Day Care for Adults : Costa Mesa Center Spares Kin of Alzheimer’s Patients From Making Some Agonizing Choices

She remembers the day eight months ago when she turned her 90-year-old mother over to the Harbor Area Adult Day Care Center.

It made perfect sense: a center that would take care of her still physically able mother during the day, while freeing her and her husband to go about their jobs.

A respite from tumultuous days and nights, the 24-hour watch on her dementia-afflicted mother--whose memory has faltered disastrously, whose emotional state wavers between gentle submissiveness and bursts of anger, who cannot be left alone for even a minute.

But as she drove her mother up to the front gate of the center for the first time, she suddenly wanted to drop the whole idea.

“My mother didn’t want to go. She kept telling me I was trying to get rid of her, trying to dump her with a lot of strangers,” recalls Gerry Czarnecki, her eyes still welling up over the incident. “I felt the same way. I couldn’t help it. I couldn’t bear the thought of deserting her.”

But she went through with it, leaving her mother, Evelyn Kiousis, at the center--at first for two days a week, then three, now four.

“I have peace of mind for much of the week now. I can live a normal schedule, because I know Mother’s safe, active and loved there.”

The darkest side of Alzheimer’s disease, which afflicts an estimated 4 million Americans, including 500,000 in California, remains overwhelmingly grim.

There is still no cure for Alzheimer’s, which ravages the mind, destroys the memory processes and cruelly distorts everyday behavior, leaving the afflicted in a shadowy world of increasing rages and lapses.

For many families, the caring of the more severe cases can come down to an agonizing choice: keep the afflicted person at home but with it the round-the-clock emotional turmoil, or consider placement in a full-time board-and-care or nursing facility and with that the terrible sense of guilt and finality.

But for some there is now another option, and one far less costly and ominous than institutional care: adult day care centers. Such centers have slowly expanded nationally since the late 1970s, offering group activities and support services to all types of “fragile elderly” who are still able to live at home alone or with relatives.

According to the National Institute on Adult Daycare, its 2,100 affiliated centers have not only served clients who suffer from Alzheimer’s or other brain-impairing conditions, but also those affected by strokes, cardiac disease, diabetes and injuries.

However, confronted with the mounting numbers of Alzheimer’s cases--the Alzheimer’s Assn. projects the number nationwide could reach 14 million by the year 2050--more day care programs have been established especially to meet the needs of those affected by Alzheimer’s and such related disorders as vascular dementia and Parkinson’s disease.

For example, Orange County’s South Coast Institute for Applied Gerontology, which opened its Harbor Area center in 1980 and Huntington Valley site in 1985, is considered the first such private nonprofit day care effort in Southern California.

Still, advocates warn, there aren’t nearly enough specialized programs to meet the need--nationally, only about 12% of day care centers are developed solely for Alzheimer’s clients.

In an effort to encourage the establishment of more such centers and increase community awareness, the California Department of Aging has formed the Alzheimer’s Day Care Resource Center network. Now 6 years old, the state-grant program is the biggest of its kind in the United States. In addition to South Coast Institute in Costa Mesa, the 36 community facilities in the program include centers in Escondido, Los Angeles, North Hollywood, Santa Monica, Pasadena, Downey and Riverside.

A similar expansion effort is being made on a national scale, led by researchers from Wake Forest University and underwritten by the Robert Wood Johnson Foundation, Alzheimer’s Assn. and the federal Administration on Aging. Elderday Adult Day Health Care Center in Santa Cruz is the only California facility in the 3-year-old, 17-site project.

The role of these centers, researchers and day care organizers argue, goes beyond that of a care-taking refuge. It is also, they say, to help modify the disruptive behavior and social isolation of the clients.

“Too many people will write off (the dementia afflicted), even at these earlier stages. But you can’t. We know there are parts of their minds that are still reachable, emotions that can still be channeled,” explains Steve Prather, South Coast Institute’s executive director.

In other words, Prather adds, “we’re talking of preserving, as long as we can, their quality of life--and their dignity. We don’t give up on them.”

The Harbor Area Adult Day Care Center, housed in a onetime school annex wing in Costa Mesa since 1980, is typical of the scope of services and clients in the state-supported resource center program (the state grant accounts for $58,000 of South Coast Institute’s overall $500,000 annual budget).

Although it has a state-licensed capacity for 40, Harbor Area’s attendance still runs 18 to 20 clients a day. The average age is 80, while the range has been as old as 105 and as young as 53. Most of the clients are women.

The listed fee is $29 a day, but there is an ability-to-pay scale. The average stay is 1 1/2 years, but some have stayed as long as four or five years.

As a site for gerontological training, the center has brought in student nurses from Golden West College and social science graduates from UC Irvine. In the works are visits from UCI Medical Center resident doctors and College of Medicine students.

Basically, there is much that is similar to the programs offered by traditional non-medical day centers, such as client group activities--current-events discussions, sit-down exercises, art sessions, field trips--the support meetings for family care givers and the community awareness efforts.

