Oprah and Bruce Willis' Wife Emma on Finding Strength, Hope & Yourself in Caregiving

Hello, and thank you. Thanks for joining me on this Oprah podcast. It's wonderful having you here, where we're talking about things that I believe matter in the world. And it is my hope that the conversations that we're having are impactful for your life.

That's why I'm doing it. Listen to this. It is estimated that 40 million people in the United States alone are caregiving for a family member. And that number is on the rise. So chances are that most of you watching or listening

will one day be faced with caring for a spouse if you're not already, or caring for an elderly parent if you're not already, or a child. We know from research that caregiving can have significant emotional, physical,

and financial impacts on those who are taking on that huge responsibility. And I'm joined by someone who knows this all too well. Her new book, The Unexpected Journey, chronicles her story of caring for her husband, actor Bruce Willis,

who was diagnosed with frontotemporal dementia in 2023. Welcome Emma Hemming Willis to the Tea House.

Thank you for having me. My name is Emma Hemming Willis, and my husband Bruce Willis was diagnosed with frontotemporal

dementia in the fall of 2022. In 2023, Emma Hemming Willis and her family released a statement announcing her husband, one of America's favorite action heroes and adored Hollywood movie star Bruce Willis, was diagnosed with frontotemporal dementia or FTD.

FTD is a very difficult and unkind diagnosis.

Doctors say FTD is a very difficult and unkind diagnosis. Doctors say FTD is a rare type of dementia that affects the frontal and temporal lobes of the brain and can slowly change a person's cognitive abilities, their behavior, or their ability to speak. The Willis family statement read, challenges with communication are just one symptom

of the disease Bruce faces.

Our family is in a unique position to raise awareness and I knew that we needed to be a part of the long-term solution.

Emma is a former model, an actress, now a wife, mother, author, and advocate. She has written a new book sharing her experiences as her husband Bruce's caregiver. It's called The Une journey finding strength hope and Yourself on the caregiving path Emma begins the book with a heartfelt message for readers and caregivers She says my hope is that this book can be a lifeline For you, and I know so many of you who are listening and watching us today are

caregivers who need a lifeline. I really appreciate what you said writing this book, that it is the book that you wish that someone had placed in your hands as you were getting the diagnosis for Bruce. And I want to talk about that day and the day after. But first, I hope you don't mind if we start with the part of the book where you focus on your love story,

how it all started.

Yeah, I mean, I met Bruce at our trainers, Gunnar Peterson. And, you know, our time started sort of overlapping and I got to know him. And I got to see just what a down-to-earth, humble person he was. So our relationship didn't really take off

until many years later, actually. And then our paths crossed again.

So that first meeting, nothing happened. Then you met him years later. Yeah. And he invited you to a weekend with his family.

Oh, yeah. It wasn't a weekend. It was come celebrate New Year's with us.

Okay. Come celebrate New Year's.

Yeah. Turks and Caicos, come out for a week with my ex-wife, her husband at the time, and my three daughters.

And I was like, whoa.

Whoa.

That's a lot.

That's a lot.

And I said, but thank you, thank you so much. Let's pick this up in the new year. Yeah. And I'll see you back in New York. But he was very persistent. And a friend of mine, Ali, who was with me, was like, what are you doing? You know, like, we can change our plans.

He, you know, obviously his intentions are good. His ex-wife is there. The husband's, his three children are there. You know, go outside your comfort zone a little bit. And I did.

OPRAH WINFREY And you did. And what did you discover on that trip?

CYNTHIA I discovered what an incredible family man he was. I...

OPRAH WINFREY Because you got to see him interact with his daughters.

KATHLEEN With his daughters. I got to see him, you know, the interaction between him and Demi and the new husband. And I just thought, like, how modern and how great. OPRAH WINFREY Mm-hmm. how modern and how great. And it really sort of just changed my whole thinking of him and who he was. OPRAH WINFREY Yes, yeah. And it's so interesting because I was reading this and I was sharing this with the producers. I said, you know, I always

felt that I was not going to have children. So I never looked at any man thinking, oh, he will be good. He will be a, oh, he will be a good father or he will be good with children. But when you saw him with the children, you thought, oh, this is the kind of man I would want to have children with or to be the father of my

children. Exactly right. It was like to see the test run. And the test run was good. I was like, I could see myself with someone like that.

Bruce Willis is a father to five daughters, Rumor, Scout, and Tallulah, with actress Demi Moore, who we'll hear from a little bit later. And he and Emma have two girls, Mabel and Evelyn. And the things that you mentioned that really made him even more attractive to you

is that you felt that he was a gentleman and that he was good with the tip. I love a man that understands how to tip.

He's very generous. Bruce worked in the service industry prior to being an actor and he relied on those tips. And that's always sort of been embedded in my mind

of always be generous. Always be generous.

Always be generous. So he was a great tipper. And I love that about him.

And you all have now been married 16 years and you have two daughters, Mabel, who's 12, and Evelyn, who's 10.

So they just had birthdays, 13 and 11.

13 and 11. Okay. Yeah, pre-teens and a teenager. So what was he like before the illness as a husband and a father?

I mean, as a husband, just everything that I could have dreamed of. I mean, honestly, like Bruce, you know, I wanted the white picket fence. I wanted two children. That was the dream. And Bruce really gave that to me. He really did. And, you know, as a father, just so fun. You know, if he was in charge of those kids,

they'd be sleeping in, going to the beach, missing school, going to Disneyland. He was just a fun guy. Like, you know, his whole thing was that he always put his children first. And with that, like through that lens now,

that's how I navigate my world today. What would Bruce want?

