But with social distancing and other rules in play, the group has moved to Zoom’s virtual format, which enables the delivery of the same resources to an even wider network of family members and caregivers.
“Though we’re physically apart, our conversations are still meaningful and intimate,” notes Sallie Carlin, director, Willow Gardens Memory Care. “Family members who might not have participated before now pop into our group easily. We’ve even had people login from vacation.”
The monthly meetings, which are co-facilitated with the Hudson Valley Alzheimer’s Association, give people a chance to share their experiences and struggles of taking care of a loved one with Alzheimer’s, Carlin says. The goal is for them to have the resources, education, and support to cope.
“They hear from each other and talk about how their relationship is different with their loved one since the diagnosis. We share tips and advice on how to handle different situations. They say the group helps them feel less alone during the pandemic,” Carlin adds.
“It’s a blessing to have”
For Heather Bernstein, the support group has been one of the silver linings of the Covid pandemic. Diagnosed with Alzheimer’s five years ago, Heather’s mother lived on her own in Queens with the support of health aides a few times a week. After the shutdowns in March, her mother lost all of her routine social activity. When her Alzheimer’s worsened to a severe stage, Heather decided to move her to Willow Gardens Memory Care.
“My first meeting with Sallie was akin to my first support group meeting,” Heather says. “She listened to me as I went through what I was feeling: scared, vulnerable, and worried about my mom who could no longer advocate for herself. She acknowledged my pain, fear and sadness.”
The support group’s members offer each other practical tips, wisdom, and insights, she says, that help her understand the disease better.
“I learned that although the disease affects one’s ability to communicate, music can reach other parts of the brain. My once-bubbly mother, who is now mostly nonverbal, can manage to sing the lyrics to entire songs. I’m learning so much.”
A New York City resident, Heather is a busy professional and mother of a young child. The virtual group allows her to participate — sometimes while cooking dinner. “I wouldn’t attend group sessions as often if it were only in person,” she says. “The virtual format is a blessing to have.”
Frank Silverstein agrees. He logs in from Hastings-on-Hudson and his brother Gordon joins from New Canaan, CT, where he lives with and cares for their parents, both of whom have Alzheimer’s disease.
“Our ability to process and deal with this disease come from the help of this support group,” says Frank. “Our family is very private, and this is the last thing I would have thought to do. But it has been amazing and helpful.”
Most helpful have been the practical tips on how to handle behaviors caused by the disease, he says.
“When I or my brother talk to my parents, they sometimes fixate on something from the past, like saying they have to visit their mothers, who died years ago. It was difficult to tell them, over and over again, the reasons that wasn’t possible.”
Sallie and the group offered helpful suggestions on how to acknowledge his parents’ needs and tactfully change the conversation, Frank says. He also learned how to refocus agitation, often associated with Alzheimer’s disease, with a calming activity, such as folding laundry.
“We talk through things together. We problem solve. We learn how to meet our loved ones where they are. It takes a lot of the stress out.”
To learn more about the Alzheimer’s Caregiver Support Group, call 914-336-2338 or email email@example.com.