Emma Heming Willis has opened up about life as a caregiver for her husband, actor Bruce Willis, who was diagnosed with frontotemporal dementia (FTD) nearly three years ago. In an interview featured in ABC’s special Emma and Bruce: The Unexpected Journey, she revealed that the couple now lives in separate homes to better meet his care needs.

Calling it “one of the hardest decisions” she has ever made, Emma explained that the arrangement was designed with their two young daughters in mind. “I knew, first and foremost, Bruce would want that for our daughters,” she said. “He would want them to be in a home that was more tailored to their needs, not his needs.”

Willis, 70, has remained in specialized care as the disease affects his personality, behavior and language, though Emma said he remains physically healthy. “The language is going, and we’ve learned to adapt. We have a way of communicating with him, which is just a different way,” she added.

Visiting Bruce twice a day

Emma visits Bruce twice a day and described his residence as “a house that is filled with love and warmth and care and laughter.” She noted how many of the actor’s friends continue to spend time with him, saying, “It’s been beautiful to see that, to see how many of Bruce’s friends continue to show up for him, you know, they bring in life and fun.”

Before moving into separate homes, Emma had limited playdates and sleepovers for their daughters to keep the environment calm, believing that noise could worsen Bruce’s condition.

Emma has also authored a new book, The Unexpected Journey: Finding Strength, Hope and Yourself on the Caregiving Path, aimed at helping other families caring for loved ones with dementia. According to estimates, care for FTD patients can cost about $120,000 annually, and life expectancy is typically five to eight years after diagnosis.

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