Emma Heming Willis on Bruce Willis, Caregiving, and the Diagnosis She Never Saw Coming

Summary

The Tamsen Show: Emma Heming Willis on Bruce Willis, Caregiving, and the Diagnosis She Never Saw Coming

Host: Tamsen Fadal
Guest: Emma Heming Willis
Release Date: November 12, 2025

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Episode Overview

In this powerful and deeply personal episode, Tamsen Fadal sits down with Emma Heming Willis—model, entrepreneur, caregiver, and wife of Bruce Willis. Emma opens up about Bruce’s journey with frontotemporal dementia (FTD), her own transformation into a full-time care partner, and the often-untold hardships and lessons of caregiving. Emma shares insights from her new book, The Unexpected: Finding Strength, Hope, and Yourself on the Caregiving Path, and offers candid advice for families navigating similar diagnoses. Their conversation sheds light on the importance of support for caregivers, the realities of rare cognitive diseases, and building resilience and community when life takes an unexpected turn.

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Key Discussion Points & Insights

1. Emma & Bruce: The Love Story and Family Foundation

[03:22–08:03]

• Emma recalls meeting Bruce at a private gym in LA, their low-key beginnings, and a gradual, unexpected romantic connection.
  • “I just thought, like, what a lovely man. Just very humble, Always asking questions about me, just, you know, wanting to know more, but never pushy.” (Emma, 04:16)
• The importance of seeing Bruce as a devoted father: “Seeing Bruce as a father, I was like, God, like, what a great dad, you know, to his three girls. And that really stood out to me.” (Emma, 07:42)
• Their blended family dynamic and the beauty of co-parenting with Bruce’s extended family.

2. Recognizing, Diagnosing, and Understanding FTD

[08:03–12:55]

• “FTD whispers. It doesn’t scream.” Emma discusses the subtle, gradual changes—Bruce’s stutter returning, off-kilter communication, and the ‘gray’ area of suspicion before diagnosis.
• The long, complicated road to diagnosis: average of three years, frequent initial misdiagnosis (depression, bipolar, “midlife crisis”).
  • “By the time you get to that diagnosis, your person is usually very sort of advanced in their disease.” (Emma, 10:09)
• Emma’s first diagnosis was aphasia (2022), later identified as primary progressive aphasia, a variant of FTD.
• The shocking lack of support post-diagnosis: “We left with no hope, no roadmap, no support, just to check back in in a couple of months because there is no treatment and there is no cure.” (Emma, 12:17)

3. The Unseen Risks and Realities of Caregiving

[15:36–17:11]

• Importance of support for caregivers: “You’re thrusted into this with no previous knowledge,” and the needs vary widely between families.
• Emma’s drive to collect resources, talk to experts, and create a guide for others.
• The caregiving crisis: Most caregivers lack time, knowledge, or access to proper resources.

4. Going Public with Bruce’s Diagnosis: Community and Stigma

[17:11–19:59]

• Emma’s initial fear and isolation vs. her ultimate decision to share Bruce’s diagnosis publicly.
  • “I realized that once we landed on this diagnosis… there could be a really, maybe, like, beautiful opportunity to talk about this diagnosis and help somebody else… I didn’t want our two daughters to think that that’s what they needed to do. You know, I said, you know, we’re not going to be… shameful about this. We’re going to talk about it, and we are going to be loud about it.” (Emma, 18:27)
• The importance of changing the narrative and removing stigma from dementia—especially young-onset cases.

5. Raising Awareness and Early Diagnosis

[19:59–22:21]

• Young-onset dementia is more common than people realize, with rising numbers.
• Public awareness linked to Bruce’s story helps families recognize symptoms sooner: “Because you guys came out and talked about FTD…I went through that checklist…now we’re getting ready to receive a diagnosis.” (Emma, 21:20)
• Early diagnosis enables participation in clinical trials—often impossible if diagnosed late.

6. Asking for and Accepting Help: Permission for Caregivers

[23:15–26:21]

• Emma admits to initially subscribing to the “do it all yourself” mentality:
  • “I’m a woman. This is my husband. This is what you do for your spouse. You know, I’m gonna be a caregiver. I’ve got this covered.” (Emma, 23:37)
• The pivotal moment: Bruce’s neurologist delivers “permission” to bring in formal help.
• Tamsen and Emma agree: the book is a permission slip for caregivers to ask for and accept help.
• “Caregiving is not a solo mission. We need to ask for help to know that we’re not a failure if we do…” (Emma, 24:30)

7. Practicals: Support Systems and Accepting Help

[26:21–28:44]

• The problem with saying “Let me know if you need anything”—be actionable, have a list, and say yes to small tasks.
• “There’s nothing too small to do—whether it’s a prescription or it’s groceries and things that we might think are ‘oh, that’s not enough.’ Those things really matter.” (Tamsen, 27:57 & Emma, 28:06)

8. Research, Expert Insights, and Self-Care

[28:44–31:28]

• Emma interviewed over two dozen experts for her book.
• Practical tips: Music benefits both the person with dementia AND the caregiver.
• Research shows caregivers who look after themselves improve outcomes for those in their care.
• The dire consequences of caregiver neglect:
  • “It was Bruce’s neurologist who told me about these statistics of caregivers dying before their loved ones. It’s like 30% of caregivers die before their loved ones.” (Emma, 29:55)

9. Building a Support Network and Community

[34:05–35:51]

• Emma is grateful for the caregiving community’s openness and peer support: “When caregivers share their stories, what we learn from each other is magical and very helpful.”
• She encourages others: “You’re not alone. There is actually support out there.” (Emma, 36:01)

10. Practical Advice for Early-Stage Caregivers

[36:01–37:14]

• Leave the doctor’s office with real resources; don’t accept isolation.
• A roadmap or single point of contact/resource (like AFTD) at diagnosis is invaluable.
• There is no one-size-fits-all approach to dementia’s progression.

