Emma Heming Willis is opening up about the criticism she’s faced while caring for her husband, Bruce Willis, as he continues his battle with frontotemporal dementia (FTD), and they live in separate homes.
The 47-year-old recently revealed in the ABC documentary Emma & Bruce Willis: The Unexpected Journey that Bruce is living in a separate home to better accommodate his needs, a decision that sparked mixed reactions from the public.
In a video shared on Instagram on Aug. 29, Emma admitted she had expected backlash once she made the choice public.
“What I knew is that by sharing some of our intimate information that we would see these two camps,” she said.
“It would be people with an opinion versus people with an actual experience.” She went on to note that those quick to judge often haven’t walked in the shoes of a caregiver, adding, “That is what caregivers are up against. Judgement from others.”
Emma, who shares daughters Mabel, 13, and Evelyn, 11, with Bruce, explained that when the criticism felt overwhelming, she leaned on her own words from her upcoming book for encouragement.
“Everyone will have an opinion, but you have to remind yourself that most don’t have the experience to back it up,” she said.
“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 continued, “The truth is that the opinions are so loud and they’re so noisy. But if they don’t have the experience of this, they don’t get a say, and they definitely don’t get a vote.”
Despite the difficult decision to make a second home for Bruce, something she described as “one of the hardest decisions” she has ever had to make, Emma stressed that it was done to create a calmer environment, especially since FTD patients can be easily triggered by loud noises.
Their daughters also have belongings in that home, and family members and friends visit Bruce regularly.
Speaking with Diane Sawyer in the ABC special, Emma shared, “It is a house that is filled with love and warmth and care and laughter. It’s been beautiful to see that, to see how many of Bruce’s friends continue to show up for him. They bring in life and fun.”
Even as she navigates challenges, Emma is holding on to the moments of connection with her husband.
“When we are with him, he lights up,” she said. “He’s holding our hands, we’re kissing him. We’re hugging him. He is reciprocating. He is into it.”
For her, that bond is enough.
“That’s all I need. I don’t need him to know that I am his wife, we were married on this day. I don’t need any of that. I just want to feel that I have a connection with him, and I do.”
