Sunday Seniors: At the Memory Cafe, Building a Community of Caring

  • Pat Grove and her husband, Mike Fanizzi, of West Fairlee, share a moment at the November gathering of the Memory Cafe at the Howe Library in Hanover. (Valley News — Liz Sauchelli)

Valley News Calendar Editor
Saturday, November 18, 2017

Hanover — The most touching moment came when I saw Mike Fanizzi put his arm around his wife, Pat Grove, during a recent Memory Cafe program.

It was a simple gesture, so small it likely went unnoticed.

It made me tear up.

I met Grove, 65, and Fanizzi, 70, in September at Perspectives: Looking at Artworks, a collaboration between the Dartmouth-Hitchcock Aging Resource Center and the D-H Arts Program, and I remember being struck by the way the West Fairlee couple interacted with each other and contributed to the discussion, which is designed to stimulate thoughts, reactions and emotions “with minimal reliance on recent memory.” When I attended Memory Cafe at the Howe Library earlier this month, I was delighted to see them again.

In the months that I’ve been writing the Sunday Seniors column, I’ve taken a particular interest in the memory disorder community — in part, I think, because of the strength I see in these individuals and their caregivers, and in part because of the profound emotional and social challenges they face.

And within that community, the spouses and partners who serve as full-time caregivers are not only taking care of physical needs, they’re also coping with the fact that the person they love is changing — which then, of course, changes the relationship.

“There’s a wife role and a caregiver role,” Grove said, “and sometimes they don’t mix.”

But the roles are intertwined.

“It’s so exhausting for a family caregiver who’s doing it for (a loved one) at home,” Marie Esselborn told me at Memory Cafe. And while help is available, it can be challenging to match the right resources with the assistance the caregiver really needs. “I imagine it’s hard for a lot of people,” to ask for help, said Esselborn, who was a caregiver for her husband, Albert, before he died from Alzheimer’s in 2015. “On the other hand, it’s a lot of people who want to help.”

Caring for those with memory disorders is different than dealing with many other maladies. There is the need to respect their wishes — and sometimes they don’t want help.

“It’s difficult if you’re not used to it,” Grove said. “It makes it hard to reach out for help because you don’t know the response you’re going to get.”

Sometimes the people who want to help don’t have the necessary skills, and they may struggle to adjust. “It’s a steep learning curve,” said Grove, who is a retired intensive care neonatal nurse.

Each person who has a memory disorder is different, so even if a caregiver has experience caring for someone with the condition, he or she needs to learn what works for each individual.

“It’s different for every person in that room,” Grove said of Memory Cafe participants.

Programs like the Memory Cafe, which offers participants a chance to meet and socialize, are helpful, but Grove and others worry that the services aren’t being taken advantage of by those who need them. “For every one of us you see there … there are probably 100 people in the community who could use the same service,” Grove said.

The help that Grove needs isn’t with caring for her husband of 27 years — it’s with the things that she can’t do while caring for him, such as household tasks like cleaning or mowing the lawn.

“You can’t be all places at every moment,” she said. “We want to spend quality time with our partner.”

And more than four years into her husband’s disease, that’s what Grove wants to focus on.

Preserving Dignity And Battling Stigma

There’s a point that Grove kept coming back to: the need to recognize and preserve the dignity of the person who has the disorder.

“He had a very important role in the community,” Grove said of her husband, a practicing psychiatrist in the Upper Valley for more than 25 years, including roles at Dartmouth-Hitchcock Medical Center (where Dr. Robert Santulli, founder of Memory Cafe, was a colleague) and the White River Junction VA, to name a few. “Mike was known as a workhorse. He was out in the community. He made an impact,” she said.

“You want to preserve that.”

An important part of that is continuing to go out and socialize. When they do, people recognize Fanizzi. “I foster all those connections,” Grove said.

“People see him and reinforce who he is.”

Grove and others also noted the stigma that continues to be associated with memory disorders.

While Grove said she has seen improvement — she is encouraged by Microsoft founder Bill Gates’ recent $50 million donation to find a cure for Alzheimer’s, which also brings additional public attention to the disorder — too many people still retreat from their communities instead of embracing them.

“There’s a huge denial about this disorder,” Esselborn said.

“It’s isolating, the disease is,” Grove said. “The longer that isolation takes place, the harder it is to step out.”

Fanizzi began showing signs of Alzheimer’s in his early 60s. When his condition was diagnosed, the couple experienced a wide range of emotions: frustration, confusion, anger — “You go through all the grief,” Grove said — before settling into acceptance. “You have to find a new way.”

Grove looked for support and came across the Aging Resource Center. Through those and other programs, “I don’t feel alone in this anymore,” she said. That’s something she wants others to feel as well.

Another way they cope? Humor. “We have some real laughing moments,” said Grove, who will routinely tease Fanizzi with quips like, “Let me refresh what’s left of your memory.”

“The more his disease progresses, the funnier he gets,” Grove said.

Too often, though, the conversation is about what people with memory disorders can’t do: They can’t work. They can’t drive. Depending on their condition, they can’t cook or play board games or follow movie plots or debate current events. And it’s got to be hard, as a caregiver, with all these “can’t” boundaries in place.

And Fanizzi, like others who have Alzheimer’s, is so much more than his disease. He is a doctor and a member of his community. He has opinions. He makes jokes and laughs and sings loudly and creates art.

He is also a spouse to Grove, a role that he has held for close to three decades and will continue in, no matter how his disease progresses. “He’s who I married,” Grove said.

That time he put his arm around her shoulder at Memory Cafe? Those moments still happen.

“We’re each other’s touchstones,” Grove said. “We’ve never been closer.”

I’m tearing up again.

Liz Sauchelli can be reached at esauchelli@vnews.com or 603-727-3221.