11. Communication, Joy, and Resilience Amid Decline

[37:57–39:56]

• Communicating with Bruce takes new forms: “We communicate with him in our own special way that works for him, that works for us. It looks different from what the norm would be, but we’re not dealing with anything normal.”
• Emma advocates for countering the narrative that dementia is only negative.
  • “There is still so much beauty in [our life]. There is joy. We have laughter. There are things Bruce does that’s funny, and it’s not all bad.” (Emma, 39:15)

12. Expert Tips for Dementia Care

[40:33–41:57]

• From dementia care specialist Teepa Snow:
  • Avoid wearing black (appears as a “floating head”).
  • Remove black doormats (look like holes).
  • When talking, stand slightly sideways, use clear gestures instead of too many words.

13. Bruce’s Legacy and Advocacy

[41:57–44:40]

• Emma would be “okay” if FTD became known as the Bruce Willis disease if it meant more awareness, research, and support. (“If this FTD was to be called the Bruce Willis disease, because it would help with funding… I would be okay with that… and I think Bruce would, too.”)
• The Willis blended family as a model for support, love, and unity amid hardship.

14. Emma’s Hopes for Her Daughters and Other Caregivers

[45:28–46:18]

• Role modeling advocacy, compassion, and resilience: “I would hope they’ll see that, and that will filter through to them… These kids are very compassionate, very kind… They are walking through life with a little bit of a different lens.”

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Notable Quotes & Memorable Moments

• “FTD whispers. It doesn’t scream.” (Emma, 08:25)
• “We left [the doctor’s office] with no hope, no roadmap, no support… it was really traumatic.” (Emma, 12:15)
• “Caregiving is not a solo mission… we need to really look to friends, family. It’s not just like a personal issue. It’s like a societal one.” (Emma, 24:30)
• “[Caregivers] aren’t making their own medical appointments because they don’t have the time or support at home… 40% of caregivers don’t get their own care.” (Emma, 28:44)
• “There is still so much beauty in [our life]… There is joy. We have laughter.” (Emma, 39:15)
• “If FTD was to be called the Bruce Willis disease [and] it would help with funding, research… I would be okay with that. And I think that Bruce would, too, if he knew it would help the next person to feel seen.” (Emma, 42:17)

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Important Timestamps

• 03:22–08:03: Emma & Bruce’s love story & blended family
• 08:03–12:55: Recognizing symptoms, path to FTD diagnosis, initial lack of support
• 15:36–17:11: The invisible burdens of caregiving
• 17:11–19:59: Deciding to go public: battling stigma and building community
• 21:20: Real stories of families helped by Emma’s advocacy
• 23:15–26:21: The critical importance of asking for and accepting help as a caregiver
• 28:44–31:28: Research-backed practices: self-care, music, and health impacts on caregivers
• 34:05–35:51: Building caregiver community and mutual support
• 37:57–39:56: Finding joy and humor even in decline; combatting negative stigma
• 40:33–41:57: Practical expert tips for communicating and caring for someone with dementia
• 41:57: Bruce’s legacy and hopes for impact on awareness and advocacy

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Summary & Takeaway

Emma’s journey with Bruce is both a warning and a beacon of hope: it shows how isolating and frightening a rare dementia diagnosis can be, and how advocacy, community, and self-compassion can make all the difference. She underscores that caregivers are at real risk and deserve permission to care for themselves, and she spotlights the rising prevalence of young-onset dementia.

Emma’s practical wisdom, hard-earned from both heartbreak and hope, makes this episode invaluable listening for anyone facing a caregiver role—or anyone who knows someone who is. Her call for actionable support, systemic change, and empathy leaves listeners with not only a roadmap, but a sense that they, too, are not alone.

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For resources mentioned in the episode, visit the Association for Frontotemporal Degeneration (AFTD) and consult Emma’s new book, The Unexpected, for guidance and support.

Transcript

[A]

Today's podcast is sponsored by MIDI Health. I walked in with real symptoms, brain fog, exhaustion, anxiety and walked out with nothing but a suggestion to wait it out. That's why MIDI matters. They actually listen and they treat what others ignore. This is midlife care that finally makes sense. Ready to feel your best and write your second act script? Visit joinmitty.comtamsen today to book your personalized insurance covered virtual visit. That's joinmitty.com Tamsen Midi the Care Women.

[B]

Deserve this episode is brought to you by Progressive Insurance. You chose to hit play on this podcast today. Smart Choice make another smart choice with Auto Quote Explorer to compare rates from.

[A]

Multiple car insurance companies all at once.

[B]

Try [e-mail] Progressive Casualty Insurance Company and affiliates. Not available in all states or situations. Prices vary based on how you buy. We've been with Bruce every step of the way of his disease and his disease progresses and he declines. So it's not like this fast track into like, oh my gosh, he's not communicating. We're not able to have a conversation anymore. It's just been a slow burn and that's very painful to watch as well. We communicate with him in our own special way. That works for him, that works for us. It looks different from what the norm would be, but we're not dealing with anything that is normal.

