Christmas grief: Emma Heming Willis shares dementia caregiving struggles | USAEMALL.com

Christmas Day brings both joy and heartbreak for Bruce Willis’ wife.

In a deeply personal essay published on her website, Emma Heming Willis opened up about the emotional toll of navigating the holidays since her husband’s dementia diagnosis.

“For me, the holidays carry memories of Bruce being at the center of it all,” the 47-year-old wrote.

BRUCE WILLIS’ WIFE THOUGHT ‘DIE HARD’ ROLE WAS TO BLAME WHEN DEMENTIA SIGNS SURFACED

Emma Heming Willis recently wrote a deeply personal essay on her website about navigating the holidays as her husband battles dementia. (Jamie McCarthy/Getty Images)

“He loved this time of year — the energy, the family time, the traditions. He was the pancake maker, the get-out-in-the-snow-with-the-kids guy, the steady presence moving through the house as the day unfolded. There was comfort in the routine of knowing exactly how the day would go, especially since I’m a creature of habit.”

“Dementia doesn’t erase those memories,” the mother of two shared. “But it does create space between then and now. And that space can ache.”

Bruce Willis is seen here kissing his wife at the premiere of “A Good Day to Die Hard” in Berlin on Feb. 4, 2013.  (Ritta Pedersen/picture alliance via Getty Images)

In 2022, Willis’ family announced he had been diagnosed with aphasia, a condition that causes loss of the ability to understand or express speech. Nearly a year later, the family said the actor received a more specific diagnosis of frontotemporal dementia (FTD).

The Association for Frontotemporal Degeneration describes FTD as a group of brain disorders caused by degeneration of the frontal and/or temporal lobes of the brain, which affects behavior, language, and movement, according to The Associated Press. Aphasia can be a symptom of it.

The association describes frontotemporal degeneration as “an inevitable decline in functioning,” with an average life expectancy of seven to 13 years after the onset of symptoms. The progressive disease is terminal, and there’s no cure.

Emma Heming WIllis and Bruce Willis are seen here enjoying a date night in New York City in 2008, a year before they got married. (Duffy-Marie Arnoult/WireImage/Getty Images)

“Grief during the holidays can show up in unexpected ways,” wrote Emma. “It can arrive while pulling decorations out of storage, wrapping gifts or hearing a familiar song. It can catch you off guard in the middle of a room full of people, or in the quiet moment when everyone else has gone to bed.”

Bruce Willis and Emma Heming Willis tied the knot in 2009. They share two daughters. (Neil Rasmus/Patrick McMullan via Getty Images)

“I find myself, harmlessly, cursing Bruce’s name while wrestling with the holiday lights or taking on tasks that used to be his,” she wrote. “Not because I’m mad at him — never that — but because I miss the way he once led the holiday charge. Yes, he taught me well, but I’m still allowed to feel annoyed that this is one more reminder of how things have changed.”

The holidays, which once brought “uncomplicated joy,” can now arrive “tangled in a web of grief,” she said.

About 60% of people with frontotemporal dementia are 45 to 64 years old, Alzheimers.gov reported.  (Lev Radin/Pacific Press/LightRocket via Getty Images)

Emma said one of the hardest parts of the holidays as a caregiver is the expectation to make everything feel “normal,” even as she quietly mourns the life she once shared with her husband.

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The “Die Hard” actor’s family publicly shared his frontotemporal dementia diagnosis in February 2023. (VCG/VCG via Getty Images)

“We’re surrounded by images of what the holidays are supposed to look like — perfectly decorated homes, lighthearted gatherings, smiling faces captured in matching pajamas,” she reflected. “Even when we know these images are curated, they can still create a sense of failure and extra loss when our reality doesn’t match. When dementia is part of your family, ‘normal’ becomes a moving target.”

In 2022, Bruce Willis stepped away from acting after he was diagnosed with aphasia.  (Larry Busacca/VF14/WireImage/Getty Images)

“For a long time, I wanted the holidays to remain exactly as they were, as if this might protect us from what was happening,” Emma wrote. “But I’m learning that flexibility isn’t giving up. It’s adapting. It’s choosing compassion and reality over perfection. It’s understanding that meaning doesn’t live in the size of the gathering or the polish of the day. It lives in presence.”

“Grief is not a sign of ingratitude. It’s a sign of love,” she stressed.

Emma Heming Willis wrote a book, “The Unexpected Journey,” which details her experience in navigating her husband’s FTD diagnosis. (Team GT/GC Images/Getty Images)

“There’s no denying that the holidays are different now. But different doesn’t mean empty. It doesn’t mean broken. It doesn’t mean devoid of meaning. There is still connection. There is still love. There is still joy to be had. And if this season feels heavy for you, please know that you’re not alone. You’re not doing it wrong. And there is no single ‘right’ way to move through this time of year when dementia is part of your life. There is only your way. And that is enough.”

In 2023, the star’s family announced that he had been given a more specific diagnosis of frontotemporal dementia (FTD). (James Devaney/GC Images/Getty Images)

Over the years, Emma has sought guidance from doctors and experts to better understand FTD, its progression and what caregivers can do to give loved ones the best quality of life possible. She’s been sharing her findings and conversations on social media.

“I love and care for my husband so much,” she told Fox News Digital in September.

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From left: Rumer Willis, Demi Moore, Bruce Willis, Scout Willis, Emma Heming Willis and Tallulah Willis attend Demi Moore’s “Inside Out” book party on Sept. 23, 2019, in Los Angeles. (Stefanie Keenan/Getty Images for goop)

“I want him to go into this next chapter of his life being cared for and loved. But I think what has also helped me is the advocacy part of all this, being able to use my voice to help somebody else. That has been really comforting to me, to be able to share what I’ve learned along the way. I think being able to give back in any way I can has been the way for me to continue walking through this journey.”

Emma said she hopes that by going public with a private, devastating experience, other caregivers won’t feel alone in their journeys. But today, it’s about taking things one day at a time — for herself and her husband.

Emma Heming Willis is active on social media where she shares advice about being a caregiver. (Theo Wargo/Getty Images for Film at Lincoln Center)

“I’ve come a long way,” she said. “I never thought, since receiving Bruce’s diagnosis, that I would find laughter again. I think it’s taken time. I’m still learning. But I’m doing the best that I can.”