Ep 94: The Unexpected Journey - Emma Heming Willis on Caregiving for Bruce Willis

In this deeply moving episode of BrainStorm by UsAgainstAlzheimer’s, Emma Heming Willis shares her intimate journey as a caregiver to her husband Bruce Willis, who lives with frontotemporal dementia. Their conversation covers the progression from early warning signs to diagnosis and the complex decisions required in caregiving - including the heartbreaking but necessary choice to have Bruce live separately to better serve both his needs and their children's wellbeing.

Emma's candid discussion about reframing expectations, finding permission to ask for help, and discovering unexpected beauty amid profound loss offers hope and practical guidance for other caregivers. Her transformation of personal tragedy into advocacy through her book "The Unexpected Journey"  demonstrates how caregivers can find purpose and meaning while navigating one of life's most challenging experiences. You don’t want to miss this episode!

Produced by Susan Quirk and Amber Roniger

Transcript

Emma Heming Willis (00:00):

What I needed was permission. I needed the doctor to one, tell me that I could become a statistic, and that the next conversation was that you need to bring in help. You need help. You cannot do this by yourself. And I really needed that permission, and I think other caregivers do too, because bringing in help for me felt like I was failing my husband. And you know, I really wanted to be able to take all of this on by myself, because that is how I was raised. And I'm going to do this by myself. And I've got this.

Introduction (00:32):

Welcome to BrainStorm by UsAgainstAlzheimer's, a patient center, nonprofit organization. Your host, Meryl Comer, is a co-founder, 24 year caregiver and Emmy award-winning journalist, and the author of the New York Times bestseller, Slow Dancing with a Stranger.

Meryl Comer (00:49):

This is BrainStorm. And I'm Meryl Comer. Welcome to this special edition from our National Alzheimer's Summit with a theme from personal stories to powerful action with firsthand accounts of brave men and women refusing to let a diagnosis define their limits. Joining us is Emma Hemming Willis wife and care partner of the Famed Actor, an iconic action hero, Bruce Willis, living with frontotemporal dementia. Her new book is The Unexpected Journey, finding Strength, hope, and Yourself on the Caregiving Path. Welcome, Emma. Thank you for your devotion to Bruce and your courage to speak out publicly.

Emma Heming Willis (01:33):

Well, thank you for having me, Meryl. I'm so thrilled that I can be here to use this incredible platform that you guys have to be able to support the next caregiver and raise FTD awareness. My hope is that this book lands in the hands of people who need it.

Meryl Comer (01:49):

Emma, you make it very clear in the book that you're privileged to be able to afford outside help, but that you've also gone down a path early on when you did it alone, because Bruce is such a celebrity and you were trying to protect your privacy as a family. Share with us your thinking at that time,

Emma Heming Willis (02:08):

Those early days of trying to understand what was happening to Bruce, trying to protect him, protect our family. You know, I didn't want to bring anyone in to help, nor did I even want to ask anyone for help. You know, I was in a very tricky position where in those early days, I never really understood that some of the symptoms that Bruce was exhibiting was a young onset dementia. It didn't even occur to me. So I was trying to do a lot to try and understand it, shield it, get to the bottom of it, but also just really scared to raise my hand because I was nervous that something that felt very private could possibly get out before, you know, I or he or our family was ready to. So for a while, as things started to progress, I became a caregiver.

Meryl Comer (03:06):

It's complicated, right?

Emma Heming Willis (03:07):

Oh, it's so complicated. It's very complicated. Anyway, and then this extra layer of who Bruce is in this world just added that extra layer of complication.

Meryl Comer (03:19):

Emma, you were married for 13 years before Bruce became Ill share with us your early life together as a couple.

Emma Heming Willis (03:27):

You know, I write about this in the book, and it was probably one of the hardest chapters to write because I am so in today of our journey, and FTD can really cloud so much. And I really had to think back of like, what was this other chapter of our life? But that other chapter was so beautiful and so fun and filled with so much laughter and joy. Bruce's a charming, intelligent, funny musical. You know, he, he just has so much going for him and also very complicated. He's got his complications. But our early years were just really beautiful. And when I met Bruce, I was probably in my early thirties, I want to say, and then we had our first daughter when I was about 35. All the things I loved about him to where we are today in our life is just what a juxtaposition,

Meryl Comer (04:32):

Emma, the way you describe it in the book, everything Bruce did in real life was big and magnanimous, not unlike his action hero roles, you just didn't get birthdays. You got birthday months.

