James Williams loves to work in the garden of his Southeast Washington home, but until last year he didn't spend much time there. His wife, Sallie, 77, has had multiple sclerosis for 23 years, and although for a while she could cook, wash and iron from a wheelchair, she now has the use only of her hands.
"He has to cook and wash and clean and do everything," Sallie Williams says of her husband, who is 82. "If I drop a pill, I can't get it. I have to call for help. Even if he goes to the trash can and the telephone rings, I can't answer it."
"Somebody asked me not too long ago, do you jog?" James Williams laughs. "I said, no, I don't have time to jog. I get all the exercise I need right here."
Now he also gets a break from his responsibilities three times a week when Mary Ewell, a volunteer from the Visiting Nurse Association in the District, comes to spend time with Mrs. Williams.
Ewell provides respite care -- short-term relief for family members who regularly care for ill, disabled or mentally impaired relatives so that the family care givers can have time to themselves.
Although the Williamses' sons help with shopping, cooking and household business, and stop by every day, Ewell makes it possible for James Williams to accomplish the small tasks he rarely found time for during the day. "I can get outdoors," he says.
"My husband can go to the barber shop," adds Sallie Williams. "Mrs. Ewell has meant a lot to us. She's a godsend."
Respite care began in the United States in the 1960s to relieve the families of disabled children, but in the past five years it has come to include relief for those who care for the aged as well. Many of them, both spouses and children, are also over 60 and have their own health problems, which often are made worse by the emotional and physical stress of caring.
Respite care can keep them from "burning out." With an increasing percentage of the population over 65, and the cost of institutional care rising, policy makers, social service agencies and volunteer groups are looking at respite as a way to reduce the burden on family care givers so that older people can continue to live at home.
Of the 27 million Americans over 65, only 5 percent live in institutions, and of those over 85, only about 21 percent do.
Instead, most older Americans live in the community. An estimated 15 to 20 percent, from about 4.5 million people, are only able to do so with the aid of others, usually a family member living with or near them. A majority of these caretakers are women -- wives, daughters, daughters-in-law -- who are often called upon to provide exhausting daily and overnight care.
"With more and more women in the labor market, there is a greater need for alternative, community-based care," says Betty Mullen, manager of the womens's initative of the American Association of Retired Persons.
Mullen speaks from her own experience of caring for her mother for six years. "I was lucky. I was able to keep my job, my mother was able to hire a caretaker during the day, but I came home to take care of her in the evenings and on weekends.
"The role reversal was very hard to cope with. She turned into being totally dependent, to the point where she waited for me to come home and cook dinner. The other problem was guilt -- this is your parent, and if you get short-tempered with her, you feel guilty.
"This story is not atypical," she adds. "One sees senior citizens active, taking tours, and thinks, 'Oh, how wonderful.' But the ones we don't see are the ones being given care at home."
Family members who need respite are usually caring for older persons with chronic conditions that limit their activities. They can suffer from cancer, multiple sclerosis, congestive heart failure, stroke, impaired sight or hearing, Alzheimer's disease, memory loss, disorientation or confusion.
The plight of some 2.5 million Alzheimer's families has been a significant factor in drawing attention to the need for respite care. "Doctors frequently warn us that a potential second victim can be the family care giver," says Rachel Bellington, associate executive director of the Alzheimer's Disease and Related Disorders Association in Chicago, which has several chapters operating respite programs.
"Anyone who has to give such intense care finds it determines all the priorities in her life," says Gail Herrick, volunteer coordinator for the Visiting Nurse Association in the District. "Respite care relieves the care giver's tension about leaving someone alone, and it keeps the homebound person mentally and physically stimulated."
Respite can take many forms: in-home care for short periods during the day, overnight, or weekends; adult day care, where the frail elderly attend programs outside the home so the care giver's days are free; short-term stays in institutions, usually one or two weeks, so the family can take a vacation.
Many respite programs provide only basic companionship and simple services, but traditional services such as homemaking and medical care also can offer respite.
"It isn't really a particular service, it's a function," says Lorraine Lidoff, director of the Family Caregivers Program at the National Council on the Aging. "Whatever gives the care giver a break is a respite service."
