique to blacks. Studies show that nearly one in four American families is taking care of an elderly relative or friend, doing everything from changing diapers to shopping for groceries.

With the ranks of those who are known as "the old old" growing ever larger, and the federal government considered unlikely to provide help in the form of a comprehensive long-term care program any time soon, more and more families are expected to find themselves taking care of elderly relatives.

Still, older blacks are twice as likely as whites to receive care from family members when their health declines, according to a recent study for the National Institute on Aging by Dr. Raymond Coward, dean of health and human services at the University of New Hampshire.

And while caring for one's own is a source of pride, and a statement of love and obligation, it also carries costs in terms of stress, lost wages, jobs and educational opportunities passed up, as well as health risks to the caregivers.

"It's a labor of love, but it exacts a tremendous toll from people who have few resources to begin with," said Jones, a professor of Afro-American and labor history at Brandeis University and the author of "American Work: Four Centuries of Black and White Labor."

In fact, given the economic stresses on black families, and their increased mobility, some experts worry that coming generations will be unable to take on the caregiving role.

"There is a gap between the cultural value and what is practical," said Rose Gibson, a gerontologist and professor emeritus at the University of Michigan, who has studied the black elderly.

The statistics highlight the need: Older blacks have more than double the rate of poverty of older whites, and they suffer from far more health problems, according to figures from the Census Bureau. They have higher rates of hypertension, asthma and diabetes and require more help with the tasks of daily living.

Yet there is more of a resistance to institutional care among blacks than whites, experts say. Years ago, discrimination and poverty barred blacks from nursing homes, or rest homes, as assisted-living facilities are known in North Carolina.

The ones they could afford, when they did gain entry, often offered minimal care at best. Among African-Americans, stories abound of relatives and friends mistreated in nursing homes. While the options have improved -- at least for the middle class -- there remains a deep, cultural mistrust of institutions for the elderly.

Gloria Roberson, a retired University of North Carolina accounting clerk, spent nearly every waking moment for five years caring for her mother, who had Alzheimer's disease, at home in Chapel Hill. Her doctor, concerned about the burden she was taking on, urged her to consider a nursing home, Mrs. Roberson recalled. "We just don't do that," she said. "Not with our people."

Financially, some elderly blacks have no option other than entering a nursing home under the Medicaid program, the federal health care program for the poor. Blacks are far less likely than whites to have spouses to help with their care.

It is not an easy burden for the younger generation. Black caregivers tend to have less money than most white families caring for an elderly relative, so they bear a disproportionately higher burden of the care themselves because they can not afford to hire help.

They are also much more likely to have the additional responsibility of children at home. More than half of all black caregivers have one or more children younger than 18 at home, compared with 39 percent of white caregivers. Many of the black caregivers are single working mothers. Thirty-four percent of blacks older than 65 live in multigenerational homes, compared with 18 percent of whites.

Rewarding Payback From a Caring Son

Charles Mitchell was in the kitchen, cooking supper for his mother. It was 3 p.m., eight hours before he would clock in at his paid job. A police dispatcher at North Carolina Central University in Durham, he works the graveyard shift so he can spend his days looking after his mother. Most black caregivers, studies show, hold regular jobs.

"Some of my friends say, 'You're something else, man,' " said Mitchell, who is 55 and divorced. "They say they admire what I'm doing. I say, 'Well, this is mom. I don't have but one.' She brought me up and looked after me. I feel I should do the same. I feel everybody should."

Three times a day he puts medicated drops in his mother's eyes. He empties the commode in her bedroom that she uses at night. He changes the sheets on her bed. He washes her back, as she did for him when he was small, as she did for her mother when she was old and blind.

He barely mentions his own health problems. A diabetic, Mitchell injects himself with insulin daily.

For all the talk about the so-called disintegrating black family, what is often ignored is the strength of the extended family. "That's the irony," Jones said. "People are constantly denigrating black family life. But if you look at how these families survive and sustain themselves over the generations it's a testament to their strength and resilience."

Mitchell has no paid home health care aides or housekeepers. But he has the support of family members and friends.

