Emma Heming Willis, THE UNEXPECTED JOURNEY: Finding Strength, Hope, and Yourself on the Caregiving Path

Summary

Totally Booked with Zibby:

Emma Heming Willis – THE UNEXPECTED JOURNEY: Finding Strength, Hope, and Yourself on the Caregiving Path

Air Date: September 15, 2025
Guest: Emma Heming Willis
Host: Zibby Owens

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Episode Overview

In this heartfelt and insightful episode, Zibby Owens sits down in person with Emma Heming Willis to discuss her debut book, "The Unexpected Journey: Finding Strength, Hope, and Yourself on the Caregiving Path." Emma recounts her experience as the wife and caregiver to actor Bruce Willis following his diagnosis of frontotemporal dementia (FTD). She shares emotional stories, practical advice for caregivers, and thoughtful perspectives on navigating ambiguous loss, advocacy, family life, and self-care. Emma’s honesty and vulnerability make this episode an invaluable listen for anyone facing caregiving or personal adversity.

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Key Discussion Points & Insights

1. The Unplanned Caregiving Role (04:21–06:21)

• Zibby highlights Emma’s authenticity, compassion, and the unexpectedness of her journey from glamorous public life to caregiver and advocate.
• Emma candidly expresses the intensity of becoming "an unexpected caregiver" and how no one is prepared for such a life twist.
• Memorable story: After speaking at an FTD conference in Amsterdam, Emma is emotionally overwhelmed and describes the exhaustion and vulnerability inherent in caregiving.

“I just remember being in that room, I was sitting in the back and I was just watching these new caregivers... I walked out of there just sobbing.” — Emma Heming Willis (07:26)

2. Caregiver Self-Care & Boundaries (08:42–10:08)

• Emma emphasizes the book’s main message: caregivers must look after themselves to effectively care for others.
• She shares her wake-up call upon learning that caregivers sometimes die before their patients—a sobering statistic from Bruce’s neurologist.
• Discusses the struggle women face in prioritizing self-care as they often put their families’ needs first.

“It’s important to be able to be honest with them [her daughters]... It’s important to be honest with them.” — Emma Heming Willis (11:37)

3. Parenting & Honesty With Children (10:08–12:18)

• Emma includes her children in the conversation about Bruce’s illness, trying to model vulnerability and honesty in parenting under duress.
• She shares that her daughters, even at a young age, have become advocates for her self-care.

“Mom, you have to get out and touch the grass.” — Emma relaying a moment with her daughter Evelyn (10:49)

4. Navigating Community & Public Scrutiny (13:48–15:25)

• Addressing the challenges of living such a private struggle in the public eye, Emma reflects on the judgment caregivers face—both from others and themselves.
• She recognizes the pressure that comes from being a public family and the reality that, regardless of personal circumstances, caregivers are often second-guessed.

“Caregivers, at the end of the day, they do get judged, and it’s so sad because we’re already judging ourselves.” — Emma Heming Willis (15:17)

5. Ambiguous Loss & Ongoing Grief (15:35–17:09)

• The conversation touches on Dr. Pauline Boss’s concept of “ambiguous loss”—grieving a loved one who is physically present but psychologically altered.
• Emma describes the unending nature of this grief and the importance of processing it openly with others who understand.

“It’s not that you grieve and you continue to move on. It’s a process.” — Emma Heming Willis (16:17)

6. Coping With Change & Finding Joy (17:12–19:37)

• Emma recalls what she misses most about “the old version” of Bruce—companionship, humor, and shared routines—but asserts there can still be joy after diagnosis, just in different forms.
• Zibby and Emma discuss the strength and adaptability both adults and children discover when circumstances change.

“We find a way just to continue to put one foot in front of the other. And I think that’s incredible.” — Emma Heming Willis (20:05)

7. Motivation for Writing the Book (27:01–29:42)

• Emma explains the impetus for the book: the lack of a roadmap or immediate support after her family’s diagnosis.
• She points out that her access to experts was a privilege and wants to make hard-won knowledge available to everyone in need.
• The book is designed to be actionable and accessible—a true handbook for caregivers.

