Support Groups Help Alzheimer's Patients, Caregivers Learn From Each Other

Sharon Scully, 57, (at right) shares stories with Bonnie, 57, (who declined to give her last name) about travels to Hawaii at an Alzheimer's support group meeting. (Patrick Raycraft)

"That scares me," she said. "You've got this bracelet, you can't get out, you're locked in. People come running after you. I tell my kids — we've got a barn — I tell my kids 'Lock me in the barn and don't let me out,'" she said. This gets a laugh from the group, but Bonnie was only half-joking.

"It's scary to get old, from what I've seen, and I've seen plenty of patients in the hospital with Alzheimer's and I said 'Not me,' and here, this is the beginning," she said.

"They're in another world, another dimension and you're looking straight at them and I'm thinking 'That can't be what I'm going to be like.'"

Patty O'Brien, the group's moderator, told her that Alzheimer's affects people differently and "not everybody is that person you saw in the hospital."

"I hope not," Bonnie replied. "But I also don't want to be in the nursing home where you can't get out and your family forgets about you because you 'being taken care of.'"

Spreading The Word

At the same meeting was Sid Yudowitch of South Windsor. He's a former information technology worker. He's been on disability for four years, because he could no longer do the tasks required of him at work. At first, the diagnosis was anxiety and depression — like many people, it took a few years after his first symptoms emerged to get an official Alzheimer's diagnosis.

He goes to a couple of support groups. He prefers one held every month in Rocky Hill because the members are younger. At 62, he's the oldest member — most people with the disease are diagnosed after 65 — but still on the young side for Alzheimer's.

"I think there's a really big difference between the younger early onset people and the people who are retired and older," he said. Some, members of the group have young children. The group with older members tends to focus on emotional issues, he said, while the younger group shares advice on more practical matters.

"The group in Rocky Hill, that's a very active discussion," he said. "We're talking about detailed drug trials and different things so there's a difference in what we talk about. It's connected more with people like myself — people who are out and active. I'm driving to New Hampshire in an hour, so I'm still really active. We're doing things."

Wearing a T-shirt with the words "I'm An Alz Activist," Yudowitch talked at the meeting about how his work in educating the public about Alzheimer's. He remembers the difficulty his father had communicating while he was in his 90s and developing dementia.

"He had trouble putting things into words," he said. "The first thing in my mind was that in order to get what I want I would have to communicate effectively."

Soon after learning he had Alzheimer's, Yudowitch decided to work on his speaking skills and joined Toastmasters. The act of preparing a speech helps him maintain his cognitive skills. Since he developed Alzheimer's, he has had trouble reading from a script and speaking out loud. He has to memorize most of it.

"When you do public speaking you have to organize and do some practicing," he said. "I really enjoy it and I think I'm pretty good at it, and I'm comfortable on stage. You talk about what you know. I've done extensive research on every phase of [Alzheimer's]."

Petitte, of Simsbury, said his wife also goes to a group for Alzheimer's patients. She first went "on a whim" and with a good deal of reluctance. "And she absolutely loved it," he said. "She came out of the room beaming, which is very unusual."

As for him, Petitte said: "It's just being able to express your feelings and have people talk back to you and give their take on what you're saying and knowing you're not alone. Which is tremendous."

For information about times and locations of the meetings, contact the Alzheimer's Association 24 Hour Helpline at 800-272-3900 or visit their website at http://www.alz.org/ct.