When Grief Comes Knocking Again: Reflections on Emma Heming Willis, The Unexpected Journey, and My Dad

When Grief Comes Knocking Again: Reflections on Emma Heming Willis, The Unexpected Journey, and My Dad

When Emma Heming Willis released her book The Unexpected Journey and began speaking publicly about her husband Bruce Willis’s diagnosis with frontotemporal dementia (FTD), the world took notice. For many, it was another celebrity story—an intimate glimpse into a famous family’s private struggle. But for me, it hit differently. It felt personal.

You see, my dad loved Bruce Willis.
According to him, they knew each other—long before fame ever found Bruce. My dad used to tell me that Bruce bartended at a bar where his band, Adom, played frequently. Whether that’s completely true or one of my dad’s legendary stories, I’ll never really know. But as a kid, I believed it with all my heart. To me, that meant I was connected to someone famous, and that made my dad even cooler than he already was.

Years later, as I walked through the dementia journey with my dad, those childhood memories came rushing back. The ups and downs, the laughter and heartbreak, the moments of deep love mixed with unbearable loss—it all became part of the fabric of who I am today. My dad’s journey shaped my work, my purpose, and the compassion I bring to every family I meet and every class I teach.

But even as I teach and support others, there’s a part of me that still carries quiet grief.
I miss my dad on so many levels. I miss who he was when I was growing up. I miss the years when we weren’t close—the arguments, the silence, the unfinished healing. I miss the chance to make things right. And most of all, I miss my daddy. The man who told tall tales about Bruce Willis, who loved music, and who—despite everything—taught me what it means to care deeply for others.

So when Bruce Willis’s diagnosis became public, I couldn’t bring myself to engage. My marketing company asked if I wanted to share a post or comment, and I just… shut down. I couldn’t do it.
I couldn’t grieve again.

Even though Bruce’s form of dementia was different from my dad’s, it opened a floodgate of memories and emotions that I wasn’t ready for. It was too close, too raw, too familiar.

Then, recently, I attended the Penn FTD Center’s Annual Caregiver Conference. And there she was—Emma Heming Willis—appearing in a short video clip, speaking with such grace and vulnerability about her book and her family’s journey. Without hesitation, I bought The Unexpected Journey. I told myself I was ready to hear her story.

But here’s the truth: it’s still sitting in my Audible library.
I can’t hit play. I tear up just looking at the title.

Because I know that when I finally listen, I’ll have to open that part of my heart again—the part where my dad still lives, and where the pain of losing him still lingers. And that’s the complicated thing about dementia grief: it doesn’t end when someone passes. It doesn’t fade with time. It simply shifts. You learn to live with it, to carry it quietly, to let it shape you without consuming you.

One day, I’ll find the strength to listen to Emma’s story.
But for now, I’ll keep remembering my dad in the families I support, in the caregivers I teach, and in the stories I share. Because love, even through loss, never really leaves us—it just changes form.