"Anytime I’m about to go do something, I’m like, what have I gotten myself into? Because public speaking is just so hard for me. It’s not my favorite thing... Bruce would always tell me: Emma, you gotta get out of your own way." — Emma Heming Willis (28:45)

8. Blended Family, Advocacy & Decision-Making (31:08–32:27)

• Emma talks about the challenge of sharing Bruce’s story publicly while protecting his dignity and honoring their family’s privacy.
• She stresses that the book, while rooted in her personal journey, aims to support millions of caregivers beyond her own family’s story.

9. Connection as Self-Care (33:05–35:01)

• Today's self-care for Emma is rooted in advocacy and connecting with fellow caregivers—helping others is what gives her hope and purpose.
• She admits she spent too long in isolation and values honesty and community now more than ever.

“We are only as sick as our secrets.” — Emma Heming Willis (34:08)

10. Memories, Regret, and Embracing Life (35:01–38:36)

• Reflects on a poignant trip to Japan with her daughters, remembering dreams she and Bruce had together, and the process of redefining what “normal” now means.
• She wishes she could advise her younger self to “just have some grace... You’re going to be okay,” and focuses now on embracing life fully.

“I think he [Bruce] would be so proud. He was always my biggest cheerleader.” — Emma Heming Willis (38:07)

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Notable Quotes & Memorable Moments

• On authenticity:
  “When you are navigating this journey with someone who has dementia and it’s someone that you love, you just want to just wrap your arms around them and just care for them as best as.” (05:20, Emma)

• On advocacy:
  “I just have to. Bruce would always tell me, Emma, you gotta get out of your own way.” (28:48, Emma)

• On judgment:
  “Caregivers get judged... and it’s so sad because we’re already judging ourselves.” (15:17, Emma)

• On ambiguous loss:
  “It’s not that you grieve and you continue to move on. It’s a process.” (16:17, Emma)

• On secrets and isolation:
  “We are only as sick as our secrets.” (34:08, Emma)

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Timestamps for Important Segments

• Emma’s unexpected role as a caregiver: 04:21–06:21
• Caregiver self-care and boundaries: 08:42–10:08
• Talking to children about illness: 10:08–12:18
• Judgment of caregivers/public scrutiny: 13:48–15:25
• Ambiguous loss and grief: 15:35–17:09
• Adapting and coping with change: 17:12–19:37
• Why write a book?: 27:01–29:42
• Deciding what to share publicly: 31:08–32:27
• Self-care now rooted in connection and advocacy: 33:05–35:01
• A Japan trip and embracing the present: 35:01–38:36

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Tone and Atmosphere

The conversation is frank, empathetic, and full of warmth. Emma’s openness about vulnerability, grief, and resilience provides comfort and clarity for caregivers. Zibby’s questions are supportive and sensitively probe practical and emotional realities. The overall tone remains hopeful and empowering, despite the heartbreaking context.

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Summary Takeaway

Emma Heming Willis’s journey as a caregiver for Bruce Willis provides a roadmap for others, offering both practical tools and emotional solidarity. Her book—and this conversation—stands as a reminder that caregiving is not a burden borne alone, and through honesty, self-care, and community, even the hardest paths can be walked with hope and dignity.

Transcript

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Hi, this is Zibby Owens and you're listening to Totally Booked with Zibby, formerly Moms don't have time to Read books. In my daily show, I interview today's.

Latest best selling, buzziest or underrated authors.

And story creators whose work I think is worth your time. As a bookstore owner, publisher, author, and obviously podcaster, I get a comprehensive look at everything that's coming out and spend my time curating the best books so you don't have to stay in the know, get insider insights and connect with guests like I do every single day. For more information, go to zibbymedia.com and.

Follow me on Instagram ibbeowens.

Emma Heming Willis is the author of the Unexpected Finding Strength, Hope, and Yourself on the Caregiving Path. Emma and I recorded this in person, which was super fun. Emma Hemming Willis is a mother, stepmother, wife, advocate, and co founder of Make Time Wellness, a brand devoted to women's brain health. After her husband, Bruce Willis, was diagnosed with frontotemporal dementia, she became a passionate voice for care partners and families navigating neurodegenerative disease. Through her storytelling and advocacy, Emma hopes to help others feel less alone on the caregiving journey. This is her first book.