Emma Heming Willis (04:45):

Bruce's world is big and so is he. And I just, I loved being a part of it. My world was really very simple before, and he just, you know, taught me how to have fun and be a little bit more spontaneous and live it up as he would say, you know, I'm very pragmatic and you know, like a plan. And he's like, plan, who needs a plan? Let's go do, let's go do this thing. You know? He was just fun. And you know, also just ran our lives, which I really loved and just felt very safe and secure with Bruce.

Meryl Comer (05:19):

Emma, how does frontotemporal dementia present? And in the early stages, can you describe how it impacted your relationship?

Emma Heming Willis (05:28):

It was so hard for me to figure out what was, what, what I talk about in the book. And what was, you know, known was that Bruce lost a big majority of his hearing in one ear, filming one of the diehards. I think it was the first diehard actually. And he wasn't wearing ear protection and fired a gun under a table, and it really damaged his hearing. And when we first got together, it didn't really seem to be a problem, but I started noticing years later that when we would be at dinner with the family, you know, usually it was always Bruce with all of the girls in the family, a lot of daughters, and he would just kind of melt back and not really be participating in the conversation. And I just thought like, what is that? That's so interesting. That's so different because he's so vocal, loves to be with his family, with his girls. So I just kind of noticed, you know, this, I guess it would be apathy that was setting in. And I never realized that that was a symptom of a

Meryl Comer (06:27):

Disease. Well, now we know that hearing loss is an independent risk factor for dementia, but as caregivers, we're always looking back for the threads of what were the first signs, what happened and when did it happen?

Emma Heming Willis (06:40):

And it's so gray, right? Like, you know, I think Bruce is such a, a fun oddball, right? Like it was very gray for me to, to look back and be like, oh, this is when his disease started to creep in. I'll never be able to sort of timeline that or figure that out. It is really gray. And I think that when you are dealing with a young onset type, I think what I have heard from a lot of other care partners is for them to, it's just gray to know when these two things started to separate their person from their disease.

Meryl Comer (07:17):

Emma, in the early stages of Alzheimer's, people hide out trying to maintain control. And as spouses, we often cover the lapses and try to keep things as normal as possible while still trying to get to a diagnosis. With frontotemporal dementia, there's a loss of social awareness and disinhibition. What changed Bruce's behavior

Emma Heming Willis (07:40):

With FTD? It presents in three different ways. You have the behavioral variant, it can affect your language as another variant. And then also movement where you can see sometimes a LS or PSP. Bruce was diagnosed with primary progressive aphasia. And for him, what was really apparent was his language. And what I noticed with him was that Bruce had a severe stutter when he was a child, and then sort of got a grasp of it in his college years when he realized that if he memorized something like a script, a monologue, he would be able to recite it back without stuttering. And I think that was something that kind of prompted his wanting to pursue acting. So what I started noticing was that his stutter started coming back. I mean, Bruce has always had a stutter. He's just been really good at masking it over these years.

Emma Heming Willis (08:35):

And I think there just came a point where it was very difficult for him to mask it. And that was probably what I had noticed the most. You know, the behavior was probably the apathy. There was a little bit of behavior, but it wasn't as apparent to me as the language piece. You know, when I hear from other caregivers and that behavioral variant, that is a very hard variant to have to try and manage, cope with. You get worried to take your person out into the world because you're scared of what they might say. There's no filter, right? Like this is affecting the front part of our brains, how we show up in the world. It's how we relate to people. It's how we have what we say, what we don't say that is just gone with FTD, but frontotemporal dementia, it also affects the temporal. And then for Bruce, it was more temporal where it holds language, speech, understanding writing.

Meryl Comer (09:31):

And the family caregivers tend to pull a loved one away socially to protect their dignity because of behaviors. But here you have a famous celebrity who's your husband, which complicates it even further.

