At the Memory Cafe: Don’t Forget to Laugh
Willy and Alana St. George, of Lyndonville, Vt., look through a handmade scrapbook at the Memory Cafe held in Lebanon yesterday. “(W)hen I came into the room, it was like, OK, this is like home — big kisses and hugs,” said Willy St. George, whose Alzheimer’s disease was diagnosed three years ago. (Leah Berry photograph)
Kathleen Dunbar, of New London, describes the benefits of scrapbooking for Alzheimer’s patients during a session of Memory Cafe at The Dartmouth Institute in Lebanon on May 11, 2013. Dunbar began scrapbooking when her husband’s Alzheimer’s was diagnosed. (Leah Barry photograph)
Lebanon — Alana St. George poked fun at the balding head of her husband, Willy, who wore a hat in a recent photograph to cover up some “light spots.” Several people got up and tried their best South Asian dance moves after a student troupe finished a performance. And New London’s Mort Houle recited a ribald poem about seniors: “The golden years have come at last / I cannot see / I cannot pee / I cannot chew / I cannot” ... well, let’s just say it rhymes with “chew.”
But amid all the laughs at The Dartmouth Institute in Centerra Park during yesterday’s monthly gathering of Memory Cafe, a social support group for patients and caregivers of memory disorders such as Alzheimer’s disease, there were more deep and emotional moments too.
For example, Kathleen Dunbar told the group about her experiences with her husband, Ernie, whose Alzheimer’s diagnosis came in 2008.
“As a caregiver with my own chronic disease, I felt anxious, frustrated and angry that the wonderful life Ernie and I had together was changing, and not for the better,” said Dunbar, who lives in New London and suffers from Parkinson’s disease.
“I saw that I was losing my renaissance man, Ernest, the smartest, most loving and generous man that I’ve ever known. I was losing him one minute at a time. And he was losing his future and beginning to dwell in his past.”
About 5.1 million Americans are affected by Alzheimer’s disease, according to the Alzheimer’s Foundation of America, and that number is only expected to rise as the population continues to age. The foundation reports that the number of Americans age 65 and older will more than double to 88.5 million — about 20 percent of the population — between 2010 and 2050.
Yet as the number of people affected by Alzheimer’s disease and other memory disorders continues to rise, organizers and participants said the Upper Valley chapter of Memory Cafe is thriving in its third year. Some of its draw is thanks to that duality seen during yesterday’s gathering of more than 50 people: People affected by memory disorders feel comfortable around others who can relate to those struggles, encouraging them to open up about their personal stories.
But, they said, it’s just as helpful to be able to laugh about those struggles, too.
“One of the things that’s key about Memory Cafe is that it’s a mix of the serious and of the lighthearted,” Dr. Robert Santulli, Memory Cafe’s medical director and the head of geriatric psychiatry at Dartmouth-Hitchcock Meidcal Center, said after the meeting yesterday. He founded the local chapter in January 2011 with Kimberly Betts, then a student at Dartmouth College and who now serves as the cafe’s director. “People are living with it and they deserve the best quality of life they possibly can have, and so we try to provide a bit of that here at this, and to have fun with it, because that’s an enormously powerful coping tool, humor.”
That sentiment was repeated by the Dunbars, who told the group about their efforts to create a scrapbook together before Ernie Dunbar’s memory began to slip. During her talk in front of the crowd, Kathleen Dunbar discussed the couple’s efforts to beat the disease — making jokes that only the people who had dealt with the disease could appreciate, teasing Internet remedies like coconut oil, drawing a few understanding chuckles from the audience — and spoke to the ways in which saving her husband’s memories through scrapbooking was choosing “a battle we could win.”
Afterward, Ernie Dunbar told the crowd: “Kathleen did a wonderful job.” And in an interview later, he said the most important part of Memory Cafe is the communal feeling. “It feels like you’re not alone,” he said.
Those sentiments were also expressed by Willy St. George — the gentleman with some “light spots” atop his noggin — whose Alzheimer’s disease was diagnosed about three years ago. He and wife, Alana, have made the monthly 70-mile trip from Lyndonville, Vt., to Memory Cafe at least 20 times, they said, because it plays such a large role in their coping process.
“It’s a fantastic. For me anyway, when I came into the room, it was like, OK, this is like home — big kisses and hugs,” said Willy St. George, a former farmer and chimney sweep. “I know when we walk through these doors that I’ve got a lot of people who feel and know how I feel, experience it. I see that as probably the biggest benefit, and of course the friendship, the camaraderie, is just out of this world.”
And the monthly gathering is helpful to his wife, too, in her role as caregiver.
“It’s a very warm, welcoming, safe environment, where he doesn’t feel alone and he sees other people in the same situation … and I learn many things too, from talking with the other caregivers,” she said.
“It’s just a nice activity that we can do for ourselves. … (I can learn) how people cope with their family members. Willy’s about mid-stage now, we both know it will get worse. We talk about it, we talk about it with other people. There is a stigma unfortunately with Alzheimer’s … but as Willy and I have talked, it’s like anything, you adapt.”
Caregivers play an important role in Memory Cafe, said Betts, who will attend Dartmouth’s Geisel School of Medicine in the fall. She was an undergraduate junior enrolled in Santulli’s graduate-level elective course related to Alzheimer’s disease when he approached her about starting a local memory cafe in 2011.
“I like to describe it as a social group for people with memory concerns and their families,” Betts said in an interview before yesterday’s gathering. “So that’s what really distinguishes Memory Cafe from … support groups because what we’re doing is for both the caregiver or support person and the person with dementia or other memory problems. … In many cases it affects the caregivers as much, if not more, as the person with the memory problems.”
Betts, a member of the Alpha Xi Delta sorority, asked some of her sisters to help out when the local chapter launched in 2011. But that quickly grew into a more formal partnership, with the sorority even dedicating a chairwoman position to coordinating the sorority’s relationship with Memory Cafe.
There’s plenty to organize, as each meeting features a combination of two to three activities, Betts said, including entertainment, presentations and group discussions.
Yesterday, for example, participants talked about scrapbooking as a tool for reliving memories, preserving family history and mental and physical stimulation, followed by the performance by eight members of the Dartmouth student dance group RAAZ, a South Asian competitive dance team.
“It’s a nice inter-generational component that people really enjoy,” Betts said.
“There are so many stories they can tell us, and they do tell us, that we find fascinating. My sorority sisters will say, ‘Oh, did you hear the story about how so-and-so met, or did you know that this person did this for their career?’ And it keeps (the participants) feeling a little big younger.”
Maggie Cassidy can be reached at firstname.lastname@example.org or 603-727-3220.