The Burdens of Love

By JANE E. ALLEN

Aug. 2, 1999 12 AM PT

TIMES HEALTH WRITER

In the neat back bedroom of a one-story home in Bell, Josefina Perez’s face contorts as she coughs--once, twice, three times. Her eyes are clenched with the distress of pneumonia ushered in by the late-stage Alzheimer’s disease that has made it nearly impossible to swallow, speak, care for herself. Her youngest daughter, Laura Padilla, rushes to the metal hospital bed, reaches for a rubber bulb to suction away phlegm in her mother’s mouth, then lovingly rearranges the curly ends of her gray hair. Perez’s face relaxes once more into stony silence.

It’s a ritual repeated several times an hour throughout the day. Every night, Padilla sleeps beneath a blue-flowered coverlet, just a few feet away from her widowed mother. These unrelenting routines are broken only by four hours of monthly respite care, two monthly sessions at a Spanish-language Alzheimer’s support group and the hours she can get away to pray in church.

In better days, Perez, now 72, nursed her own mother through Alzheimer’s disease in Zacoalco, Mexico. A family album Padilla pulls from a high cabinet shows Perez as a raven-haired beauty, years before the Alzheimer’s. Flipping through the album, Padilla points to photos of a grandmother and an aunt who also suffered the silent ravages of the disease.

Padilla, a pretty and practical woman who has told suitors that marrying her would mean her ailing mother must come along, too, has put her own life on hold for the 15 years her mother has been sick.

“I used to assume because I was the youngest [of seven children] and not married it was my obligation,” says Padilla, now 31. After struggling with being the primary caregiver in the home she shares with her 36-year-old brother, Efren, and his family, she’s made peace with her role: “Now I see that it’s because I want to do it.”

According to social workers, Latinas like Padilla report the highest levels of stress and depression among the Alzheimer’s caregivers they see. The disease, which affects an estimated 4 million older Americans, also takes a toll on the millions of loved ones who care for them. But among African American, Latino, Chinese, Japanese and Korean families, who tend to frown on nursing home care, the burdens can be even greater. Language barriers, limited access to medical services, lack of information about the disorder and poverty compound the isolation and pressure.

As the U.S. population grows older, more families will have to cope with mothers, fathers, husbands and wives who have Alzheimer’s.

“This is the disease of the 21st century,” says Bryan Kemp, director of gerontology programs at the Rancho Los Amigos National Rehabilitation Center in Downey and co-director of a state-funded Alzheimer’s disease center. He predicts that California may see more than 1 million people with the disease by the year 2020.

Doctors, nurses, social workers and others are recognizing that a one-size-fits-all approach won’t work across different cultures, races and ethnic communities, with distinct views of illness and obligation.

Cultural Differences in Caregiving

Accommodating cultural differences has become a focus of the National Alzheimer’s Assn., which devoted a recent educational conference in Long Beach to diversity in caregiving.

At that July meeting, Kemp discussed the emotional turmoil and stress that spouses of Alzheimer’s patients confront in Japanese American, Mexican American, African American and white families. Researchers estimate that as many as 50% of family members who care for loved ones with Alzheimer’s have to be treated for depression and anxiety.

Using Alzheimer’s research funds culled from people checking a box on their California tax return to donate to such causes, Kemp and his colleagues studied stress among 202 people of various ethnic backgrounds who took care of a husband or wife with Alzheimer’s. The study asked the caregivers about their ability to provide care, where they derive their support as well as their levels of religious belief, depression and stress.

Most dramatic among the findings, Kemp says, is that up to 75% of Mexican American women caregivers had a substantial mental health problem. Despite feeling they could ask for help from others, they felt the most isolated and stressed.

Among African American caregivers who responded, “spirituality was a very big buffer against their stress. They believe they’re doing this for a higher purpose, that God will help them cope.”

Mexican American families’ reluctance to use nursing homes “may add to their stress,” Kemp said. “It’s more a sense of duty and feeling guilty that if they put someone in a long-term facility, they’ve somehow failed.”

Kemp tries to intervene by helping caregivers get treatment, find educational and support groups and use community adult day-care centers. Although Medi-Cal will pay for such respite care, Kemp said it’s been tough getting the word out.

Finding the right way to approach underserved communities can be tricky, meeting participants said.

“You need to get the trust of the community,” says Dr. Steven DeKosky, a neurologist and director of an Alzheimer’s center at the University of Pittsburgh. “It helps if you have members of the minority community working with you.”

It’s highly important to debunk the myth that “it’s OK and expected for old people to lose their minds” and let them know that major memory loss merits evaluation, he says.

Here in California, a state filled with immigrants who have preserved native cultures and where nearly a quarter of the elderly population belongs to ethnic minorities, many institutions and social workers are forging community links.

