The mother of two opens up in a new PEOPLE cover interview about the ‘hardest’ decision she’s made for her family while navigating Bruce’s dementia diagnosis
Emma Heming Willis has faced countless challenges and tough decisions while navigating Bruce Willis’ dementia journey over the last few years. But none has been as difficult as the decision to move Bruce, 70, into a separate home.
“It was the hardest thing,” Emma, 49, tells PEOPLE in this week’s print cover story, explaining that Bruce’s progressive frontotemporal dementia (FTD) disease “requires a calm and serene atmosphere.”
Emma Heming Willis People Magazine Cover.Andrew Eccles
Considered the family’s “second home,” the one-story house nearby is more conducive to Bruce’s specific needs — a quiet, comfortable and safe environment with round-the-clock care — and has allowed their daughters Mabel, 13, and Evelyn, 11, to be their high-spirited kid selves, she says.
“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.”
Quick to acknowledge how fortunate they are to have means to facilitate the new living arrangement, Emma is grateful for what it’s meant for the family. “Everything just feels a lot calmer, more at ease now,” she says.
Emma Heming Willis.Andrew Eccles
In an Instagram post shared on Friday, Aug. 29, Emma addressed commenters who raised eyebrows about the family’s personal decision, which she’d initially mentioned to Diane Sawyer in an ABC News special, Emma and Bruce Willis: The Unexpected Journey.
“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,” said Emma, who anticipated that “people with an opinion [are quick to judge] the caregiver” in situations like hers and Bruce’s.
She added in the post: “That is what caregivers are up against … Judgement from others and criticism from others.”
“Dementia plays out differently in everyone’s home and you have to do what’s right for your family dynamic and what’s right for your person,” Emma tells PEOPLE. “It’s heartbreaking to me. But this is how we were able to support our whole family, [and] it has opened up Bruce’s world.”
It’s also meant she and the kids, who keep clothes, toys and arts and crafts supplies at Bruce’s home, can steal special moments together. “I get to go back to being Bruce’s wife and the kids can be kids and there’s beauty in that and I’m so grateful for that,” she says. “I just get to be with him in these moments and that is because of this set up we have. It’s been helpful for us.”
Emma and Bruce.Emma Heming/Instagram
Emma, who is one of nearly 12 million people in the U.S. caring for a loved one with dementia, shared a quote on Instagram from her new book for caregivers, The Unexpected Journey: Finding Strength, Hope and Yourself on the Caregiving Path: “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.”
Then in a caption, she added the upside of opening up, come what may: “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.”
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