by Christina Kamarauskas

The months and years leading up to my dad’s bvFTD diagnosis in February 2019 were chaotic and confusing. Once a likeable and dependent man of pride and strength, he became someone I barely recognized.

I had always known him as a frugal and loyal rule follower with an unrivaled work ethic. He loved horses, race cars, and motorcycles, and his bright blue eyes and smile could light up a room. In high school they gave him the nickname “Billy Blue Eyes.”

But the summer of 2017 was a turning point. By then, he had completely lost his capacity for empathy; he would make hurtful or offensive remarks and just laugh when I pointed them out. Repetition was another symptom – he would say the same phrases over and over again, drive the same route, and show up at the same places unannounced. At one point a friend filed a restraining order due to this behavior.

Dad began saying that people at work were out to get him. Then, in November 2018, my hardworking father, who had never lost a job in his life, was let go. To make matters worse, I soon found out he had been financially exploited.

In 2019 an ER visit resulted in a scan that showed shrinkage of the frontal lobe. A follow-up consult with the neurologist lasted only 20 minutes: The doctor took one look at the scan and diagnosed him with bvFTD. He said that I should place my dad in a facility “or he will end up in jail.” My dad was just 62 years old, and I was in a state of disbelief and denial.

My denial was short-lived, however, as it quickly became apparent that I must take away dad’s driver’s license and get him 24/7 care. We simply could not risk any more arrests or financial devastation.

Our introduction to memory care brought with it the realization of how unknown FTD is, even within the medical community. After spending thousands upon thousands of dollars, and enduring innumerable experiences with professionals who did not understand FTD, we were blessed to finally find a facility where my dad receives excellent care. The staff at Charter Senior Living in Orland Park, IL communicate well, and constantly ask questions to improve their understanding of FTD. During this very difficult time I am comforted that they have his best interests at heart. I know that my dad is safe, and that he can feel my love for him.

Dad was diagnosed with Covid-19 in May, and is currently on hospice. While I know that he is in the end stages of FTD, I will be by his side until the end, and I will make it my life’s mission to help those affected by FTD. If I can use my experience to help even one other family, I know that would make my dad proud.