Imagine hearing these words – “You’re loved one has Alzheimer’s.” 1999 Eagle Grove High School graduate Myndi (McCart) Grimsley has heard it three times, and that’s why she’s chairing this year's Walk to End Alzheimer’s in Fort Dodge, happening Oct. 2.
Alzheimer's, a degenerative brain disease caused by cell damage, is the most common cause of dementia and affects memory, thinking, and behavior. Symptoms eventually grow severe enough to interfere with daily tasks. One of the first signs is generally difficulty in remembering new information because the disease typically affects the learning part of the brain first. According to the Alzheimer’s Association, one in three seniors dies with Alzheimer’s or other form of dementia. Their average lifespan after diagnosis is four to six years, but some live as long as 20 years depending on various factors.
“The best part about me being able to share my (Alzheimer’s) story is that I wasn't in the thick of it, so it allows me to be able to talk about it, but it also limits my perspective since it has always been from a grandchild’s point of view… since I didn’t get involved in all of the initial conversations of things or decisions on care giving,” said Grimsley.
Her grandpa, Joe Schultz, known by many as "Bud,” was the first person Grimsley said she really knew who was diagnosed with the disease. She was in high school at the time.
“I can remember him maybe getting a little forgetful,” she said about his Alzheimer’s beginning. She also remembers her parents and grandmother talking about his memory issues, and her grandmother keeping him at home as long as possible.
"He was kind of a large in charge man, so that took a lot for her,” Grimsley said light-heartedly.
Grimsley’s reaction to the diagnosis was like that of many who have received the same devastating news. As the grandchild, Grimsley was what you could call “on the outside” of Alzheimer’s looking in – not involved with the care or decisions, but still affected by a diagnosis in the family and the changes she saw happening to her grandfather.
“I kind of had a lot of questions because it's not something people talked about. I wasn't really familiar with (what Alzheimer’s was) at the time, so I didn't really know what that meant, or what it looked like, and what I was experiencing with him,” admitted Grimsley. “To be honest, there weren't really a lot of good answers.”
Grimsley explained the defining moment in her grandfather’s life with the disease came when he needed more help than what family could provide. That’s when the family made the difficult decision to move him to the Clarion Care Center.
"Once they're kind of to that stage (where they need that kind of help), it's a weird realization that you've kind of lost them at that point, but yet, they are not actually gone,” said Grimsley.
Nonetheless, Grimsley recalls how her grandmother frequently spent time with her grandfather at the care center until he passed three years later.
“It was a sad ending to their love story,” she said.
Looking back now, Grimsley said that probably the saddest stage of the disease was when grandpa Schultz would say something that didn’t really make sense, then he would look at them as if he was thinking “Why did I say that?”
“From my experience, I think there was a short window where grandpa knew something was going on,” said Grimsley. Her other grandpa, George McCart, was also later diagnosed with Alzheimer’s, as was his wife and Grimsley’s grandmother, Betty McCart. George passed away from a fall before the disease claimed his life. Betty’s battle was a long progression of the disease. In the beginning, she was able to stay in her home with the help of family. They were grateful for that, but didn’t make it any easier when the time came that more help was needed than what they could provide.
The Alzheimer’s Association Facts and Figures report released just this month shows that Alzheimer’s, and other dementias, continue to be a significant burden for many Iowa families, just as it was difficult for Grimsley’s circle of family and friends. A staggering 25 percent of Alzheimer’s caregivers are referred to as "The sandwich generation.” These people are not only caring for aging parents, but also caring for at least one child under the age of 18 at the same time. There are an estimated 11 million unpaid family members who are providing care to a loved one with Alzheimer’s or other dementia-based diagnosis. Iowa is home to an estimated 73,000 of them. The total monetary value of that unpaid care, according to this report, is $257 billion – with $995 million going to Iowa caregivers alone.
Doug Bickford, executive director of the Alzheimer’s Association Iowa Chapter, said in a press release, “We must continue to work toward advancing new treatments that can stop or slow the progression of Alzheimer’s, while also continuing to provide care and support services to help all those affected.”
This quest for answers and support, in addition to her own personal experiences with Alzheimer’s, is exactly why Grimsley decided to get involved in the Walk to End Alzheimer’s.
Be sure to watch next week’s Eagle for the conclusion of this story. Find out more about Grimsley’s involvement in the Walk to End Alzheimer’s and how you can support their efforts.
