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Cape Alzheimer's group helps break silence on memory loss
Cape Cod Times - 10/8/2018
Oct. 08--BREWSTER -- Caring for her mother who has Alzheimer's disease, Molly Perdue discovered how frightening and isolating that experience can be.
Now Perdue and her partner, Melanie Braverman, are doing everything they can to build a community among individuals on Cape Cod affected by Alzheimer's and dementia, both the afflicted and their caregivers.
Since Perdue and Braverman opened the nonprofit Alzheimer's Family Support Center in an old building on Route 6A with a couple of support groups and some phone support in 2015, the center's programming -- all free -- has exploded.
The center runs support groups in every town on Cape Cod and hosts confidential family care consultations, coffee hours for people with memory loss and a six-week training for family caregivers, the latter in conjunction with Elder Services of Cape Cod & the Islands.
"There's a definite need for education," Perdue said.
"No one comes into the world knowing how to accommodate someone with dementia," said Perdue, whose organization is hosting its annual fundraising walk Oct. 14 in Provincetown.
People can live up to 20 years after being diagnosed with Alzheimer's, Perdue said. "That's a lot of years of life to help people live better with a disease progression when there's no cure."
Perdue and Braverman took Perdue's mom, Virginia Pickard, under their roof when Pickard's memory loss started endangering her ability to live on her own.
Pickard would forget to take her gout medication and call Perdue from Florida in a panic and in pain when she couldn't walk after waking up in the morning.
At first, Pickard enjoyed life on Cape Cod, but Perdue and Braverman had to take on a more active role in her care as her abilities declined.
A baby monitor meant to keep an electronic ear on the women's two children served double duty to make sure Pickard wasn't wandering off, Perdue said.
Still, she remembers one morning when a woman on her way to a meeting picked up Pickard and drove her home.
"We realized we had to up our game a little bit," Perdue said.
Friends and Elder Services pitched in, Perdue said. Her mother died at age 86 in 2009.
"We could never have got through that alone," Perdue said. "You have to open the door to more support."
Perdue, who has a master's degree in counseling from Northeastern University and a doctorate from the same university in law, policy and society, said care for people with Alzheimer's and dementia is delivered outside of nursing homes and memory care units.
"It became clear so much of caregiving for families like myself and others happens in the intimacy of the home. It happens invisibly," Perdue said.
The goal of the Alzheimer's Family Support Center is to make those needs visible -- address them, Perdue said.
For every person with Alzheimer's there are two or three family members or friends struggling to help, Perdue said.
She said extrapolations from census data indicate there are at least 120,000 people in Massachusetts and 10,000 on Cape Cod living with Alzheimer's or dementia, Perdue said.
Despite their numbers, people with memory loss often feel alone.
People view Alzheimer's the same way they used to view cancer, Perdue said. "There's so much isolation and fear."
Pat Bertschy, of Brewster, said she and her husband stopped going out to dinner with friends after her husband was diagnosed with Alzheimer's disease and Parkinson's dementia with Lewy bodies.
It was too much to explain to people who had no experience with the illnesses about how they can incapacitate people, Bertschy said.
But after Bertschy joined support groups offered by the Alzheimer's Family Support Center, she and her husband started socializing and joining potlucks with support group members.
"I was able to meet with women who were going through the same thing," Bertschy said. It "helped me have a place to go and say, 'This is awful.'"
After her husband died at age 78 in 2017, Bertschy said she felt the need for a bereavement group that understood both the sense of relief and of long-delayed grief experienced by spouses and loved ones of people who have died of Alzheimer's and dementia.
"Because we needed it, they did it," Bertschy said of the Alzheimer's Family Support Center.
The center also runs periodic two-day, 16-hour bereavement workshops by grief counselor Ann Geagan.
"These guys are my life support," said Bertschy, who now works for the family center.
Support groups run by the center are geared toward early onset Alzheimer's patients and caregivers.
Some of the center's programs are drop-offs -- such as monthly coffees for people with memory loss, including a new coffee hour in Mashpee that started in late August.
Others are drop-ins, where caregivers can bring their loved ones, such as a twice-monthly multigenerational chorus at the Eastham Council on Aging that includes fourth- and fifth-graders from Eastham Elementary School, and a creative arts program at the Cape Cod Museum of Art that meets every Friday afternoon.
People have long understood that patients with Alzheimer's respond well to music, said Braverman, who runs several support groups for the center and serves as its cultural director.
"What no one has tried to do is bring kids into the mix," Braverman said.
The center also has a SHINE counselor available for weekend phone consultations about Medicare and Medicaid and plans to bring on another during the week.
The organization raises about $300,000 a year and has 17 part-time employees, including four who check in on families at least once a month by phone, Perdue and Braverman said.
All of the money raised in the Oct. 14 walk will stay on the Cape to support the local, free programming, Perdue said.
"We didn't have a pile of money" starting out, Perdue said. She said she took a personal loan to renovate the old wooden building , once a bait shop, into the Alzheimer's Family Support Center.
"We started with service first," Perdue said. "We believe that type of generosity breeds generosity going forward."
Her mother, who grew up poor in Appalachian Kentucky, taught her that family members take care of each other, Perdue said.
"It was what people in my family did," Perdue said. And now she is taking what she learned at home and in graduate school and sharing that philosophy with the entire Cape.
-- Follow Cynthia McCormick on Twitter: @Cmccormickcct.
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