[A]

We all know Bruce Willis, the Hollywood action star, the tough guy who always saved the day. The original girl dad. But behind the spotlight is a story that so many families will recognize. A few years ago, Bruce was diagnosed with frontotemporal dementia, ftd and his wife, Emma Heming Willis became his full time care partner. Right now, more than 40 million Americans are caring for somebody they love. Emma's story, though, is a reminder that it's not just the person who's sick whose health is at risk. It's the caregivers too. In her new book, the Unexpected Finding Strength, Hope, and Yourself on the Caregiving Path, she's sharing what that transformation has really been like. This book is not just her story. She has talked to some of the top doctors in the world to create the guide she wishes she'd had with real tools and research. This episode's for everybody. Because the truth is, most of us are going to step into the role of caregiver at some point in our lives. And the more we understand that, the better we can take care of the people we love and also ourselves. If this conversation moves you, please take a moment to review the podcast or leave a comment. I would love to hear what's resonating with you right now. Your reviews help more people find these stories and get the support that they need. I want to thank you, first of all, for being here. I appreciate it, and I appreciate you sharing this with so many people that I'm not sure if they even knew where to begin on this journey.

[B]

First, thank you for having me. And I also don't know that many know where to start. I think as caregivers, you're just sort of thrusted into this position, and you really have to figure things out on the fly, because caregivers are really unsupported.

[A]

If you've not done it before. Most people have not or are not dealing with something like that yet, because I think a lot of us will at some point. It's hard to imagine walking out of a doctor's office with just no roadmap whatsoever. But I want to talk to you and kind of just start at the beginning and go back to where it began, which was your love story, which is where you started a lot of this. Can you go back to that time for me? Because I think there are a lot of nuggets in there that people might not know.

[B]

I was living in Los Angeles at the time, and I was working out with this trainer, Gunnar Peterson, and he had this sort of private at home gym facility. And he'd say, you know, Bruce Willis is coming to, you know, check the place out. And I was like, okay, cool. And I'm not really, like, a big Bruce Willis fan. Like, I grew up watching Moonlighting and had seen Armageddon, but I wasn't, like, an action movie star fan anyway. So as I was wrapping up my workout, sweaty, a hot mess. And I'm walking out, and Gunner was already outside greeting Stephen and Bruce. Steven is Bruce's friend, and Gunner's like, emma, come over. I want to introduce you to these guys. And Gunner is, like, the ultimate connector. Like, he was always introducing people to everyone, and I was like, oh, boy. Okay, here I go. So I go and meet them. And over the course of that year or so, two years, Bruce and I, our gym times would kind of overlap. So I would come in, like, let's say like 9 to 10. He would be there from 10 to 11 if we were kind of in town. So over that time, I really got to know him a little bit, you know, kind of small talk, But I just thought, like, what a lovely man. Just very humble, Always asking questions about me, just, you know, wanting to know more, but never pushy. I made A comment to my mom, like, you know what? I've met Bruce Willis, and you know, what a great guy. And, like, very handsome. My mom's like, emma, you're engaged to be married? Cause at the time, I was. And then, you know, it took a while for us to go on our first date. Obviously, my relationship. We called off my engagement not because of Bruce, but just because things didn't pan out. And I, you know, Bruce asked me on a date, and I went out on a date with him, which wasn't a great first date, but he was very, like, awkward and kind of shy, and it just didn't, like, pan out well. But after that first date, we started talking to each other on the phone, which was, like, very sweet. And it felt like high school, where you'd be, like, on the phone with someone for hours. And that's kind of how I got to know him. And from there, he asked me on this other kind of big date, which was to go to the Turks and Caicos in Pariquet for the holidays, where I would be there with his ex wife or then husband, their three young children. And I was like, that is crazy. Like, why? Why would I do that? And I was like, you know what? Thank you so much. I have other plans with my friends. Ali. My friend Ali, let's pick this up in the new year. And when I told my friend Ali about Bruce's idea, and he was like, you know what? You live everything. So by the book, obviously, his intentions are fine. His kids are there. The ex wife is setting you up and own your own private villa. Like, take him up on the offer. Let's just go see what that new adventure might be. And I'm really happy that he pushed me to do that, because I normally would not have. But I really got to see another side of Bruce on that trip, which was a family man, and I really took to that. So after that started our relationship, that.

[A]

Story made me really smile, because I think at first I thought the same thing you did. I was like, I don't. I thought to myself, would I have gone? Like, I thought that was a very bold. Like, I understand your apprehension of it. And I thought that was. That's an amazing invitation for a lot of different reasons. For the fact, you know, that children were there, that ex wife was there, new husband was there. And I think it speaks a lot to you as well as him, you know, of being adults and where that ended up as a blended family that, you know, so beautifully came together.

[B]

Yeah. And being there and just Seeing what that kind of blended family is versus what the media was portraying it as, you know, I just saw a very. I just saw it from a different lens, and I just thought, like, this is so, so beautiful and so commendable. And I really love that I was able to witness it and then become a part of that.

[A]

When you see a man as a dad, does that change things?

[B]

Yeah, I think I've always wanted to have children. I. You know, I have this vision of marrying someone. White picket fence, two children. That was kind of my North Star. And seeing Bruce as a father, I was like, God, like, what a great. What a great dad, you know, to his three girls. And that really stood out to me. So, yes, it definitely made all the difference.

