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Two Groups Offer Support to People Affected By Dementia

“It is so relaxing! We're all in a space where we are understood, where what we are experiencing is understood. It's also fun--singing, making flower arrangements, hearing music or poetry, talking casually--all this in a space where we don't have to explain our situation or the situation of the person we are caring for. Having others take care of us, the caregivers—food, clean up, entertainment—it just about brings tears to my eyes! The food is healthy and varied and terrific, and that's no small thing. It's a friendly, caring environment, and I very much look forward to it each month.”

This is Cynthia Snow’s description of the West County Memory Cafe, which meets the third Friday of the month from 12 p.m. to 1:30 p.m. at the Shelburne Senior Center. Cynthia’s father was diagnosed with Alzheimer’s about 5 years ago. Soon after he moved closer to Cynthia’s home in Shelburne, they started attending the Memory Cafe.

The Memory Cafe is co-facilitated by social worker Dianna Young and Shelburne Senior Center Outreach Coordinator Leanne Dowd, who is also a social worker. According to Dianna, “We keep an eye towards something people are able to do,” including musical performances (recently via ukulele and Beatles on the violin), simple crafts, an upcoming visit by comfort dogs, and a planned trip to the Connecticut River.

According to Leanne, the lunch offered at the Memory Cafe is “amazing,” with produce from local farms and options such as bread with cheese and fresh tomatoes. There are always plenty of leftovers to send home with participants, which means a caregiver may need to make one less meal.

“Caregivers get to come with care recipients with dementia and everybody understands the difficulty someone might be having. Someone will bring up an issue and others will have ideas—it’s lovely,” states Dianna. “People feel safe, heard, and understood.”

Dianna Young and Leanne DowdDianna Young and Leanne Dowd

The Shelburne Senior Center also offers the West County Caregiver Support Group the first Monday of each month from 2 p.m. - 3:30 p.m.

Lauri Marder, of Shelburne Falls, who has been providing more and more care for her mother and has attended the support group for over a year, states, “There is so much that is valuable about the group. Any group that sets about trying to help people who desperately need advice, help, encouragement, and information has to be led by intelligent, engaged, knowledgeable people, and the leaders of this group are that. I learn so much every time I go. The principal things that keep me coming back are the stories that the other caregivers tell. It inspires humility and courage to hear the things other people go through and face, often with the greatest grace and strength and love. We would not have a way to experience any of this without the good basic structure of the group, and the attention that is given by the leaders. It feels like a safe place and a good way to learn how to go ahead on each of our separate but connected paths; we all have so much in common despite having such different challenges.”

One important aspect of the caregiver support group is that volunteers offer supervision and activities for the caregivers’ loved ones while the caregivers attend the group. These activities are tailored to the loved ones’ interests, such as reading out loud or going for ice cream. According to caregiver support group attendee Carolyn Smith, “I couldn't have come without that kind of support when I was caring for my friend.”

Carolyn, who lives in Ashfield, has attended the group for close to four years. She became interested in it when she began caring for her friend of thirty-five years after her friend was diagnosed with Alzheimer’s. According to Carolyn, “As her disease progressed it became evident to me that I needed more information, and support to be a good caregiver, thus I joined the group.”

Carolyn states, “The group has been a wonderful combination of sharing information and personal stories, plus has provided a safe, confidential place to go deeper into the frustrations, and the frightening ‘unknowns’ of Alzheimer’s, and to be able to share our own feelings of inadequacy as we all struggle to do our best to care for our loved ones. There is a saying that ‘if you've met one person with Alzheimer's, you've met one person with Alzheimer's.’ There is truth to that but there are enough similarities in our experiences that there always seems to be someone at each meeting who can relate to, and advise you, when you're feeling very alone. Deep listening happens in this group. Encouragement to look for ways to care for yourself while you are caregiving for another is emphasized. The leaders, Leanne and Dianna, are both skilled and compassionate, and are instrumental in creating this safe space, plus bringing us the latest resources and research to help us understand and cope with our caregiving work.”

Carolyn continued attending the group when her friend’s condition worsened and her family made other arrangements for her care. According to Carolyn, this change left her “dealing with the sudden loss of my long-time companion, and my daily caregiving responsibilities.” Carolyn kept attending the caregivers support group, explaining, “I continue to go to the group for support and encouragement, for my own healing and to find encouragement as I discover new ways to do ‘caregiving’ for Irene via phone calls, short notes which include photos of our life and travels together, and an occasional weekend visit. I can't say enough good things about the blessing this support group has been to me!”

Carolyn describes the support group as “a diverse group of men and women, children caring for parents, partners caring for long-time partners, young and old.”

Dianna maintains contact with Memory Cafe and Caregiver Support Group participants by calling them a couple times per month to check in. According to Leanne, along with Dianna’s check-ins, “People know they can call Dianna or me. We talk people through things, people call at their wits’ end.”

While the Memory Cafe and Caregivers Support Group are held in West County at the Shelburne Senior Center, they are happy to have people from any area attend. The first step is to call Leanne at the Shelburne Senior Center at 413-625-2502. Leanne states calling is a good way to introduce herself and tell people a little about the group and the Cafe. She says “Anybody is welcome to call. I am very open to talking to people about what would work.”

If you are not near Shelburne, and are looking for caregiver support, call LifePath at 413-773-5555 or 978-544-2259.