Emma Heming Willis has opened up about how she and her husband, Bruce Willis, have developed a unique way of communicating amidst his ongoing dementia challenges.
In 2022, the 70-year-old Die Hard actor was diagnosed with aphasia, a condition that affects the brain’s ability to process language, impacting both speech and writing, according to the Mayo Clinic.
A year later, Bruce Willis received a diagnosis of frontotemporal dementia (FTD), a rare and slowly progressing form of dementia that affects behavior, personality, and language.
As a result of this incurable neurodegenerative disease, Bruce stepped away from acting, with his last role being in Jesse Atlas’ Assassin, alongside Dominic Purcell and Nomzamo Mbatha.
Emma, who has been married to Bruce since March 2009, discussed her husband’s language challenges in an interview with The Times.
The model shared that they no longer communicate in traditional ways but have created their own personal method of interaction.
“Bruce and I now have our own language, our own way to be with each other,” she shared.
“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.”
She went on to describe FTD as a ‘hard’ and ‘unkind disease’ affecting their family.
“It constantly takes. Even when you think it can’t take any more, it takes a little more,” she explained.
Emma’s book, The Unexpected Journey: Finding Strength, Hope and Yourself on the Caregiving Path, was released on September 11 through HarperCollins. It recounts her experiences caring for Bruce over the years.
The memoir is described as a ‘deeply personal and richly compassionate supportive guide’ for caregivers who are helping loved ones with dementia while also taking care of themselves.
In an excerpt shared by US Weekly, Emma discussed the decision for Bruce to move into separate living quarters with 24-hour care.
This announcement was first made during Emma and Bruce Willis: The Unexpected Journey – A Diane Sawyer Special, aired on August 26.
Emma expressed that the decision, though ‘painful’, was in line with what she believed Bruce would want.
“Even though they’d lived with his disease for so long that they understood, and even though this decision ensures Bruce’s overall well-being and safety and allows our young children to thrive, it was an uncertain and painful time for us,” she wrote.
“It’s still painful for me. After all, this is my husband, and having him in another home was not part of the future we’d mapped out together. You really can’t dream this stuff up.”
The book also details how they explained to their children, Mabel, 13, and Evelyn, 11, that their father would be living separately.
“‘We’ve come to a point in Daddy’s disease where the care he requires is changing. It has to be more tailored to his every need,’ I told them. ‘And you should be in a home that is more tailored to your needs now.’
“‘Also, Daddy would want you to have playdates, sleepovers, and more freedom than you’ve been able to have here. That would make him so happy.’”
Emma added that Bruce’s new home stores personal items like toys, arts and crafts materials, bathing suits, pajamas, and games, and that their children can visit him anytime they wish.
The Unexpected Journey: Finding Strength, Hope and Yourself on the Caregiving Path is now available for purchase.