Karen Neeb describes her mother as beautiful and smart, an eternal optimist and a voracious reader.
When not nestled in a chair with a good book, Berdine Neeb could be found doting on others. It was a habit she maintained even as her mind faltered, her good intentions wrapped in a cloud of confusion as she succumbed to dementia, dying at age 83.
“When she entered the nursing home, mom was still a physically strong woman,” Karen recalled. “For some time, she seemed to think she worked as a nurse at the nursing home, and would care for the other residents and push their wheelchairs for them. She walked miles and miles around the nursing home doing her ‘rounds.’ Over the years, her ability to connect and communicate decreased. She didn’t recognize us. She degraded from walking around the nursing home to using a wheelchair, and then finally lost all mobility. By the end, she didn’t speak or even seem to comprehend that another person was present.”
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Witnessing her beloved mother’s devastating descent into dementia, Karen says, was heartbreaking, sparking emotions of guilt — “I didn’t always have the patience that she deserved,” she says of her mother’s repeated questions — grief and anger at the disease that “robbed” the last 15 years of Berdine’s life.
It also instilled in Karen a drive to fight for a cure for a disease that affects 5 million Americans, including 110,000 in Wisconsin, and is the sixth leading cause of death nationwide.
On Saturday, Sept. 14, Karen will participate in the Alzheimer’s Association Walk to End Alzheimer’s for the 11th year, raising awareness and honoring her mother, her grandmother and other relatives who have suffered from dementia.
“My two kids never got to know the wonderful person that she was,” Karen says. “It took my grandma, then it took my mom, and now it continues to affect other members of my family. I live in fear that someday it could have the same devastating effects on my and my kids’ generations.”
More than 600 cities nationwide will participate in the annual Walk to End Alzheimer’s fundraising event, with the La Crosse incarnation kicking off at 8 a.m. in Myrick Park with one- or three-mile routes.
According to the Alzheimer’s Association, over 16 million family members and friends — including 195,000 in Wisconsin — provided 18.5 billion hours of unpaid care for people with Alzheimer’s in 2018, a contribution valued at $234 billion. This year, Alzheimer’s and other related diseases are projected to cost the United States $290 billion, an amount expected to rise to $1.1 trillion by 2050.
By that year, about 13.8 million American’s are expected to have Alzheimer’s, almost triple the current number, if no remedy is found.
“People are seeing the projected increase in the diagnosis of dementia and they are scared, honestly, and they want to contribute to the research and help prevent this from happening to themselves or their family members,” said Kelley Manson, development specialist for Alzheimer’s Association La Crosse area.
In 2018, about 415 people participated in the La Crosse area event, raising over $60,000. Nationally, last year’s Walk to End Alzheimer’s brought in $95 million for accelerating research, advancing public policy, promoting brain health, and enhancing support and care.
Locally, organizers are hoping to register 450 participants and raise $90,000 from this year’s walk.
Having lost a grandparent on each side of her family to the disease, managing the annual walk “is not just a job to me; it’s something I deeply care about,” Manson says.
Karen has living relatives battling Alzheimer’s, which began affecting her mother in her 60s. Berdine’s husband, Henry, served as her primary caregiver for several years before the strain became too overwhelming, and she was moved into a nursing home. When he was diagnosed with a late stage cancer, Henry was transferred to the same nursing home, where he died three months later.
“My confused mom (took) care of him,” Karen says. “For months afterward, she would ask where Henry was and when he was coming for her.”
Berdine spent a decade in the nursing home before she died last year.
“She had a strong body that kept on going long after her mind was diminished,” Karen said. “At that point, it almost seemed like a blessing — I had already mourned the loss of my mother for many years. My heart goes out to any caregiver who has watched their loved one deteriorate slowly, year by year. I know (the) pain as a family member who was not able to be there on a daily basis. But for those who are there, it can be unbearable. I wouldn’t wish it on anyone. It is a heartbreaking disease. It is bad, and then it only gets worse.”
While the cause of Alzheimer’s is not fully understood, there are believed to be lifestyle, environmental and genetic factors at play, and the Alzheimer’s Association notes research has found individuals with a parent or sibling with Alzheimer’s are more likely to develop the disease than those who do not have a first-degree relative with condition, and those with more than one first-degree relative affected have an even greater risk.
Currently, there is no way to slow the progression of or cure Alzheimer’s, though there are five federally approved drugs to treat the symptoms. Additional medications are in the trial stage, and intensive research is ongoing. The Alzheimer’s Association is the world’s largest nonprofit funder of Alzheimer’s research, according to the organization’s website.
“I’ve badgered my wonderful, generous and patient family and friends to donate money to the cause,” Karen says. “I’ve recruited friends to walk on my team. I’ve won awards for the most money raised in a year. I’ve gotten up on stage and talked about my story with my voice shaking with tears. I’ve walked nine months pregnant. This year, I will walk on crutches. I’m not going to stop until we win this fight against Alzheimer’s.”