PROVINCETOWN — Jane Paradise and her husband, Frank DiGirolamo, have dinner out at restaurants three times a week — at a minimum. They go to bed at midnight, and DiGirolamo sleeps until the afternoon. The rest of the day is taken up by walks through Provincetown’s streets and along its shores.
Alzheimer’s Family Support Center
PROVINCETOWN — Knowledge equals power when it comes to navigating a health crisis. Sometimes it even means financial power.
No one knows this better than Molly Perdue, co-founder of the Alzheimer’s Family Support Center (AFSC) of Cape Cod, who told the Independent that financial crises are often one of the unexpected consequences of dementia.
She related the case of a couple in which one person had dementia and the other was being treated for cancer. One day after receiving a chemotherapy treatment, the cancer patient had to be hospitalized. That meant the partner would be left alone. They hired someone to help, paying $6,000 a week, only to discover later that respite care would have been covered by their insurance. They could not be reimbursed, however, because their policy required them to have made the claim within 30 days of the incident.
“Had they known that earlier, it would have saved them thousands and thousands,” Perdue said.
The AFSC, located in Brewster, offers free consultations at which each person’s case can be discussed in detail. They also offer support groups, which, according to Perdue, are not so much places to receive sympathy as opportunities to solve problems.
“What happens in support groups is everyone talks about their solutions,” she said. “Our support groups aren’t just complaining about how hard it is. We’re all challenged by our disease, but how are we handling our challenges?”
Alzheimer’s is a progressive and irreversible brain disorder and the most common cause of dementia. It affects an estimated 10,000 people in Barnstable County. Hundreds of people from across the Cape are expected to gather at Provincetown Town Hall this Sunday to walk to raise money for Perdue’s organization, which she founded with her partner, Melanie Braverman, in 2013.
The organization has been especially important for those living on the Outer Cape, where the population is aging but the available services scarcer than they are in more populous communities. Home care help agencies serving these towns include the Visiting Nurse Association and Elder Services of Cape Cod, but there are a dozen other agencies in the mid-Cape.
“It’s a conundrum when you’re in a rural area and you have companies trying to travel long distances,” Perdue said.
That’s why Perdue and Braverman, who cared for Perdue’s mother when they lived in Provincetown, have developed creative and low-cost solutions to help caregivers.
Some tips are included in a sidebar to this story.
Perdue believes bringing together people who are dealing with the effects of Alzheimer’s disease to share solutions is crucial.
“If all you did was read it in a book, none of this information would work,” Perdue said. “Every case is different.”
Tips for Better Dementia Care
People with Alzheimer’s disease often lose their sense of time. What used to take minutes can take hours. Make appointments in the afternoon.
Due to neurological changes, the peripheral field of vision is diminished. Approaching a person with dementia from the side can totally shock them. Walk toward them head on.
Technology can be a huge challenge. There are “Alzheimer’s phones” with photos of frequently called friends or family placed on large phone buttons, so calls can be placed at the touch of a photo.
Caregivers Support Group, Seashore Point, 2nd and 4th Thursdays, 3-4:30 p.m.
Early Stage/MCI Support Group, Seashore Point, 2nd Thursday, 3-4:30 p.m.
Caregivers Support Group, Dementia Group (run simultaneously), Wellfleet Council on Aging, 2nd Tuesday, 3-4:30 p.m.
Caregivers Support Group, Eastham Council on Aging, 1st and 3rd Thursdays, 10:30 a.m.-12 noon.
Walk for Alzheimer’s of Cape Cod
What: Provincetown Walk for Alzheimer’s. Food by Cosmos Catering, music by the Sound Dunes. (You don’t have to walk to give and you don’t have to give to walk.)
When: Sunday, Oct. 20; registration 11 a.m., walk at noon
Where: Provincetown Town Hall