The Los Angeles Alzheimer’s Assn. offers education and support through El Portal in the Latino communities of East and Southeast Los Angeles, and the Dementia Care Network in the African American communities around South Los Angeles and Inglewood. It also has teamed up with Korean Health Education and Information Resources to offer dementia day-care and start a support group for Korean caregivers, said Rosa Ramirez, the association’s director of education and outreach.

Educational materials must be tailored not only by language, but by world view. For example, Asian families often accept memory loss as normal because acknowledging dementia can bring shame. So without using medical or biological terms, social workers have devised softer approaches that help the caregiver look for changes in behavior or daily habits that might indicate a problem, explains Dolores Gallagher-Thompson, a psychologist at a Veterans Affairs facility in Palo Alto and an associate professor at Stanford University’s medical school. A program to identify early dementia within Japanese and Chinese families will ask if Grandma has forgotten how to prepare holiday foods or become confused during games of mah-jongg.

Many cultures leave caregiving to women.

In Korean families, caregiving often falls to the household of the oldest son, who usually works, leaving his wife with the ailing mother-in-law or father-in-law. J. Kim Miller, associate education director at the Roybal Institute for Applied Gerontology at Cal StateLos Angeles, interviewed 25 Korean caregivers and found most acted out of social duty; only three mentioned love.

Kim found Korean caregivers’ coping skills bolstered by religious faith and sharing their difficulties with relatives. Fewer than 40% sought professional caregiving advice.

One of the hardest communities to reach with information is the Chinese community, says Dr. Tiffany Chow, a neurologist at the UCLA Alzheimer’s Disease Center.

Although there are thousands of Chinese elders in Los Angeles County and the disease strikes them in numbers equivalent to other groups, she says it is rare someone Chinese walks into her clinic.

Families often keep the illness under wraps. Chinese culture values a multigenerational home, where it’s an honor to take in the parents who raised you. It’s easy to overlook their mental deterioration because they typically hand over most responsibilities.

“It’s harder to pick up on them not being able to balance a checkbook or not being able to organize a 20-course meal because they’re not being asked to do it. As long as they’re quietly dementing nobody’s noticing,” Chow says.

Once the problem becomes apparent, social pressure kicks in. Families don’t want to reveal the problem because they worry an outsider might “think we’re not managing well.”

However, when she brought together five Chinese American caregivers a few weeks ago, they felt comfortable enough to share their problems with each other and left her heartened that given a setting away from public scrutiny, they’re open to support sessions.

Support groups often offer lifelines.

Support Groups for Families

Latino families value “marianismo,” being like the Holy Mother, uncomplaining and quietly capable, says Gallagher-Thompson, who is studying support groups and other ways to intervene with Latino and Anglo caregivers.

Latinas report “significantly higher levels” of depression and stress than Anglos. The rural women she sees, from San Francisco to Salinas, have limited education and language skills, even in their native Spanish.

That’s what makes Padilla so unusual. She has tracked down help despite great odds and wants to educate other Latinos. She’s become a den mother within her Latina support group--the first of its kind in the nation. It was begun by Maria Aranda, an assistant professor at the schools of social work and gerontology at the University of Southern California.

“She has several things going for her. She has a strong spiritual connection, she’s able to ask for help when it is needed and she is able to find resources when the typical person would say there are none,” Aranda says.

Support groups are new to Phillip DeCoud, a 70-year-old African American man who cares full time for his wife Shirley at their South-Central Los Angeles home filled with photos and other reminders of their native New Orleans and their 50 years of marriage. Shirley was diagnosed with Alzheimer’s five years ago, at age 65.

DeCoud recalls that at about the time he retired from his job making braces at a Los Angeles orthopedic hospital, he started noticing that his wife “couldn’t keep up with the checkbook and was forgetting things like the household chores she normally would do.”

Today, he can’t take his eyes off her, lest she wander away.

Their seven children, who care for 20 children of their own, help as much as they can, “but they have their responsibilities also.”

He says he derives strength from faith. “Just worshiping is enough. Saying prayers and talking gets these things off my chest,” says DeCoud, who walks 22 blocks to church each morning with his wife. She says the daily walks do her good, too, and help her sleep better.

Dolores Storey, a social worker with the Delta Sigma Theta Senior Center, part of the Dementia Care Network, found the DeCouds meals-on-wheels and rides to doctor’s appointments and pharmacies. Storey also got DeCoud to attend his first support meetings.

“I saw my dad interacting with some other caregivers,” said daughter Laurie Sands, 49, of Westchester. “It was so good for him. He was sharing things.”

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Counseling Help for Seniors

Health Insurance Counseling and Advocacy Program offices in Southern California:

Los Angeles County

Center for Health Care Rights, Los Angeles

Sandy Risdon, program manager

(213) 383-4519

Orange County

Orange County Council on Aging, Santa Ana

Marilyn Lozis, program manager

(714) 479-0107

Riverside and San Bernardino counties