Agnes Milliner’s butterscotch meringue pie was a highlight of Christmas for her husband and eight children. It was a fixture of their family celebration, a delicious tradition they thought would continue forever. In 1996, the pie was normal, delectable. All was well. In 1997, the pie tasted disgusting. They couldn't even choke it down. Something was very wrong.
Yvonne Wills, now 65, and her siblings noticed other things about their mother that were different. Agnes ran up and down the stairs in her house looking for something, but she couldn’t remember what. She no longer made the gorgeous, complicated quilts Yvonne admired. Normally, Yvonne and her mother would trade bags of books when Yvonne visited, but Agnes didn’t read anymore. She did odd things, like store books in an old, disconnected freezer slated for disposal.
In 1997, at the age of 70, Agnes Milliner was diagnosed with Alzheimer’s disease.
“[Alzheimer’s] came down like a blanket over her,” says Yvonne. “Nothing was the same after.”
Agnes had been sweet and talented with a wide, beautiful smile. She had a great memory, until she couldn’t list all eight of her children. She developed a temper and propensity to cuss at people.
Some things took longer to change. Even when Agnes didn’t recognize the people who were listening to her, she could still play the organ and sing every church and Christmas song she’d known. When she went to church with her husband on Saturday evenings, she could still say the responses correctly. She kept those abilities longer than others, but eventually Alzheimer’s disease stole them too.
The disease rendered Agnes argumentative, mean and paranoid. She was anxious, no longer the person she had been. Everything about her was different. Alzheimer’s had taken over.
Alzheimer’s disease is the most common form of dementia and the sixth leading cause of death in the United States according to the Alzheimer’s Association 2013 Alzheimer’s Disease Facts and Figures. It’s the only cause of death in the top ten with no way to prevent, cure or even slow its progression. Alzheimer’s causes problems with memory, thinking and behavior as nerve cells in the brain malfunction and die. The progressive brain damage eventually impairs an individual’s ability to perform basic bodily functions, and the disease is ultimately fatal.
After Agnes’ diagnosis, Yvonne spent every third weekend with her parents, traveling from Florida to their house in rural Kentucky near Louisville. Every time she visited, she saw less of who her mother used to be.
As soon as Yvonne arrived on a Saturday, she began taking care of her mother. Yvonne colored Agnes’ hair, helped her shower and get dressed, did the laundry, and went to the grocery store. She made sure her father could take a break from his otherwise constant caring for Agnes and run his own errands.
“You had to hit the ground running,” Yvonne says. There was so much to do during those short weekends that seemed much longer.
Yvonne is one of an estimated 2.3 million long-distance caregivers in the country according to the Alzheimer’s Association 2013 Alzheimer’s Disease Facts and Figures. Long-distance caregivers live over an hour away from their care recipient and face unique challenges. While they may spend less time engaged in caregiving activities than local caregivers, long-distance caregivers have nearly double the out-of-pocket expenses and experience greater challenges assessing the care recipient’s condition and needs. They report more difficulty communicating with health care providers and often have higher levels of psychological distress and family discord in their caregiving experience.
Eight years ago, Yvonne took a job at St. Charles Community College (SCC) to be closer to her parents. Now, she only lives a five-hour drive away.
Agnes entered a nursing home soon after Yvonne relocated. Agnes no longer speaks, and doesn’t know who visits her. Still, Yvonne drives to Kentucky once a month. She and her sister Diane care for Agnes how they can. They make sure she has nice clothing and her closet is orderly. They keep seasonal silk flowers in her room and a nice bedspread on her bed. They take her for walks outside the nursing home, pushing her wheelchair as she seems to enjoy the bright colors of the flowers.
Agnes’ past is lost to her, and nothing can bring it back. Yvonne is doing what she can to change the future with the Alzheimer’s Association St. Louis Chapter, the world’s leading voluntary health organization in Alzheimer’s care, support and research. Yvonne captains the SCC Campus Walkers, a team for the St. Charles Walk to End Alzheimer’s on Saturday, September 28.
The Walk to End Alzheimer’s is the nation’s largest event to raise awareness and funds for Alzheimer’s care, support and research. The annual Walk unites communities in a display of combined strength and dedication to fight against the devastating disease and reclaim the future for millions.
As part of fundraising efforts for the SCC Campus Walkers, St. Charles Community College will hold a “Go Purple” day on August 28. For a $5 donation, participants and SCC employees can wear jeans and purple shirts. The first 25 to sign up for the event will get purple shirts, and the rest of the participants will receive purple bracelets. Volunteers from the Alzheimer’s Association St. Louis Chapter will be on campus to distribute information about the disease and about the St. Charles Walk to End Alzheimer’s.
“Yvonne’s drive and the support of the St. Charles Community College team are incredibly inspiring,” says Megan Herman, Outreach Coordinator for the Alzheimer’s Association. “Their fundraising work is vital for our efforts to provide services for local families and advance critically needed Alzheimer’s research.”
An estimated 5.2 million Americans have Alzheimer’s disease. Yvonne Wills has seen personally what the disease can do to an individual and a family. She walks with the hope that someday, the disease can be cured or treated more effectively, and fewer will suffer from the effects of Alzheimer’s.
Yvonne regrets that her children do not know their grandmother for the wonderful, charming person she had been. In a world without Alzheimer’s disease, they would’ve had that privilege. “Please, help us create that world without Alzheimer’s disease,” says Yvonne.
For additional information or support, or to donate to the SCC Campus Walkers, visit www.alz.org/stl or call 1.800.272.3900.
2013 Walk to End Alzheimer’s – St. Charles
Saturday, September 28, 2013
St. Charles Community College
4601 Mid Rivers Mall Drive
Cottleville, MO 63376
Registration: 8 a.m. | Walk: 9 a.m.
Register: 1.800.272.3900 | www.alz.org/stl
Written by Ellie Kincaid, Alzheimer's Association St. Louis Chapter Communications Intern.