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)

When Ruth Waldman's husband was placed in a nursing home a few years after he developed Alzheimer's disease, she would visit him and they'd hold hands and talk.

"I took him home for Christmas Eve and we had a wonderful time — he was as normal as apple pie," she said.

The next day was different.

"We woke up and he was an altogether different man," said Waldman, 81. He pushed her into the oven, bloodying her face. She had to call the police to their home in Cheshire.

She still visits him, but they don't talk like they used to. He stares into space or mumbles very quietly. It saddens her, but she gets a lot of help going to support groups for caregivers of Alzheimer's patients. She goes to three groups, each held once a month.

"I just love going and sitting and listening — I think I have a lot of problems, and I then listen to people and I hear their problems," she said. "I do get an awful lot [from the meetings], and I have learned to cope with it a lot better."

The Connecticut chapter of the national Alzheimer's Association lists 100 support groups for caregivers of family members with Alzheimer's and six groups for people who have the disease.

Attendees are on a very uncertain and scary road; they look to each other to find their way.

That means hashing out nitty-gritty details like preparing finances, negotiating nursing home waiting lists, and giving up driver's licenses. They talk about dealing with a spouse's outburst, or how to gently nudge him or her out of the kitchen while preparing dinner. They discuss what might await them as the disease progresses.

At a group for caregivers in Southington, the members trade advice on ways to comfort their spouses. Waldman said that when her husband gets an outlandish idea about something, it's sometimes best to go along with it. "Live in his reality, get through the moment," she said.

At the same meeting, Paul Fanelli of Bristol told the group that their greyhound, Ben, has been invaluable in comforting his wife.

"He was a Class A runner, and he is the most therapeutic animal I have ever seen," he said. "He reaches out to her — he literally reaches out to her."

Alan Petitte, whose wife, Joy, 70, was diagnosed three years ago, attends two groups. One is "a little flowery and soft about the situation" and the other is "more hard core about being realistic." They both help.

"I don't know what I'd do without them," said Petitte, 67, of Simsbury. "I probably would have had to institutionalize her at a time when I wasn't ready, and when she wouldn't have been ready to be institutionalized. You do as much as you can and hope that things slow up and keep adjusting. Life is just a bunch of minor adjustments, and I'm just making a lot more adjustments now."

From the support groups, he found not just moral support but practical advice on dealing with a spouse who is slowly slipping away.

"I get a tremendous sense of relief just being able to, number one, blow off steam, vent my emotions to the other members who are there, and I'm very comfortable doing that because I've been going for a couple years and I know many of them reasonably well," he said. "I get a lot of input back from them. … which equates to support. In other words, I'm not the only guy out there."

The future comes up a lot at the meetings.

"Constantly — that's an ongoing theme," Petitte said. No two cases are exactly the same, but their situations are similar enough that they can use each others' experiences to figure things out.

"We'll talk about things that happen and you say 'Oh, that happened to me two weeks ago' or 'That hasn't happened to me yet,'" he said.

Then there are the support groups for those who actually have Alzheimer's. At a recent meeting in Rocky Hill, an Alzheimer's patient named Bonnie (she didn't want her last name used) talked about her fears of the future — specifically about going to a nursing home.