[A]

When you look now at when changes started to happen, you have two girls together as well. How old were they when changes started to happen or that you noticed changes starting to happen with Bruce?

[B]

Yeah. It's so hard and it's so gray for me to sort of pinpoint exactly when this disease started to come in and where Bruce stopped. And I hear that from a lot of different people on this journey as well, that it's gray, it's hard. And what I say about FTD is that it whispers. It doesn't scream. But what I noticed was that Bruce's stutter started coming back. He had a severe stutter as a child, and that started appearing again. You know, our communication just felt very off, and I felt like we were going through a lot of different kind of bumpy patches, a little more than normal, where just things that we were, like, aligned on. We weren't anymore. It's just things were just off. And it got to a point where it was so off that I just thought, there is something going on here. This is not my husband. And I just went around him and got to his doctor.

[A]

I think that's probably a really difficult thing to do. Right. Did he notice that there was anything off?

[B]

Did he feel that or no one was flagging it? He wasn't flagging it, but I just knew, and it was really hard. I mean, I didn't want to do that. But, you know, I had asked, like, are you okay? Is everything okay with us? Right. Right. And it seemed like everything was fine, but I was like, no, this isn't. This isn't right.

[A]

You know, I always think about people that are listening that might not know if something's going on. They might not be at the place that you are. What did it take for you to finally get that diagnosis for Him.

[B]

Oh, gosh. I mean, you know, what they say with FTD is that it takes an average of three years to get to that diagnosis. It's often misdiagnosed as depression, bipolar, bipolar, midlife crisis, you know, so by the time you get to that diagnosis, things are. Your person is usually very sort of advanced in their disease. It took a while to get us there. You know, it's like a workup, right? You have to go do the scans and then have it be evaluated. And, you know, and we didn't even land on ftd. Wasn't even the first diagnosis that we got. For us, it was aphasia. And that was in early 2022, which was really a symptom of a disease, which was FTD. So when Bruce was finally diagnosed in late 2022, he was diagnosed with FTD PPA, which is the subvariant or the variant of FTD, which is primary progressive aphasia that affects your language and comprehension and reading and all of that. And, you know, FTD can come out in three different ways, so either language, beh or movement. So there's three types. So for Bruce, it was the language. And as hard as it was to receive that diagnosis, it all started to just make sense once we got it.

[A]

I did think, I had no idea until I dug into the book of how many different things it affects, first of all, and what it all means. I had no understanding of that whatsoever.

[B]

I don't think anybody does until that you're faced with it. When people hear dementia, they automatically think Alzheimer's because that is the most common form. But there's like 120 different forms of dementia. And your brain does so much more than just hold memory. So each part of the brain is doing something different. And. Yeah, so you don't know what you don't know until you kind of have to.

[A]

So you say in the book that you walked out of that doctor's office with nothing but a pamphlet after that diagnosis. It's impossible to envision that that's what they leave somebody with after telling them news like that. But that is what happened. Yeah.

[B]

We left with no hope, no roadmap, no support, just to check back in in a couple of months because there is no treatment and there is no cure. Yeah, it was really traumatic because I walked out of there thinking, what is this disease? Exactly? What does it mean? What will this mean for Bruce? What kind of support will he need? What will I need? What will our two young daughters need? Because they were 8 and 10 at the time. How do I manage this? How do I figure this out? But I wasn't given any kind of resource there, which I'm you know, that book is really what came out of that traumatic experience.

[A]

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[B]

You don't know. You just don't. And you're learning on the fly. You know, again, we're thrusted into this with no previous knowledge. Or if we do, even if you do have previous knowledge, with dementia, dementia plays out differently in each person. So, you know, you really have to kind of be a little bit ahead of the curb in the sense of understanding and knowledge. But, yeah, it's playing out differently. The kind of support that one family might need might look different to somebody else. And you really have to try and figure out what is the right support system team to sort of put around your family. And, you know, we're lucky in the respect that, you know, we have access, we have resources that many don't. So as I started to figure out who were those experts, who were those specialists, and they were helping me tremendously, you know, just growing my, like, caregiving skills, understanding more about ftd, how I can support Bruce, how I can support our children, I had to dig so deep for those resources and support. And I knew that other caregivers, they don't have the time or energy to do that. No or. Nor do they have the, you know, the access. You know, sometimes it's hard just to get into the neurologist office. Could take like a year to get, you know, an appointment. So I knew with the information that I had that was helping our family, I wanted to be able to bring their expert advice and insight and wisdom and put this in this book so that it could help another care partner.

[A]

I think you're saving so many people with it. I really do. And I don't know that. I am sure that people have come up to you with their personal stories. I'm sure they do it every single day now. But just the extent to which that the help is really, really needed, you have something else on top of that. It was trying to figure out if, how, when to go public with Bruce's diagnosis. Where did that fit into all of this as you were dealing with so much trauma and dealing with two young daughters and, you know, trying to be a caretaker and then figuring that out at the same time. How do you decide that?

