Emma Heming Willis has had to adapt to life as not only a wife but as a caregiver of her husband, Bruce Willis, as he battles frontotemporal dementia (FTD). And one of those shifts is in the way they communicate.
“Bruce and I now have our own language, our own way to be with each other,” Heming Willis told The Sunday Times in an interview published on Saturday, September 13. “It’s just about sitting with him, walking with him, listening to him as he tries to verbalize in his own language. Hearing him, validating him. You know.”
Heming Willis, 47, stopped there, crying gently, according to the outlet. “I’m sorry,” she added, before going on to call FTD “an unkind disease.”
She continued, “It constantly takes. Even when you think it can’t take any more, it takes a little more.”
FTD is a brain disorder that threatens the frontal and temporal lobes of the brain, causing speech issues, emotional problems and changes in personality. Heming Willis shared, “Bruce’s disease, I believe, has given him this one grace: to not know what FTD is.”
Heming Willis is opening up about her husband’s health battle and how their family is coping with their new normal in her book, The Unexpected Journey: Finding Strength, Hope, and Yourself on the Caregiving Path, released on Tuesday, September 9.
She told The Times that there wasn’t one occurrence that marked her husband’s diagnosis, but a gradual change in behavior.
“It just wasn’t Bruce,” she said, recalling the months before they found out about his fight with FTD. “It just wasn’t the man that I married. It was like waking up with someone else.”
Willis, 70, now lives in a separate residence near the home he shared with his wife and their daughters, Mabel, 13, and Evelyn, 11. Heming Willis called the move “one of the hardest decisions I ever had to make,” but insisted to The Times that it was the right decision for Willis and their girls — allowing them to be children and giving her the chance to “get back to being his wife. And that’s such a gift.”
She added of his residence: “It’s made such a difference for more friends and family to have their own experience with him without it being my home, without me hovering, or my anxiety of how to manage the guest and their expectations, and then have to see their reactions — their sadness at what is.”
Willis also has three daughters with ex-wife Demi Moore — Rumer, 37, Scout, 34, and Tallulah, 31.
Moore, 62, and the girls have been supportive of Heming Willis’ advocation for FTD research and her devout dedication to being a caregiver for Willis.
“I really turn to my stepdaughters and Demi, and they really are helping me navigate this,” Heming Willis told The Times, adding of her blended family, “Demi and Bruce set it up for us to be able to thrive in this way, to be able to support each other.”
Heming Willis said she still shares “moments of connection” with Willis, but that she still “can’t believe Bruce has this disease.”
She concluded, “Do I think he knows, ‘Oh, this is Emma, and we’ve been married for this many years’? I don’t know what that process is for him. And when he puts his arms around me, it just feels like Bruce. It’s not different in that way. And that’s really, really beautiful and really, really heartbreaking. It’s such a loss.”
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