Emma Heming Willis has a message for anyone who “unfairly” judges caregivers without knowing what they’re going through.
In an Instagram video, Heming Willis said she's received backlash since speaking openly about caring for her husband, Bruce Willis, who was diagnosed with frontotemporal dementia, which the family announced in February 2023.
“What I knew is that by sharing some of our intimate information that we would see these two camps right? It would be people with an opinion versus people with an actual experience,” she said. “And it’s been a perfect example to see in the comments section.”
The remarks follow Heming Willis' appearance in an ABC News special with Diane Sawyer in August, where she spoke about FTD, a neurodegenerative disease that primarily affects communication and behavior, and revealed that she and Willis live separately so he can receive full-time care.
Heming Willis, who has been married to Bruce since 2009, said in her latest Instagram video that she wanted to give the interview “a couple days to sort of land and breathe” and praised the special for raising awareness of FTD.
But Heming Willis said she noticed some social media users giving their opinions on how she is caring for her husband.
“That is what caregivers are up against — judgment from others and criticism from others,” she said.
Heming Willis then read a quote from her upcoming book, “The Unexpected Journey: Finding Strength, Hope and Yourself on the Caregiving Path.”
“Everyone will have an opinion, but you have to remind yourself that most don’t have the experience to back it up,” she read. “And if that’s the case, they shouldn’t offer their two cents about it, and you shouldn’t pay them any mind.”
“Even if someone is closely familiar with dementia or the condition you are caring for, they aren’t in your home, so they don’t know how your person is behaving or your family dynamics,” she added.
In the caption, Heming Willis talked more about the difficulties that caregivers go through.
“Too often, caregivers are judged quickly and unfairly by those who haven’t lived this journey or stood on the front lines of it,” she wrote. “Sharing openly may invite opinions, but more importantly, it creates connection and validation for those actually navigating the realities of caregiving every day.”
The blended Willis family, which includes Bruce's daughters Rumer, Scout and Tallulah with ex-wife Demi More, and Mabel and Evelyn with Hemming Willis, often gather for holidays and birthdays.
Tallulah commented on Heming Willis’ post, “I love you so much. We love you so much. Thank you for all you do for us and our family.”
Maria Shriver added, “Well said carry on this book will help so many you sharing your experience will help so many we are here to help others job well done proud of,” with a red heart emoji.
In the ABC special, Heming Willis gave a health update about her husband.
“Bruce is still very mobile. Bruce is in really great health overall, it’s just his brain that is failing him,” Heming Willis said.
She said his “language is going” but added the family has learned to adapt.
“We have a way of communicating with him, which is just a different way,” Heming Willis said.
