Emma Heming Willis has publicly responded to critics regarding her caregiving for her husband, Bruce Willis, who has been diagnosed with frontotemporal dementia. In early 2023, the family of the couple announced their diagnosis. This catalyzed a national conversation that continues to this day about the burden of caregiving, especially for families affected by dementia.
In her recent endeavors, Emma Heming Willis authored a book titled “The Unexpected Journey: Finding Strength, Hope, and Yourself on the Caregiving Path,” which aims to provide support and guidance for caregivers facing similar challenges. She explained that at the outset, when Bruce was first diagnosed, the family was not given much help or guidance.
Emma recalled how Bruce’s neurologist had put it, saying that sometimes the caregiver passes away first, before their loved one. This sobering realization changed the tidal wave on her for her wake-up call. That was my come to Jesus moment. I learned that getting help is an act of bravery, and asking for help doesn’t make someone a failure. It isn’t embarrassing for me to ask questions—it’s cool for me to raise my hand.
As Emma reminds us in her book, self-care for caregivers is not indulgent, it’s essential. She reflects on her journey, stating, “I didn’t realize that. I really needed permission for someone to tell me that it’s OK to get help. And that’s what I hope that this book does for caregivers, that it just gives them the permission to be able to care for themselves, because if they don’t, how will they be able to show up and continue to care for the person that they love?”
Emma spoke to the tough choices they’ve had to make as a family. Making that decision wasn’t an easy one for us to make. It was the most safe and most logical option for Bruce and our two young daughters.
The couple has five daughters altogether. They have two younger daughters with Emma, and three older daughters— Tallulah, Scout, and Rumer—with Bruce’s first wife, actress Demi Moore. It is Emma’s conviction that caregivers should always act in the best interests of their loved ones and have the opportunity to act. Along with that, they need to do what is best for their kids.
And I knew it would do that, and that’s why I pointed out the problem. I feel like caregivers get judged all the time,” she said. This just goes to show that sometimes people speak without actual familiarity. In our dream house, dementia would feel different at every doorstep.
