If there is one thing Pinehurst, N.C. is known for it is golf, having hosted a number of prestigious golf tournaments including U.S. Open Championships, the U.S. Women’s Open, a PGA Championship and the Ryder Cup. Pinehurst resident, Marge Swierz remembers her husband John as a “very calm, relaxed person… he was fun to be with.” They were married for 40 years and had 3 children together. John was an avid golfer, “at home on the golf course.” When Marge thinks about her marriage, she simply refers to herself as “lucky.”
The family first started seeing something was wrong when John began to have troubles sleeping, becoming anxious towards the evening. “Nobody picked up on the brain connection,” Marge explained. He went through a range of anti-depressants. Even Marge, who is a nurse, did not consider dementia for a long time. John was eventually diagnosed with Younger-onset Alzheimer’s in 2007.
Marge remembers many sleepless nights with John as he progressed through his illness. Many nights John would wake up at 2 a.m. with racing thoughts and an unsettled body. They would pack up and go circle the church parking lot, often for hours, rain or shine, until he finally calmed down. Marge paced with him the whole time. “I always wanted to treat him with respect,” she explains. “He was still my husband.” “The heartbreaking thing,” Marge recalls, “is that he was conscious of this anxiety the whole time. He kept saying, ‘Hun, I don’t know why this is happening to me. I can’t control myself’.”
As they paced through the night, Marge made a decision early on to involve her children in their struggles. On particularly bad nights, they would call one (or sometimes several) of their children to talk their dad into a calmer state. Marge admits that this was “the best gift.” As they reminisced on the phone about “that crazy golf score… or that time you chose the wrong club,” John’s heart rate would slow and he would finally be able to silence his mind. “Just the sound of their voice was miraculously able to focus him.” Their children would take turns visiting their father through his illness to take him golfing or just spend time laughing. Marge wanted John to know that “this is not all that he was… he’s still here and he needs us.” Her family took care to separate the disease’s behaviors from her husband’s reality.
Marge connected with the Alzheimer’s Association through their local neuropsychologist. She attended support groups and education conferences. They participated in their first Walk to End Alzheimer’s® in 2014. Even when John passed away in July of 2017, Marge and her family did not step back. To this date, Marge has attended Walks in at least four different cities, making appearances at walks as far away as D.C. with her children. Taking into account her husband’s journey, “I don’t mind walking!”
Marge shares that she has a new granddaughter that is two months old and recalls speaking to John when they found out they would be grandparents. “John was so anxious that he wouldn’t be able to hold his grandson… that he might drop him.” That grandson is now two and a half years old and is growing up in a world without John. Namely due to her growing family, recent Walk fundraising has changed a bit this year. Her emails to friends and family have taken on a different tone. She laughs saying “at first I didn’t want to disturb anybody… now I just don’t really care about that!” Her team “For My Husband John” has raised over $1,250 already for Walk to End Alzheimer’s – Moore County taking place on September 26.
Marge attended the 2019 Alzheimer’s Advocacy Forum to share her story with her legislators in Congress. When advocating, Marge focuses on “humanizing this disease… this can happen to anybody.” Marge goes further to say that “we have to fund research. This [disease] is going to be overwhelming [to our country] in the future.” She takes this same approach on walk day, sharing that her favorite element is the flower garden. This “mass color visual” fuels her family’s fight, thinking about “all the folks we are trying to remember.” Marge loves talking to other walkers to learn about their loved ones and to share stories of her golf-loving husband John.
INSPIRED BY MARGE AND JOHN’S STORY AND READY TO TAKE YOUR OWN SWING AT RAISING FUNDS TO FIGHT ALZHEIMER’S AND ALL OTHER DEMENTIAS? Start your own team or join an existing team for one of our nineteen North Carolina walks:
The world may look a little different right now, but one thing hasn’t changed: our commitment to ending Alzheimer’s. This year, Walk to End Alzheimer’s® is everywhere — on every sidewalk, track and trail. Your health and safety are our top priorities. We won’t have a large in-person gathering — instead, we invite you to walk in small teams of friends and family while others in your community do the same. Because we are all still walking and fundraising for the same thing: a world without Alzheimer’s and all other dementia.
When you participate in the Alzheimer’s Association Walk to End Alzheimer’s®, you’re part of a community that cares — and that community, which starts in your backyard and stretches across the country, has never needed us more. With the dollars we raise, the Alzheimer’s Association® can provide care and support during these uncertain times while advancing critical research toward methods of treatment and prevention.
Register today at alz.org/walk and be the first to know about Walk in your area.
2020 WALK DATES
Alamance County – 9.26.20
Asheville – 10.10.20
Charlotte – 10.17.20
Fayetteville – 10.31.20
Gaston/Cleveland/Lincoln – 9.12.20
Guilford County – 10.17.20
Henderson County – 9.26.20
Hickory – 10.24.20
Iredell County – 10.10.20
Jacksonville – 10.17.20
Moore County – 9.26.20
Mount Airy – 9.12.20
New Bern – 10.25.20
North Wilkesboro – 10.10.20
Robeson County – 10.24.20
Rowan-Cabarrus – 10.24.20
Triangle (Raleigh-Durham) – 10.10.20
Wilmington – 11.7.20
Winston-Salem – 10.3.20
Alzheimer's Association North Carolina Blog 