Soledad Candia's three children were small 11 years ago when she first thought her mother was going crazy. At the time, she held down two jobs while Adela Candia, her mom, then 69, stayed at home to watch the kids. Angel, her oldest son, remembers his grandmother as a nurturing, vibrant woman who was always cleaning and keeping things neat. "Those things just stopped," he says, "and she started forgetting things."
When her children said Grandma was always yelling, Soledad chalked it up to childhood misbehavior. But then yelling turned to absent-mindedness, hitting, breaking things and erratic behavior like baking shoes in the oven. Soledad quit her job.
"I knew my children were no longer safe and she was going to hurt herself as well. I had to be home to take care of her," she says.
Alzheimer's disease is a disturbing illness that afflicts more than 4 million Americans, bringing confusion and distress to even greater numbers of grandchildren.
"Usually a younger child accepts this as the way the world is, until the grandparent does something really bizarre. Then they may become frightened and reach out to a parent," says clinical psychologist Debra Cherry, an associate executive director of the Los Angeles Alzheimer's Assn. "It's important the child understands that Grandma or Grandpa is not crazy, but ill. That their behavior doesn't mean they don't love the child."
For Adela, the forgetfulness and anger turned malicious. Once she confronted Soledad with a knife. Finally, at age 71, Adela's condition was diagnosed as Alzheimer's disease, but life at the family's Boyle Heights home didn't get much better.
In 1988, Soledad suffered a stress-induced stroke. So two years ago, when she began to feel overwhelmed by stress again, she called a family meeting. She told her children that Grandma would have to go to a nursing home. Her children begged her not to send her away. They would help care for their grandmother, they said.
Today, Angel Candia, 18, Ronnie Brock, 14, and Adela Brock, 11, all take turns feeding, changing and being on 24-hour watch where their 80-year-old grandmother is concerned. Soledad says they have never once complained.
Adela is docile now. She hasn't spoken a word in eight years. She spends most of her days rocking back and forth and being cared for like an infant. Yet for all the difficulties, this is a close-knit family whose members enjoy each other and look for humor in their predicament. Adela is loved and coddled by her grandchildren.
They know she can experience joy in small spontaneous moments. They feel it is their commitment to family that keeps her intact and out of a nursing home. Rayleen, Angel's 18-month-old daughter, has never known her great-grandmother in any other condition, yet she understands how to make her smile.
A study on the effects of Alzheimer's on families shows children 7 and younger readily accept the patient's behavior once an explanation is given. The same study showed children between 11 and 14 have the most difficulty coping, often because they perceive their family as different from those of their peers.
Most counselors suggest parents explain the patient's behavior honestly, while maintaining the patient's dignity. "An Alzheimer's patient does not learn from a reprimand like a child," Cherry says. "It's important that children are loving and nonconfrontational."
It is also hard to accept that a grandparent is not getting better, Cherry says. "I used to think she'd get better," says Ronnie, who was a toddler when her grandmother first showed symptoms. "I was so disappointed when she didn't.'
Eighth-grader Anthony Tikidjian of Glendale has watched his grandmother slip away for eight years. She has lived with their family for nine months. "It's like watching someone die twice. First their personality, then their body," he says.
He and his sister, Allenoosh, each take shifts in helping her. "She doesn't realize what we are doing for her. She doesn't even recognize us. At first it was very emotional, but now it's gotten routine," Anthony says.
Cherry says 75% of Alzheimer's patients are cared for in the home. "It's a catastrophic disease for the family as well as the patient. The person who has the disease is aware of it in the early stages, but becomes less aware as the disability increases. Yet the family is always aware. Families may feel they have no sooner adjusted to the patient's new level of capacity when it changes and declines."
Children may worry about the caregiver, usually their mother, who is under tremendous stress. There may be a lot of anxiety in the household. Children may worry the disease will strike their own parents.
Children learn to cope in many ways, Cherry says. Don't load them down with responsibilities, but allow them to contribute. Even little Rayleen Candia is asked to get a diaper for her great-grandmother when she gets one for herself.
Adam Joffe-Shapiro, 11, intuitively anticipates his grandmother's needs. Their encounters are pure affection. He sits and holds her hands while his soothing voice reminds her she is in California, not Brooklyn. That she used to make his favorite foods, that he loves her very much. In a care facility near his Sierra Madre home, his grandmother Marion lives with five other Alzheimer's patients. Oddly, it is Adam who helps keep adult visitors from feeling awkward there.
"I tell them what questions not to ask and how important it is to be calm," Adam says. "You have to try to find ways to show how much you love them and care."
For now, Adam accepts his grandmother's hugs and kisses and talks of old times, but he realizes the eventual outcome: "It'll be very sad when I go to visit her and she doesn't recognize me."
Kids may feel that if the grandparent doesn't remember them, why should they visit? But Cherry says the emotional memory of that visit does stay with the patient. "The patient may not know you, but can experience great joy in the 'now' moments of that visit."
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Books to Help Kid Cope The Los Angeles Chapter of the Alzheimer's Assn. recommends the following children's books about Alzheimer's disease:
* "Always Grandma," by Vaunda Micheaux Nelson (G.P. Putnam's Sons, 1988).
* "A Special Trade," by Sally Wittman (Harper and Row, 1978).
* "Grandpa's Face," by Eloise Greenfield (Putnam, 1991).
* "Grandma's Soup," by Nancy Karkowsky (Kar-Ben Copies, 1989).
* "Grandpa Doesn't Know It's Me," by Donna Guthrie (Human Sciences Press Inc., 1986).
* " 'I Remember!' Cried Grandma Pinky," by Jan Wahl (Troll Medallion, 1994).
* "Maria's Grandma Gets Mixed Up," by Doris Sanford (Multnomah Press, 1989).
* "My Grammy," by Marsha Kibbey (Carolrhoda Books, 1988).
* "My Grandma's in a Nursing Home," by Judy Denton and Dorothy Tucker (Albert Whitman & Co., 1986).
* "Nanny's Special Gift," by Rochelle Potaracke (Paulist, 1993).
* "Sachiko Means Happiness," by Kimiko Sakai (Ingram, 1991).
* "Wilfrid Gordon McDonald Partridge," by Mem Fox (Kane / Miller Book Publishers, 1985).