For the first time, Emma Heming Willis is sharing her journey as a caregiver to Bruce Willis.
“Dementia is hard,” Heming Willis said on TODAY. “It’s hard on the person diagnosed, it’s also hard on the family. And that is no different for Bruce, or myself, or our girls. When they say this is a family disease, it really is.”
Heming Willis shared it is unclear if her husband is aware of his condition.
“It’s hard to know,” she said.
In March of 2022, Bruce Willis’ family publicly revealed that he had been dealing with aphasia, leading him to step away from acting.
In February 2023, Bruce Willis’ family shared another update on his health. This time, they revealed that his condition had “progressed,” and he’d been diagnosed with frontotemporal dementia.
“It can affect speech, behaviors, personality and what we call executive functioning,” Dickinson said, referring to skills that help to plan ahead and achieve goals.
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“What we’re really talking about is unexplained changes in how a person is in the world. So, somebody who normally speaks absolutely fine has trouble putting their thoughts into meaningful sentences, or they may lose the meaning of a specific word,” she said, adding that all of a sudden struggling with finances, having problems at work, “making poor decisions or (not) completing tasks” can also be signs.
Coming to terms with her husband’s diagnosis was “the blessing and the curse,” Heming Willis said on TODAY. “To finally understand what was happening so that I could be into the acceptance of what is — it doesn’t make it any less painful, but … just being in the know of what is happening to Bruce makes it a little easier.”
Heming Willis also shared that she refers to herself as a “care partner” than a caretaker.
“It’s important for care partners to look after themselves so that they can be the best care partner for the person they’re caring for,” she said.
She added her husband is “the gift that keeps on giving,” and that he’s taught their two daughters, Mabel and Evelyn, traits like “love, patience and resilience.”
“It’s teaching them so much and how to care and love, and it’s really a beautiful thing amongst the sadness,” Heming Willis said.
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For guidance and resources regarding frontotemporal dementia, diagnosis, care and support, contact AFTD’s HelpLine at 866-507-7222 or by email at info@theaftd.org.