Emma Heming Willis (09:44):

Yes, especially when most people, I think navigating FTD, I'm not sure about Alzheimer's, you know, sometimes don't even realize that they have a disease, that they think that anything is wrong with them. So it just makes it much more complicated to be able to try and tell an alpha male to not do the things that he wants to do. How do you stop someone? It was, that was a very dark, scary time. I think those early years, I mean, it's still scary and dark. I think those early years where you are trying to understand what is happening and how to get your person to the doctor, it is so hard to navigate that. That was just a really bleak time in our lives.

Meryl Comer (10:28):

Emma, trust me, it's a challenge across dementias because even in Alzheimer's, they're not necessarily attuned or willing to admit to anything being wrong. So tell us, how did you get your alpha male to the doctor?

Emma Heming Willis (10:42):

I was so nervous about, you know, going over Bruce's head, there just came a point where I was like, I need to speak to his doctor. You know, I first needed our doctor to hear me, to listen to what I was saying, and that I was worried. And I didn't know what was happening. I just had to trust the process. I just had to trust that our doctor would listen, Bruce's doctor would listen to me. And that is just the direction that I went. And we were able to form a plan together to be able to bring him in. And, and I am grateful because Bruce just usually went along with the things that I had asked of him. And I know it's not like that for everyone, but that was, that was just the experience for, for me and what worked for us.

Meryl Comer (11:28):

Emma, I don't think anyone listening who's had a loved one showing symptoms of dementia ever forgets that moment when you're handed the diagnosis.

Emma Heming Willis (11:39):

I will never forget it as long as I live, probably one of the most traumatic experiences of my life was that day. Receiving that diagnosis, I really felt we were going in there and I knew it was going to be the day, it was going to be the day we were going to hear what this was. And in my mind, it was young onset Alzheimer's, and we received the FTD diagnosis. And I had heard about different types of dementias. And when I had spoken to neurologists, they would always say to me, you know, you know, there's this type and this type and oh, FTD, that's the one you don't want. You know, that is the worst of the worst. And I remember going into that office and hearing that diagnosis, and that was it. You know, I, I felt tingles go up and down my body. And after I heard those three letters, I didn't hear a single thing. I didn't know what was happening. And what I do know though is that we left with no hope, no direction, no roadmap, nothing, just to check back in, in a couple of months. And that was it. And I just thought, this is how you're sending us out. This is it the most traumatic experience ever.

Meryl Comer (12:52):

Emma, how did Bruce react?

Emma Heming Willis (12:54):

Fine.

Meryl Comer (12:55):

Was he aware at that point?

Emma Heming Willis (12:56):

No, I, I'm so grateful for that. I think that has been the blessing and the curse of this disease is that I believe that Bruce has never tapped into understanding what FTD is, what this means for him, for our family. No,

Meryl Comer (13:14):

No. The behavioral variant that Bruce has tends to occur in men more than women. Tell us why that diagnosis prompted you to write a book to help others through the same circumstance

Emma Heming Willis (13:25):

That day, as traumatic as it was. And once I was able to kind of peel myself up from the floor and realize that, you know, I need to get my act together here. And one of Bruce's neurologist said to me like, you don't want to become a statistic because sometimes caregivers will pass before their loved one, and you need to get your act together. You need to figure some things out. And I was able to start assembling experts and specialists around our family to be able to support Bruce, myself, our two young children who were eight and 10 at the time that Bruce was diagnosed, and just really figure things out. And I, you know, went and took a deep dive into the internet, the worldwide web, which is a really dark place to look up FTD, but one sort of door led to the next.

Emma Heming Willis (14:13):

And I had so much incredible valuable information that I was accumulating. And I knew that other caregivers out there could really benefit from the access that we have. So that is really what prompted me wanting to write this book. The Unexpected Journey was just being able to pass all of this important valuable information onto the next care partner. Because I do not want another care partner to walk out of a diagnosis appointment with nothing. I just think it is unfair, it is traumatic, and just support is needed. Caregivers are unseen, you know, we are just pushed to the side. And I don't know if it's because, you know, there is no treatment, there is no cure. So, you know, we're just, the people just kind of wipe their hands of us and let us just figure it out. But I just wanted to help someone else. And by writing this book, it's really helped me because I'm revisiting with these experts and specialists and they're reminding me about things that they have taught me, they have told me, and I've really needed that reminder. And if it's helped me, I believe it will help someone else

Meryl Comer (15:23):

From our National Alzheimer's Summit, from personal Stories to powerful action,

Announcement (15:29):

Real life stories about navigating a diagnosis to caregiving for a loved one, go to alzsummit.org to learn more.