Welcome Emma.

Thank you so much for coming on Totally Booked to talk about the unexpected journey finding strength, hope, and yourself on the caregiving path. And it's your pub day. So congratulations.

[Emma Heming Willis]

It's my pub day. Thank you so much. Thank you for having me on. And it's my pub day.

[Zibby Owens]

Yay. You've had quite a pub day. This is like not the normal pub day going on all the shows all around. How has that been for you?

[Emma Heming Willis]

It's definitely been a whirlwind, but I'm so. I'm just so grateful for the interest in this book because I just feel like it's such an important topic. So I am thrilled that, you know, with just the rollout of this whole thing and I just want to get in as many hands as possible.

[Zibby Owens]

I think you're going to accomplish that. I have no fear. But the mission of your book is so giving and you can tell from the way you tell about your love affair with Bruce Willis and you're giving back and your mothering and all of that, that you could do this from such a good place, and that's not always the case. So this authenticity is just, it's so amazing.

[Emma Heming Willis]

Oh, thank you so much. Thank you. It hasn't been an easy journey, but, you know, when you are navigating this, this, you know, journey with someone who has dementia and it's someone that you love, you just want to just wrap your arms around them and just care for them as best as.

[Zibby Owens]

So one of my favorite parts of your story, and your story is very public, that Bruce Willis has frontotemporal dementia.

[Emma Heming Willis]

You can call it ftd. It's ftd. It doesn't roll off the top.

[Zibby Owens]

And you have become an unexpected caregiver for a life that was not what you had planned. Nobody plans this, of course. And you've had to adapt in so many ways and you've become a spokesperson on top of everything else, as if you didn't have enough on your foot. I mean, my gosh, you're like a glutton for punishment. But you have one scene where you've just spoken at a conference and you go backstage and you're like, this is so hard. And you just cried with some other woman, I think. Tracy. Yeah, tell me about that. And just the pressure on all sides.

[Emma Heming Willis]

Yeah, I had gone to this FTD conference, this research conference with scientists and clinicians, and this was in Amsterdam and there was, you know, 750 people in attendance. And this, this event happens every two years. And what's so great about it is that it brings together all these researchers to just share sort of new findings in ftd because, you know, there, there hasn't been a lot, but I flown out to this event to be able to be there. I was a keynote speaker, I was on a panel, and I was participating in the Caregivers Day just to be there with other caregivers. And it's a four day event, it's a lot. And I just remember on the third day I went into, it was a breakout room and this really incredible advocate, her name is Katie Brandt, was just giving this really incredible presentation and she was speaking to new FTD caregivers. And I just remember being in that room, I was sitting in the back and I was just watching these new caregivers just hanging on to every single word that Katie was saying and just writing down note after note after note because those early stages of FTD are so complicated and they are so hard. And I walked out of there just sobbing. And I met with another researcher, Tracy, and she was like how are you doing? And I just completely broke down and that was actually the end of my. I was supposed to stay one extra day and I was like, I just can't do it. I think I've reached my max. And that was what that scene in the book was, was that it just becomes, it does become heavy. And I am navigating this in real time and you know, I'm trying to advocate and learn how to do that, but I also have to like make space for myself because I am human, you know, having a very human experience and just trying to just be mindful and, you know, just care for myself a little more. That maybe four days is maybe too much, but maybe now I know I can do two days. And, you know, you just kind of learn to sort of know what your bandwidth is.

[Zibby Owens]

Well, throughout the book you talk about taking care of yourself is one of the main priorities. In fact, that's one of the goals of the book, is to encourage caregivers to, to make time for them, eat right, do the things that they will, survive longer and be able to care for the people that they love. So I feel like that is such a good example of you just walking the walk, which is really great.

[Emma Heming Willis]

Yeah, I mean, you just have to sort of see what your limits are and you don't know until you know. But yeah, that is like the main theme of this book about, you know, caregivers realizing that if they don't care for themselves, that it is going to be really hard to continue to care for their person the way they want to and to be able to sustain the journey. So I didn't know that early on, you know, I wasn't, I definitely wasn't caring for myself. I was putting my husband's needs above mine, our children's needs. I mean, that's also what we do as women, right? Like, and I had spoken to Bruce's neurologist and he had told me about this statistic of caregivers passing before their loved ones. And that really just shook me to my core because I had never heard that before and it was my wake up call. So my hope is that in this book there are a couple of wake up calls to caregivers so that they really can learn that caring for themselves isn't selfish, but it's self preserving.