[B]

I think it. Part of it stemmed from this part of me being so isolated and alone and not being able to fully talk and express about what we were going through. And I was so scared to say too much because I was so worried about it just landing in the wrong hands. And the next thing you know, it's in tabloids. And so I just kept very quiet. And what I realized was that that was not helping me at all. I wasn't able to get the right support around us because I was keeping it so secretive and close to the chest. It wasn't helping anyone. And I realized that once we landed on this diagnosis, and, you know, FTD is a rare disease, but it's the most common form of dementia for people under the age of 60. And I saw that there could be a really, maybe, like, beautiful opportunity to be able to talk about this diagnosis and to be able to help somebody else, you know, maybe help somebody else, you know, be able to understand what FTD is so that they could get an earlier diagnosis. Diagnosis than we did, to be able to help another caregiver. And I just. I also, like, there's so much stigma around dementia, and so many people talk about it in hushed tones. And I didn't want our two daughters to think that that's what they needed to do. You know, I said, you know, we're not going to be. We're not going to carry any kind of shame around this. We are going to talk about it, and we are going to be loud about it. And I really wanted the girls to see this kind of reach that their father has. And, you know, he is pretty well known in America, but even past America, he's so beloved. And I knew that this could change things. It could change the space, it could change the narrative. And you know what? I'm so happy that we decided to do that, because now I'm able to connect. I have a community. I feel a little bit lighter being able to share. And it was the right thing. It was the right thing to do.

[A]

I think there's so many people that are learning a lot from hearing his story. Right. And especially because of the age of this. Cause you're right. When you think of dementia or you think of Alzheimer's, you think of somebody much, much older. You think of somebody in their 80s, beyond. I don't think you Think of it as these younger ages and how progressive it is when you're dealing with something like this at such a young age.

[B]

Yeah, I mean, I didn't know anything about a young onse dementia. I didn't know about FTD or a young onset Alzheimer's. I had no idea about that. So, yeah, I think it's important to bring it to the forefront because what's crazy now is that the amount of stories I hear about people being diagnosed with a young onset or just have gone through it and the numbers are climbing, you know, in dementia alone, I mean, I think they're saying by the year 2050 that dementia cases are going to triple. So it's very much here and it's very much present.

[A]

I wonder how many cases are coming forward now because of his story and because somebody didn't look at a symptom or said, oh, it's midlife crisis or it's, you know, stress, or somebody's tired. I wonder what we're going to see as we move forward with that. I have to imagine, yeah, I would.

[B]

Think that you will hopefully see a shift. I've met countless people that are like, just because you guys came out and because you've talked about FTD and what that looks like and what early symptoms might be, I realized that my husband was experiencing. I went through that checklist and was checking so many things off, and now we're getting ready to receive a diagnosis. And I just think that's beautiful because this family is gonna get supported earlier on, you know, because a lot of times when people get this diagnosis, families have already fallen apart, marriages have already crumbled. You know, that whole family system is destroyed because you don't understand what could be happening to your spouse, your partner. So I think that being able to raise awareness is really important. I wanna see people get diagnosed earlier so that they get the support that they need to get into the clinical trials that ex. The issue is that when you're diagnosed too late, you can't participate in those trials.

[A]

How early do you have to be in your diagnosis to be able to participate? I mean, that's early on in the process. Is that what that is?

[B]

Yeah, I mean, you know, the person who has FTD has to be willing. And dementia is hard. I mean, imagine trying to explain what FTD is. And please be still for the mri. And now we're going to do blood work. It's not as easy. You know, the communication part of it is hard. But they're really also looking at genetic families which I want to say about 30% are genetic, where the rest are sporadic. Meaning it just sort of happens where they. The people, the person, the family. They can get tested genetically to see if they have the gene. And if they do, then they get into the clinical trials early, before symptoms start, and that's how they're kind of testing these out.

[A]

Was there a moment when you realized, look, you had the diagnosis, I can't do this myself, but you felt like bringing on help was showing that you couldn't handle it all, which is completely not what that is. But did you feel like I've got to just. I think a lot of women do that. Like, I just got to do it on myself because that's the right thing to do.

[B]

Yeah, that's. I think, what I subscribe to, that. You know, that I'm a woman. This is my husband. This is what you do for your spouse. You know, I'm gonna be a caregiver. I've got this covered. I'm gonna raise my children. I don't need help. I'm not gonna raise my hand. And it came to a point where Bruce's neurologist said, you know, it's time, like, you have the resources to be able to bring in formal caregiving, and it's time for you to do that, because this is a progressive disease. And you think that you. But I'm going to tell you that this is going to. He will decline, and he is going to need more support, and you are not going to be able to do all of this on your own. And I really needed that permission. I really needed to hear that, to be able to then get the help that we needed. If she hadn't have told me that, I would not be here today. Like, I would be back home caregiving, taking it on myself. But, you know, what I've learned is that caregiving is not a solo mission. We need to ask for help to know that we're not a failure. If we do, to be able to sustain this journey, we need to really look to friends, family. It's not just like a personal issue. It's like a societal one. How can we bring more people in to help and support this?

[A]

I think what you wrote is a permission slip for a lot of people. I really do. And I hope. I mean, I. I hope you know that. I don't know if you even have the. Right now, there's so much still going on and so present that I'm sure it's impossible to even realize the impact of your voice. But it is definitely really there. And I think there's so many people that don't even know they need that permission slip right now.

[B]

That was one thing I was very aware of, that hearing, giving that, you know, being given that permission. I really wanted that to come through in the book, and not just from me, but from the experts and specialists, because that. But when I heard it from them again, that was just. I knew, okay, I got it. I understand that, and that's what I hope came through in the book. So I'm very happy that you just.

