Bonded by memory, walkers fighting Alzheimer’s
Saturday’s event one of three planned in So. Md.
Every 66 seconds, an American develops Alzheimer’s disease, a progressive, non-curable brain disorder that gradually destroys a person’s memory and thinking skills.
The disease particularly affects the older population, but its ripple effect often covers generations within families and circles of friends.
The Walk to End Alzheimer’s is a nationwide event organized by the Alzheimer’s Association to raise awareness and funds to support the organization’s support and research missions. Residents in this area can participate in the walk this Saturday in Solomons, or Oxon Hill on Sept. 23, or La Plata on Sept. 30. Tomorrow’s walk begins at 10 a.m. at Asbury Solomons Retirement Community. Registration starts at 8:30 a.m., and there will be an opening ceremony at 9:30.
Mary Ann Bean’s 9-year-old grandson, Randy Bean, still remembers Margaret Cooper, his
great-grandmother. Cooper lived with Alzheimer’s for 12 years before she died in 2014.
Starting when he was a toddler in a stroller, Randy has participate in the walk with Mary Ann every year. In recent years, he would take the purple promise flower home and put it in his home yard in California.
Her mother didn’t know who Randy was, Mary Ann said. But people with her conditions love babies and “she loved to see his face.”
Although Cooper couldn’t remember, her family’s memory of her continues.
Mary Ann’s son, Joe Bean, for example, remembers Cooper squirting icing into his mouth when she decorated cakes. He was about 10 years old and “he thought it was the coolest thing,” Mary Ann said.
The experience of watching a loved one losing his or her memory is beyond devastating.
“Your parent is physically there, but mentally they are way back in time,” Mary Ann said.
Her friend, Michelle Johnson of Great Mills, had a similar experience with her own mother.
“Losing a mother was never easy, but losing her before she died was even worse,” Johnson said. “She did not know me at the end; she did not recognize me.”
Johnson’s mother, Carrie Abrams, died of a type of dementia in 2002.
What bothered Johnson the most was that toward the end her mother “was alone and afraid because she didn’t know anyone anymore,” she said, chok- ing up as she spoke. “My mother felt alone, but she wasn’t.”
Mary Ann Bean and Johnson wear their Alzheimer’s Walk T-shirts every Monday, Wednesday and Friday — their gym days.
“We are walking advertisements,” Johnson said. “People ask us questions all the time.”
On Wednesday, a couple they met at Panera Bread asked them about the shirt. After learning about the walk that will be held in Solomons Saturday, Bean said the husband, whose mother has Alzheimer’s, wanted to know if he could take his mother to the walk. They told him that he could and directed him to the association’s website.
The walk in Solomons last year saw 361 walkers and raised more than $65,000, according to Dennis Poremski, director of wellness at Asbury Solomons and the hosting coordinator of the event.
Poremski said over the years he saw that the issue has come into public consciousness more than before.
“We are starting to realize how serious it is,” he said, noting that the impacts on caregivers, communities, health care systems and the society at large have been huge.
Sheila Zattau of La Plata and her sister, Pennie Drinkard, of Fort Washington have seen the size of the walk’s crowd increase over the years.
On one hand, they are encouraged to see the increased support and commitment for the cause. On the other hand, they realize that more and more people are affected by it.
Their father, Neal “Handsome” Drinkard, was diagnosed with early onset Alzheimer’s in his mid-50s. He died in 2010 at the age of 72 after living with the disease for about 15 years.
“My dad was always telling everybody to call him ‘Handsome,’” Drinkard said with a laugh. “He would say: ‘ My name is Neal. But you can call me ‘Handsome.’”
Zattau’s first walk was only about her father. Later, the sisters and their families met people with similar stories and sometimes saw the same group of people from year to year.
“As years go by, it’s not just a personal thing for me anymore,” Zattau said.
Nowadays, everybody probably knew or lost someone to Alzheimer’s, or both, Drinkard said. The walk “gives people that sense of community” and tells the caregivers that they are not alone, she said.
Jeanette Finley, who lives in Asbury Solomons and facilitates a caregiver support group in Prince Frederick, sees the impact of Alzheimer’s and other forms of dementia every day.
About a couple of years ago, the Calvert library in Prince Frederick hosted a screening of “Still Alice,” a film chronicling a renowned linguistics professor’s journey after she was diagnosed with Alzheimer’s.
“There was just this interest and a sense of lack of support for caregivers who are dealing with folks with dementia,” she said.
As a member of Calvert’s commission on aging, Finley said she saw “a crying need” for more support for those who have the disease and the caregivers.
The walk is important, she said, because it raises money for the association which goes to fund research and advocacy for the cause.
“It’s not just a stroll in the park,” Finley said. “It has a purpose.”
Other than participating in the walk, some are also raising funds in their own way.
Leilani McAdams of Fort Washington has organized, hosted and performed in an annual benefit concert called “A Gift to Remember” since 2014 in honor of her grandmother Allie Mae McAdams who died of Alzheimer’s about two years ago.
“It’s a way that I can contribute to the cause,” the 15-year-old said. It’s also her way to “give back to those who have lost their memories,” she said.
The idea of the starting the concert originated from an essay Leilani McAdams wrote when she was in the sixth grade four years ago. Asked to write about a cause and what they could do to help advancing the cause, she wrote about starting a benefit concert to raise money to fight against Alzheimer’s.
When she brought the essay home, her father Steven McAdams said he was “surprised that she even thought of it.”
Instead of seeing it as a mere class assignment, she took action and made it happen, her father said. “It was empowering,” and he was “very proud.”
On walk day, walkers can pick a color that represents the person’s connection to the disease. Yellow means someone is supporting or caring for someone with Alzheimer’s. Purple suggests someone has lost a loved one to the disease.
After losing Frances Rosch over the summer to the disease, the Rosch family will have to change from picking yellow to purple.
“It will be hard,” said Sarah Rosch, Frances Rosch’s granddaughter. “I think it will be emotional for me.”
Before she passed away, Frances Rosch participated in the walk with her family in the past two years. Sarah Rosch said to continue the walk is important because the cause is bigger than her family.
“Even though it’s not going to be benefit Granny,” the money raised may fund research and create resources that could help others, she said.
The walk is a one-day event. But the impact of the disease continues every second of every single day for those affected by it.
“We don’t want people to forget; it’s an all year thing,” Mary Ann Bean said.
Before her mother passed away, Mary Ann talked to her every day. After Cooper moved into the St. Mary’s nursing center, she went to visit her every day. To this day, there were moments she would think to herself that it’s time “to call Mom or go see Mom,” only to be followed with the realization that her mother is not there anymore.
“I really miss my mom; I feel the loss of her; I also feel the strength of her,” Mary Ann said, describing how she felt when she walked amongst the crowd at previous events.
For her, the eventual goal is to find a cure so no one else has to go through what she went through — her own mother not knowing who she was.
Her friend Johnson said the walk made her feel less fearful. Her family on both sides have been diagnosed with Alzheimer’s and other types of dementia, and she was worried that it would happen to her.
After seeing the increasing support and awareness centered on the disease, the walk says to her that “this is not my future,” she said.
For more information on the walk, visit https://act.alz.org/site/SPageServer?pagename=walk_ homepage.
Sarah Rosch, left, Elayne Rosch, Frances “Granny” Rosch, Rick Rosch and Kathryn Phillips walk during the Walk to End Alzheimer’s event in Solomons in 2015. Frances Rosch died earlier this summer.