What would Bruce want?

Yeah. What would he want for his daughters?

So, you write that before he was diagnosed, that you knew something was off. And one of the reasons why I wanted to talk to you is because I thought you did such an excellent job actually as in providing a toolkit for other caregivers. It's not just your story, but it's what you learned as a result of having to go through

this journey that you're still on and being able to offer what you've learned to other people, which is what, you know, the best thing that you can do. Maya Angelou always says, when you learn, teach, when you get, give. And that's what you're actually doing in the unexpected journey. In chapter one of the unexpected journey, Emma writes of Bruce's symptoms.

I can't pinpoint exactly when it started. It's very gray. But at some point, our relationship began to feel off. And there seemed to be a lot of miscommunications between the two of us. I was often annoyed with Bruce. Chaos was building in our home, and life felt increasingly unmanageable. Over time, I began to suspect that the issue wasn't Bruce's hearing or a rocky patch in our marriage, and that instinct made me realize

that we should go to the doctor. In simple terms, for Bruce, it started with speech and spread. I finally understood that those crazy marital issues were not Bruce. Neither were those off moments

and subtle shifts in his personality. They were the result of his brain being dismantled, taking part of the husband I knew and loved with it.

So this is to help those of you who are going through it, or will have to go through it, or who have experienced it. As I said when I first met Emma today, that I think this is going to be so liberating for so many people. And at some point, you saw that his behavior started to change, but you didn't have a name for it or didn't know what to call it.

So tell us what you first started to notice.

I mean, for me, it's like, it's very gray, and it is a hard question to even answer. You know, it's hard for me to know where Bruce stopped and where his disease started to kick in.

But what did you start to notice?

You know, for Bruce, it was language.

It was language.

Yeah. You know, he was diagnosed with primary progressive aphasia, which is also known as PPA. It's a subvariant of FTD. So for him, it was language. But also, you know, in our marriage, I started realizing that like we weren't aligning on things like we used to. Conversations that we had, he wasn't recalling.

And our values just didn't seem to be matching anymore. Can you give us an example of the language issue?

I mean, you know, so Bruce had a stutter when he was a child, like a severe stutter. And when he went to college, he met someone that helped him sort of get a handle, quote unquote, on his stutter. And that was to go into a drama class. And what he realized is that when he memorized these scripts, that he could recite them without stuttering. So Bruce has been able, I think over the years from college and on,

he has always been a person that stuttered. He's just known how to handle the stutter. What I noticed was that his stutter started coming back. And I just thought that was interesting. But never in a million years would I think that that was

a symptom of a young onset dementia. And so at one point you even thought, gosh, are we losing connection as a husband and wife? I mean, should I think... did you ever think about divorce?

I 100% thought about divorce, yes. Because I just didn't understand how our relationship was. So we were so connected, we were so enmeshed and yet all of a sudden things just started falling apart. And-

Would you argue more? Would you have misunderstandings?

I was just annoyed with him. I just didn't understand what was happening. I didn't understand the conversations that we were having. And we just weren't aligned. And I didn't know why. And he wasn't raising his hand about anything.

And I did contemplate divorce. Because I just didn't...

Because how long had this gone on, Emma?

Oh, my goodness. You know, a couple of years, I would say.

Really? Okay.

Yeah. Yeah.

Okay. But again, I would have never known that that was a young onset dementia that was on the table.

So when did you finally... when did you, you or he decide, let's go get a diagnosis or something is so off that we now need to get this checked? I just knew something was, something wasn't right. Something wasn't right. I knew it was time that I needed to raise my hand

and try and be the best advocate I could for my husband

and speak to his doctor.

Okay, I think it's important that you share what you said or how you said it or how you prepared yourself to say it. Because listen, I know how hard it was for me to have to have the conversation with my father about you can no longer drive. I'm taking the keys away. And getting everybody else in the family to go along with that conversation. Because they were like, no, well, he can just still drive to the barbershop. Because my father owned a barbershop.

And it's just down the street. Or he can go to the – I go, I'm not going to put myself in a position so that he hurts himself or hurts somebody else. And I have to have everybody else on board with it. But it was a very challenging conversation for something as simple as that, you know, for which most people are gonna have to go through at some point.

Yeah, I mean, I...

So, how did you have the conversation?

It was a lot of smoke and mirrors. It was a lot of smoke and mirrors that I had to do in order to get Bruce to the doctor. And it was a conversation that I had with his doctor and that I needed help to, you know, get the scans. And we were able to do that. You know, I can't remember what the conversations were.

I am in my caregiving, I'm in the caregiving midst of it all. So there's a lot, everything is a little blurry around that time. But I was able to have that conversation with him. I was able to have a conversation with the doctor

and we were able to get scans that showed that Bruce's brain was changing. And when they came back with the diagnosis

of frontotemporal dementia.

Yeah, that was a year later. So the first diagnosis we had was aphasia, but what we didn't realize that was just a symptom of the disease. We didn't have a diagnosis yet.

What I learned from reading your book is, is that everybody wants to label everything Alzheimer's, but there are many different forms of dementia. Alzheimer's is just one of them.

That's right. So one of the experts I have in my book, Teepa Snow, she says there's 120 different types of dementia. And when people hear dementia, they automatically think Alzheimer's, but frontotemporal dementia affects a different part

of the brain and it's not about memory. Alzheimer's is memory, but frontotemporal dementia, it affects behavior and like for Bruce, it was language. So we, you know, got the diagnosis and I wasn't prepared for that diagnosis.

What help or information were you given then?

From the doctor?

Yeah. Not much.

