Emma Heming Willis’s 50th birthday may have been a major milestone, but it wasn’t entirely a celebratory occasion for her.
The former model and entrepreneur turned 50 on June 18 but felt guilty for celebrating as her husband Bruce Willis, 74, continues to suffer from frontotemporal dementia.
In February 2023, the “Die Hard” star’s family said his aphasia, first disclosed in 2022, had progressed to frontotemporal dementia, which represents a group of brain disorders that primarily affect the frontal and temporal lobes of the brain, according to the Association for Frontotemporal Degeneration. Those parts of the brain are generally associated with personality, behavior and language, Mayo Clinic states.
In a Wednesday, Aug. 5 episode of the “Making Space” podcast, the “Unexpected Journey” author said she has “not really been in the celebratory feelings of late.”
“I was unsure if I really wanted to do anything,” Heming Willis told host Hoda Kotb. “But I had a friend of mine who kept sort of pushing and saying, ‘You know what? You don’t wanna miss out on your 50th. You have to celebrate in some form or fashion.’ And I really sat with that, and I thought about it. And I thought, ‘You know what? I don’t wanna look back and think, why didn’t I celebrate 50?'”
And so Heming Willis honored the event with a “lovely” party filled with friends, tacos and a margarita, though she said she struggled to fully enjoy the moment.
“I always wrestle with it, you know?” she added. “I think guilt is something that I am always carrying, but I’ve learned that it is really not helpful. What I know is I always go back to what would my husband want for me?”
Heming Willis said she knows in her heart that the “Pulp Fiction” actor would want her to have a “big fun bash” with friends and family.
Emma Heming Willis details caregiving journey in new book
In her book, “The Unexpected Journey: Finding Strength, Hope, and Yourself on the Caregiving Path,” which was published in September, Heming Willis advocates for the support caregivers need in the United States.
“I didn’t know anything about caregiving prior to becoming a caregiver,” Heming Willis previously told USA TODAY. “I didn’t really know much about FTD until I needed to know about FTD. And you’re just thrust into this seat, and you have to figure out so many things so quickly in real time, and then you figure it out, and then you’re stable, and then all of a sudden, the next shoe drops.”
Following Willis’ diagnosis, Heming Willis said that she was handed a pamphlet and sent on their way without guidance on what resources were available for people with primary progressive aphasia.
“That was really surprising to me, that here we are with the diagnosis, and all we’re going to get is a check back in a couple of months, and nothing else. And I’m thinking to myself, how are we walking out of this office like this with no support?” she added.
She continued: “Once we had the diagnosis, I was like, I have to be able to figure this out so I could save our family, because we were really struggling. And through that, I found specialists and experts to be able to help me so that I could help Bruce and as well help our two young children to navigate this in the healthiest way possible.”
The couple, who have been married since 2009, have two children. Willis also shares three daughters with his ex-wife, Demi Moore.
In an episode of the “Conversations with Cam” podcast, released Jan. 28, Heming Willis said she is grateful that Bruce is not aware that he has dementia. “I think that’s the blessing and the curse of this. Bruce never tapped in. He never connected the dots that he had this disease, and I’m really happy about that. I’m really happy that he doesn’t know about it,” she said.
Contributing: David Oliver, USA TODAY