[Zibby Owens]

I love that. And actually your kids became advocates for this as well, which I loved. And you wrote about this. There was one moment, let me just get it right, where one of your daughters said, mom, you have to get out and touch the grass, which I just loved. And that you also say. You said, you know, sometimes you feel badly about parenting through this crisis. Of course. How does anybody know? And you said, I also let the girls know. Is it okay if I read from this? I also let the girls know that I've never been a parent before. And the scenarios and situations I'm navigating as a parent and caregiver are all new. I feel like I'm making it all up as I go. That allows them to understand that I am human and I'm not on some parental pedestal.

[Emma Heming Willis]

So.

[Zibby Owens]

So I don't have that far to fall.

[Emma Heming Willis]

Yeah, that's true.

[Zibby Owens]

I love that.

[Emma Heming Willis]

That's true. Yeah. No, my girls can see when I am wound tight. And that was Evelyn, who was like, mom, please just get out and touch some grass. Like, you need to get outside. And I'm like, no, you're right. You're absolutely. And you need to be sometimes reminded, unfortunately. So it was by my 11 year old, but it was a healthy. It was a healthy reminder. But, yeah, I mean, they are doing the best they can in an impossible situation. And, you know, I have a chapter in there about parenting while caregiving, and I really love that chapter because it was an expert that I had worked with who helped me to just learn how to communicate with our daughters and be able to, you know, bring them through in just the healthiest way. And, you know, she really breaks things down so well about, you know, when you tell them about a diagnosis, you wait for. For the questions that they might ask, and, you know, you know your child better than anyone, but, you know, then you sort of can. The point is, is that it's important to be honest. And I think sometimes, you know, my thought was like, I'm gonna lie. I'm not gonna say the whole truth. I'm gonna try and figure. But that's actually not the way to do it. It's important to be able to be honest with them. So I really love that chapter because I just think it really. The expert in there who helped me so much just really laid it out in such a. A beautiful and understandable way.

[Zibby Owens]

Well, often when people talk about the sandwich generation, they don't talk about moms with young kids at home and preteens and going through all of that. I mean, I have four kids, and that's hard without caretaking for anybody else. So the added stress of that is just a lot. And you give really great advice also at the end about what to say to kids and how to help Someone through this, which is I thought was wonderful and a bit counterintuitive. You say, don't say you've got this. It can feel dismissive because honestly, I.

Don'T always feel like I do.

Instead, what truly helps is hearing I'm here for you no matter what. You're not alone in this. And I know this isn't easy, but you're showing up with so much strength and love. So that was advice to friends, but I think it applies everywhere.

They don't.

You don't got it. Nobody. Nobody has it. And you don't have to have that sort of false encouragement, like, meet people where they are.

[Emma Heming Willis]

Yeah. And especially as caregivers, I mean, I think that we're also just like, thrusted into this role with no, no knowledge. I mean, I. For me, I didn't. I didn't know anything about caregiving, let alone dementia. So you are really just kind of learning on the fly. And sometimes I don't know if I have it. I still don't know if I have it because things are constantly shifting and changing. So, you know, even though that was for family and friends. Yes. You want your friends just to be supportive and encouraging. I think that's so important while you're going through it.

[Zibby Owens]

Wow. And you have, of course, this added stress of being in a public family, having to talk about it, not having to. Making the decision to talk about it, finding community, which you also talk a lot about in the book, which is beautiful, and how important it is for people to be on your side and. And know what's going on with you. But you face scrutiny in every action. And even in the book, you're like, maybe I shouldn't say this. I'm going to get in trouble for this. And then I saw you on GMAI being like, I knew I was going to get in trouble for talking about this.