Yeah.

You know, I mean, I would- I heard you left with a little pamphlet.

Yeah, no, I mean, I would... I heard you left with a little pamphlet. Yeah. No, I mean, we got the diagnosis. I heard the diagnosis and then I remember just feeling tingles all over my body. It was like a rug had been pulled from underneath me.

I'm free falling. Did you know what frontotemporal dementia was?

I had heard about it. Yeah. I had heard about it. I had heard about it. My mother's friend had frontotemporal dementia. So I remembered it in my teenage years and I remember it sounding horrific. And throughout the years,

I had heard about different forms of dementia and FTD always sort of kind of came up. And I remember a neurologist saying, but yeah, boy, that's the one you don't want. You don't want that one. So that day when we went in for our diagnosis appointment,

I was not prepared for that FTD diagnosis. And yeah, I just remember seeing the doctor's mouth move.

You write that it was your worst nightmare come true.

It was my worst nightmare. I still can't believe it. I still can't believe it. So, yeah, you know, that day came, he gave us a diagnosis and, you know, we walked out of there with no direction,

no treatment, no hope, just a pamphlet and a check back in a couple months. And that was it.

Did they tell you that it's going to get worse, that it's going to deteriorate?

I'm sure he probably said all of that.

Yeah, because you're...

I am not in my body.

Did, at the time, Bruce understand the diagnosis? Did he understand what was happening?

Um, I don't think so.

Really?

I don't think so. I think, um, that's kind of one of the blessings of FTD, is that sometimes people just are not able to understand. Like, he was in his disease of PPA. Communication and hearing the words, you know, I don't think it landed. And I'm grateful for that, to be quite frank.

That he, and even now still, he doesn't understand the depth of what has happened or what is going to continue to happen. No, no. This is a progressive disease and no. He doesn't. How is he now? Can you tell us?

I think all things considering, I think he's okay. You know, again, it's like FTD is just an unkind, cruel disease. It means your brain is actually dying. Yeah. Yeah.

Your brain is degenerating. It's dying. And to have to witness it is traumatic. It's traumatic. And so you describe living with this disease and the grief that comes with it as death before dying.

How have you learned to live with this kind of prolonged grief? You just do. It is right next to me all the time. And what I have learned about grief and this process is that, you know, I need to, it's important for me to be able to talk about it. It's important for me to be able to connect

with my community about it. I really believe in talk therapy. That has been very helpful for me so that I can process it. But the grief is very much there all the time.

I'm always thinking about it. I'm always thinking about him and just how awful this is for him. OPRAH WINFREY So it degenerates to the point where he's no longer able to take care of himself? He's no longer able to function?

That is the disease.

That is the disease.

That is the disease. The disease progresses where you will no longer be able to care for yourself. Like many forms of dementia, right? I mean, it is a progressive disease. Yes.

Until there is a treatment, this disease will always win. And it is progressive. And I think that was something that was really important for me to learn

is that it's not going to get better. And what can I do to add that support around me. Okay, so you were told by a doctor that caregivers actually die at a rate of 63 percent, I was so shocked for that number, higher than people their same age who are not caregivers, that's number one. That's alarming to say the least. Did the doctor explain why?

Because caregivers don't have time to care for themselves, right? They are looking after their person. They are handling the medications, the doctor's appointments, the household. If they have young children, they're parenting. They are not thinking about themselves in any way. And when I had learned that statistic,

Bruce's neurologist had pointed that out to me, it was alarming. It is what woke me up. And I thought to myself, well, I'm not gonna have my children lose both of their parents.

I need to figure out what to do next. Okay, and so what about the telling of the friends? How did you, I mean, the difference, you do state in the book that the only difference between you and everyone else who's going through this is that you are with a person

who is well-known, is a celebrity in the world, but when it comes to the actual caregiving and all the things that come with this disease, there is no difference between you and anybody else, except that people know his name and we don't know the names of all the other people.

Absolutely, it levels the playing field.

It levels the playing field, it does. And so when you start to tell other people, I love the point that you made in the book is that people need to learn what it is themselves. It's not up to you to have to explain to everybody what it is and that it would be appreciated

on the part of the caregiver if people would get their own information.

100%, and that's what I learned, right? I was the one giving out all the information all the time. And it's like, it's even hard for me to explain what FTD. You know, people still look at me like, what are you even saying? Yes.

And I spent so much time trying to explain what it is and trying to have people try and understand it. Would you even give them the pamphlets?

Well, yeah, I'd print stuff out to like have them read, but then that's what I learned is that, your friends and family need to educate themselves. I think it's really important so that they can understand how they can best show up for you.

And another point that you made that I really appreciated in the book is that people always say, call me if you need anything or let me know if you need anything. And you were saying instead of saying let me know if you need anything, just do the

thing. Just do the thing. Do the thing. Tell me what you can do. Yes. Or here is, you know what I would love for caregivers to do, it takes a little bit of busy work for them, but you know, what are the things that you do in a week, you know, that you don't need to do that you could just allocate for someone else to do it. You know, if it's picking up the medication, if it's going to the grocery store, if it's taking my car to get the tank filled, you know, here is a list of the things that I would love for you to help with.

Or somebody to help me with, yes.

Someone. Yes.

Because caregivers are doing all of this on their own and they're just hearing these things of just, oh, let me know, let me know. Caregivers aren't thinking of like, they're just, they're too wrapped up.

They're too wrapped up. They're too wrapped up. And I think it's really important that friends and family step in. Yes, I appreciated the moment that you share when your stepdaughter Scout came to you and said, I'm more worried about you than I am about dad because you were so run down from not taking care of yourself.