His sister Audrey, 52, spends nights with their mother while Mitchell is working. His other sister, Mildred, 54, comes by regularly to fix her mother's hair and provide other intimate care. Mitchell's girlfriend, Sheila Parker, helps with cooking and housework.

The Mitchells' caregiving arrangement is typical of African-American families, Dr. Dilworth-Anderson has found in her study, which is being financed by the National Institute on Aging.

That legacy is particularly strong in the tradition-minded South. Dr. Dilworth-Anderson says she has found that whether caregivers live in urban Durham or rural Warren County, whether their income is $15,000 or $50,000 a year, the sense of obligation is similar.

"What varies is how they can express that sense of obligation," said Dr. Dilworth-Anderson, a professor in the department of human development and family studies. "A high-powered lawyer may have enough resources to make sure her mother is cared for well by using formal services. In that way she feels she's living up to her sense of duty. The lower-class woman may say, 'I don't have all this money to hire all these people, but I have my sisters and brothers.' "

Two Mothers First, Husband Second

For Martha Perry, caregiving meant pulling up stakes in New Jersey, giving up her job and her daily life with her husband, deferring her own dreams.

Four years ago, Mrs. Perry, 49, who had been a supervisor at a group home for the disabled, returned to the town of Wendell, near Raleigh, and moved in with her elderly mother-in-law, who had advanced diabetes. Mrs. Perry's husband, a postal worker, is the family's main breadwinner, and they could not afford for him to leave his job.

There were also other considerations that prompted Mrs. Perry, who has a 24-year-old son, to join the ranks of caregivers, the majority of whom are women. Mrs. Perry said her husband told her, " 'I can't bathe her, I can't do the things for her that you can do.' "

Mrs. Perry took her mother-in-law, Maggie Perry, to the hospital for dialysis three times a week, lifting her and her wheelchair in and out of her car. She gave her mother-in-law insulin injections, cooked for her and bathed her.

Mrs. Perry said her husband and his four brothers paid her $200 a week. A home health aide spent two hours at the house two or three days a week. Eventually, Maggie Perry had to have a leg amputated and was placed in a nursing home, where she died in January of kidney failure.

The demands on Martha Perry have been unrelenting. She had to stay in North Carolina to care for her mother, Eula Brodie, who is 85 and unable to live on her own. For six months, Mrs. Perry was a round-the-clock caregiver, living with her mother near Raleigh.

She was eventually able to move her mother into the nearby McKissick Center, an assisted-living center. The move allowed Mrs. Perry to go back to work, as a group home manager for disabled adults.

Mrs. Brodie, the daughter of sharecroppers, had worked as a maid and a home health care aide until she was 80. She receives about $1,000 a month from Social Security and her pension, Mrs. Perry said.

The McKissick Center had been charging her $1,600 a month. For about a year, Mrs. Perry paid half the cost herself and half out of her mother's monthly income. Two weeks ago, the center learned that Mrs. Perry, unable to afford the cost, was about to quit her job and move her mother back home and reduced her mother's monthly fee to $1,150.

Mrs. Perry has five brothers and seven sisters, who live scattered across the country. They shared a chaotic, harsh childhood, Mrs. Perry said, and have not forgiven their mother for it. Together, they send about $500 a month to help with her expenses, Mrs. Perry said.

"I love my mother because I saw her working herself to death so we could eat," said Mrs. Perry, who visits her mother regularly and oversees her care.

But now it is Mrs. Perry who is exhausted. "I'll be honest," she said. "Sometimes it's tempting to just walk away. This is taking its toll on my health. I have hypertension. I'm just tired of it, I'm so tired. I've had days where I've said, 'Please, Lord, take her.' "

Her husband, who is 65, plans to retire in the spring and join her in North Carolina. They had planned to build a house. But their savings are mostly gone, Mrs. Perry said.

"The money has gone in so many different ways we didn't count on," she said. "When you get married, you think it's going to be you, your husband and your children. But it ends up being you, your husband, your children and both your parents."

Still, Martha Perry would not have it any other way. "It all goes back to slavery," she said. "Family was all anyone had."

Copyright New York Times 1998