Bruce Willis’s daughter says she ‘knew something was wrong’ before his dementia diagnosis

US

Bruce Willis’s daughter has revealed how he still recognises her and “lights up” when she enters the room, as loved ones come to terms with his dementia diagnosis.

Tallulah Willis laid bare the impact the Hollywood actor’s illness has had on her family in an essay for Vogue Magazine.

The 29-year-old said she knew “something was wrong for a long time” before the family announced the Die Hard star was suffering from aphasia – a condition affecting the brain which causes speech and language difficulties – leading to his retirement.

She later learned aphasia was a feature of frontotemporal dementia (FTD) – which “chips away at his cognition and behaviour day by day”.

The Pulp Fiction actor – who shares daughters Rumer, Tallulah and Scout with ex-wife Demi Moore – was diagnosed with the progressive neurological disorder in February this year.

Willis wrote the article days after the actor’s wife, model Emma Hemming-Willis, with whom he has two daughters, Mabel, 10, and Evelyn, eight, described the “toll” on her mental health and spoke poignantly about how their time together was precious.

“It started out with a kind of vague unresponsiveness, which the family chalked up to Hollywood hearing loss. ‘Speak up! Die Hard messed with Dad’s ears,'” Willis wrote.

Later, the unresponsiveness “broadened”, she added.

“He still knows who I am and lights up when I enter the room.

“He may always know who I am, give or take the occasional bad day. One difference between FTD and Alzeimer’s dementia is that, at least early in the disease, the former is characterized by language and motor deficits, while the latter features more memory loss.

“I keep flipping between the present and the past when I talk about Bruce: he is, he was, he is, he was. That’s because I have hopes for my father that I’m so reluctant to let go of.”

Bruce and Tallulah Willis pictured at the premiere of The Whole Ten Yards in 2004 Pic: Rex
Image:
Bruce and Tallulah Willis pictured at the premiere of The Whole Ten Yards in 2004 Pic: Rex

‘My father’s condition hit me painfully’

Willis admitted she has met her father’s decline in recent years with a “share of avoidance and denial that I’m not proud of” – due to various health issues including anorexia nervosa, depression and being diagnosed with ADHD, which led to rapid weight loss and body dysmorphia.

During her own health battles, the actor was “quietly struggling”, she said.

Recalling a moment when her father’s condition “hit me painfully”, she wrote: “I was at a wedding in the summer of 2021 on Martha’s Vineyard, and the bride’s father made a moving speech.

Bruce Willis in 1999
Image:
Bruce Willis in 1999

“Suddenly I realized that I would never get that moment, my dad speaking about me in adulthood at my wedding. It was devastating. I left the dinner table, stepped outside, and wept in the bushes.”

Last spring, Willis saw her weight drop to about 84 pounds (38.1kg).

“The other night, I lay in bed thinking to myself, with an ache in my heart, what if my dad had been his full self and saw me at that size? What would he have done?

“I’d like to think that he wouldn’t have let it happen.

“Whereas my sisters and my mother have these extensive tool kits – lots of psycho-education and interpersonal skills, my dad has never been so interested in root causes, in close examination.

“Maybe he’s a stereotypical father of a certain generation in that way, a doer who, if he had understood, might have scooped me up and said, ‘This is ending now.’

“His style has always been to plug the leak even if he’s not sure why the leak is happening.

“Certainly there are benefits to examination, but there’s a beauty in his way, and I don’t think I noticed it until he was no longer capable of it.”

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Willis is now focused on recovery and her relationship with her father – whose mobility has not been affected by his condition.

“Every time I go to my dad’s house, I take tons of photos of whatever I see, the state of things. I’m like an archaeologist, searching for treasure in stuff that I never used to pay much attention to.

“I have every voicemail from him saved on a hard drive,” she said.

“I find that I’m trying to document, to build a record for the day when he isn’t there to remind me of him and of us.

“These days, my dad can be reliably found on the first floor of the house, somewhere in the big open plan of the kitchen-dining-living room, or in his office.

Read more:
Thousands more visitors to Alzheimer’s website after Bruce Willis diagnosis
Bruce Willis’ family praised for raising dementia awareness

“That office has always been a kind of window into what he’s most interested in at any given moment. Recently I found a scrap of paper there on which he had written, simply, ‘Michael Jordan’. I wish I knew what he was thinking. (In any case, I took it!)

“The room is filled with the nick-nacks he has collected: vintage toy cars, coins, rocks, objects made of brass. He likes things that feel heavy in the hand, that he can spin around in his fingers.”

Last month the actor and Moore became grandparents after Rumer announced the birth of her first child, Louetta Isley Thomas Willis.

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