And those of you who are listening who are caregivers, God, may God and all the angels bless you because until you've done it,

nobody really understands what it is. No, they don't. They think it's something different. And that, yeah. So yeah, that was another wake up call for me. And if Scout's telling me that she's more worried about me

than her own father, I was like, oh, my goodness, I am losing it. I need to get myself together. But I didn't... I didn't know how to ask for help. I didn't know how to raise my hand. I didn't know that you could.

And so that is what the unexpected journey, a great deal of it, is about, is about being, first of all, open to asking for help, but most importantly, knowing you're not gonna get through it alone. You can't get through it alone. You can't get through it alone.

It's not a solo journey. So start looking for ways that you can bring more help into your life space. I mean, obviously, you and Bruce and your family have access to be able to have, you know, full on healthcare.

A lot of people don't, but there are so many online organizations.

Yeah, I mean, it is so important to ask for help and it is so important to receive the help.

And I know people are saying, who do I ask? I don't know who to ask.

Oh, like friends and family? Yeah. Yeah, I know people are saying, who do I ask? I don't know who to ask. Oh, like friends and family? Yeah, I know. I mean, and that's the thing, right? Like I knew I could ask, but I didn't know that I was allowed to ask. And I think that caregivers think they're being a burden

or that it's their duty as a spouse to care for their person. And no one's gonna look after them better than you can. And I believe that, but it's not sustainable. Like that's the thing. And in order, this journey is long. And in order to sustain that journey,

you need to find the support. You need to bring that in or you're gonna become a statistic.

You write that once you opened yourself up to getting help, it changed everything. Can you describe your situation before and your situation now?

Yeah. Before, you know, I was trying to be a parent. I'm trying to care for my husband. I'm trying to keep things very quiet because I didn't want the news to get out about my husband before we were ready to share. And I was just trying to control all of it. And then, you know, I started to realize I had a neurologist that said, you know, Emma, it's time. You have resources that people don't. You can get help.

You can get formal care. And I really sort of dug my heels in on that, thinking like, no, I can't do that. Like, I don't, that's not gonna fly.

Why, because you thought you had to do it yourself?

I thought that I had to do it. You know, I think society has told me that like, it's on me. Like you're a bad person if you bring in help. I'm a bad person. I am not fulfilling my duties as a wife if I bring someone in. But I knew that I also needed to be a parent, and I wasn't able to show up for my kids like I wanted to. And I did.

I ended up bringing someone in. And, you know, it really, it changed. It changed everything for the better. OPRAH WINFREY It changed the way the rest of the family could also operate. KATHY KING Totally. And it also got me back into my original role of being his wife. You know, and that has been the biggest blessing, is that, you know,

there's, no one else can sit with your person and hold their hand and look at photos and, you know, listen to music and have that deep loving connection. And I am so grateful that I am back to that because when I was a caregiver, I was not that. I was up, I was annoyed, I was angry, I was resentful,

I was sad, I was annoyed, I was angry, I was resentful, I was sad, I was out of my mind.

You were sad because there's a thing that you talked about in the book. You discuss something you call ambiguous loss. On page 101, you write, in chapter one, I shared all the things I loved about Bruce in the past tense,

even though he's still right in front of me. I still love so much about him as he is today, but those things that disappeared without me realizing are at the core of ambiguous loss. The person is right in front of you, but they don't represent who they were. And I thought it was so great because it lets people know that, number one, that's a real thing and that's a real feeling. So what is his state now? He's still, so it's not like the kind of dementia where he doesn't recognize his family.

He still recognizes you and recognizes his daughters. And you're able, are you able to have a conversation? That is what PPA takes from you is your language. So you don't have the ability to speak?

No, no.

So he doesn't speak at all. Um, I mean, he speaks, but I don't know that it really tracks. Yeah. That they're real words. Yeah. Yeah. I don't think it tracks. Yeah. And so, one of the things I remember you writing in the... You said that he's actually in a blissful state.

Yeah. Yeah, Bruce isn't thinking about what happened yesterday or what's happening right now or tomorrow. You know, he is in...

Or what he has to do or what's on the schedule or...

Nothing. He is so present. He is in the here and now. And it's actually really beautiful to witness. You know, I think, I don't like it, I don't love it, but, you know, he is, he is in his body. He is, um, he is present in his body, and he's not thinking about what's to come. You know, I am. You are.

I'm thinking about that all the time.

Okay.

Um, you write on page 97 that your stepdaughter scouted, said, grief is the price we pay for loving someone so deeply. And I think it's really... profound that you are saying that you are in the grieving process now. I mean, I know someone who cared for someone for four years, and then they were afraid to, after the person died,

go on with their life. And their therapist said to them, but you've already been grieving for the past four years.

Yeah, I've been grieving for a long time, for a very long time. It's not linear, you know? There's some days that I'm feeling okay and other days that I'm not, but it's a long process and it's very hard

to lose someone right in front of your eyes. Can you explain ambiguous loss? It was coined by Dr. Pauline Boss, and it means that the person is physically in front of you, but psychologically not there. So that is a term that she's coined

and it explains exactly what happens to people when they're in and their loved ones when they're experiencing dementia. Your person is physically in front of you, but not psychologically there.

Yeah, and I think it's also important to, what your book reminded me is that people are so judgmental who are not in situations. And they say things like, well, how can you say you're grieving him when he's still here?

At least he's alive. You have him, you know, and that makes you feel what?

It makes me feel worse. It makes me feel like I'm not seen, dismissed. You know, a lot of people have opinions without an experience. And that's what I have seen and learned, and especially because, you know, we have come out as we have, you know. I'm sure a lot of people will have opinions about this interview and this book because they don't have the experience.