[A]

Said that, I think, without question, because I think that no matter how. Look, I don't know. There's different types of caregiving, right. I did caregiving when I was young. My mother with breast cancer. Every type is very different of caregiving. And I think that women don't always have somebody gives them that permission, and I think that this does that. So, yeah, I really do. I mean that I felt it. You know, I got through the middle, and I was like, oh, this is giving people, like, the okay to say, like, I'm okay if I'm allowed to ask for help. And unfortunately, a lot of women still feel like we need to. We have to be told. Yeah. And we have to take it all on, and we don't want to be.

[B]

A burden to anyone else. And, you know, that whole sort of narrative that we have in our head, we need to shift that.

[A]

I think something else that you said, which was, you know, some people always saying, like, let me know. Let me know if I can. Let me know what I can do. I stopped saying that to people. Like, I had a friend of mine who, you know, is going through something I said, and I started to let me know, and I'm like, oh, no, no. Emma said, don't do that. Don't do that. Just, you know, just really go do it. I think that that means a lot.

[B]

Yeah. I mean, I think people are so. Well meaning, right. They want to help, but they just don't know how or what you need. So what I say is that caregivers, when the help is someone wants to help, the caregiver needs to accept the help. But what I ask the caregivers to do is just have a list of everything that you do, things that you really need help with, support in as little as getting that prescription, filling my gas tank up, picking my kids up from school, whatever that might be, so that when you get that text or you see that person and they say, if there's anything can do, please let me know. Just be like, I have something. You know, open up your phone. You've got your notes there, and just say, can you please X, Y and Z. Or instead of saying, if there's anything I can do, please let me know. Tell them what you can do. You know, give them three things to be like, you know, I can go get your groceries for you this week and drop them to you at your front door. You know, there's plenty of things. I can mow your lawn, whatever. I mean, who knows what those boundaries might be or what you're capable of being able to show up and do. So, you know, let's just be more actionable is, I think, important.

[A]

And there's nothing too small, really, at this point.

[B]

Right.

[A]

To do, whether it's a prescription or it's a groceries and things that we might think are, oh, that's not enough. I want to do more. Those things really matter.

[B]

Yeah. Because, I mean, I think as caregivers, we're doing so much, we're taking on so much, and we can outsource so that we can find more time to make time for ourselves as a caregiver. Because that's so important to be able to, you know, sustain this journey so that we can make time to make a doctor's appointment for ourself, not for our person. Because, you know, like, if. I think it's like, 40% of caregivers aren't making their own medical appointments because they don't have the time or they don't have, you know, support at home to watch their person while they go get their blood work done, and they're.

[A]

Not taking care of themselves at all. So you interviewed more than two dozen experts for this book. What did the research teach you? That you did?

[B]

What did the research teach me? Gosh, there was, you know, all different types of research. We brought in, like this one neurologist who's talking about music and how, you know, they were doing research around, like, making sure that you're playing music at home because that's so beneficial to the person with dementia, but also for the caregiver. There was also this study that someone did, Dr. Lauren Massimo, that that showed that when caregivers looked after themselves, when they made more time for themselves, that there was actually a beneficial behavioral shift for the person that they were caring for. So it showed that if you cared for yourself and sort of whatever that might look like for you to care for yourself, that there was a benefit for the person that. That you were caring for.

[A]

Has that been hard for you to Do I know you've got two young girls too at the same time? What has it been taking you to try to learn how to do that? Because I can imagine it's hard.

[B]

Yeah, I mean in those early days when I had no support, I wasn't thinking about myself and what that even means again. It was Bruce's neurologist who told me about these statistics of caregivers dying before their loved ones. It's like 30% of caregivers die before their loved ones. And I didn't know that caregiving could be so bad for your health. And that was a big wake up call for me to learn and to prioritize myself. And that knowing that that wasn't selfish, that that would be self preserving to be able to sustain the journey of caregiving because I want to be able to give the best care that I can for my husband as well as our two daughters. And, and Bruce would want me to do that. You know, he would not want me to neglect my own health to make sure that he is better, you know, that just I knew wouldn't work for him, for myself. So that's what I did. I started to prioritize myself.

[A]

I feel like he told you that quite often though before, right before the diagnosis. Didn't he tell you to slow down and kind of enjoy life and be present? That was sort of his.

[B]

I mean he's so fun and his motto is like live it up, you know, and he would want our daughters to do that as well as myself. He wouldn't, he would hate to know if I was just not caring for myself, not enjoying life. I know that he wouldn't, he wouldn't want that for me.

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[A]

I think the number was shocking when, when you wrote 30% of. In what you just said, 30% of caregivers die before their loved ones did. Did that kind of set you on your heels and go, wait a minute, what, what is going on? How, how does that happen? That number is, is staggering.

[B]

It's staggering. I mean, I didn't know that. I had no idea. So, yeah, it is really big number. And I think that just goes back to this idea that, you know, caregivers are not supported and we are absolutely in a crisis. You know, you've got 63 million caregivers in the U.S. 11 million of which are caring for someone with dementia. You know, I think they say like every three seconds someone is dying in the world, develops dementia. You know, how are we supporting caregivers? How are they getting respite? You know, our healthcare system isn't great. It's very confusing.

[A]

I know you said that Scout was the one that said, hey, I'm worried about you.

[B]

Yeah.

[A]

Did that scare you? To have her telling you that she was worried about you? I mean, that really shows you something is going on.