[Emma Heming Willis]

And I was like, oh, she knew. She found that. No, I already knew. I mean, I knew by putting some of the information into the book that, you know, I was going to get judged. But it's okay. I think these are happening in families all the time where we have to make these really difficult decisions. And, you know, caregivers get judged. They really do. And I think just seeing how some of what, you know, we've put out there as a family to then see just, like, the scrutiny or judgment or whatever, I just think it's an interesting kind of, like, social experiment. Right. Where you can just see that if we're being judged for doing something that was right and safe, you know, for our. For our family. You know, imagine what it's like for others who are doing it too, as well, and just trying to. Just making the best decisions that they can. But caregivers, at the end of the day, they do get judged, and it's so sad because we're already judging ourselves. We're already hard on ourselves as caregivers, so it's really hard to hear it from others, too.

[Zibby Owens]

Well, I like that you can own your decisions and be a model of doing what's right for you and your family, because it is hard. No one knows what they'll do under stress.

[Emma Heming Willis]

Yeah.

[Zibby Owens]

You talk a lot about loss because this is such a complicated thing to deal with. We're not good as people dealing with grief as it is. And as you say in the book, it's really an ambiguous loss where he's slipping away and it's not. He's there. And you debate sort of with. I think it was with. Who was it Patty.

[Emma Heming Willis]

Oh, Dr. Pauline Boss, who coined the term ambiguous loss.

[Zibby Owens]

Yes.

[Emma Heming Willis]

Yeah.

[Zibby Owens]

So talk a little bit about that. How do you cope with the grief itself? Right. You have the caretaking, you have the grief, you have the parenting. But this is something that you have to sort of come to terms with and you have to mourn the life you thought you were going to have.

[Emma Heming Willis]

Yeah, I mean, you know, I feel like I'm consistently grieving. It's not that you grieve and you continue to move on. It's a process. And I feel like what's been so helpful for me is being able to talk about it, being able to connect with another person who's been on this journey, who understands what ambiguous loss is, to just understand just how tragic dementia is and what it takes from you and your person and your life. So being able to talk about the grief, I think is really important for people that it's so easy to want to just keep it inside. But what I tell my children, it's better out than in. It's really important to just to be open and to be. That's how you start to kind of process, you know, you start to kind of process the grief, which is forever changing.

[Zibby Owens]

Yeah.

[Emma Heming Willis]

I'm so sorry. Thank you.

[Zibby Owens]

What. What do you miss the most about the old version of Bruce?

[Emma Heming Willis]

You know, he's my best friend. You know, he. There's so much I just. You know, we were homebodies. We loved to lay in bed, watch movies, go for walks. We were. We just loved each other's company, you know, And I, and I just miss that. Like, I miss him and the companionship and our conversations and how funny, you know, just how funny and quick witted he was. There's. There's a lot. There's a lot to miss. There's a lot to miss. But, you know, we're in a new phase of our lives and it's not that it's okay, but there's still joy in our life. You know, it just looks different than it did before. And getting a diagnosis of dementia is terrible. It's like the worst of the worst. But I think it's also important for people to know that there is. There is still laughter and there is still joy and there are still new, beautiful memories to create. And that has really been what we do with Bruce today.

[Zibby Owens]

You had this one moment where your alarm went off and you couldn't remember the alarm code and you went downstairs to turn it off and you're like, why is he not getting up? And then you were like, oh, so this is what it's going to be like, he's not going to be. I know it's like sort of a funny example, but also just the little things in life are all changed.

[Emma Heming Willis]

Everything, everything, everything that you've been used to. I mean, Bruce was the one that kind of ran our whole house and did the things and organized all the stuff. And then slowly I realized, like, no, Wes is. It's my turn. Like, it's my turn to step in and, you know, run. Run the ship of our lives, which was, you know, a very, very different. But you know what, you realize that you're a lot more capable than you think. You know, I think it's important to not sell ourselves short. I think that there we can handle a lot that comes our way. And I've really seen that. You know, it's something I think that caregivers should be proud of because they take on so much and they have to change their whole angle of their life now to fit this new world that they're in. And I think that they. It's. It's just not something to gloss over. I think it's really important to realize that we are definitely stronger than we think.

[Zibby Owens]

Well, you had advice to your kids, but I think it applies to you and really to anybody. It's great advice, but your kids have gotten the cards they've been dealt and they will learn how to play them.