Meryl Comer (15:38):

Emma, your Bruce's partner protector, share the dynamics in your blended family and tell us what happened when you shared the diagnosis with Bruce's first wife, Debbie Moore and their kids

Emma Heming Willis (15:51):

From the start. Our family has been really set up in such a beautiful way with De me and Bruce and them always putting their family first, their three daughters first. And you know, being able to come into that, you know, has really sort of set us all up for success in now this new chapter of all of our lives. And I know it's not always like this, family dynamics are so complicated and so tricky, but I will say that I'm just really lucky for the support. I am really lucky that they trust and know and appreciate the care that is put into place for Bruce and how we have handled all of this. And, you know, we have really come together in such a beautiful way, and we're really lucky about that. So they knew that that appointment was happening and, and we all knew that we were going to be receiving a diagnosis that day. So we're truly blessed to have this blended family.

Meryl Comer (16:48):

Emma, the way you describe Bruce's personality in the book is not only did he live big, but he taught you to live in the moment. Does this disease teach you to live in the moment with your loved one? Yeah,

Emma Heming Willis (17:00):

It was very hard for me to grasp what could happen, what this would look like, because I didn't know. No one was telling me I had to go figure this out on my own. But over time, now that I have really educated myself and I, I understand more about FTD and what it could possibly look like because I asked the questions and I'm not afraid to hear the answers. And now, you know, Bruce is a lot more settled in his disease and I just find that he's content. I think that things have really sort of balanced out in a really beautiful way for him. And I think it has a lot to do with my stress level is lowered. And you know, I talk about this in the book, it's like your family, your person living with dementia, they are feeding off your wifi. And my wifi was buffering.

Emma Heming Willis (17:48):

It was so spotty, and everyone could feel that around me. And I have my footing, I have my bearings, not all the time, but right now I do. And I think that just sets us up for success. And Bruce, to me right now, is just very present. He is very present. He is not worrying about what happened yesterday. He is not thinking about what's going to happen tomorrow in a week. He is just present. And I love to be in those moments with him. It's such a gift, especially for a person like me who is constantly thinking, worrying, wondering, just brings me back to just to be able to be in these moments and just really enjoy him. And this world that we have created for us and our family is really quite beautiful and profound.

Meryl Comer (18:39):

Emma, excuse me for a very personal question, but does Bruce still know who you are and who the family is?

Emma Heming Willis (18:47):

You know, I think that's the vast difference between Alzheimer's and FTD where Alzheimer's is affects the memory, I'm sure amongst other things. But with FTD it doesn't affect the memory as much. For Bruce, what I see is his language, right? Like primary progressive aphasia that takes away your words. So I don't know how to describe it, but it's just Bruce lights up, you know, he lights up and he knows who we are. You know, I don't know, it's really hard to tell you, but I just know that there is a really massive sense of love and connection when we are together. It doesn't need language. Like we don't need language. We are, we have learned our new language and a way to communicate with Bruce as he communicates with us to his best of his ability. And you just kind of roll with it. And it's heartbreaking.

Emma Heming Willis (19:41):

I'm not going to sit here and paint some beautiful, like, toxic positivity story. It, it, it tears me up. There's just not a day that goes by where I, I look at him and his disease and I think like, like it's un it just seems so unfair, but this unfortunately is what it is. And I can sit here and be sad and in the grief and the trauma of it, or I can just really appreciate what is left. And he is here and we have such a beautiful connection, maybe even deeper than before, I don't know. But as hard as this disease is, there has also been so much beauty that has come from it.

Meryl Comer (20:25):

Emma, you talk in the book about reframing and begin to describe exactly how you have to live with a loved one in their space, their way, whatever their reality is that you go into their world rather than fight their world.