[B]

Yeah. I mean, what she'd said was that, like, I'm more worried, worried about you than I am my dad. And I thought, oh, gosh, okay. And that's when I knew. I was like, yeah, that was another person to tell me, like, get your act together. Like, what are you doing? And, you know, it's important to have people in your life that can really, like, call you out. And I was appreciative to Scout, to my doctor, Bruce's doctor, for, you know, speaking up and seeing it and, and sort of, you know, flagging it for me.

[A]

Who do you have to lean on these days? Do you feel like that network has grown in a lot of ways? I'm sure there's one that you're very Very close to. And then there's people that, you know that come in and out.

[B]

I think it's the caregiving community. You know, what's been so beautiful about sharing our story is that it's also, you know, I have been able to tap into more into that unit of other people on the same journey who get it. You know, that, for me, has been really important. When caregivers share their stories, I mean, what we learn from each other is really magical and very helpful. So that is really, I would say, my support right now because, you know, we're still on our journey. I'm still learning as I go. I'm gonna make mistakes as I go, but, you know, I can always pick another caregiver's brain. Like, this is what's happening. Like, what did you do? So there's a lot of different people I can kind of t into. That's really been very supportive and helpful for me.

[A]

If there is somebody listening right now that just got a diagnosis like this or suspecting a diagnosis like this, is there a first step you would want to see them take tonight?

[B]

I think what's most important is that they know that they're not alone and that to know that there is actually support out there and that when they do receive that diagnosis, they will probably leave that doctor's appointment with nothing. But I want them to know that there are actually resources out there. There is a community that they can connect. You know, I just want them to walk away feeling the complete opposite of how I did. You know, I'm working with UCSF right now that when someone is diagnosed, instead of just, you know, a check back in in a couple months, they're actually leaving with a roadmap, a caregiver's roadmap that has just a couple of resources. You know, we're not trying to, like, overwhelm the caregiver. But, gosh, I just think back, and I was like, if. If that doctor would have just said, you know what? Contact the aftd, which is the association for frontotemporal Degeneration. You'll go on their website. You're gonna see a ton of different resources and support. I mean, that would have just one resource that would have been incredible for me. So I just want other caregivers to know that there is support and to start knowing that it's okay to ask for help and that you're not a failure if you do need it.

[A]

Do people ask you what to expect if they. If, you know, if they're. If you're further along the process than they are. Do you. Do you explain that to them and talk to them about what you've seen in the progression of Bruce?

[B]

Dementia plays out differently in everyone. And I think that's why it's even so hard to sort of get, like. You know, I do. I try to pick the brain of our neurologist, and it's sort of like, oh, okay, well, this is what's going to happen. You know, it's hard to know, but I like to be able to hear from our neurologist who's. Who can kind of give me sort of like the broad strokes of things that they've seen. But it's hard for me to be able to tell someone how their person's disease will play out. It's really hard. It's like not one size fits all.

[A]

You communicate with Bruce, and I'm sure that you see flashes of different things at different times. How do you do that and how do you work through that? Because you're watching everything in real time right now, and you're the one that's aware of everything that's going on.

[B]

Yeah. I mean, again, like, we've been with Bruce every step of the way of his disease, and his disease progresses and he declines. And so it's not like this fast track into, like, oh, my gosh, he's not communicating. We're not able to have a conversation anymore. It's just been a slow burn. And that's very painful to watch as well. But we have learned to. We communicate with him in our own special way that works for him, that works for us. It looks different from what the norm would be, but we're not dealing with anything that is normal today. So, listen, as hard as this is, there is still so much beauty in it. I think that this picture of dementia is painted in such a negative way. And I think that when that conversation is only negative and how terrible and horrific it is, I think that narrative is harmful because then people are scared of it, and it just adds to the stigma of it. And I think that it's important to shift that, because if we keep with that narrative, the person with the disease won't get the support that they need, nor will the caregiver. So, you know, our life is still very. There is joy. We have laughter. That's very much a part of it. There are things that Bruce does that's, you know, funny that we can laugh with him, and it's not all bad.

[A]

I like how you're showing up, though, and showing your daughters that it's not something to be shameful of, because I think we've had enough of shameful conversations and whispering about things. I mean, we didn't say the word cancer for a long time. You know, we really had a lot of shame if somebody wasn't completely what we consider, you know, in quotes, normal. And I'm grateful for that for your daughters, because they're learning that at such a young age, to have a voice.

[B]

Yes, to have a voice and be able to meet people where they're at and. And to have compassion and understanding, I think is really important in this world. I mean, not only are we trying to teach our, you know, our two daughters that, but, like, you know, other. Other people could use that lesson, too.

[A]

Are there things that have shifted the way that you show up day to day? Whether. I know there was one part talking about what, you know, what you're wearing, like, not wearing black. Can you talk a little bit about some of the things that might have surprised you? I mean, I think when you're talking to so many experts, and you did talk to a lot of experts, there's a lot of different advice that you wouldn't. You talked about music, but there's a lot of other layers of that advice.

[B]

Yeah. So Tipa Snow is a dementia care specialist. When we came out with our family statement, I was like, oh, my God, I can finally, like, really just tap into all this different support. And Teepa Snow was a name that sort of surfaced, you know, multiple times. And I was able to work with her just to kind of help me, like, as I was develop my caregiving skills. And, you know, she told me that when you are with someone who has dementia, don't wear black because it looks like you are a floating head. Remove all black doormats at the front of your door because it looks like a black hole in the ground to someone with dementia. When you are talking to someone with dementia, don't talk to them standing straight on because that looks like you're being confrontational. Instead, stand sideways with your shoulder towards them, you know, using a lot of different, like, hand movements, like thumbs up and. Okay. Without talking too much. You know, it's sometimes it's very hard for people with dementia to be able to just sort of understand all the words and just keep it, you know, short and concise. And sometimes like a thumbs up or thumbs down is really, you know, and you don't know all this stuff. So I just, again, that's, you know, the beauty of Tepa Snow and the specialist that she is to be able to really help me and to be able to pass that knowledge off.

