This week is World FTD Awareness Week, which means many news and social media outlets are talking about the disease our mom lives with. It is such a huge relief that this form of dementia is being discussed more openly, because it’s one of the most heartbreaking and terrifying diseases out there. Of course, many types of dementia exist, but there is something infamously unique about FTD.
Think of a perfectly functioning physical body—one that can move, eat, breathe, and, for the most part, work as it should. Now imagine taking away one of the biggest components of what makes you you: your personality. Everything that encompasses who you are disappears. Your laugh, your humor, your compassion, your anger, your dreams, your desires, your sadness, your happiness, your passion, your zest for life—every single detail vanishes. What remains is simply existence: alive, breathing, but unable to function independently.
That’s FTD. It robs people while they are still young and vibrant. Our mom, June, is cared for 24/7 and spends most of her time on the couch. She doesn’t get to experience the colors of fall like she used to. Of course, we take her for walks, but not an ounce of excitement registers anymore. To put it bluntly, if I told her I was pregnant (I’m not), I’m fairly certain she wouldn’t react.
If I were to be completely honest, FTD is essentially brain damage. Unlike accidents that cause brain injury, though, no one really knows how FTD begins. One of the most jarring questions I’m asked is, “Is it genetic?” Well… I sure hope not. But genetics, lifestyle, and plenty of unknowns all seem to play a role.
When June was diagnosed, we asked what came next. The answer? “Go home and prepare for care.” That’s it. So, we did. It wasn’t easy, but with time—and with the incredible strength of our oldest sister Michelle, the love of our dad, and the support of three compassionate caregivers—we created a system that works.
Friends and family often ask, “How is your mom?” The truth? She’s good. She seems happy. In fact, she’s great—in the sense that she’s safe, cared for, and comfortable. She can’t bathe, cook, or care for herself, but she is in wonderful hands. And here’s the thing: it’s okay to ask how the caregivers are doing, too. It’s hardest on us. She doesn’t realize what’s happening—that, perhaps, is the only silver lining.
I’ll never forget a moment at a music festival. A friend of Anthony’s came up and gave me a big bear hug. Then he whispered, “I’m thinking about you.” I was floored. It was such a profound display of compassion that my heart nearly burst. That tiny act of kindness meant everything. Sometimes it really is the little things. (Though on an off day, you’d better have a glass of red wine and a box of tissues ready if you ask me how I’m doing.)
FTD is like a death. There’s a void that can never be filled. I miss my mom so much my heart literally aches—it’s a physical pain. Some days I visit and leave smiling, other days I have to walk out quickly before the tears come. I once looked at her through tears and said, “Mom, I’m so sad for you.” She looked at me blankly, then turned back to the TV. That’s the reality of this disease.
This is why awareness is so important. No one—no one—should have to live like this. Recently, someone in our community took his own life after receiving an FTD diagnosis. His story devastated me, and while it’s heartbreaking, I understand his decision. With FTD, there is no cure and little hope—for now. But with more research and recognition, that may change. I am deeply grateful to the men and women dedicating their work to finding answers.
As for me, the only thing I can do is raise awareness and share our story. As sad as it is, I do my best to stay positive and walk this path with my mom as it unfolds. Meditation, yoga, and a positive mindset help me stay grounded. It’s important that I don’t get lost in the “what ifs” but instead stay present.
These days, June and I enjoy simple things: coloring, movement, counting, and, most recently, reading children’s books. I discovered by accident that she can still read, and if Dr. Seuss is the only way I get to hear her voice, I’ll take it. I cherish every moment—especially when she grabs my hand or rubs my back.
Through it all, our family has stuck together. June may not be able to say it, but I know she feels the love we give her.
To the researchers working tirelessly on FTD—thank you.
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Supporting Families Living with Dementia: What to Know Before You Visit