by Whitney Ludvik

In June 2016, three years after moving away from my hometown of Richmond, Virginia, I got a call from one of my mom’s best friends. She had recently had lunch with my mom and felt certain that something was wrong with her. That was my first indication that something was amiss. From there I began carefully observing and recording my mom’s increasingly unusual behaviors. After a prolonged diagnostic journey, my mom was diagnosed with bvFTD in January 2018, a diagnosis which was confirmed later that year at the Penn FTD Center.

Despite the disease, my mom, who has always been known for her relentless positivity, has not lost her cheerful personality. In her case, FTD primarily expresses itself by giving her a childlike disposition. We are fortunate that mom is usually over-the-top happy.

At the beginning of mom’s FTD journey, my boyfriend and I would drive from Washington, DC to Richmond every weekend to spend time with her. She was living alone at the time, and seemed to be functioning fairly well, but we soon discovered that she was stealing alcohol from local stores and drinking to excess every day. I relocated to Richmond to become mom’s full-time caregiver, but eventually the stress of caregiving became too much to bear without help. We decided that moving her to an assisted living facility was the best option for everyone.

Mom’s transition to facility care was not without bumps in the road – she escaped her first facility five times! But after being kicked out of two facilities and enduring a hospital stay, my mom landed at the Pearl at Watkin’s Centre in Richmond, where she has now lived for a full year with no attempted escapes. We are very grateful.

Mom has adapted to her routine at the facility. She happily works on puzzles in her room, and has three favorite CDs that she listens to on repeat – James Taylor, Carole King, and Grease. She also watches Grease every night after dinner. If I happen to call her while she’s watching, we end up singing along to the movie’s soundtrack together.

Mom’s facility hosted a big Halloween party this year, and asked families to provide costumes. Knowing her love for Grease, I decided to get my mom a “Pink Ladies” jacket and the requisite 50’s accessories. I figured it would bring her joy, but when I dropped it off, her reaction exceeded my expectations. She was utterly thrilled!

For the entire week leading up to Halloween, mom repeatedly asked the nurses what day and time she was supposed to wear her costume. She was so excited, and thanked me profusely for the costume every time we spoke. I had no idea how much delight I could bring to my mom, just by identifying something simple that brings her pleasure, and finding a way to help her celebrate it a little more.

Even with FTD, my mom continues to teach me to seek out joy and embrace the positive in each day. I am so grateful that, through a simple Halloween costume, I could do the same for her.