By Kayla DeKraker
As Bruce Willis’s dementia progresses, his family made the difficult decision to move him into a separate home.
“It was the hardest thing,” his wife, Emma Heming Willis, said of transition. “We have two young children, and it was just important that they had a home that supported their needs, and that Bruce could have a place that supported his needs…The kids can have playdates and sleepovers [again] and not have to walk around tiptoeing.”
Heming Willis took to Instagram last month to address judgement she and other caregivers face when making difficult decisions like this for their families.
“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. That’s who I share for and so I can build a deeper connection with a community that understands this journey.”
Related: Bruce Willis ‘Not Totally Verbal’ But ‘Still Bruce,’ Friend Says
People flocked to the comment section with support for Willis and the family.
“Only you and your family know what is best for your situation and I would imagine that even for you, it is a daily learning experience that is full of unknowns,” one person said. Willis’ daughter Tallulah, who he shares with ex-wife Demi Moore, commented, “I love you so much. We love you so much. Thank you for all you do for us and our family.”
Willis was diagnosed with Frontotemporal dementia in 2023. Theaftd.org website explains, “FTD brings progressive changes to personality, language, decision-making, behavior, and movement. FTD is actually a group of diseases affecting the same brain regions. These include behavioral variant FTD, primary progressive aphasia (PPA), corticobasal degeneration, progressive supranuclear palsy, and FTD/ALS.”
In a video posted to YouTube, Heming Willis explained that her husband has the variation of the disease related to speech.
“It’s just very hard to sort of pinpoint and especially for the diagnosis that Bruce has, which is primary progressive aphasia, which is a subtype of FTD,” she explained. “FTD can affect people in different way. There’re three different subtypes. There’s one that affects behavior. There’s one that affects speech, and then there’s another one that can affect movement. So for Bruce, it was speech.”
Her upcoming book, The Unexpected Journey: Finding Strength, Hope and Yourself on the Caregiving Path, will help other caregivers in similar situations.
“Born from grief, shaped by love, and guided by purpose, this is the book I needed back when Bruce was first diagnosed and I was frozen with fear and uncertainty,” Heming Willis wrote on Instagram. “This is the book I trust will help the next caregiver. It is filled with support, insight, and the hope needed to navigate this journey.”
It releases Sept. 9.
Though life has changed for Willis, his wife and family continue to support him and love him.
Read Next: Bruce Willis’ Family Opens Up About His Dementia Battle
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