Emma Heming Willis has revealed she and her husband, Bruce Willis, have crafted their own language so they may continue communicating amid his continued dementia struggles.
The 70-year-old Die Hard icon was informed in 2022 that he has aphasia, a disorder impacting how the brain comprehends and/or formulates language. As per the Mayo Clinic, Aphasia can affect how you speak, as well as the way you write.
A year later, Willis was diagnosed with frontotemporal dementia (FTD), an uncommon, slow-developing form of dementia that causes problems with behavior, personality, and language.
Due to the development of the incurable neurodegenerative disease, the father of three retired from Hollywood. His last credit was Jesse Atlas’ Assassin, with Dominic Purcell and Nomzamo Mbatha.
Emma, who has been married to Willis since March 2009, has opened up about her husband’s language struggles in a new interview with The Times.
Bruce Willis married Emma Heming-Willis in 2009 (Instagram/emmahemingwillis)
The model explained to the outlet that the pair don’t communicate traditionally, but rather in their own unique way.
“Bruce and I now have our own language, our own way to be with each other,” the 47-year-old explained.
“It’s just about sitting with him, walking with him, listening to him as he tries to verbalise in his own language. Hearing him, validating him. You know.”
She continued, alleging the situation for the family was ‘hard’ whilst calling FTD an ‘unkind disease’.
“It constantly takes. Even when you think it can’t take any more, it takes a little more,” she added.
The model’s new book documents her thoughts and feelings after caring for a husband with dementia (Instagram/emmahemingwillis)
On Thursday (September 11), Emma’s book, The Unexpected Journey: Finding Strength, Hope and Yourself on the Caregiving Path, detailing her years caring for Willis, was released via HarperCollins.
The memoir is described as a ‘deeply personal and richly compassionate supportive guide’, designed to help caregivers ‘care for themselves while they navigate a loved one’s dementia.’
In an excerpt shared by US Weekly, Emma explained why the decision was made for the Death Becomes Her star to move out of the family home and into separate living quarters with 24-hour care.
The announcement was previously made during Emma and Bruce Willis: The Unexpected Journey – A Diane Sawyer Special, which aired on August 26.
She alleged that while the choice was ‘painful’, it was one she believed Willis 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,” Emma wrote.
Emma claimed she and her husband communicate via their own language (Instagram/emmahemingwillis)
“In fact, 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 Unexpected Journey also recalls how their children, Mabel, 13, and Evelyn, 11, were informed their dad would be living elsewhere.
“‘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 also revealed that her spouse’s accommodation is somewhere where they ‘keep personal things like toys, arts and crafts supplies, bathing suits, pj’s, and games,’ and that they were allowed to go and stay with him ‘anytime they wanted.’
The Unexpected Journey: Finding Strength, Hope and Yourself on the Caregiving Path is available for purchase now.
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