Berkshire Alzheimer's Partnership to mark caregivers' struggle on 'Longest Day'
PITTSFIELD >> For caregivers of Alzheimer's patients, days can feel endless.
As the disease progresses, those living with the disease become progressively more dependent on a family member or professional to help them with the simplest of day to day tasks, like remembering to eat, bathe or even move.
"As a community, we don't always have an appreciation for how isolating it is for people who are caregivers," said Lynn Pandell, executive director of Home Care Services of Massachusetts. "Often, during a time they're in so much need for being connected and supported, their world tends to get smaller and smaller as the need for the person in care increases."
To underscore those challenges, members of the Berkshire Alzheimer's Partnership will mark the summer solstice on Monday by participating in "The Longest Day," an awareness and fundraising campaign of the national Alzheimer's Association. The partnership will host "Purple in the Park," a sunrise-to-sunset public display to illustrate the life of a caregiver, when every day feels like the longest day.
The city's circular Park Square will be transformed into a giant clock, with posters marking off the hours. Volunteers from the Berkshire Alzheimer's Partnership — which includes family caregivers, health care professionals, human services providers and others — will be stationed there from sunrise to sunset, 5:15 a.m. to 8:33 p.m.
During that time, community members can stop by to talk with partnership members, pick up free information and resources, write a message or tribute on a purple display flag, or take a break and just listen to the music by Stephen Smith and radio broadcasting by WBRK. Local businesses are encouraged to show support with purple in their windows.
"It's not a happy subject, but we're trying to keep the message hopeful and upbeat," said Karen Gold, who co-chairs the Berkshire Alzheimer's Partnership with Jackie Tripicco.
A short candle-lighting ceremony led by the Rev. Cricket Cooper, pastor of St. Stephen's Episcopal Church, will be held at 7:30 p.m. This will also include remarks by state Rep. Tricia Farley-Bouvier, who will share how, as a young girl, she and her family faced the "long goodbye" after the devastating diagnosis of her mother, Margaret.
Farley-Bouvier's family is not alone in this experience, according to the U.S. Centers for Disease Control and Prevention. A study using 2012 census data found that 10.5 percent of older adults in Berkshire County are living with Alzheimer's or another form of dementia.
It's the sixth leading cause of death in the United States.
"It would be so great," Pandell said, "If everyone just stepped up a little bit and said something to a caregiver like, "I'm heading to the store, could I pick up something for you?" or, "It's a beautiful day, can I sit with so-and-so so you can take a nice walk?""
Gold's own mother was diagnosed with Alzheimer's in 1985.
"Back then, it was not a disease really talked about. There were no resources really available, no memory disorder clinics for diagnosis and treatment. We as a family felt lost, felt isolated and alone. We didn't know where to turn," she said. "It was so awful, I never want anyone to go through it again like we did."
Progress is being made, she said. In addition to raising awareness, the U.S. Senate Appropriations Committee approved earlier this month a $400 million increase in Alzheimer's disease research funding at the National Institutes of Health and included the Health Outcomes, Planning and Education (HOPE) for Alzheimer's Act.
Said Pandell: "The more [caregivers] feel connected and understood, the happier and more supported they'll feel."
If you go ...
What: "Purple in the Park: The Longest Day," an event to raise awareness and funds for caregivers of people who have Alzheimer's disease or other forms of dementia. The event is free and open to the public.
When: 5:15 a.m. to 8:33 p.m. Monday.
Where: Park Square, Pittsfield
Information: Berkshire Alzheimer's Partnership on Facebook or email info@BAPartners.org
How to help: Donations, which support families and research, can be made on-site, or at act.alz.org/goto/PurpleInThePark.
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