OPRAH WINFREY Aren't you glad you did come out though?

Yeah, I did, yeah.

Because trying to keep it a secret and whatever people would then say, not actually knowing the truth, isn't it better to have the truth out?

Yes, it was. For us, it was really important to share what Bruce had, what he was experiencing because I was so isolated and I wasn't putting the help and support we needed around our family because I was so scared that, I don't know, someone would talk.

Someone would, you know, I was so worried about that. So it came to a point where it was like, nope, this is a must. We need to come out. I also, you know, I didn't want my kids to think that we need to talk about their dad's diagnosis

in hushed tones. Like that wasn't gonna happen. I wanted to remove the stigma around it. And we were gonna talk about this diagnosis and we were, the kids were gonna see that like the reach that their father has, he is so beloved.

And you know.

I'm sure a pouring of affection.

We were gonna go out and we were gonna talk about it and raise awareness.

I know that you were aware that my team told you that we spoke to Jimmy Moore recently. Yeah. On this podcast and had the chance to ask her a few questions about the book and the family's experience. And this is what she said.

Great.

What has it been like for you to watch Emma navigate becoming a caregiver to Bruce?

There is no roadmap for how to deal with this. And you know, the, the the the the and obviously being the ex-wife even though our family is very connected is a is is an interesting position and and so much fell on Emma to really figure this whole thing out and the most

beautiful thing and she talks about this in the book, was recognizing the importance for caregivers that they have to take care of themselves. And that if they don't put that time into making sure that they're okay, that they then can't show up for anyone else.

And, you know, I have so much compassion for Emma in this, Being a young woman, there's no way that anybody could have anticipated, you know, where this was gonna go. And I really think she's done a masterful job. She has been so dedicated to, you know,

forging the right path. She's had, you know, equal amounts of fear and strength or, and courage in navigating this. And, and I'm really, you know, I think that this book is gonna really be very helpful for a lot of people who are walking through this.

Especially caregivers, you're right, especially caregivers. How has it been for you personally to watch this moment, someone you have shared, you know, much of your life with and children with, suffer from this disease?

I find it's difficult. It's hard to see somebody who was so, you know, vibrant and strong and so directed, um, uh, shift into this other parts of themself. But, you know, my particular perspective is, one, I really always say it's so important just to meet them where they're at.

Yeah.

Don't have an expectation of them needing to be who they were or who you want them to be. And when you do that, I find that there is an incredible sweetness and something that's soft and tender and loving. And perhaps it is more

playful and childlike in certain sense because of, you know, how much more caretaking they need. And really, the most important place for me is showing up and being present, just being present because if you project where it's going, it only creates anxiety. If you replay where it was and what you've lost,

it only creates anxiety and grief. When you stay present, there is so much and there's still so much of him there. It may not always be verbal, but it is beautiful given the givens.

Thanks, Demi, again. Thanks. Thanks. Yeah. Beautiful. Yeah.

Yeah. But she's right. It's about seeing there is beauty there, right? As hard as it is to lose someone that we love, we are able to tap into what is.

I wanna go back to this point because one of the main reasons I wanted to talk to Emma today is for those of you who are going through it. I want those of you who are caregivers to feel a sense of validation

in knowing that you're not alone, number one. And the other thing is to understand so fully that you can't get through it alone, you have to get help. So can you tell us again after you... what the process of getting help was for you and what that looked like in your life?

The process was realizing that I wasn't being the best parent I could be. I wasn't being the best caregiver I could be to Bruce. I was run down. It was realizing that I needed help, but I also needed someone to give me permission. And Bruce's neurologist gave me permission to think and consider help. And I hope that caregivers get that in this book.

Yeah.

That they can, that they understand that you don't have to do this alone. You shouldn't have to do this alone.

I think if you get this book, read this book, that's what you will get. Because that's what I came away with. Wow, the first thing to do is to get yourself help, and no matter where you are in the process, you've probably already waited too long to actually get help.

And that's what all the experts say.

Yeah.

People wait too long to bring in help. Way too long. And that narrative needs to shift, and we need to be given permission that it's okay. We're not a failure. It's important to ask for help.

And it's not your burden to have to bear alone. And I think what you shared earlier, Emma, I mean, about people wanting to do something but not knowing what to do, look at your life and see what are the things that need to be done,

whether it's picking up groceries, whether it's going to the pharmacy, all the things. All the things. That are needed. So when you offer yourself and help to someone, I remember this was a long time ago, Maria Shriver's mother was in the hospital and had been in the hospital for a long time.

And I did the thing that you say, do not do. I was like, well, if you need any help, let me know. And Maria said, don't ask me what you can do to help me. Just help me. Just show up. Just show up. The thing to do is to just show up. And I learned from that that even if you just go and sit with someone, just to be there with someone, not knowing what to say, not knowing what it is I can do, just showing up makes a difference. The journey is so isolating and we isolate ourselves.

And connection is so important. You know, finding your friends, finding your family, but also as a caregiver, finding your community.

You know, who are your people that understand you?

And it's so much easier to find a community now because for your specific ailment or disease, there's an online resource for it.

It's very important to get a diagnosis. I think that is key in all of this.

It's key because, as you'll see, when you read The Unexpected Journey,

not all dementias are the same. Not all dementias are the same. So not all support groups are gonna be the same.

And not all support groups are the same.

So it's important to find the association that is associated to the disease that your loved one is experiencing. And that way, you know, for me, it's the association of frontotemporal degeneration. They have been a lifeline for me. You know, they've connected me with resources. You know, they've connected me with other caregivers because FTD strikes young.

