After losing her husband to Alzheimer's, Sioux Falls woman earns Dusty Johnson's support on care bill

SIOUX FALLS — On April 26, 1978, a young Sioux Falls couple headed to the movie theater for their first date. Neither knew it at the time, but by Memorial Day weekend, Ken Vietor would buy a diamond for his sweetheart, Sandi Fillaus.

“I remember saying to my dad, ‘What would you think if I said I was going to get married?’ and he said ‘To who?’” Sandi said with a laugh. “It was truly one of those things where we just knew.”

Though their love may have developed quickly, it would never fizzle.

Ken and Sandi married days after Christmas in 1979, and a dozen years later had their first and only child. The family was close, finding time to travel while juggling jobs, school and other facets of everyday life.

“We have been lucky, blessed, with fantastic health, great jobs, wonderful friends, committed to each other for all these years, and we probably had one of the best or luckiest lives we could have ever had,” Sandi said.

But that changed when Ken was diagnosed with Alzheimer’s disease in August 2015 at age 60.

Living her life with Ken by her side, Sandi remembers countless instances where Ken’s behaviors indicated that Alzheimer’s was setting in — but she wishes she recognized them.

“There were signs before [the diagnosis]. There were things going on in his life that were not explainable,” Sandi said. “And to be honest, they were things I didn’t notice living with him and being glued to him 24/7.”

In 2013, two years before his diagnosis, Ken, then a banker, told Sandi that he was having trouble reading his computer. A visit to the eye doctor determined he had perfect vision. Once during a golf outing, one of Ken’s clients reached out to Sandi to report that Ken seemed confused on how to address the golf ball. And on a trip to California, their son noticed Ken seemed confused on how to operate a pop machine.

“He was the picture of physical health, absolutely perfect in every way — tall, slender, good looking, healthy, vibrant, happy, but in his mind, he was experiencing things. He told his doctor in 2014 ‘There's something wrong with me, and I think it's in my head,’” Sandi recalled. “So to me when I look back and think what on Earth was he feeling like … things were happening that we would’ve never guessed what was going on.”

Ken’s declining mental health forced him to retire from his job months after his diagnosis. With an uncertain timetable on how long Sandi may have left with her husband, the couple packed in as many memories as possible.

Eventually, as his health continued to decline, Ken was moved into hospice. He died on Oct. 14, 2021, at 66 years old.

Not long after Ken’s 2015 diagnosis, he and Sandi turned to the Alzheimer’s Association’s chapter in South Dakota to learn as much as they could about the disease and its effects and explore resources the national group can offer.

Part of the Alzheimer’s Association's initiatives was an annual trip to Washington to bring the fight for Alzheimer’s awareness and care to the halls of the U.S. Capitol. Pre-pandemic, Sandi said as many as 1,600 members of the national organization would show up.

“We went and got trained on all of the asks that we’d be presenting to all of the senators and representatives. We learned a lot statistically and how funding was necessary … and we listened to fantastic speakers,” Sandi said. “The culmination of the three- to four-day event is the day on Capitol Hill, where we have appointments with each senator and representative and sit down across the table and talk to them about our situation and why we believe our ask is so important and why their support is so needed.”

Ken and Sandi first visited the Capitol in 2016, and have returned each year (2020’s event was canceled and 2021’s event was held virtually) to double down on their asks. Sandi said South Dakota’s U.S. Rep. Dusty Johnson was the first to take action based on Ken’s story.

Contributed / Sandi Vietor

“I’ve only met with Dusty twice, right prior to COVID-19 and again this year. … He remembered Ken’s story, having met Ken a couple years ago, and that guy’s got a photographic memory,” Sandi said with a laugh. “He really listened to us about the bill this year.”

The bill she referred to is the Comprehensive Care for Alzheimer’s Act (CCAA), which would allow the Center for Medicare and Medicaid Innovation to test a Dementia Care Management Model that would provide comprehensive care to Medicare beneficiaries with Alzheimer’s or a related dementia.

Following the CCAA’s April 2021 introduction from Sen. Debbie Stabenow, D-Mich., Johnson ended up co-sponsoring the bill in September 2022. It currently awaits a Senate committee’s review before it can be put for a vote in the nation’s upper legislative chamber.

Sandi said that Johnson’s ability to meet Ken in person before his passing likely had a play in his decision to co-sponsor the bill.

“You sit down with someone like Ken — he’s a good looking, tall, healthy, happy guy walking down the street. You’d never know [his diagnosis],” Sandi said. “He walks in the room and sits down and tells you his story about how he no longer is able to do his job and he can’t tie a tie and he can’t read a book, it hits guys like [Johnson].”

“Every time I met with Sandra or Ken, I was struck by how honest and vulnerable they were about Ken’s diagnosis, and about the difficult journey ahead of them," Johnson told Forum News Service. "Together, they were among the most effective advocates I’ve worked with, and I’m glad Sandra continues her involvement.”

This year’s trip was the first time Sandi appeared in Washington without Ken by her side — but losing her husband hasn’t stopped her from working with the Alzheimer’s Association. To this day, she participates in various fundraisers throughout the year.

At this year’s Walk to End Alzheimer’s, Sandi said Team Vietor snagged the top spot in the family financial support category, raising nearly $1,700 for the annual event.

Anyone who wishes to explore the resources available from the Alzheimer’s website or learn more about the signs of Alzheimer’s can explore the organization’s website at alz.org.