Bruce Willis’ Diagnosis Taught Emma Heming Willis an Unexpected Truth About Grief

When we think about grief, we tend to picture a clear before and after. Someone is here, and then they’re gone. But what happens when the person you love is still sitting across from you?

On The Bossticks, Emma Heming Willis joins to chat about caring for her husband, Bruce Willis, following his diagnosis with frontotemporal dementia (FTD). It’s a kind of grief many people experience but struggle to put into words. Emma says there’s a term for it—ambiguous loss.

Emma describes “ambiguous loss” (which was coined by Dr. Pauline Boss) as “grieving someone who is alive.” It’s basically the heartbreaking experience of watching a disease slowly reshape the person you know while continuing to show up for them every day. “These diseases, they take, and they take, and they take very slowly, and you are grieving different losses all the time,” Emma shares.

It’s a reality more families understand than we realize. Whether you’re caring for a spouse, parent, or someone whose health has changed unexpectedly, grief doesn’t always arrive all at once.

Emma Heming Willis on Caregiving Through Bruce Willis’ FTD

Grief doesn’t always look the way we expect

When you’re caregiving, the future you imagined can start to look different, and because there hasn’t been a definitive goodbye, people often don’t recognize what they’re experiencing as grief at all. Emma explains that caregiving often means “you are consistently in grief.” She adds, “I’ve just learned how to navigate it.”

You can feel gratitude and heartbreak in the same breath; you can also cherish the time you still have while mourning what has changed. Both things can be true at once. And for many caregivers, acknowledging that reality is the first step toward giving themselves a little more grace.

Caregiving was never meant to be a solo mission

As a caretaker, you become the scheduler, the advocate, the note-taker at doctor’s appointments, the medication organizer, the emotional support system for everyone else in the family…the list goes on. It’s a full-time job layered on top of real life, but Emma wants you to know it was never meant to fall on one person. “We need to move away from this idea that caregiving is a solo mission,” she says.

Asking for help means you’re acknowledging that one person shouldn’t have to carry the weight of an entire care plan alone. Whether it’s leaning on siblings, accepting a friend’s offer to bring dinner, joining a support group, or bringing in professional help when possible, support is necessary. “We can’t do this alone,” Emma adds.

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For people who are used to being the dependable one, that can be a hard pill to swallow. But that support helps you show up, not just for the person in your care, but for yourself, too.

Taking care of yourself isn’t selfish

Your own self-care can quickly slide to the bottom of the list. Meeting a friend for coffee can somehow trigger guilt, as though spending an hour tending to your own needs means you’re taking something away from the person you love.

Emma knows that feeling well. “Caregiving is very bad for your health,” she says. “You can’t sustain the journey of caregiving if you’re not putting yourself first.”

It’s a difficult truth to accept, especially for women who have spent much of their lives prioritizing everyone else. But caregiving requires endurance, and you can’t pour from an empty cup.

For Emma, recharging can be as simple as going for a walk or spending time with friends. You just have to recognize that your needs matter, too. It doesn’t make you less devoted.

To hear the full conversation, listen to The Bossticks wherever you get your podcasts.

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