And you know, usually these families have young children. And so it's been beautiful, like, to be able to have that connection, to be able to sit down across from someone and just, they get you, they see you, they understand it. You don't have to explain it, over explain it. It's very important to find your community. That has been a lifeline for me.

Speaking of explaining and over explaining, I think you do a great job of breaking down in this book how to talk to your children and you talk to different, you talk to your children depending on what ages they are. Right. What you say to a five-year-old, you don't say necessarily use

the same language you'd be using with a 10-year-old and 14 and up is something very different.

Yeah, and I didn't know that. I mean, that's why I brought specialists in to sort of help me navigate that.

You interviewed and talked to over 25 experts,

I heard, in writing this book. I did, yeah. And these were all people that sort of helped me and I gathered all this information to be able to share with the next caregiver. And, you know, for our children, Mabel and Evelyn were eight and 10 when Bruce was diagnosed. So, you know, they were very young. And what I learned is that, you know, we, we, I told them about the disease and then just gave them just bite-sized information. That was right. That was age-appropriate for them.

And if they wanted to know more information, then I would give them more information.

And they couldn't pronounce it, so they called it Fantastic Turtles Dancing?

That's right. Yes. Yeah. FTD. FTD. Yeah. And, you know, we had this vision of, like, oh, these fantastic turtles dancing in their dad's head. And, you know, it was sweet and funny. But yeah, so it's important that what I've told them that if anything changes with their dad and his progression, I'll let them know. You know, I don't like to give them too much information,

but it's important to communicate. I communicate with my kids a lot. And I'm very honest with them. You know, you think you want to... you want to protect your kids.

So, is the way this disease works that you have periods of where things seemingly are okay for a while, and then there's another drop or decline and something else deteriorates?

Yes, absolutely. I think anyone going through dementia understands that like you have times where things are very stable and then the next shoe drops and then you have to figure it out, what to do, how to support.

And we're in one of those phases right now where things have been stable for a really long time. And now it's just, there's been a subtle shift and I'm out of my mind because of it. And that's why I'm so happy I have this book because I go back to the book and be like,

what do I do when I'm out of my mind? Oh yes, these are my tools. These are the resources that I can go back to. I wrote that book for the next caregiver, but I am a caregiver and I am a person that needs that book and I need the reminders.

So yeah, I'm a little disconnected from my body and my brain right now, because even though I'm sitting here, my mind is with Bruce and how he's doing.

Understandable, that's understandable. Some of our podcast listeners wanted to talk with you. Brenda joins us from Colorado and her husband Kevin was diagnosed with frontotemporal dementia just one year ago, correct?

Yes, that is correct.

Yeah, you are now his primary caregiver?

I am, we are, exactly like Emma said, we're heading into a phase where I'm going to need a little more help. My husband actually has the behavioral variant of frontal temporal dementia. And it started showing up in his work in about 2020. He was a country club manager, very buttoned up, professional, amazing leader. And he started blowing off meetings and his behavior changed dramatically, but it wasn't all at once. I thought like his humor became kind of raunchy and inappropriate. He was missing his own meetings.

He got feedback from his board and didn't really care. He wasn't working on himself like he normally would. He was eventually terminated. And then we got the diagnosis of mild cognitive decline, which I think is pretty common. But I even knew at that neurologist appointment

that it was not mild. And then he went to drive a school bus which was kind of his dream, his retirement dream even though he was not supposed to retire yet. And a year later, I attended a meeting with him because I could tell things were not good. And he was fired for a whole list of grievances. He was combative, which is

he's never had a combative day in his entire life. He was using profanity. He was late for every route. It was just literally unbelievable. And I gave that letter to our neurologist, who did another MRI. His first MRI was clear. And then two years later, another MRI

did show deterioration in the executive functioning. And they diagnosed him as BVFTD.

So that's the behavioral portion, the behavioral portion. And how is he now?

Well, he, I always say he's 20% still my husband. He's 80% an alien. He has a very different sense of humor. Part of the behavioral variant is they lose their empathy. So you can't, if you tell him your problem or our son would, who's 27 would like say a work problem,

he would make jokes about it. And he's lost his empathy. His eating behavior has changed dramatically. He's obsessed with carbs, which is very common for that, you know, M&Ms and all kinds of stuff. And you can't really,

he has a kind of a hair trigger temper now. I've learned very quickly to work around that and not trigger. But otherwise, he thinks he's retired and he's happy. Much of what Emma said validated me. I feel seen and heard and I'm incredibly grateful.

The question I have for Emma is, how do you deal with the loneliness? Like, I've never been lonely a day in my life, but I am lonely now because, you know, just like you explained, he's there, but not there. Ambiguous loss. He's my partner, but not.

How do I deal with the loneliness? You know, I think where I am lucky is that I have young children and I am always busy with them. I am parenting, I am caregiving. I, you know, I am not sometimes connected to my body

so that I don't have to feel those feelings, you know? Um, the loneliness, it's there. And I will say that I have habituated to it. I have gotten used to it. I know that's not an answer that you want to hear, but what I will say, the importance is again,

finding your people, finding your community, so that you can talk about these things and that you're not just ruminating on it, that I think it's so important to just vocalize these feelings and these emotions because you will meet other people that are like, yes, I am lonely too.

You know, I'm sometimes just stuff my feelings. That's not healthy. You know, I'm sometimes just stuff my feelings. That's not healthy. I know that.

Mm-hmm.

