Around 30,000 Vermonters are caring for someone with dementia. The stress that comes with that job has been shown to cause higher rates of depression, anxiety, cardiovascular disease and weakened immunity.
Memory cafes are free social gatherings designed to relieve some of that stress. They provide support for caregivers as well as their loved ones with dementia.
About a dozen communities around Vermont host them. Joann Erenhouse facilitates four of them, in Brattleboro, Wilmington, Chester and White River Junction.
“They’re all different,” said Erenhouse, who works for Senior Solutions, one of the state’s five area agencies on aging. But they all provide a safe space for caregivers to connect and feel heard.
“There are very few resources to provide any respite to these caregivers who are on duty 24/7,” Erenhouse said. “They're unpaid, they do it out of love, and we want to keep them from tiring out and getting depressed as well.”
Jon Bouton lives in White River Junction. His late wife, Judi, had Alzheimer’s, and Bouton was her primary caregiver. “It’s really hard to do it alone. Vermonters, or I think I, was not inclined to reach out,” he admitted, adding, "That was probably a mistake."
Bouton didn’t know about memory cafes while his wife was still alive. But now, he volunteers at one in White River Junction, which he said has helped him navigate his grief. “I think I can use my experience and be a sympathetic listener. I like to think I’m being helpful."
Sympathetic and understanding ears are what keep Diane Holme coming back to a monthly memory cafe in Chester. While her husband enjoys the supervised group activities, she looks forward to the time with other caregivers. “It is probably one of the most important things for support for me. You don’t have to say much because they know exactly what you’re talking about.”
Holme sat in a semicircle with five other caregivers last month who took turns discussing what was on their minds.
“He can’t tell me anymore if he’s in pain,” said Deborah Tucker of her husband Jerry, who’s entering the final stage of Alzheimer’s. “He’s to the point where he can’t understand simple words — that’s hard,” she said softly.
“I’m a fixer. I fix people, but I can’t fix this,” said Pat Koenig, an exercise instructor. “When a new symptom appears, I go down a rabbit hole on the internet.”
“Can he still dress himself?” asked Tucker.
“It’s getting iffy,” Koenig answered. “My oldest grandson graduates in June, but I can’t travel with him anymore, so I don’t think we can go.”
The others nodded in understanding.
“Hey before we run out of time, how’s Mary?" Holme asked, turning to a woman sitting next to her. "She looks like she’s changed,” said Holme gently.
“Yeah, she’s quieter, and we’ve been too isolated,” the woman said. “We’ve had issues with sundowning and it’s been like a roller coaster.”
The woman didn’t want to include her name, but she began to visibly relax as the others in the room listened and offered suggestions.
Kimblery Meyer of North Springfield said she goes to several memory cafes and keeps in touch with caregivers between them via text or by phone. “It’s support, it’s to vent, there’s tears, there’s laughter. Sometimes the laughter is just, you know, I’m so overwhelmed.”
“You kinda feel like you’re out on an island alone when you have someone with dementia,” Meyer said.
"Yeah, it's so important to know you're not alone," agreed Koenig.