[A]

You've said that if this disease one day became known as the Bruce Willis disease, you would be okay with that. Can you go into that a little bit? I mean, I know, you know, we've talked his globally, you know, of who he is, but I also think that his story is allowing other people to speak out, like you're speaking out about their loved ones.

[B]

Well, it's like how Lou Gehrig's disease, how that was, you know, from als, And I felt like if this FTD was to be called the Bruce Willis disease, because it would help with funding, research and support and different types of advocacy, I would be okay with that. And I think that Bruce would, too, if he knew that it would help the next person to feel seen. I mean, I know that I hear from people a lot that say, I hate them, that, of course, that this has happened to your husband, but it's also made our journey a little bit easier, because when I tell somebody that, like, oh, my. You know, my husband has ftd, and they're like, huh? Like, what's ftd? He goes, oh, you know, like the disease that Bruce Willis has. Oh. And then you see sort of the compassion and the, you know, then they want to know more. And, you know, and I hate that it has to come to that. I just wish that people would just be a little bit more curious and, you know, have a little bit more compassion. But that does help this is the world we live in, but it does.

[A]

Help headlines and media coverage, and the whole family is together. I think there's something really special about that, and I'm assuming it's very special on the inside, too. But I think it's very important for people to see.

[B]

I'm so lucky again. I came into a blended family, and I'm so blessed to be a part of that. And I think that we all show up in our own way. We all have our own special relationship with Bruce that goes. Even his mother and his brother and sister and friends. And, you know, Bruce is so lucky. You know, he's surrounded by so much love from so many people as well as our family. So, yeah, we're in a blessed position that he feels that love and he feels that support, and not just from, you know, our sort of inner circle, core crew. But, you know, there is such a. So many people are rooting for him.

[A]

Well, so many people are rooting for you, too. I know that. I've heard Demi talk About you and what you've done and the girls. And I think that seeing that and then seeing that's really where your love story began with him just open and bringing family all together is what he would be loving and probably loves to see.

[B]

Yeah. And he just wants. I know that he would want me to do whatever I needed to feel supported and cared for. And this is what it is. You know, it's the advocacy piece. It's for me to be able to also connect with other people and not keep this so tight and close to my chest. I think that he would want me to find peace in whatever way that works for me. That would work for me.

[A]

And I think you were keeping it quiet on so many different fronts, too publicly, because it was gonna, you know, because of reaction. So globally, most people are not dealing with that. And then just, you know, within your family, what do hoping that your daughters carry with them. Watching you walk through this and seeing you step up with your voice and watching you advocate for more dollars out there and for more awareness and creating a roadmap for other caregivers.

[B]

I don't know. I just, you know, I think it's so important that we stand up for the causes that we believe in, and my cause doesn't need to be theirs, you know, But I think that it's important for them to see me support others and that are unseen and are unsupported. And I would hope that they'll see that, and that will filter through to them, and I already see that. You know, these kids are very compassionate, very kind. They are walking through life with a little bit of a different lens. So I don't know. You know, I think from what I see, you know, children are very resilient, and I think that they have been handed some, you know, hard cards, but they will play them. But they will play them well.

[A]

Emma, I have so much respect for you. Thank you.

[B]

Thank you so much.

[A]

Thanks for your voice and what you're doing and the people that you don't know whose lives you're changing, because I believe that's happening every single day.

[B]

Thank you so much. Thank you for having me.

[A]

Thank you.

[B]

Nice to see you.

[A]

Thank you so much for being here for this conversation with Emma. If this resonated with you in any way, or if you're caring for someone you love, I hope it reminded you, as she said, you're not alone. Emma's book is called the Unexpected Finding Strength, Hope, and Yourself on the Caregiving Path. I'm gonna leave a link in the show notes so you can grab a copy and share it with someone who might need it. And as always, I would love to know what you think. Leave a comment, send me a message, or leave a review wherever you're listening or watching. It helps more people find these conversations. It means so much to me to hear what's connecting with you. Thanks so much for being here and I'll see you next week. Today's podcast is sponsored by Midi Health. So many of you know this, but I was dismissed over and over again when I was struggling with perimenopause symptoms. I didn't even know I was in perimenopause. It is so important you're getting care from someone that specializes in women in midlife and that they're willing to have the hormone therapy conversation with you. I get questions from you every single day about where to go for support and I'm always suggesting Midi Health. It's covered by insurance and you don't even have to leave your house ready to feel your best and write your second act script, visit joinmitty.comtamsent today to book your personalized insurance covered virtual visit. That's joinmitty.com Tamsin Mitty the care women deserve welcome to Decoding Women's Health. I'm Dr. Elizabeth Poynter, chair of Women's Health and Gynecology and at the Atria Health Institute in New York City. I'll be talking to top researchers and clinicians and bringing vital information about midlife women's health directly to you.

[B]

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[A]

Listen to Decoding Women's Health with Dr. Elizabeth Poynter. Wherever you get your podcasts.