But I think it's really important to be able to verbalize. As I tell my children, better out than in. It is so important to talk about your feelings and be heard and be validated about your feelings.

So right now, Brenda, you are the, you said you were the primary caregiver. Do you have any help at all?

Well, he can do a lot on his own, like dishes and he watches TV, but I do need to come to the office. And so next week I just interviewed caregivers and I found an agency that is going to send a mail because like I said, Kevin has some inappropriate humor.

And that person is gonna take him to Botanic Gardens because I just feel like he's deteriorating because I'm not there during the day at least four days a week. And so, and he's starting to make some bad decisions, the oven, under cooking food. And so I think-

Can I just stop you for a moment? Can I stop you for a moment? There's an example you use in the book about, I don't remember who said it, about could you leave your loved one alone in the house if there was a fire, would they be able to get out? Do you remember writing that?

Yeah, no, absolutely. I mean, those are the things that you have to think about. It comes down to safety.

Yeah.

Right? If he were left alone in the house right now and there was a fire, would he know what to

do?

I believe he would, but we are in a place of progression right now, and so I'm not gonna take any chances. I think we've been fine up until now, but I'm just seeing some warning signs that we need more help. His buddies come and get him and golf with him, which is a whole thing.

Very patient, wonderful guys. So he's not alone four days a week. And I, of course, you know, try to, he sleeps quite a bit. He sleeps like sometimes 15 hours. And the neurologist said that's when the brain

cleanses itself and to let him do that. And so that reminds me of like when my baby was little, right, when they're sleeping, you don't worry as much.

I'm happy to hear that you have friends that are taking your husband out to play golf. I think that's beautiful. And I'm also happy to hear that you are interviewing formal caregivers. And I think with this disease, it's so important to,

one, you have to get out of the denial. You have to realize that it's happening, you have to understand that it is progressive, and you need to be a couple of steps ahead of it. And I think that's where I have found a lot of comfort is to be a few steps ahead, you know, to really educate myself about the disease because knowledge

is a big stress reliever. Yeah, and when you find your people, as you mentioned in the book, you find your, I think, was it somebody named Fran? Franny. Franny, there was a few steps ahead of you, then that allows you to know what's ahead

and also to begin to prepare yourself, prepare yourself.

Yes. Absolutely, and I just want to express my gratitude, obviously, to Oprah and all that you've given, and to Emma for going public, because from the day you did, I've been tracking you, and now I can just read your book and I don't have to Google you constantly. But it has been a huge, huge validation for me, because it's not Alzheimer's. And God bless the people that have to deal with Alzheimer's, but it is different.

It's different. It strikes younger.

Yeah. Thank you, Brenda. Thank you so much. Thank you so much. Thank you. So, Erica is joining us from Texas. Erica was a guest on our podcast with Esther Perel a while back. Erica, good to see you again.

Hi. Good to see you, too. Thank you so much for having me.

You were wearing pink today. It was green the last time. I remember you told us that you are the caretaker for your mother. And so I asked the producers if you could zoom in for this conversation. How has being a caregiver impacted you?

Oh, my goodness. First of all, thank you so much, Emma, for sharing your story. Thank you, Oprah. It has impacted me in a way that I never could have imagined. Being an only child, years ago, my mother went through so many different things. And I used to say to myself, oh my gosh,

I've got to prepare myself financially, health-wise, because I got a feeling that I'm going to have to take care of my mom one day. And she used to always say that. She used to always say, I'm coming to live with you, coming to live with you guys.

And I'd be like, oh, no, you're not. Because the relationship was strained. It wasn't a good relationship at all. And so I got a phone call about eight years ago that my mom's behavior was weird in another state. I got in the car the next day and drove, and what I saw was shocking.

I had just spoken to her. She didn't recognize me. She still had on her Sunday dress, and it was Monday. Everything was disheveled. Rushed her to the hospital and they said, your mom has dementia. And I'm like,

dementia? What do you mean? And two weeks later, we had to figure out what to do. And they said she can't live alone. And I turned to my husband and I said, I don't know what to do.

We were in the middle of retiring, still raising kids. As Emma was saying, I had a son that I was homeschooling and he was just getting ready to go into ninth grade and we had to bring her with us. And it was a nightmare. It was a nightmare. We had to move her in. And so that same kind of behavior that I experienced as a young person, as a teen, it just seemed to escalate in our home.

So like Emma said, it was hard to tell where the, where the, my mother-

Disease, the disease.

Exactly, I mean, she would say things and they would be like, oh, that's the disease. But I'm like, she said that to me when I was 16 and it just became really, really bad. And I don't want, I don't know how to say this, but she's very religious to the point that it's kind of, it makes it hard

because everything is about, you know, she doesn't have dementia. God healed her. Everybody else is just not believing she's healed. God brought her here to, you know, be a blessing to me and help me.

I literally just I don't know what to do I don't know what so what did you do

what did you do.

I just took care of I just brought her in took it to the found doctors like him a founder new colleges got testing and they told me she had Lewy body dementia with mild Parkinson's. To my surprise, they put her on hospice in my home.

So I had nurses coming, chaplains coming, and I was cooking for her. I was giving her her medicine. All of this happened within a month's time. And that was eight years ago. And it was so bad over about a year and a half,

I had to lie to get her out of my home because it literally almost broke me. My husband found me in the closet, just curled up. And he's like, what's going on? I said, I feel like my life is over. I feel like I'm being, at that time, I said,

I feel like I'm being punished because she was of the mindset, you honor your mother. You know, the Bible says, honor your mother and you're not honoring me and you got to do this for me. And I remember driving her to a doctor's appointment and I just could not figure, I said, what is going on with you?

