Emma Heming Willis is opening up about the “guilt’ she feels over having access to “resources” amid husband Bruce Willis’ dementia battle.
“When I’m able to get out for a hike to clear my head, it’s not lost on me that not all care partners can do that,” Heming Willis, 45, wrote in a Saturday, November 11, article for Maria Shriver’s Sunday Paper. “When what I share about our family’s journey gets press attention, I know that there are many thousands of untold, unheard stories, each of them deserving of compassion and concern.”
In recognizing her privilege, Heming Willis maintained that it is “important” for her to be an “advocate” for those who “don’t have the time, energy, or resources to advocate for themselves.” She noted that she continues to be open about her struggles in hopes that it will help others “feel seen and understood.”
“I want people to know that when I hear from another family affected by FTD, I hear our family’s same story of grief, loss, and immense sadness echoed in theirs,” she added.
The entrepreneur explained that hope is “everything” when it comes to dealing with a family illness. “I have so much more hope today than I did after Bruce was first diagnosed,” she shared. “I understand this disease more now, and I’m now connected to an incredible community of support. I have hope in having found a new purpose — admittedly one I never would have gone looking for — using the spotlight to help and empower others.”
In March 2022, Heming Willis and Willis’ ex-wife, Demi Moore, revealed that Willis would be stepping back from the spotlight as he battled aphasia. Earlier this year, the family revealed that the actor had received a “more specific diagnosis” of frontotemporal dementia. “Today there are no treatments for the disease, a reality that we hope can change in the years ahead,” they wrote via Instagram in February.
Heming Willis — who shares daughters Mabel, 11, and Evelyn, 9, with the Die Hard star — has often been candid in her ups and downs as continues to help her husband through his health battle. Appearing on a September episode of the Today show as part of World Frontotemporal Dementia Awareness Week, she revealed it is both a “blessing and [a] curse” to have more clarity about Willis’ condition.
“It doesn’t make it any less painful, but just being in the acceptance and just being in the know of what is happening to Bruce just makes it a little bit easier,” she shared.
Following her Today appearance, Bruce’s daughters Tallulah Willis, 29, and Scout Willis, 32, took to social media to praise their stepmother for her strength. (Bruce shares daughters Tallulah, Scout and Rumer Willis, 35, with Moore, 61. The pair were married for more than a decade before their 2000 split.)
“I truly could not be more proud of @emmahemingwillis for being willing to step out into the public eye, (even though it’s terrifying!!!) to share our family’s story in service of spreading awareness about FTD,” Scout gushed via her Instagram Story at the time. “Emma you are such a champion for this cause and you inspire me EVERY SINGLE F–KING DAY.”
The unwavering support is what helps the family pull through, a source exclusively told Us Weekly in April 2022, noting that Bruce is “blessed to have them” around. “They’re all pulling together, and that’s what matters.”
Heming Willis, meanwhile, wrote in her Sunday Paper article that hopes she and her loved ones will continue to find “joy in the small things” and “in coming together to celebrate all the moments life has to offer” despite the harder days.
“I know I still have so much to learn about FTD, this community, and how research on the disease is evolving. But I’m finding my footing,” she said. “As much as I grieve this experience daily—as I know so many others do—I also know that it has made me stronger than I ever thought possible.”