“She was very stoic in nature and quiet which is very unlike me,” chuckles June Ward about her mother Pauline. “Mom would much rather help her dad in the garden than spend time with her mom learning how to sew. She was very much a tomboy.” Pauline Plemmons Fowler was born in 1923, the daughter of a farmer and learned how to live off the land in Madison County, which remains a rural part of North Carolina. Pauline had an incredible work ethic — not only was she a factory worker and the breadwinner for the family due to her husband’s disability, she was also his primary caregiver and raised their six children.
With what little free time she did have, Pauline grew a garden and canned the produce from it. Skills she had learned from her parents. Perhaps her favorite canning project each year was making jam. “Mama would love to pick blackberries; it was like her favorite thing,” offered June. “They become ripe around here about the the Fourth of July.”
The Fowler family moved to the mountain town of Swannanoa, North Carolina in 1965 and here they grew up and even raised families of their own. Decades later, when Pauline’s children began to notice changes to their mother’s personality, she was in her early 60’s. Subsequently, Pauline was diagnosed with Alzheimer’s disease and lived with it for 15 years until her passing in 2001.
“I’ll never forget that feeling of walking into Mama’s house and seeing my 3-year-old son playing with a butcher knife,” begins daughter Susie Gilliam. “We had observed her behavior was noticeably different that Christmas and she was forgetting to eat.” Sisters — Susie, June, and Karen Douthitt — agreed that while they remember their grandmother [their mom’s mom] having Alzheimer’s disease or dementia, it looked quite different on their mom.
June, Karen, Susie and their three other siblings knew they would each need to take a role in helping provide around-the-clock care for their mother. Other than prescribing medication, to help their mom sleep through the night, the family doesn’t recall many resources being available during that time. In 1990, the family made the decision to move their mother to a long term care community. “Of course that day [we moved her in], mama had clarity,” tearfully explained Karen. “My brother shared later that telling their mother we were moving her into the facility was the second hardest thing he ever had to do in his life. Even upon telling her, Mama replied, ‘Well, if that’s what you think is best, you know.’ So even there she was graceful.” While the waves of guilt crested and sometimes crashed over the Fowler family’s emotions, they eventually accepted the fact that their mom was in the safest place to keep her from wandering and potentially doing harm to herself.
Years later, Karen moved to South Dakota and began volunteering for the Alzheimer’s Association. The Fowlers had already lost their grandmother, mother and uncle to Alzheimer’s, and their aunt was in the early stages of the disease. Then their cousin began exhibiting symptoms, the first member of the sibling’s generation to be diagnosed with younger-onset Alzheimer’s.
Karen later joined the Alzheimer’s Association’s TrialMatchⓇ program and learned about the Dominantly Inherited Alzheimer’s Network (DIAN), which works to identify families that carry gene mutations for younger-onset Alzheimer’s disease and involve them in drug and observational studies. Dominantly inherited means one will develop Alzheimer’s disease, it is just a matter of when.
NPR reporter Jon Hamilton first met the family in 2015 at the first-ever DIAN conference, and in 2022, he wrote a story on the sisters’ journey of discovery.
Photo by Juan Diego Reyes for NPR
Karen opted in for the testing but discovered she tested negative for carrying the gene. Susie and June also chose to be tested; however, they both received news that they were positive for carrying the gene mutation. This means they will develop Alzheimer’s disease – the question is when.
As shared in their NPR Story:
“The next morning I was wallowing in self pity, and what I’m going to miss,” Susie says. “I’m going to miss birthdays, and my grandchildren won’t know me as a healthy person.
“But then on the front porch, in the mountains of western North Carolina, I’m rocking and there’s this single cloud in a Carolina blue sky, and I was praying for Him to take my worries away. And I’m sitting there rocking and this single cloud thins and thins and thins, and then, poof, it’s gone – and with it my worries.”
A Family (& Friends) Affair
Once they knew of their family’s genetic predisposition to Alzheimer’s, the Fowlers wanted to do everything within their power to stop it.
“The thing I’m proudest about us is, that we could have buried our heads in the sand and we chose not to,” asserts Karen. All three sisters readily admit that giving someone your blood, and them telling you if you’re going to have Alzheimer’s in your future or not, is a huge decision to make. Three of the six siblings elected to be tested. Collectively they have embraced whatever their futures hold and are not backing down.
The sisters added, “We have taken these lemons in life and added the sweetness of our family’s tenacity into a lemonade of encouragement.”
While living in South Dakota, Karen learned about The Longest Day, and with the help of a great group of volunteers, created a golf marathon fundraiser for Alzheimer’s where participants played golf from sunrise to sunset to benefit the Alzheimer’s Association. In an effort to develop a healthy family competition, Karen challenged her sisters to create their own fundraiser for The Longest Day in Asheville. Under the auspices of a fundraising activity doing something you love, Susie and three of her sisters began making jam and canning it, just like their mom used to do. They recruited friends and family members to join their team, ultimately recruiting 14 people the first year and calling themselves the Mountain Jammers.
They sold cans of jam year-round, and asked for donations of fruit, sugar or jars, with proceeds from each can of jam going toward their fundraising team for The Longest Day. During their first year in 2016, they raised more than $10,000. Karen moved back to North Carolina in 2018 to be with her family and they expanded the jam fundraising operations through a special event called, Jamfest. In addition to selling jams, the Mountain Jammers sold hotdogs, baked goods, hosted a silent auction, played live music, with all of the funds raised benefiting The Longest Day. They even managed to figure out a way to creatively and safely keep up with their fundraising during the pandemic through virtual concerts, jam sales, online auctions and even video game streaming. And now the Mountain Jammers’ 2024 goal is another $15,000.
This broad, but tight knit group of friends and family have acted as fundraisers, volunteers and donors to Association chapters in the Midwest and here in North Carolina. Their involvement has included conducting their own fundraising activities — to leading teams for Walk to End Alzheimer’s — to being active committee members for the Association. To date, the Fowler family has raised an estimated $150,000 to move our mission forward and has no plans to stop these activities before a cure is found.
Because of their efforts, the Fowler Family and Friends are being awarded this spring with the Alzheimer’s Association – Western Carolina Chapter’s 2024 Award of Excellence Honorees, recognizing their outstanding efforts in the fight against Alzheimer’s disease. The family will receive this honor at the Charlotte Memory Gala on May 18, 2024.
Join the Fowler Family and other influential community and business leaders and enjoy a wonderful event to celebrate the lives of loved ones impacted by dementia and raise funds to underwrite the Alzheimer’s Association’s support, education, advocacy and research initiatives.
You will enjoy an elegant, black-tie optional evening at uptown’s The Westin Charlotte that features a welcome reception, seated dinner, powerful mission moments, auction, as well as, dancing and live entertainment.
CHARLOTTE MEMORY GALA
Saturday, May 18, 2024
6:00-11:00 p.m.
The Westin Charlotte
There are different options available to join us for the evening. In order to secure prime seating, a purchase by the end of February is recommended.
Special Pricing for Young Professionals (YPs): A limited number of tickets/tables are available at a young professional rate for individuals 35 years or younger. The deadline in which to secure YP seating is February 28, 2024. Please contact Sally Kay sfkay@alz.org or (980) 498-7733 for details.
Alzheimer's Association North Carolina Blog 
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