[Emma Heming Willis]

And they will learn how to play them.

[Zibby Owens]

It's simple. But it's so good. It's like, yes, this is what's in front of us. And they will adapt and you will adapt and we all somehow find our way through this mess.

[Emma Heming Willis]

No, we do. And that's one of the things that, like, I had heard over and over again, which just used to annoy me. No. Kids are so, so. They're so resilient. And I'm like, oh, but I don't know that if you understand this situation that we're in, I don't know if they'll, you know, bounce back from this. But you know what? Kids are really resilient. And us as adults and humans are actually really resilient. You know, there are things that you think that you're not going to be able to get through, and we do. And, you know, we find a way just to continue to put one foot in front of the other. And I think that's incredible.

[Zibby Owens]

It is incredible.

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Of your relationship and how you were kind of standoffish. Not standoffish, that sounds bad. But you were like not so into the whole thing. And you kept saying no. And he was like quite persistent, almost in like too persistent way.

[Emma Heming Willis]

Yeah, he's very confident. Very confident, Bruce. Yeah.

[Zibby Owens]

And he was like, I'm going to marry her. And you're like, I don't even want to go out on a date with you. Like, good luck. Good luck with that.

[Emma Heming Willis]

It took a while, it took a while to kind of get us to our first date. Like a couple of years actually. But I'm happy I went on that date with him.

[Zibby Owens]

Yeah. Do you ever look back, knowing where life has taken you now and think like, you would have done anything differently?

[Emma Heming Willis]

No, absolutely not. I wouldn't change a thing. I really wouldn't change a thing. I would change his diagnosis if I could. That would be something. But no, I mean, life is, you know, life has played out the way it's, it is playing out. And I'm just trying to figure it out in real time, I guess.

[Zibby Owens]

So in addition to being an advocate and trying to raise money and do all these things to cure this and raising your kids and all that, now you've added a book, which is a huge deal in and of itself. It's like, what else? I'm like, what else is coming? So how did you fit in writing a book? Why did you decide to do this? Why now at this stage? Like, what was compelling you to do this?

[Emma Heming Willis]

I mean, I realized that when we walked out of our diagnosis appointment, we left with nothing. You know, we didn't leave with a roadmap. We didn't leave with a piece of paper with some kind of like, here, you should call this person that one. That nothing and, you know, over time, I was able to put these experts and specialists around our family because we. I had some time to be able to do it. I had some resources and access, you know, and there's many caregivers out there that do not have that. And I realized that I was like, there's just so much incredible, like, wisdom and insightful information that I was gaining from these experts that I had. And, you know, I had to dig so deep for that. It wasn't like it was just there. It was that I really had to go and. And find it. And I knew I was holding on to something that was really valuable. And I knew I wanted to put it into a book and be able to share it with the next caregiver, because caregivers are not supported. I mean, they just are not. And I know that because I've been there and I've seen it, and I've seen. I see what that looks like. So this was just a way for me to be able to pay it forward. And I have to say, like, that book wrote itself. I knew. I knew what I wanted to say. I knew my experts. I knew how valuable the things that they were teaching me. And I just. I hate to say it. It wasn't a hard thing to write. Does that sound crazy?

[Zibby Owens]

Okay.

[Emma Heming Willis]

Does that sound crazy?

[Zibby Owens]

It really.

[Emma Heming Willis]

No part in that process of putting that book together was it difficult. Like, it just flowed.

[Zibby Owens]

And now that you're doing all this publicity and you're gonna have to do all this stuff for the book, you don't ever feel like, why did I step into that?

I literally say that all the time.

[Emma Heming Willis]

I'm like, what have I gotten myself into? I literally just wanted to write a book, a roadmap that would help someone. Someone else. I didn't realize that there was a whole song and dance that goes along with it. I was like, no, the book will just let it come out and, like, let it speak for itself and, you know, it'll do what it's going to do. No, I didn't realize that that's not what you do. So anytime I'm about to go do something, I'm like, what have I gotten myself into? Because public speaking is just so hard for me. It's not my favorite thing. But I just realized that this. I just have to. Bruce would always tell me, emma, you gotta get out of your own way. And this is me getting out of my own way, because I know that this book will help someone else, because it has helped me. I still refer to It, I'm still looking in it. I'll open it up and be like, oh yeah, I should need to revisit that. I haven't been doing that. I need to, you know, I need these constant reminders as well.

