Emma Heming Willis shares the ‘hardest decision’ she made for her family

By Lisa Respers France, CNN

(CNN) — Emma Heming Willis is opening up about the challenges facing her husband, Bruce Willis, as he lives with frontotemporal dementia.

Three years after Willis stepped away from his career after having been diagnosed, his wife spoke with ABC’s Diane Sawyer for a special titled, “Emma & Bruce Willis: The Unexpected Journey.”

According to the Mayo Clinic, frontotemporal dementia (FTD) is an “umbrella term for a group of brain disorders that primarily affect the frontal and temporal lobes of the brain. These areas of the brain are generally associated with personality, behavior and language.”

Heming Willis told Sawyer that while Willis is mobile and generally in good health, it is “his brain that is failing him.”

“The language is going, and, you know, we’ve learned to adapt,” she said. “And we have a way of communicating with him which is just a different, a different way.”

The couple, who married in 2009, are parents to two daughters, Mabel, 13, and Evelyn, 11. Willis also has three adult daughters, Rumer, 37, Scout, 34, and Tallulah, 31, with his ex-wife, actress Demi Moore.

Heming Willis said she told their daughters early on about their father’s illness. She said she initially kept their family isolated in an effort to avoid anything that would agitate Willis’s condition, but eventually realized she needed more support.

Heming Willis said that led her to “one of the hardest decisions I’ve had to make,” which was to move Willis to a separate, one-story home where he could receive around-the-clock care.

Not that he is disconnected from the family. as Heming Willis said she has breakfast and dinner with him daily and he still maintains a loving relationship with them all.

“He’s holding our hands,” she said. “We’re kissing him. We’re hugging him.”

Heming Willis said she misses being able to talk with Willis like she used to, but knows what she would discuss with him if she could.

“Just how he’s doing, [if] he’s okay, he feels okay. If there’s anything that we could do to support him better. I would really love to know that,” she said. “If he’s scared. If he’s ever worried. You know, I just would love to be able to, just to have a conversation with him.”

The special is streaming on Hulu and Disney+. Heming Willis’s book about their family experience with FTD, titled “The Unexpected Journey,” comes out September 9.

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