DIANE MAKAR MURPHY Association helps families cope with Alzheimer's

About once a week, I visit an Alzheimer's care home. I liken it to being Alice in Wonderland. One woman dusts all the surfaces with an imaginary dust cloth. Another takes my hand and asks me questions.
"Where is he?" she might say. Or, "Did YOU take it?"
I discovered answering as if I understood was best received. "I don't know. I haven't seen him," or "No, I think someone else took it."
Another woman is less congenial. She often stands before me, eyes wide, and weeps, "I don't know where my home is! Will you take me home?"
Once she mentioned her son, and I asked what he did for a living. She hesitated, her eyes misted, and she wailed, "I don't know what my own son does!" I learned quickly not to ask questions.
Until you have a loved one whose health is declining, it's difficult to imagine what it will be like. For those with parents or spouses with Alzheimer's, it's a particularly poignant, frustrating and too often lonely experience.
Support groups
The nonprofit Alzheimer's Association makes it a little easier by providing support groups here via an area chapter.
"Families liken it to losing the person little by little," said program director Dorothy Barto, whose mother died of Alzheimer's disease. "It is essentially like going through a grieving process. Memory is lost bit by bit until you are no longer a part of them ... They used to call [Alzheimer's Disease] the Long Goodbye."
Nine counties are covered by Barto's 21-year-old chapter, from "Trumbull down to Wheeling." That encompasses an amazing 23,000 people with Alzheimer's, "most taken care of at home until [the caregiver] can't handle it," Barto said.
Caregiving at home is difficult, but deciding when caregiving must give way to nursing home placement is often heartbreaking. "Alzheimer's is not just a disease for the person," Barto said, "it is a disease for the family."
So far, 18 groups lend support at monthly meetings to people going through the process. Talk centers around challenges, medications, care decisions, financial questions -- "anything you'd like to ask about; it's open," Barto said.
Sharing
At a recent support group meeting in a dimly lit waiting room at the Beeghly Medical Center in Boardman, participants shared their varied experiences. "My husband is more active since going to daycare," said one wife, whose husband was diagnosed with early onset Alzheimer's 20 years ago. "He calls it his work." She laughed, later explaining she works hard to keep her positive attitude.
"My mom used to take care of foster children. Now, she's in her 80's, and she won't do anything," another said. "It's like she's frozen." She calls the caregivers who give her respite, those "at [Park Vista] Eldercare and Sateri, a gift from heaven."
Another woman sitting in the small circle of chairs shared: "My mother-in-law had major surgery and anesthesia and she was never the same after that." Everyone nodded. She said it was coming time to move her mother-in-law away from home, that her father-in-law wanted to leave the decision to the children. "But what if we're wrong?" she asked nervously. "They've been married 60 years. They'll move together. He won't take her to daycare. She's incontinent."
Barto suggested the name of a social worker to help.
Two sisters described how they misinterpreted their mother's Alzheimer's as depression.
Perhaps the most telling was one participant's comment that her mother had also suffered a heart attack. "She can't swallow, nor walk or talk, but she's gaining weight," she said. Everyone there gasped. "People say, 'Oh good. She's getting better,'" she said. "They just don't understand."
At least there is one place where people do.
XFor more information about an Alzheimer's Association support group or to receive a newsletter, call (330) 533-3300 or the help line at (800) 441-3322.
murphy@vindy.com