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“I feel peaceful knowing my aunt is loved”—Sarah and Jennifer’s powerful story

Sarah S. | Nov 10, 2020

Jennifer and my uncle were married for 25 years, living on our family farm to grow corn and soybeans. They never had kids, and I was always close with my aunt. When my grandfather passed away in 2015, we started to notice something different about Jennifer, but it wasn’t until my uncle passed away in 2016 that we became more concerned.

Long story short, my aunt was disoriented and confused about reality. Relationships were broken apart because of something nobody knew about. Though she experienced multiple wellness checks and hospital stays, nobody could figure out what was wrong. This season was so hard: Jennifer used to be smart and trustworthy, and everyone loved her. But she was changing before our eyes.

My sister and I did all we could, and we finally got her released from the county in April 2017. We went directly to Mayo Clinic, where Jennifer was diagnosed with frontotemporal dementia (FTD). We had known both her parents had dementia, but we had no idea FTD would become part of Jennifer’s story. She was only 60 years old when diagnosed.

After that, I lived with Jennifer to provide 24/7 supervision. Soon, it became too much. I wasn’t able to live my own life, and I couldn’t give my aunt the care she deserves, even though I quit my job. We made the tough decision to move Jennifer into a memory care community in spring 2019. By this time, Jennifer was losing all cognitive function. My heart broke as I watched this disease take everything from her.

However, I started to question the care at Jennifer’s previous memory care provider. I didn’t think it was the right place for her, but I didn’t know where to turn or where to go. At just the right time, the team at Havenwood of Burnsville reached out to me. I was so emotional, but when I met them I instantly felt understood. Everyone was accepting, and the community felt different. It felt like home. I knew right away that I wanted Jennifer to live here.

The day Jennifer moved into the community was cold and rainy. I was worried, and for a moment I wasn’t sure I made the right decision. When everyone—from the chef to maintenance man to the executive director—came to welcome us, I started to feel better. The team had even set up Jennifer’s recliner so it was ready when she arrived. After settling into her chair, Jennifer looked at me and gave a sigh of relief. My aunt, who is normally stiff and uncomfortable, smiled at me and fell asleep.

It’s obvious that Jennifer is cared for and loved here. I know my aunt wouldn’t be happy—she wouldn’t even be here—if it wasn’t for the Walker Methodist and Havenwood team. When people ask me, “How’s Jennifer?” I’m able to say honestly that she’s doing well. Even as this disease tries to take everything from her, she knows people care for her. They adapt to who she is now, and they’ve been a comfort to me, too. The team understands something so little as a new hairdo can mean so much.

My favorite recent memory happened on Jennifer’s birthday in May. I came to visit her on the patio, and a caretaker helped me get the cake over the fence without dropping it. As I greeted Jennifer, I realized she didn’t recognize me. I thought this would’ve been harder to come to terms with, but what happened next was amazing: The caretaker was right next to Jennifer the whole time, telling her “Happy Birthday” and offering reassurance. She knew and recognized him. I felt at peace knowing, truly, I never had to worry.

Especially during the pandemic, the team came together and created a family. This has been the biggest blessing to me. I can’t find adequate words to describe the depth of my gratefulness. My worry is gone. I have the freedom to get my life back—to repair my own family—while knowing my aunt is surrounded by people who love her. Our family is now closer than ever. I've become passionate about advocating with the Association for Frontotemporal Degeneration and feel supported by Havenwood of Burnsville. This community shows how things should be. I’m so thankful.