Cooking Up a Recipe for Hope After Alzheimer’s

Some of North Carolinian Wendy Russell’s earliest memories involve her mama Gwendolyn in the kitchen. “When we were preschoolers, every Easter she would bake this rabbit cake with jelly beans for eyes, black licorice candy for whiskers and a white coconut body,” remembers Wendy. She also baked cinnamon rolls from scratch that would be requested by many family members. Everything she cooked was measured by “just a pinch of that”, so even now it is hard to exactly replicate her recipes. This simple act of caring for her family extended well beyond family life as she was very passionate about the kitchen ministry at her church, Epworth United Methodist, as well.

Beyond the kitchen, Gwendolyn Saunders Bryson Moten is remembered as being “very fiesty, always speaking her mind.” She sang in the church choir, and loved Christmas so much that all of her presents were wrapped and ready by October. Gwendolyn even fought breast cancer in her 60s, cementing her fighting spirit and resiliency. In hindsight, Wendy sees that her stepfather helped her mama with memory issues by telling Gwendolyn to “exercise your mind” and forgo the written reminders. Gwendolyn had started writing everything down to help her remember simple tasks. She began requesting reassurance in the car about directions, eventually giving up driving on her own accord. When she began asking the same questions repeatedly and stopped enjoying cooking quite as much, her family knew something was wrong.

The family had Gwendolyn’s memory tested when they became concerned. “We just waited and held our breath during the test while she was drawing the clocks and such,” shares Wendy. “It is just such a devastating disease.” The neurologist determined that Gwendolyn was in the early stages of Alzheimer’s. She progressed through the disease slowly, but Wendy remembers the first moments after the diagnosis were the worst. “The end stage [of Alzheimer’s] is like a vegetable. I didn’t want Mama to be like this. [I kept thinking] ‘How is this going to end? If you’ve never been there you just don’t understand. She wasn’t the same,” Wendy remembers thinking.

Gwendolyn was a caregiver for her husband who was a dialysis patient until his passing. “After his death, the void in Mama’s life was an eye-opener for us. We noticed Mama’s forgetfulness and asking the same questions over and over. Thus began our Alzheimer’s caregiving journey for Mama,” explained Wendy. They began sharing care, with outside help during the day, Wendy’s in-town siblings on week nights, and Wendy and her out-of-town sibling heading home every weekend. This shared family care lasted nine years. Gwendolyn’s children were blessed to keep her home and care for her there without interrupting her life as much as possible. “It is important to meet the person with Alzheimer’s where they are, not where you want them to be,” advises Wendy. “It has got to be hard on [the person with Alzheimer’s]. They want to say something and are just not able.” Gwendolyn was in and out of hospice care towards the end of her life, unable to communicate or move herself, and eventually passed in January 2012 at the age of 84 years old.

In the same year that Wendy’s mama passed, she went to a seminar on memory that her sleep specialist recommended to her. The Walk to End Alzheimer’s was shared as a way to “support other people going through the same”. Wendy was immediately interested in this community aspect. She had been reading everything she could including The 36 Hour Day by Nancy L. Mace and Peter V. Rabins. She even recommended it to friends going through similar journeys and jumped at the opportunity to connect with a wider community of caregivers. “Everyone’s experience is different,” she cautions, “but it’s a terminal disease. My husband asked me once which I thought was worse — cancer or Alzheimer’s. My response was ‘Alzheimer’s’ because with cancer you can get treatments and have hope. With Alzheimer’s there’s no cure or hope.” However, Wendy’s mind was changed with the announcement of the new Alzheimer’s treatment recently approved. “We now have some HOPE,” Wendy says.

These days, Wendy walks in the Gaston/Cleveland/Lincoln Walk with the support of her full community. Her mama’s brothers and family friends join her on the Walk while other family members watching from the sideline to cheer her on through the finish line. She even walked last year in her neighborhood in the midst of the pandemic. Wendy inspires others to sponsor her journey mostly through direct personal emails sharing her mama’s story. Gwendolyn’s story resonates so much with her network that Wendy is already at 176% of her fundraising goal — over $1,700, and the Gaston/Cleveland/Lincoln Walk doesn’t even take place until October 9! Her top donors are a mix of memorials to Gwendolyn and in honor/memory of other community members. When she fundraises, Wendy wishes to support the full mission of the Alzheimer’s Association, acknowledging that each pillar is equally important. “You can’t have one part without the other. Care and support are essential, but so are research and education. None of this is easy.”

When thinking about Walk day, Wendy shares that the flower ceremony is her absolute favorite moment. She loves hearing about other caregivers’ journeys, even sharing her own as the 2017 representative for the Purple flower (an individual who has lost someone to the disease). The representation of the white flower (search for first survivor of Alzheimer’s) is most powerful to her, thinking about the future. “This devastating disease affects the entire family, not just the person with the disease. Being a caregiver is difficult. You must have prayer, patience, kindness, and humor,” shares Wendy. Following in Gwendolyn’s footsteps, Wendy continues to care for many in her community. Maybe not with fresh baked cinnamon rolls, but with a listening ear and a shared story. Sometimes that can be even more powerful.

LIKE WENDY, WE ALL HAVE A REASON TO FIGHT FOR A WORLD WITHOUT ALZHEIMER’S DISEASE. Join your local Walk to End Alzheimer’s today.

The Alzheimer’s Association hosts 17 walks across North Carolina. The Alzheimer’s Association Walk to End Alzheimer’s is the world’s largest event to raise awareness and funds for Alzheimer’s care, support and research. Since 1989, the Alzheimer’s Association® mobilized millions of Americans in the Alzheimer’s Association Memory Walk®; now the Alzheimer’s Association is continuing to lead the way with Walk to End Alzheimer’s. Together, we can end Alzheimer’s.

We’re moving forward with plans to host the Alzheimer’s Association Walk to End Alzheimer’s® in person this fall. We are planning every Walk with the health and safety of our constituents, staff and volunteers as our top priorities. All events will implement safety protocols including physical distancing, masks (where required), contactless registration, hand sanitizing stations and more. We will continue to closely monitor Centers for Disease Control and Prevention (CDC), state and local guidelines to ensure Walk events adhere to recommendations and are safe for attendees, as well as offer options to participate online and in your neighborhood.

2021 NORTH CAROLINA WALK DATES

Alamance County – 9.25.21
Asheville – 10.9.21
Charlotte – 10.23.21
Fayetteville – 10.30.21
Gaston/Cleveland/Lincoln – 10.9.21
Guilford County – 10.16.21
Henderson County – 9.25.21
Hickory – 10.31.21
Iredell County – 9.25.21
Jacksonville – 10.16.21
Moore County – 9.25.21
Mount Airy – 9.18.21
New Bern – 10.23.21
Rowan-Cabarrus – 10.30.21
Triangle – 10.9.21
Wilmington – 11.6.21
Winston-Salem – 11.6.21

Add Your Flower to the Fight to End Alzheimer’s.

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