Townwide event brings awareness to Alzheimer’s
About five years ago, Susan Helstein of Darien got diagnosed with Alzheimer’s disease. There was no one else with Alzheimer’s in her family, according to her husband Dick Helstein, “so it was a total surprise to us to have it happen. We were just floored by it,”
Since his wife’s diagnosis, Helstein has made it his mission to bring more public awareness to the disease. On Saturday morning, June 22, he was one of a group of more than a dozen volunteers wearing purple shirts at the ribbon cutting ceremony for Darien’s Paint the Town Purple event, held at Neilsen’s Florist on the Post Road.
June is Alzheimer’s & Brain Awareness Month, whose purpose is to bring awareness and attention to this disease, which has no cure.
More than 30 businesses and organizations in town participated in the event. Stations were set up throughout town with information tables, purple displays, purple drinks and more.
At the ribbon cutting, Pamela Payne, chairman of the event, shared how Alzheimer’s disease has affected her family. Her father, Dr. Stephen D. Messner, was head of finance and director of the Center for Real Estate at the University of Connecticut, as well as acting dean.
About five years ago, when he was 77, Payne started receiving distressed calls from “my Mom in Florida, saying that ‘Dad just wasn’t himself.’ He was doing and saying things that were uncharacteristic,” she said. “It turned out that he had a stroke in his brain.”
For the next four years, Payne’s family watched as her father deteriorated. He was placed in a “memory care community with the support and care he needed, and it completely turned things around for him. He was able to spend the last few years fully engaged until the very end,” she said.
Payne said her experience with her father made her realize that “through my pain came my purpose, and that raising awareness and funding for a cure is the very best way to honor my father.”
To raise money toward ending Alzheimer’s, Payne encouraged everyone to join the walk team “Darien Paints the Town Purple” and participate in the Fairfield County Walk to End Alzheimer’s at Calf Pasture Beach in Norwalk on Oct. 13.
At the ribbon cutting ceremony, State Rep. Terrie Wood, who represents Darien and Rowayton, gave some recent statistics about Alzheimer’s.
It’s the sixth leading cause of death in the U.S. Between 2000 and 2017, deaths from Alzheimer’s and dementia increased 145 percent. One in three seniors dies with Alzheimer’s or dementia.
She added that “Only 16 percent of seniors receive cognitive assessments, and that’s what we can absolutely work on changing.”
Wood said she has been working on a Senate bill that is now awaiting the governor’s signature. The bill “would require continuing education requirements for physicians and nurse practitioners for dementia and Alzheimer’s to keep up to speed on the latest practices, the latest developments, and early identification and early remediation,” she said.
Darien First Selectman Jayme Stevenson said that turning one’s own personal issues into passion and then giving back “is really what our community is all about.”
Stevenson said she very much appreciates “the efforts in Hartford to really bring this issue forward, because as our population ages — it will affect us more and more every day.”
Not only should “we be working on responding to this crisis, but let’s figure out how to end the crisis,” she added
All of Darien’s first responders will be trained in Azheimer’s and dementia awareness and education.
Darien offers two senior living communities: Maplewood Senior Living and The Residence at Selleck’s Woods, which both offer “secure and supportive Memory Care units with many activities to keep residents engaged,” Payne told The Darien Times.
When Helstein’s wife was first diagnosed, the family contacted the Alzheimer’s Association and got some tips on how to cope with the disease, which includes “staying active, staying focused, and trying to live each day as special as you can,” he said. “And that’s what we did.”
“My wife took up tap dance, violin, German — all these things that would exercise her brain and exercise her heart, which is just as important,” Helstein said. “We walked together all throughout Darien all the time and took trips.”
As she became socially less active, the Helsteins joined a group through the Alzheimer’s Association of nine couples who were going through the same experience the Helsteins were. It’s called “GAP,” and stands for Giving Alzheimer’s Purpose.
All the group members have since became very close. “We trust each other and love each other,” he said. “This has become a group that can meet together and not feel awkward in any way.”
Darien resident Robin Roscillo, who has been a volunteer with Alzheimer’s awareness events for years, said she has lost both parents to the disease.
In 2018, her younger sister was diagnosed with early onset Alzheimer’s at the age of 62.
“We were so familiar with all her symptoms because we had been doing it for almost 20 years,” Roscillo said.
Yet, she added that early onset is “incredibly different than older onset. So, we’re learning it all over again. It’s an every day struggle. Every day something new happens.”
Fast facts on Alzheimer’s disease
Source: Alzheimer’s Association
- An estimated 5.8 million Americans of all ages have Alzheimer’s.
- The cost of caring for those with Alzheimer’s and other dementias is estimated to total $290 billion.
- More than 16 million Americans provide unpaid care for people with Alzheimer’s or other dementias.
- Alzheimer’s kills more than breast cancer and prostate cancer combined.
The Alzheimer’s Association’s 24-7 helpline is 1-800-272-3900.