This view is confirmed by a recent New York State Respite Demonstration Project, which concluded that respite care should be integrated into the already existing state long-term care system, and that the state needs to recognize respite as a legitimate reason to use those services.
A key issue is funding. Respite care is unique among programs because the real target is the care giver and not the recipient of care.
Sixteen states already have legislation to establish or fund respite care, according to a National Council on the Aging survey. Although there is no direct funding through Medicare or Medicaid, 36 states receive Medicaid funding for service packages that include respite, under a provision allowing them to apply for home and community-based service waivers where the alternative would be institutional care.
Cost is an issue both for government and families who pay for care. New York found cost the single most important factor inhibiting successful provision of respite.
"No one can say this definitely will save money," says Rhonda Montgomery, research director of the Pacific Northwest Long-Term Care Center in Seattle.
Under the auspices of the Administration on Aging and Health Care Finance Administration, the Seattle center is conducting a project to compare different ways of providing help to families that need support. One model gives families approximately $900 a year to spend as they wish on respite care. They can choose short, frequent in-home care, overnight home care, overnight or extended care in a nursing home for up to two weeks, or regular visits to an adult day care center.
"The cost of respite care we provide in this one-year period -- about one afternoon a week, or two full weeks -- is less than the cost of one month in a nursing home," Montgomery says.
But no one knows whether respite care helps to keep people out of nursing homes. "There's a correlation between the physical and mental health of the person being cared for and the mental health of the care giver," explains Edward F. Ansello, associate director of the University of Maryland's Center on Aging. "As the cared-for person's confusion increases, the care giver's level of depression deepens. The care giver thinks, 'I'm going to be at this all by myself for the rest of my life.'
"Respite care would provide the psychological breather that people need when they're faced with the reality of long-term care."
Both New York and the Seattle center's projects suggest that when respite helps care givers maintain their own stability and health, it does make a difference. The Seattle center's project suggests, however, that respite is less likely to be successful in preventing placement in nursing homes if families receive help too late and are already vulnerable or in crisis. At that point they are both more difficult to serve, and services have less impact.
Yvonne Gilder-Gary, director of resident services at the Washington Center for Aging Services, points out that up to one third of the respite admissions for the center's two respite beds become permanent admissions when family caretakers realize during the break how much the care had been affecting their own health.
Families who need respite tend to be isolated from informal support and do not know about or use available services. Many of these families "are independent to the point that they're not traditional service users," says Montgomery. "They've always done the cooking and the cleaning, and they're used to caring. It's not unusual to find that it takes two nurses to do what the spouse has been doing. They don't seek help until they're breaking down, until a crisis comes along. The task is to reach them earlier and get them to use services more regularly as a prevention."
Many of those, like the Williamses, did not know about or seek out the service, but are referred by social workers or health professionals.
Sylvia Smolkin of Silver Spring, on the other hand, did seek respite for her 92-year-old father, Max Rosenberg, when her mother's sight and hearing failed badly.
As Esther Rosenberg's health deteriorated, "it got to the point where she didn't want to be alone, would get very upset, wanted us to be there," says Smolkin. "She was having a hard time seeing in the apartment, couldn't watch TV or read. She used to be very vital, energetic, strong, but now she was disoriented."
Although Smolkin and her sister and brother visited almost every day, they couldn't be there all the time. Rosenberg rarely left the apartment, and the stress wore down his health.
"We were afraid we would lose him, trying to save Mom. When things started to go downhill, I started calling agencies. I knew nothing about agencies. But I was getting to feel desperate, seeing the situation."
The Jewish Council on the Aging's Respite Care Referral Service put her in touch with Roslyn Shumsky, a trained care giver on their roster, who had "retired from work about three years ago and knew I had to do something -- this seemed the best way to use my time."
While she visited with Mrs. Rosenberg, Mr. Rosenberg was free to attend meetings at his senior apartment complex, or simply to read, and the family felt "comfort" that someone else was there.
Mrs. Rosenberg died in October, and Roslyn Shumsky still visits with Max Rosenberg.
Smolkin, along with many of those who work in the field of aging, would like to see respite care available to those who need it, so that families can stay together. "We must find some money for this kind of thing," she says, "because the pain we suffer when somebody goes into a nursing home is something nobody can pay for.