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Degenerative brain disease changes everything for area realtor

Ashley Kavitz threw a party last November for her mother’s 58th birthday at one of Robin’s favorite restaurants, Pier 500. Pictured with Ashley and Robin is Nick Yoder, who has been a huge support to them both. Submitted photo to Hudson Star Observer.1 / 3
Robin and Ashley Kavitz have traveled together extensively. Ashley said the memories of those trips are precious to her. Robin’s mind has been affected in many ways as a result of FTD but she does retain most of her memories. (Submitted photos)2 / 3
Robin Kavitz is a resident at a care facility in St. Paul. Ashley visits daily and says her mother loves to be tickled. Submitted photo to Hudson Star Observer.3 / 3

Robin Kavitz has been a successful member of the Hudson business community for close to 25 years, first as the advertising director for the Star-Observer and then as a local realtor with a reputation for her innate sense of style and design.

But things took a very difficult turn in recent years and life as Robin knew it changed forever, not only for her but for her daughter Ashley as well.

Robin, 58, has been diagnosed with FTD - frontotemporal dementia. According to the Alzheimer’s Association website, FTD is a group of disorders caused by progressive cell degeneration in the brain’s frontal lobes (the areas behind the forehead) or its temporal lobes (the regions behind the ears).

The cell damage leads to tissue shrinkage and reduced brain function in the areas which control planning and judgment, emotions, speaking and understanding speech, and movement.

The disease usually develops in people in their 50s and early 60s and is often misdiagnosed. There is no cure and treatment is confined to treating the symptoms of the disease. Once considered rare, it now accounts for up to 10 to 15 percent of all dementia cases. In those younger than age 65, FTD may account for up to 20 to 50 percent of dementia cases.

Ashley Kavitz, who recently relocated from her home in San Diego to St. Paul to care for her mother, said she thinks the FTD started in 2012. She noticed some occasional, unusual behavior back then but not seeing her regularly made it difficult to assess a problem. But when close friends reached out in the spring of 2013 with their concerns about Robin’s behavior, Ashley knew something was wrong.

Getting at just what was going on proved to be very difficult. FTD is difficult to diagnose and there is no definitive test for it. Scans or an MRI can appear normal and the disease doesn’t exhibit in memory loss like the more common Alzheimer’s. It became a question of ruling out other diseases and deciding that Robin’s symptoms and behavior best matched FTD. That was in May 2013, just a little over a year ago. Looking back, Ashley believes the first signs of the disease began in 2011.

Since that time mother and daughter have been a journey they never expected. Ashley said her mother, who had a reputation as a shrewd businesswoman, made some bad financial mistakes as the disease progressed.

“Things began to unravel fairly quickly and it was hard because I was in California and Mom was there. She has some amazing friends who stepped up and helped us but it was so hard not knowing what to expect next,” said Ashley.

She set about getting control of her mother’s finances and access to her medical records with a power of attorney. She started the process of getting her on disability, something that was complicated by the fact that Robin was not a minor but also not 65 yet.

With Robin no longer able to live on her own, Ashley had to find somewhere for her that could accommodate her behavioral issues. Red Cedar Canyon in Hudson worked for a while but eventually she needed a more secure facility with staff that understood Robin’s condition. After looking at eight other facilities, Ashley counts herself lucky to have found a place for her in a St. Paul care center. The cost is high but worth it to have her mother in a safe place where she gets the care she needs.

As the disease progresses, Robin is having increased difficulty with speech and her balance. She often uses a walker and has trouble swallowing. She has recently been diagnosed with ALS, something that often follows FTD.

A different life

Robin and Ashley moved to Hudson 1990. Robin raised Ashley as a single mother and the two women could best be described as “exceedingly close.” When Ashley left Hudson to attend college in San Diego, her mother purchased a condominium in Palm Springs where she hoped to retire and be closer to her daughter. The two spent as much time as possible together, travelling together to Mexico, Spain and France to name a few.

But now that condo has been sold and Ashley was able to get a transfer to the Twin Cities from her employer, ADP. These days she manages two full-time jobs — her career and the care of her mother.

She says she has been on a pretty steep learning curve since her mother’s illness first came to light. “And there really isn’t a lot of help or guidance out there for someone like me. I’ve had to find out a lot on my own through a lot of research and questions. It has been a logistical nightmare and as an only child, well it falls to me. There have been days when I would have given anything to have someone else there to make the decisions. Her friends and her sister Dolly have been amazing but it ultimately comes back to me.”

Ashley has made a reconnection with someone from her past as a result of her mother’s illness. She and Nick Yoder of Hudson dated in high school and ran into each other when he was working at Red Cedar Canyon.

“He reached out right away, offering to help in any way he could. He has been so good to Mom and to me. He’s so patient and visits her all the time. And he finds humor in things. Without that I don’t know where I would be.”

Ashley said she is adjusting to her new normal and is learning to accept that her mother’s condition will dramatically shorten her life.

“This is not what I expected. I saw myself in a great career in California, having kids and a house with a little guest place in the back for my mom. But that isn’t to be.”

But in spite of all that has happened, Ashley says she has no regrets and is grateful for the life she and her mother have shared.

“All of my time with her, then and now, is precious. We’ve done so much together. And every step along the way, I know I’ve done the best I can for her. Just like she would for me.”

She is philosophical about the situation they find themselves in today. “I think God gave her to me and me to her and he knew that we needed to pack a lot of life into a pretty short time together. Our life together has been a blessing.”

As for the future, she will be at her mother’s side no matter what. Beyond that she hopes she can find a way to use her experience to help others navigate this kind of a journey.

For more information go to the Association for Frontotemporal Degeneration website to learn more about the disease and the latest in research

Meg Heaton

Meg Heaton has been a reporter with the Hudson Star Observer since 1990. She has a bachelor’s degree in anthropology and Native American Studies from the University of Wisconsin-Eau Claire.

(715) 808-8604