Emma Heming Willis (20:41):

Yeah, I'm not trying to fight his world. I mean, his world is very content and being a part of that is very stabilizing for me in an odd way. It just is. And with the reframe, I, I realized that I had a choice. You know, I had a choice to make that I could choose to be sad and upset, angry, resentful, you know, all of these feelings that we have as caregivers, and I could also bring in joy and fun and laughter into our world because Bruce would want that for me, for our two young children. He would not want to know this world that I was just in, which was just this very dark place. He would want to know that we were living it up and living full lives and to have fun amongst navigating Bruce's disease. So it was a choice that I made to be able to also bring in laughter and levity and not just have this one note because I'll tell you, it's all here. You know, my grief, my sadness I have, when I think about it, it is just right here. It comes up straight away, you know, it's just always here. But I can't live with that all the time. It's just not healthy. So I just have to learn how to, and I have learned how to balance this while walking through it.

Meryl Comer (22:03):

Emma, was it a wake up call when you write in your book about a doctor warning you that you better take care of yourself so you don't end up a statistic.

Emma Heming Willis (22:12):

Other experts and specialists, they really have a lot of different types of wake up calls for the caregiver that I think is really important for them to hear. You know, I feel like what I needed was permission. I needed the doctor to one, tell me that I could become a statistic. And that the next conversation was that you need to bring in help. You need help, you cannot do this by yourself. And I really needed that permission. And I, and I think other caregivers do too, because I, bringing in help for me felt like I was failing my husband. And you know, I really wanted to be able to take all of this on by myself because that is how I was raised. And I'm going to do this by myself and I've got this. But I realized in order to take the best care of Bruce, like I needed to also take the best care of myself and our two girls. And that was something that just fueled me. And I hope that this is what this book does. It gives a caregiver permission that they might need to hear that they're not a failure when they ask for help. And that asking for help is your lifeline, so that you don't become a statistic.

Meryl Comer (23:24):

Emma, what's painful to me is that your experience mimics what many of us listening have gone through with our loved ones years earlier. But I think it's important that people understand that FTD is often misdiagnosed as a midlife crisis depression or bipolar disease. And it often takes two to three years to get to diagnosis.

Emma Heming Willis (23:47):

It's very hard to diagnose. And that is why it gets misdiagnosed. That's why this awareness piece and what I am trying to do with other advocates is so important is that we need to let people know that it is out there and that I really think that it is more common then we know it's important for doctors to just understand that that could also be a possibility. Not to just say, oh, it's a midlife crisis, or it's bipolar, or it's, you know, X, y, and z to maybe even think, you know what, well let's, let's maybe consider FTD, but doctors don't know about it.

Meryl Comer (24:21):

Not unlike young onset Alzheimer's that typically strike someone in their prime. Describe the challenges of parenting children through frontotemporal dementia.

Emma Heming Willis (24:32):

It was just very complicated. But what I have learned, how important it is and what the experts that I bring into the book, Megan Graham, who has really helped me navigate how I communicate with our daughters about what is happening and how honesty is really the best policy and that we want to shield and protect our children. And we don't want to sometimes reveal the hard truths of what FTD ultimately does to our person or any form of dementia. I wanted to shield them, but I realized that no, it was really important that when they asked questions that I gave them the honest answers. I didn't give them too much, you know? And when Bruce was diagnosed, I let them know what your dad was diagnosed with frontotemporal dementia, also known as FTD, and they couldn't figure out the letters and an acronym that they put together as Fantastic Turtles Dancing <laugh>. That's how we kept the letters straight in our head. And they were eight and 10 at the time. They were very young. And you know, that just shows the level of maturity where they were at fantastic Turtles dancing. And that was sort of where we stopped. And then as time goes on, I bring them up to speed on things that they need to know. And when they ask the questions, I tell them the answers,

Meryl Comer (25:50):

Emma, do you prepare your girls ahead of time before Bruce and the family get together?

Emma Heming Willis (25:56):

They have grown up with this disease with their dad, and they truly meet him where he is at. And there is no expectation and there is so much beauty in that they can just be with their dad and be themselves. And that's fine. Of course this is hard for them. And of course this is terribly sad and we talk about that a lot, about the things that they wish that Bruce could be around for, but he's just not able to. And we talk about that loss a lot, but at the same time, they have embraced it. Kids are so much more resilient than we give them credit for. And people would say that to me, like, oh, they're going to be fine. They're so resilient. And I'm like, shut up. Like, you don't know what you're talking about. I don't know how a child is going to bounce back from watching their father lose pieces of himself. How does one bounce back from that? But they are very resilient and I am in awe and I'm so proud of them and how they show up.

Meryl Comer (26:59):

Emma, help us understand how you've reframed your expectations.