[Zibby Owens]

Well, you do pack in so much great information and self care, care for others. You have little worksheets. I mean, it's quite a user friendly guide for people who are probably already just so frayed and don't have the bandwidth for a lot. And you wrote it in such an accessible way that it, it just felt like someone was reaching out of hand.

[Emma Heming Willis]

I feel like caregivers are like, they're so fatigued, right? Like, and I felt like it was important for me to be able just to tell them some things so that they don't have to like figure it all out all the time. Because sometimes that's all I want. I'm like, can someone please just tell me what to do? Like, I'm sick of making the decision. So I wanted just to be able to kind of take that decision making away from the caregiver so that it's there so they can just refer to it and be like, oh, okay, this is what I should do, or this is how I should ask, or this is how I get support or whatever that might be. I just wanted to make it accessible, tangible, actionable.

[Zibby Owens]

And in terms of making decisions, I know every so often there are clips of your family together or your blended family or whatever. How do you decide what to post? I know this is sort of quite specific question, but as somebody who's like on social media all the time thinking about this, how do you decide like what's okay to post about Bruce now versus before? What would he want? What are like, who decides that? Who's in charge of that?

[Emma Heming Willis]

I think it's whoever posts. You know, it's very hard to. I think we all have our own ideas. I have mine and everyone else has theirs.

[Zibby Owens]

And what are yours?

[Emma Heming Willis]

What are mine? You know, I think I just always want my husband to look great. You know, I think for me what's important right now, it's really about this book and it's really about caring for the caregiver. And you know, obviously the story comes from Bruce, you know, that is how I am here. But again, like, I think it's even bigger than him or me. I mean this is like a caregiving journey that is happening to 63 million caregivers in, you know, the United States, 11 million of which are caregivers. To someone with Dementia. And I just try to take the focus as much as I can away from him just to be able to be like what this book is and what this book isn't. This book is not a memoir. It is not a tell all. It's a book that hopefully people will see parts of my story and be able to connect to it, but also be able to find the support that they need to be able to sustain the journey.

[Zibby Owens]

That was a very good pivot away from that specific question. You're very good.

[Emma Heming Willis]

You're the first one to ask me that. It's a hard question to. It's a hard question to answer. Yeah, that was a good pivot though.

[Zibby Owens]

That was a good pivot. You're not going to put this out, right? I don't know. I don't know. That was my favorite part. So when you think about your next part of life with the craziness of the book and everything else, like how. Give me an example. How are you taking care of you? I know there are things here and you're like meditate sometimes and do this and go for walks and exercise and all that. But like on a day like today, like what are you going to do? Just collapse? You watch tv, like what is your, what are some of your guilty pleasures when you're fried?

[Emma Heming Willis]

Oh, guilty. But you know, watching just some tv, putting on Netflix, getting into bed with like a snack, that's like a guilty pleasure I think for me. Yeah, I like, it just depends. For me right now my self care is as crazy as this sounds, is advocating is raising awareness. For me, that is sort of what really like gives me hope. It really kind of changes this dark narrative that I also have in my head too. It helps. It just steers me away from that so I can also have purpose and meaning in my life, which wasn't there. It didn't feel like it was there for a long time when Bruce was diagnosed. So right now, like I'm going into these room now with other caregivers, I'm able to connect with them. And that for me is just like, that is my self care. It's like connection. I lived in isolation for so long, there was so many smoke and mirrors that I was putting up to try and, you know, protect Bruce and our family. And I'm like, I'm over it. Yeah, I'm over it.

[Zibby Owens]

So you had such a good line about that. You said we are only as sick as our secrets.

[Emma Heming Willis]

Yeah, I love that that's true. You know, I think it's just been so freeing to be able just to be in our. In our truth of what is. And that helps me too. Like, it. It is. It. It is so helpful and. And important for me to also have a community. You know, it's. It's okay for me to be able to share my story, even though it might be. People might judge me, criticize or whatever, but there is also so much love and support out there as well. So that is who I'm speaking to. Those are the connections that I'm making. That is how I'm caring for myself now in this journey versus where I was before, which was dark, dark place.

