Her neighbors in Cedar City know Alice by sight. She's the lady who likes to pick up rocks. Sometimes, as Alice wanders aimlessly along the street, one of the neighbors will fall in beside her, walk and chat and gently guide Alice back to her daughter's house.
The neighbors may know her by sight. But they don't really know her — because Alice has Alzheimer's. As Alice's daughter Jean says, "My mother isn't who she used to be."
Jean remembers her mother as the one who took care of everybody else. "She had so many skills."
Alice was a cook for the state police back in her hometown of Hershey, Pa. She also loved to garden. She won countless prizes for her flowers. For decades, Alice took care of the flower beds in front of her church.
When Alice retired, she moved in with Jean's daughter, who is a doctor and who needed help with her two babies. These days Alice doesn't recognize
the great-grandchildren she helped raise. Nor does she recognize her granddaughter — or her daughter, for that matter. Alice doesn't have a clue who Jean is.
So don't put my mother's last name in the newspaper, Jean asked. And don't put mine in either. Alice used to be so capable. She wouldn't want the world to know her as she is now.
This is not the kind of person my father was. How many times Ann Hopkins has heard these words. This is not what my wife was like.
Hopkins is director of adult day care for St. Joseph's Villa in Salt Lake City. She knows all about this wretched Alzheimer's disease. Still, she and other experts agree, families sometimes suffer more than is necessary.
When relatives visit her facility they often will tell her their loved one wouldn't like the activities. He is not the kind of person who would join in a sing along or toss a toy basketball or color with pastels, they say.
Caregivers may refuse help because they think their loved ones would be unhappy in respite care. Or because they see caregiving as their duty. "I've taken care of him for 45 years," a wife told Hopkins as she reluctantly signed her husband into day care.
And yet, if you were to visit St. Joseph's on a typical Monday morning, here is what you might see: A man who at one time may have been bored by games is pitching plastic horseshoes across the carpet. A dozen of his peers watch and clap. When he gets a ringer, he grins and takes a rickety bow.
Now it's time for singing, and here is the man whose wife was so hesitant to leave him. He doesn't seem at all downhearted. He has been singled out by one of the little boys in St. Joseph's preschool. With each song, the music therapist instructs the children to "go find a grandpa or grandma to sing with." This particular grandpa is chosen time and again by the same 4-year-old lad. They clap, sing, shake the maracas together. They smile.
Relatives often are surprised by what their family member will do at respite care, says Hopkins. There can be camaraderie among people with Alzheimer's. "The activities may seem childish, but they have a purpose," she says. "Small motor movement. Eye-hand coordination. Memory. Physical activity."
So in the midst of the grief and the loss associated with Alzheimer's, there can be comfort. Jean knows her mother is as happy at day care as she would be at home. In truth, Alice enjoys a hug from a respite worker as much as a hug from her daughter. For Jean this knowledge is painful but freeing.
Jean says she makes good use of the days when her mom is at day care. Jean and her husband are both retired and have things to attend to — their own doctor appointments, shopping, chores, a bit of long-awaited relaxation.
Here is the message about respite care, the message from the National Alzheimer's Foundation, the University of Utah gerontology department, the local county departments of aging services and from thousands of caregivers: Respite is good for caregivers, and it is good for people with Alzheimer's. Please try it.
These days, Utah caregivers can try it free of charge. The Utah Alzheimer's Association has a grant from the Willard J. Eccles Foundation to pay for the first three days of respite care for anyone with Alzheimer's.
VaLoy Smith, of Riverton, used the grant to try out respite care for her mother, LaRue Palfreyman. Smith says the respite workers proved to be angels. Her mother feels needed and important at Neighborhood House Adult Day Care, Smith says.
Since Smith works four days a week, she initially kept her mother at home with her on Fridays. But Friday is also the day Smith's grandchildren come to visit. Gradually her mother began to resent sharing the attention. Now Palfreyman goes to day care on Fridays and has Smith her all to herself on the weekends.
More than 25,000 Utahns currently suffer from Alzheimer's. Eighty percent of them are cared for at home. Many Utah families find the cost of respite care limits how much they can use it.
Rates for adult day care vary from $30 to $40 a day or more. This is a bargain if you consider that home health care costs $18 an hour, Hopkins points out. Still, insurance doesn't pay for respite care.
Judy Hatch, at Uintah Adult Day Care in Vernal, explains that some facilities get government funding and are able to offer sliding scale fees. Hatch and others who run respite services try to help the caregivers by seeking fee waivers and funding through various government agencies, such as adult protective services.
One of the ironies of respite care is that it only helps if caregivers use it early and often. Dale Lund, director of the University of Utah Gerontology Center, talks about the most recent studies showing that caregivers report huge amounts of stress.
They say they crave free time to read, pursue hobbies, have a life of their own. However, says Lund, "We also learned that not all caregivers benefit as much as you would expect from respite care."
Forty-six percent reported they were only somewhat satisfied or not very satisfied with the way they used their free time while their loved one is in day care. Lund speculates that by the time they started taking advantage of respite care, their social lives had already become limited.
Caregivers need to know respite is available, and they need to plan their social lives around it — which means they need to use it regularly, even if they can't afford to use it often. Says Lund, "You need to know on Wednesday, when you think you can't take it any more, that on Friday you are going to have a free day."
Jan Parke is the director of the Kindred Care Center in Iron County. Parke understands the work that goes into planning a day's activities for someone with Alzheimer's. You need to provide a safe space to wander, certainly. But you also need to provide stimulating activities — art, hall bowling and field trips — and a familiar routine.
Says Parke, "In respite care we can plan a day full of mental and physical stimulation, so that when the family members go home, they might be able to sleep for the entire night. Then the caregiver can get a good night's sleep, too.
"With respite care, we can keep the family healthy," Parke says. "We can keep the family together a little longer."