EagleTribune.com, North Andover, MA

June 18, 2013

Cafe is just for those dealing with Alzheimer's

By Alex Lippa

---- — ATKINSON — There are good days and bad days for Len.

Some days, things go well and he feels optimistic. On other days, he doesn’t know how much longer he can handle it.

Len spends every day with his wife as she battles recently diagnosed dementia. Since the diagnosis, Len has been looking anywhere for support.

“Since I learned she had it, I didn’t know what to do or where to go,” he said.

Then he saw an advertisement at his barbershop for the Alzheimer’s Cafe and decided to give it a shot.

The cafe was an idea generated by three caregivers from Right at Home in-house assistance in Plaistow. The event is for people living with forms of dementia and their care partners. The idea is to meet other people going through the same thing.

“We just don’t want people to feel isolated,” said Elaine Lawrence, one of the founders of the program. “We want to be here to lend support and give ideas to each other.”

Yesterday, Len and two other men sat around a table at Atkinson Country Club and spoke for an hour about taking care of their wives. The men did not want their last names used due to privacy concerns.

“They want to protect their loved ones,” Lawrence said. “There’s also a stigma to it. I think people still equate it to mental illness, which it isn’t at all.”

Len said he couldn’t imagine how tough it would be to watch his wife struggle.

“It’s not like she doesn’t know what’s going on,” he said. “She knows.”

Len listened to stories from Luis, whose wife has been living with dementia for more than 20 years. Luis eventually had to leave his job in order to care for her. She has been living in a nursing home for the last six years.

“I think I took her for granted,” Luis said. “I didn’t realize that until something like this happened.”

Luis told Len that there isn’t one way to care for his wife.

“There’s no road map which is set out,” he said. “There’s a lot of trial and error involved.”

The program is held at Atkinson Country Club each month and is open to anyone. The women have funded the first three meetings themselves and are working on sponsors for future meetings.

Co-founder Lisa Hare said the meetings have drawn about a dozen participants, who find the informal structure of the program comforting.

“They aren’t going to be questioned,” Hare said. “People aren’t going to say, ‘What’s wrong with you?’”

Since his wife’s diagnosis, Len said, he has had to assume more of her responsibilities.

“There were familiar dishes which were staples of our family for 40 years,” he said. “But I can’t cook her shepherd’s pie or her meatballs.”

Hare said the role reversal is one of the toughest adjustments.

“Most men that come here have been taken care of by their wives for much of their lives,” she said. “Now, it’s completely turned around and it’s a real difficult thing for a marriage. It’s devastating.”

But while shouldering additional burdens is tough for spouses, Luis said, it doesn’t compare to watching their wives battle the disease.

“They are grasping on for their independence,” he said. “They are struggling with their sanity.”

Luis warned Len to start financial planning early.

“You need to make all the decisions,” he said. “I decided things, five, seven, 10 years before they happened.”

The group’s founders hope after a few meetings, the men would be comfortable in bringing their spouses to a meeting.

“The message is to bring anyone affected along,” Hare said. “If she doesn’t want to come, then come yourself because there is something for you, too.”

The Alzheimer’s Cafe meets every third Monday from 10 a.m. to noon at Atkinson Country Club. No reservations are necessary. Call 819-4599 for more information.