[Zibby Owens]

And just. I don't want to keep you for too long. I'm sure you're so tired, but you talked about taking your girls to Japan and how you flashed back a little bit to when you were on the plane when you were young.

[Emma Heming Willis]

Yeah.

[Zibby Owens]

And you watched Armageddon and bald watching your future husband. Little did you know.

[Emma Heming Willis]

I know.

[Zibby Owens]

And then you came back again with them. Just like, talk about that full circle moment.

[Emma Heming Willis]

Yeah. So when I was one of my first modeling, like, my bigger modeling jobs was a contract that I got to go to Japan for a month. And like, those were the times where you would be on a plane. It was an economy. And, like, remember, we all shared, like, one television, like, in the aisle. So you'd all put your little things on, and, like, everyone's watching the same movie, like, up in the aisle. Anyway, so Armageddon was on. And I remember just, like, being so into this movie and crying, and everyone's crying next to you on the movie, watching this whole thing. And I was going to Japan, and then, you know, that was just one of my favorite places. And Bruce and I said, you know, one day we're going to take the kids back. We're going to go. He loved Japan. We were going to. We had this whole idea of where we would go, the things that we would do. And that was a trip that the girls and I did last year. And, you know, it was like a. It was a beautiful trip. It's not. Wasn't the trip that it was supposed to be. We were supposed to have Bruce there with us. But I was able to take the girls. They love. You know, they love being in Japan. They're of the age now where they can, like, appreciate the culture and the food. And so it was a reimagined trip, a different type of trip, but it was still important. And I have a photo album that I made. You know, I pulled those pictures off the cloud and, like, put them into a photo album of, you know, like, special places and things that I'm doing with the girls that, you know, was supposed to be with Bruce. But this is the world that we are navigating right now.

[Zibby Owens]

Is there anything you would say to yourself sitting there watching the big screen on the plane? Any advice you'd give to her?

[Emma Heming Willis]

Just have some grace, you know, like, just that you're going to be okay. You know, I move through the world in so much fear and anxiety and, you know, just embrace life, have fun. You know, life is so. Can just goes by in a blink of an eye, and things can. Can change so quickly. So I just think that I'm just trying to, like, enjoy things more, like taking these trips with the girls. It's so easy for us to just say, like, oh, we'll do it. We'll do it another time, or we'll do it next year, or we'll do it. No, I'm like, when we have the opportunity, we're going, we're going, we're traveling, we're whatever it might be. Because that's what Bruce would want. He would want us to just be in the world, experiencing the world and being able to show the girls the world is, you know, it's such a. Such a privilege, such a beautiful thing that I'm able to do with them.

[Zibby Owens]

And what would he say to you today, seeing you in your element?

[Emma Heming Willis]

He'd be so proud. I think he would be so proud. He was always my biggest cheerleader. Always trying to just, like, get me out there. And, you know, I think he'd be really proud of what I'm doing and how I'm using my voice because. Because he also believed in that, too. The importance of speaking for people that are unseen and to be able to do good. And I think he would be proud of that.

[Zibby Owens]

I'm sure he would. I'm so glad you have so many in your circle who are so proud of you and now the entire world who gets to hear your story. So congratulations, and thanks for taking the time to help others when it's hard enough to take care of yourself, I'm sure. So this is such an act of generosity, and I hope it will come back to you in space.

[Emma Heming Willis]

Thank you so much. I don't know how you just did this whole interview without any notes. How did you do that?

[Zibby Owens]

I'm just that good. Thank you for coming on so much. Thank you. Thank you for listening to Totally Booked with Zibby, formerly Moms don't have time to read books. If you loved the show, tell a friend. Friend leave a review. Follow me on Instagram ippyowens and spread the word. Thanks so much. Oh, and buy the books.

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[Emma Heming Willis]

Yep.

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[Zibby Owens]

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[Emma Heming Willis]

Everything.

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[Emma Heming Willis]

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[Emma Heming Willis]

Ooh, tiramisu.

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