Emma Heming Willis said her family’s decision to provide Bruce Willis with a separate home close to their residence drew online criticism, but she stands by the choice as the safest option for the actor, who was diagnosed with frontotemporal dementia.
The blended family — which includes Bruce Willis’ three daughters with ex-wife Demi Moore and two daughters with Heming Willis — support each other through the caregiving journey, she said.
“I’m so blessed to be able to have them on this journey. You know, we just love and support Bruce so much. Our life is very simple. Our life is really simplified, and there’s something really beautiful about that, just being able to be in these moments that are so fleeting,” she said.
Heming Willis’ new book, “The Unexpected Journey: Finding Strength, Hope, and Yourself on the Caregiving Path,” shares her family’s experience after Willis was diagnosed with frontotemporal dementia, also known as FTD, following his 2022 retirement from acting due to cognitive health issues.
She said she wrote the book to help other caregivers navigate the challenges of caring for loved ones with dementia.
“I realized that the unexpected was born from this idea that I have the time, the energy, the access and the resources to be able to take the wisdom and insight from this journey that I’m on still and bring in experts and specialist,” Heming Willis said. “It was a way for me to be able to pay it forward.”
Coping as a caregiver
Heming Willis said caregivers often struggle with decision fatigue and need practical guidance.
“I think that caregivers are so fatigued with making decisions all the time,” she said. “I really want to just put some actionable, tangible ideas into this book so that caregivers don’t have to think too hard. Sometimes I just want someone to tell me, like, tell me what to do because we’re so maxed out.”
A neurologist informed her that caregivers often die before their patients, with mortality rates 63% higher than people their age.
“I was floored by it, and it was the wake-up call I needed. I needed to hear that so I could understand and start to really take my own health seriously and prioritize it,” Heming Willis said.
She said 40% of caregivers cannot make their own doctor appointments due to lack of support and help. Heming Willis said she initially didn’t realize she was allowed to ask for help.
“I didn’t know I was allowed to ask for help,” she said. “I’ve always been very self-sufficient and independent, and I’ve really had to unravel that because I realize I needed to raise my hand and know that I wasn’t a failure because I was asking for help.”
Heming Willis said the early signs of her husband’s condition were hard to identify. Their communication began to break down, and routines that once felt aligned no longer did. She described the changes as subtle but noticeable, creating a sense that things were off. After receiving Bruce Willis’ diagnosis, she said doctors provided little guidance.
“I walked out with nothing, no hope, no direction, no road map, nothing,” she said. “I was stunned. And that is how this unexpected — from that traumatic moment was where that book comes from.”
“The Unexpected Journey” is now available for purchase.