Emma Heming Willis (27:05):

Yeah, there are no expectations anymore, which is beautiful actually. You know, I think when you're married you have such high expectations for your partner, right? <Laugh>, like you want them to do this and that and this and whatever, and all the things. There is zero expectation. You know, ambiguous loss was a, a phrase, a term that I kept hearing as I started moving through this world of dementia. And I'm sure many people in the audience have now heard of it too. But for people that don't know, it was coined by Dr. Pauline Boss and it means that your person is physically present, but psychologically not. And once I learned that that was a thing, you know, you're, you're grieving while your person is still alive, and that just feels terribly unnatural. But that is what we do while we are navigating the world of dementia.

Meryl Comer (27:58):

You share in your book that everything in your home was orchestrated around Bruce's FTD and that you made a painful decision that it was really best for the children if Bruce lived nearby, but separate.

Emma Heming Willis (28:11):

Our children were so young, and I, I started to realize when I looked back that they were not having a normal childhood. You know, we couldn't, sorry, I'm just going to start crying again. You know, they couldn't have play dates, they couldn't have sleepovers. I kept so many people away from our home and our home had to become very tailored to Bruce and his disease. You know, dementia plays out very differently in, in people. They say if you've seen one case of dementia, you've seen one case of dementia. So it's not one size fits all when it comes to dementia. And what the disease needed was routine, quiet, a very serene atmosphere. And I was creating something that, that worked for Bruce, but yet just not working for our children. And I knew that Bruce wouldn't want that for our girls. You know, he's such a, a family guy and so loud, right?

Emma Heming Willis (29:28):

Like there was always music blaring and he is got his harmonica and he is walking through the house and laughing. You know, he was just such a, just big personality and, and the house, our house was always filled with music and fun and people, and, and that all just kind of went away as his disease started to progress. And I realized that like Bruce would not want our girls to be living in an environment that was tailored to him. So I had to make this really hard decision. It is still just unfathomable really, but it was the right choice for us to be able, sorry,

Meryl Comer (30:11):

No apologies. Please. As caregivers, we do our best and no one who's done it. Emma, questions when you say we can't do this anymore, it's not working for our family,

Emma Heming Willis (30:23):

You know, we were able to find a second home for Bruce close by where he has the appropriate care. And you know, I just knew that it was time to have a home that was tailored to our children's needs. You know, they're now 11 and 13, it's only been a few years since his diagnosis. But you know, we have these two environments that are so beautiful our home and our second home where, you know, we have our stuff there and we're there all the time. And it has become more of a, a space where more of his family and friends can come over. That home has become just this revolving door of just more, and that makes sense, obviously, but just, you know, the, the possibility of more people coming through than me micromanaging all the things and trying to control and it just wasn't working in the end.

Emma Heming Willis (31:27):

But now we are in a really beautiful position and we're so fortunate. We are so fortunate. And when I say that Bruce is content and we're in a really good, stable part of his disease right now, I think it has a lot to do with this setup that we have that works really well for him and works really well for us. And as hard as it is, I am so proud of what we've been able to do and the care that we have been able to put together for him. It has made the world of difference.

Meryl Comer (32:03):

Emma, you write in the book that you think that Bruce would be proud of your writing. This book,

Emma Heming Willis (32:09):

Bruce was all about giving back and I really learned when it comes to advocacy and trying to help someone else, I really learned that from him. This is what he would want. He would want me to be able to use my voice as, as, as shaky as it is. You know, this is not my area of comfort at all. I know that he would be so proud to be able to use the circumstances that we have to be able to help someone else. And I'm still learning, right? I'm still trying to figure all this stuff out in real time. Something good needed to come from something so terrible. This is what has helped being able to help someone else. And he would be so proud. He would be so proud.

Meryl Comer (32:54):

Our guest is Emma Hemming Willis wife and care partner of the Fame Doctor, iconic Action Hero, Bruce Willis, living with Frontotemporal dementia. Her new book is The Unexpected Journey, Finding Strength, Hope, and Yourself on the Caregiving Path. Check out more personal stories from our National Alzheimer's Summit with a theme from Personal Stories to powerful action. That's it for this special edition. I'm Meryl Comer. Thank you for brainstorming with us.

Closing (33:29):

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