Tallulah Willis has shared an insight into her dad Bruce Willis’ diagnosis of frontotemporal dementia.
Bruce was originally diagnosed with aphasia in 2022 and at the beginning of this year, the Die Hard star’s family revealed it had progressed to FTD.
While speaking to Vogue, 29-year-old Tallulah opened up about the details of her dad’s condition, when she first started noticing signs and how she's dealing with it.
She explained, “I’ve known that something was wrong for a long time. 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’”.
The Whole Ten Yards actress revealed she thought her dad had lost interest in her when he welcomed children with his second wife, but in reality, it was early signs of his disease.
“Later that unresponsiveness broadened, and I sometimes took it personally. He had had two babies with my stepmother, Emma Heming Willis, and I thought he’d lost interest in me. Though this couldn’t have been further from the truth”.
“I admit that I have met Bruce’s decline in recent years with a share of avoidance and denial that I’m not proud of. The truth is that I was too sick myself to handle it. For the last four years, I have suffered from anorexia nervosa, which I’ve been reluctant to talk about because, after getting sober at age 20, restricting food has felt like the last vice that I got to hold on to”.
Speaking about when her dad’s diagnosis really hit her, Tallulah mentioned being at a wedding and hearing the bride’s dad talking about his daughter and realising it was unlikely that she would experience the same moment.
“I was at a wedding in the summer of 2021 on Martha’s Vineyard, and the bride’s father made a moving speech. Suddenly I realised 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”.
Tallulah went on to talk about keeping as much memorabilia as she can from Bruce by saying, “Every time I go to my dad’s house, I take tons of photos of whatever I see, the state of things… I have every voicemail from him saved on a hard drive. 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”.
“Thankfully, dementia has not affected his mobility….He likes things that feel heavy in the hand, that he can spin around in his fingers”.
Tallulah went on to admit that thankfully her dad still recognises her as his frontotemporal dementia won’t necessarily mean he will lose his memory.
“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 characterised 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”.
She heartbreakingly added, “I’ve always recognized elements of his personality in me, and I just know that we’d be such good friends if only there were more time”.
