By Megan Gearhart
When Katie Mullen looks at the photograph of her mother holding her youngest daughter, Kasia, as a newborn, the image is bittersweet.
She still sees the woman who taught her how to cook without measuring anything and the tender-hearted master gardener who diligently cared for living things big and small on her farm in Troy.
But Mullen also sees the changes that Alzheimer’s Disease had wrought — the countless ways in which progressive memory loss had robbed her mother of her quality of life, from forgetting how to make her famous fried chicken to needing help remembering her own birthday.
The disease brought immense changes to Mullen’s life, too. Between struggling to keep expired food out of her mother’s pantry and scraping together enough money for the $900 medications needed to manage her mother’s symptoms, Mullen recalls how being a caregiver to an Alzheimer’s patient was an isolating experience that often left her in tears.
“It was a very dark time in my life, and I was going through it alone,” Mullen said. “It’s a slow deterioration and the quality of life just becomes so bad. I always wondered how much Mom could understand about what was going on with her, and how much she was suffering.”
After a six-year battle with Alzheimer’s, Anne Bartoszkiewicz died only a few months after that photo with her granddaughter was taken in 2015.
But last year, while driving around Troy, Mullen and her oldest daughter, Raylee, saw something that gave them hope: yard signs announcing the first-ever Walk to End Alzheimer’s event in Lincoln County.
Right away, Mullen and her daughter devoted themselves to the cause, starting a Walk team and volunteering to serve on the event’s planning committee. ‘My daughter started selling bracelets door to door to raise money,” Mullen said. “We raised $300 in one month.”
Mullen said that besides providing a positive outlet for her grief, becoming involved in the Alzheimer’s Association gave her family an opportunity to connect with other Alzheimer’s caregivers who shared a common bond.
“I can’t tell you many times somebody has stopped me while I was wearing my Walk to End Alzheimer’s shirt just to tell me their story about a family member who had been diagnosed.”
According to the Alzheimer’s Association, an estimated five million Americans are currently living with Alzheimer’s, and there is still no cure.
The most common form of dementia, Alzheimer’s destroys neurons in the brain that are responsible for thoughts, memories, and feelings, and it is the sixth leading cause of death in the U.S.
The inaugural Walk to End Alzheimer’s, held at Fairground Park on Oct. 15 last year, was a tremendous success, Mullen said, topping its national goal to raise a total of $34,070 for the Alzheimer’s Association. The funds support research on Alzheimer’s and other memory loss diseases, with the aim of one day finding a cure. The funds also go to support of family members caring for loved ones with the disease.
Mullen said that establishing better support for caregivers, whose lives are equally thrown into chaos and uncertainty after an Alzheimer’s diagnosis, is one of the primary goals of Walk organizers this year.
“Things like respite time, where someone will come in and relieve them so that they can just go run an errand or go to the doctor, and support groups, are so important, because it helps them not to feel so alone,” Mullen said.
Recently, a group of people with loved ones living at the Arbors, a memory care facility in Troy, formed the Arbors Family Council to provide a network of support and advocacy for Alzheimer’s and dementia patients and their families. The group sponsored a team at last year’s Walk to End Alzheimer’s and raised more than $9,025.
Mullen said she is hoping that Lincoln County will soon be able to offer an Alzheimer’s care consultant to the area who could educate caregivers and help them find ways to cope with the changes the disease brings to their lives.
This year, the Troy Walk to End Alzheimer’s will take place at Troy Middle School on West College Street, with both a one-mile and a three-mile walk option.
There will be a live band, free food, guest appearances by the St. Louis Ambush soccer team and a small memorial garden where people can register to place a sign in honor of their loved one.
Knowing how an Alzheimer’s Disease diagnosis affects family members of all ages, 12-year-old Raylee will be setting up a kids Corner at the event, with activities and games for young participants.
Those interested in participating in the walk can register online now or on race day. For more information or to sign up for the Troy Walk to End Alzheimer’s, visit the Alzheimer’s Association website.