Less than two weeks before the release of her book about caregiving for Bruce Willis, Emma Heming Willis sat down with Diane Sawyer to offer "the most intimate look inside Willis' life now," per US Weekly. In the ABC News special aired Tuesday, she talks about the first sign of cognitive decline in her husband, who's now living with frontotemporal dementia: the usually warm and affectionate actor had become "cold" and "removed," which was "alarming and scary." At that stage, many FTD patients are misdiagnosed with bipolar disorder or depression, says Heming Willis, 47. In Willis' case, a brain scan revealed dementia and "it was like I was free falling."
Heming Willis also speaks about "one of the hardest decisions that I've had to make so far" in moving her husband into a one-story home separate from herself and the couple's two young daughters—Mabel, 13, and Evelyn, 11. "Bruce would want that for our daughters. He would want them to be in a home that was more tailored to their needs, not his needs," says Heming Willis, noting the family still spends "a lot" of time with Bruce and his care team, including at breakfast and dinner.
Her hope is that her book, The Unexpected Journey: Finding Strength, Hope and Yourself on the Caregiving Path, out Sept. 9, will offer a road map to other caregivers. "I really felt like I was so alone, so isolated, felt like what we were going through as a family, what Bruce was going through, was so singular," Heming Willis tells Sawyer. She says one of Willis' older daughters ultimately advised her to seek help, at which point she got in touch with a dementia care expert, who taught her the importance of self-care for a caretaker. She suggests other caretakers make a list of small, practical tasks that can be shared with others who offer assistance.
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