To adult day care organizers, the overall educational problem is the still popular but erroneous perception that such programs are no more than passive “adult sitter” facilities. This is a factor, they contend, in the great reluctance of many family care givers to use the adult day care centers at all.

“It is a very human reaction, a highly emotional decision. It means admitting that they can no longer handle their (afflicted) spouse or parent alone, that they have to go outside of the family,” says Prather, who leads support sessions at Harbor Area for family care givers.

For some care givers, there is an additional heartbreaking factor. “It can be a profoundly jolting experience when they visit a center like ours for the first time,” Prather says. “The reality may hit them the hardest then. They see the future of their loved ones in the more serious cases.”

Then Prather adds: “Some (care givers) do come back and enroll their spouse or parent. Others, we never see again.”

Unlike the traditional day care centers, Harbor Area has an unusually high number of Alzheimer’s clients, 80%. Many of these are considered severe cases, including those that were referred to Harbor Area by other centers in the Orange County Adult Day Care Coalition.

As part of its program, Harbor Area’s seven-member regular staff receives training from specialists--including neuro-psychologist Malcolm Dick of UC Irvine’s Alzheimer’s Disease Diagnostic and Treatment Center--on how best to deal with clients in incidents ranging from simple forgetfulness to angry outbursts.

“The situations can be very delicate because they are still so aware of what’s going on, even if they can’t express it. Many know they are changing, that their condition has worsened,” explains Beverly Daniels, site director at Harbor Area.

“They realize they are now more dependent, that they do need help,” Daniels adds. “But they are so frightened, so angered by their loss of independence and control over their lives.”

Their confusion can be extremely poignant: A woman wanted to save a seat at the lunch table for her son, who she had not seen in years. It can be terrifying: A man, greatly upset by some unspoken fears, climbed over the front gate and fled, only to be brought back by the police.

Mostly, it seems, they are bedeviled by the simplest of terrors: confusion over where they are and whether they will see their families again.

“We tell them we understand, that it is indeed a terrible fear,” Daniels says. “We tell them they are safe with us, that their family will be by soon to pick them up and take them home.

But, Daniels adds, “some will come back only an hour later, with the same frightened look, the same sense of being totally lost. They had already forgotten.”

While full-scaled research on the effect of day care centers on both clients and families remains lacking, day care advocates say the findings from preliminary studies, family surveys and personal accounts by center specialists are encouraging.

“There is still no primary treatment for Alzheimer’s. Nothing can be done in that sense, except for some drug treatments,” Prather says. “But we are convinced that day care as a secondary measure is highly effective.”

“We see it happening every day here. We hear about it from the families,” Prather says. “There is, as we hoped, far less stress on the family. But there are also signs of less agitation and restlessness, less depression and improved sociability for many clients.”

These were the general results found in a 10-week group-activities pilot project last summer, involving five Orange County men who are in the earlier stages of Alzheimer’s and part of a testing project at UCI’s Alzheimer’s Disease Diagnostic and Treatment Center. The men, in their 50s and 60s, were taken on regular outings by South Coast Institute staff, including bowling, museum visits and hikes. Their wives are already part of a support group conducted by the Alzheimer’s Assn. of Orange County.

And similar behavioral changes have been reported by family care givers with the South Coast Institute on Applied Gerontology’s centers in Costa Mesa and Fountain Valley.

Such as Gerry Czarnecki.

“She still has bad days, and we still hardly go out at nights or weekends. But she’s not like she used to be. She sleeps better. She’s a lot calmer and not as restless. She isn’t as down on herself and others,” says Czarnecki of her mother, who suffers from a still undiagnosed dementia.

“There are fewer crises” says Czarnecki, as she drops off her mother one morning at the Harbor Area Adult Day Care Center. “The good days seem more frequent now.”

Indeed, on a bench outside the center’s main room, 90-year-old Evelyn Kiousis looks robust and vibrant in her white cardigan sweater, powder-blue blouse and gray slacks, her little center name tag pinned neatly on a lapel.

Inside, the others have already gathered, sipping tea and munching on cookies. Most of them are chatting at one table. Alone at another table is a woman, humming “White Christmas” over and over. And a man at another table seems to be staring only at the wall.

“Oh, I like it here. People are so nice, no matter who you are,” says Kiousis before she joins the others for a morning of sit-down exercises, discussion of today’s headlines and of food and crafts for Thanksgiving.

Smiling, she confides: “I like to help others. I don’t push myself on them--only if they ask me. Maybe I talk to them or hold their hand. I’ve spent my whole life helping people. It sticks with you. You don’t forget that.”

Then she fusses through her purse, looking for something.

“Oh, here it is. I thought I lost it.”

It was a note from her daughter. It has today’s date, the name and address of the center, the time the center van will be taking her home, where her son-in-law will be waiting for her.

Evelyn Kiousis doesn’t always remember that.