Who

Emma Heming Willis is a mother, step-mother, wife, advocate, and co-founder of Make Time Wellness. After her husband, Bruce Willis, was diagnosed with frontotemporal dementia, she has become a passionate voice for care partners and families navigating neurodegenerative disease. This is her first book.

What

The Unexpected Journey is the book Emma wishes she’d been handed on the day of Bruce’s diagnosis: a supportive guide to navigating the complicated, heartbreaking, and transformative experience that is caregiving for your loved one. The book weaves her personal journey as a care partner with the latest research and insights from the world’s top dementia, caregiving, and integrative experts.

Why

Emma says, “I know that no two caregiving journeys are the same, but we are connected by the same unchosen thread. It’s not an easy path for you, your loved one or your family. But I’m here to let you know that you are not alone, and, in time, you will find your footing, and a way forward.”

& We

…chose The Unexpected Journey because it is a game changer for caregivers of loved ones with dementia. Maria says the book, “comes out of Emma’s pain, which she has turned into a purpose bigger than herself. I couldn’t be prouder of her and the courage it took for her to write this. This book will help millions of families, like hers, like yours, like mine, like everyone’s. It’s a book for our time.”

It’s an SP+ Double Feature!

Emma also sat down with Maria for a brand-new episode of Life Above the Noise!

Here’s Your Exclusive Look Inside

Reframe the Journey

Sometimes people see my social media and think that I'm okay or say that I seem so strong. "I don't know how you do it," they tell me. But you know what? I'm not okay. I'm really not. And I'm not always strong. Watching someone you love lose pieces of themselves is incredibly painful and traumatic, especially someone like Bruce, who was so capable, smart, and high-functioning, and who cherished his life to the fullest. FTD is deeply unkind. It's a beast of a disease, and for Bruce, the progression has been slow every step of the way. All I can do is shake my head and remain "befuddled," as he used to say. Why him? How could this happen? What a great loss for us all.

My grief about this can still paralyze me. It's always at the surface. I still cry. I'm still shocked and remain in disbelief at this disease and at the turn our lives have taken and the things we've lost. I've noticed that sometimes I walk around with my shoulders slumped and the spring in my step is gone. I still have a hard time accepting what is, yet FTD doesn't give you many options. It can suck all the air out of a room. So I've made a choice to pump oxygen back into our lives, for the sake of our girls, Bruce, and me. And to give the middle finger to this disease.

When Bruce was first diagnosed, I was angry. I wasted precious energy fighting it and fighting it and fighting it. But the more you fight it, the harder it is, and I know who wins in the end: the disease. No matter what you do, you can't stop its progression. You can throw all the money you want at it, but it's not stopping — been there, done that. You can put all your energy into it, and it's not stopping— been there, done that, too.

Then I woke up one day and thought, I don't have a choice about Bruce having this disease, but I do have a choice in terms of how I react. I can wallow in sorrow, or I can take some power back and make the best of it for all of us. I can focus on what we have lost, or I can focus on how much I have gained, this beautiful caregiving community, and what we still have to celebrate, like our two bright, fun, and healthy daughters and a larger family unit built on mutual respect and admiration. I can let waves of negativity, doom, and constant dread weigh me down, or I can strive for peace.

I call this the remarkable reframe. Even though there is immense sadness and deep grief, I am choosing to shift my perspective. To survive this, I have to find meaning in the pain and channel it into something purposeful. I need to turn my grief into action and create good from something so profoundly difficult. I need to find joy. I have a calling and need to help others. I know Bruce would want me to do that, and I know my girls need to see that. Standing up to FTD in this way has been empowering and healing to a certain degree. We only get one life, and we can't allow this disease to take all of it.

Look, as caregivers, we don't have much agency in terms of when or how dementia comes into our lives, but we have agency in terms of which lens we view it through. We can choose to be angry, sad, and in our grief all the time (and trust me, there are days when that's exactly what I feel like doing). Or we can break up our doom-and-gloom thinking. Yes, caregiving is hard, stressful, and scary. Yes, we are alone in so much of what we do day by day, hour by hour. But reframing this journey can make it a little lighter and brighter, especially if you have children or other people traveling it with you.

This remarkable reframe isn't about just thinking positively, and I hope it doesn't come across as toxic positivity because I don't subscribe to that— especially on this serious and heavy road as a caregiver. For me, it's a way of looking at this caregiving journey that feels empowering, one that makes space for the hard stuff but also leaves room for the moments of meaning and connection that can come from this experience. As we learned earlier, it's something Dr. Pauline Boss calls "both/and thinking." Both can and do exist: the sadness and constant grief, as well as the beauty that unfolds. We can choose to make this journey horrific and terrible, which it is, and it can also be joyous, and there can be happiness and laughter. And if you're like me and have children, nieces, nephews, or other young people watching you navigate this rough path, it's important to model the ability to reframe any obstacle that comes your way.

This isn't the life I imagined, and it's not what I'd choose for us. But this is what has been presented to our family, and I have dedicated myself to walking Bruce and our young girls through it the best way that I can. I'm learning how to live alongside FTD, which is truly a balancing act.

Look, I know it's not always easy to do this. The tunnel can feel very dark, lonely, and scary. I know that because I have been there. I'm still there. But there are cracks of light along the way that I can't ignore, and because I have faith in the process, I trust there is something bright and glorious at the end. So I'll keep walking toward it. I need to, in order to show up for our two daughters in the healthiest way and honor my husband and myself while I'm on this earth.

And let me acknowledge this: You might not be at the point where you can reframe this journey yet. If that's the case, I get it. Honestly, there was a time during this experience when I would not have been ready to hear about reframing either. But my hope is that you will be able to revisit this chapter in time when you're ready. I never thought I'd be here, but I am. And although it's not a straight line, there are days when I'm still pissed and unable to reframe, it does get better.

From THE UNEXPECTED JOURNEY by Emma Heming Willis, published by The Open Field, an imprint of Penguin Publishing Group, a division of Penguin Random House, LLC. Copyright © 2025 by Emma Heming Willis.

Audio excerpted courtesy of Penguin Random House Audio from THE UNEXPECTED JOURNEY by Emma Heming Willis, read by Emma Heming Willis. © 2025 Emma Heming Willis, ℗ 2025 Penguin Random House, LLC. All rights reserved.