After Emma Heming Willis opened up about being her husband Bruce Willis' caregiver during a tell-all interview, she reacted to people who shared their "loud" opinions about how she has chosen to take care of him amid his dementia battle.
While speaking to Diane Sawyer during the ABC News special Emma and Bruce Willis: The Unexpected Journey, Heming Willis, 47, shared an update about Willis' health and revealed he was living in a separate home from her and their daughters.
On Friday, August 29, she took to Instagram to explain that she waited "a few days to sort of land and breathe" before discussing the public's reaction to her interview.
"I think that they did a beautiful job with amplifying FTD awareness, as well as shining a spotlight onto caregivers," Heming Willis said in a video. "What I knew is that by sharing some of our intimate information that we would see these two camps. It would be people with an opinion versus people with an actual experience."
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After noting that she expected for people to have opinions on how she's handled her role as a caregiver, Heming Willis continued, "That is what caregivers are up against. Judgement from others and criticism from others."
The video concluded with Heming Willis sharing a quote from her upcoming book, The Unexpected Journey: Finding Strength, Hope and Yourself on the Caregiving Path.
"Nothing changes an opinion quite as powerfully as when you have an experience," she said, sharing what a therapist previously told her. "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 drove the point home by writing in the caption, "Too often, caregivers are judged quickly and unfairly by those who haven’t lived this journey or stood on the front lines of it. 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," the former model concluded.
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A post shared by Emma Heming Willis (@emmahemingwillis)
Willis, 70, was diagnosed with aphasia in 2022. The brain disorder “affects how you communicate,” according to The Mayo Clinic. “It can impact your speech, as well as the way you write and understand both spoken and written language.”
Nearly one year later, his family shared that he had been diagnosed with frontotemporal dementia. The condition is “an umbrella term for a group of brain diseases that mainly affect the frontal and temporal lobes of the brain,” per The Mayo Clinic. “These areas of the brain are associated with personality, behavior and language.”
In addition to sharing his current living arrangement during the ABC special, Heming Willis also recalled when she first noticed Willis' health was declining. "For someone who is very talkative and very engaged, he was just a little more quiet. And when the family would get together, he would kind of just melt a little bit,” she said. “It felt a little removed, very cold, not like Bruce, who was very warm and affectionate.”
Heming Willis continued, “To go in the complete opposite of that was alarming and scary.”
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