Annual Walk to End Alzheimer's set for Sept. 17

On Sept. 17, for the 20th year, the Alzheimer's Association will hold a Walk to End Alzheimer's at Cape County Park North. Registration begins at 8 a.m., and the walk around the Cape County Park Lake begins at 9 a.m. Between 600 and 700 people are expected to turn out for the event.

Though many participate by joining a team, it's not necessary to be on a team to join in the walk. Individuals who donate $100 receive a T-shirt, but there is no cost to participate, and anyone is welcome to attend. The association uses the walk to raise awareness and let people know the Alzheimer's Association is there to help them, in addition to raising funds. Last year's Walk to End Alzheimer's raised $85,000, and this year the goal is $100,000.

Stephanie Rohlfs-Young, whose family has been involved in the event since its inception, is vice president of the Alzheimer's Association of St. Louis. She grew up in Jackson and is a team captain again this year. Rohlfs-Young says the event holds special meaning for her and her family, because both her grandfather, J.M. Bollheimer, and grandmother, Lois Bollheimer, suffered from the illness.

She says her grandmother's journey with Alzheimer's was the longest and that is, in part, because it took a while for the doctors to arrive at the right diagnosis. Only about 45 percent of people get the diagnosis, because it's so hard to pinpoint, Rohlfs-Young says. Diagnosing Alzheimer's is process of elimination.

"There's no blood test," she says. "You must have an ongoing track of behavior. It's more of an art than a science."

The 2015 Walk to End Alzheimer's in Cape Girardeau. (Photo courtesy of the Alzheimer's Association)

What makes it even more difficult is that family members tend to downplay a person's symptoms, and often overstate how well the individual is doing. Rohlfs-Young attributes this to denial, because people often don't want to accept that their loved one has a progressive, terminal illness with no cure.

"We don't currently have a survivor," Rohlfs-Young says. "There's no preventative measure."

Tracey Akers, whose family business, Ozarc Gas Equipment & Supply Inc., is a presenting sponsor of the Walk to End Alzheimer's for the second time, says her grandmother, Naomi Garner, and aunt, Pamela Miller, both died of the disease. It is one of the reasons the family business champions the cause.

Garner was the matriarch of the company and continued to work as she began to show symptoms of Alzheimer's.

"I noticed her personality change," Akers says. "She was always so generous and kind, but she became not as happy and laughable as she had always been."

Akers says her grandmother began exhibiting signs of confusion, like leaving home to go to the grocery store, but ending up somewhere different and not remembering her original destination.

"Seeing 'the lights go out,' that's the hardest part," Akers says of her grandmother's continued slow mental decline. "It's a very, very long goodbye."

Because Akers was a student at Southeast Missouri University at the time, she was able to stop in and check on her grandmother frequently as her symptoms worsened.

"A lot of people don't have that luxury," Akers says. One of the most difficult parts of for her family was deciding when the time was right for her grandmother to move into a facility where she could receive round-the-clock care.

The cost of that care can be a tremendous burden on family finances. Glenda Zink knows that from firsthand experience, when her husband of 50 years, James, was stricken with Alzheimer's. He was diagnosed with the disease in 2006, and for the first three years, Zink kept him at home with her, which became increasingly difficult for her. When he was still at home, medical expenses hovered in the range of $13,000 per year.

The 2015 Walk to End Alzheimer's in Cape Girardeau. (Photo courtesy of the Alzheimer's Association)

She says after he got ill, her husband wanted her by his side every moment.

"He was fine as long as I was around," Zink says. His dependence on her continued to intensify until it was difficult for her to leave his side to go to the bathroom. "There was a lot of tension with all of this," she recalls.

When she finally made the decision to move her husband into the Lutheran Home, he became extremely agitated and had to be restrained when she left. "That was the worst day of my life," she says. "I just went to the car and sat there and cried."

The cost of the care was more than she expected, though Zink says she and her husband had saved all their lives, so there was enough to pay for the expense. Still, the facility, along with doctors' bills and medicine, cost Zink thousands of dollars each month.

Throughout this process, Zink says the Alzheimer's Association was an invaluable resource to her. She says she has attended the Walk to End Alzheimer's every year since her husband's diagnosis, even though one year, the walk took place the day after his death.

In addition to funding research for treatment and cure for the disease, a big part of the organization's mission is to provide resources and help for caregivers.

"They are not alone in the journey," Rohlfs-Young says.

One of the powerful moments during the event is the Promise Flower ceremony. Each person may choose a flower from one of four different colors, each with different significance. Blue flowers indicate a person who is living with Alzheimer's, and purple flowers are for those who have lost someone to the disease. Yellow flowers are for caregivers of people with Alzheimer's, and people hold orange flowers to signify that they support the Alzheimer's Association mission.

"I cry every year when I see everyone raise their flowers," Rohlfs-Young says. "You can really see how many people Alzheimer's affects."

The Alzheimer's Association runs a 24-hour-a-day toll-free phone line, (800) 272-3900, and information also can be found at www.alz.org/care.

For more information about the Walk to End Alzheimer's or to register, visit www.alz.org/walk.