And she just looked at me and she just screamed, you owe me. She said, I've done everything for you. I took care of you as a child. Now you owe me." And I went, oh, wow. And so it's been difficult, but she lives on her own now. And as Emma said, if I didn't have the resources to help me...

So you moved her out of your home, is what you did. You moved her out of your home in order to save

your own sanity? Yes, save my marriage, my relationship with my kids. Like Emma said, I stopped almost being a parent. It was like, okay, I hear you having trouble in school, but wait a minute, I gotta take grandma to the doctor. And it was just so much now, eight years later, now we can have the conversation.

And I just said, I'm so sorry. I didn't know what to do, how to do it. And I did find groups. I have caregivers now that come, they take her to the doctor, they take her to church, they take her, right now she's at a hair appointment. But it's like, when I talk to her sometimes,

it's me that should be doing that. And she says, well, you don't take me anywhere and you're just not a good daughter. And it's just so hard to, you know, to...

Are you letting that guilt get to you?

I did. I did. And thank God for my husband and my adult kids now. They're like, Ma, you know, you've done everything. There is nothing else. And I think the biggest piece is, you know, we talk about the old, the generation now, that entitlement. It's like, my question is, how do you reconcile

when you have a parent that feels entitled? And that's the part, just the guilt of, okay, I'm doing this, and she'll say, well, why didn't you take me to get my hair done? And I would say, well, mom, I had something going on. Oh, what about me?

It's always about you, and it's so hard. It's like, okay, is that dementia? Is that my mom?

Yeah, it feels like whatever is going on with the disease has exacerbated whatever the relationship was before. So Emma, what do you want to say to Erica?

I mean, I couldn't imagine what it would be like to be caring for someone that you have a complicated relationship with. You know, I can't imagine what a burden that must be for you. I am sorry. I am really sorry to hear that.

And I can hear the guilt and the trauma and all of this that this has brought to you. I think it's so... You know, she's clearly in her disease. I know that something that helped me was also like learning and, you know, it was learning to separate my husband from his disease.

That, you know, what he is doing or saying is not him.

It is his disease.

And that brought me some comfort. But I'm also really happy to hear that you knew how to care for yourself. You knew what needed to be done.

After being curled up in the closet, it took being curled up in the closet to get there, but at least you got there.

Yeah. You got there. You're a mother, and you're a mother first, you know? But I'm really happy to hear that you knew how to care for yourself. And you did the right thing that was right for you and your family.

And I think one of the things that you make clear in The Unexpected Journey is that a lot of people have this guilt because perhaps maybe you had a loved one who said, you know, I never want to be put in a home, or I never want to be sent away, or I never never wanted to know or I would never, never do that. I think when you, you get to

the point where there is nothing else to be done, then you have to make that the decision that is the best for yourself. And one of the things you say in the book is that what people are really saying is I don't want to be abandoned. I don't want to be left alone. I don't want to be forgotten. But if the best care is putting your mother in a situation where she will have other caretakers

and you will be able to carry on with other portions of your life, then you have done the best you could do. You have done the best you could do.

And her needs now are being met 100% of the time. I mean, I think people don't understand that, that our needs are never met. Like our persons, even when we are caregiving, if we are not, we're not qualified for this job. Sometimes the disease goes beyond what we know how to care for. And, um, you know, you're just thrust into this role. And I think that now your mother's needs are being met

so that your needs could be met.

And I think that one of the things that you get when you read The Unexpected Journey is even though there is deep love and deep compassion and honor for your loved one, it doesn't mean that you have to sacrifice your entire life. That is not what is required in order to carry on. I think you've helped a lot of caregivers. That's why I say I think this is gonna be so liberating for caregivers

because there are, if you can get the help, you should get the help. And the first thing you say over and over and over in this book is that, get yourself the help. If there comes a time, I mean, there will probably come a time when you won't be able to do all the things that you wanted to do for Bruce yourself, and you need other people.

Have you brought in other people to help?

Yeah, this disease takes a team. And I think that so many people are doing this on their own.

And even if that means him not living with the rest of the family.

This takes a team. Sometimes it means that you have to look at your house. You have to look at, is it safe for someone to be living in this house? Is it safe for me? And is it safe for someone to be living in this house? Is it safe for me and is it safe for our children? Like you, it is a very personal decision

and it comes down to safety. You know, it comes down to making the right decision

for you and your family and for your person.

And you did that, Erica. That is what you did.

I had to, and it's so interesting. My grandmother suffered through dementia. She was in a nursing home the last 10 years of her life. And I watched my mother run herself into the ground, just doing everything. And I think part of that,

that's what she expected me to do. But I looked at my body, my everything, and then going through what I was going through, I was going to kill myself. And I just said, I cannot do that. And like she said, they need their mom.

My husband needs his wife. And I decided to do that so that I could live a longer, productive, healthier life and not end up like my mom.

Thank you. Thank you again. Thanks for talking to us again.

Thank you so much.

Beautiful, beautiful.

Thank you so much. Thank you. Beautiful. So I've seen online that there is this outpouring of love and support from Bruce's, from all of his devoted fans and they're all over the world. And you write this about what you believe his legacy will be. You say his legacy will live on through our family. And you even say that even if he is known for this disease, that will be okay with you.

Yeah, just as Lou Gehrig's disease is known as ALS. I think if FTD is known as the Bruce Willis disease, I think that he would be okay with that because I think that it puts a face to this disease. It will bring in more research, more funding for a disease that really we have nothing, you know,

people are getting diagnosed too late to be able to go into the trials that are available. So, you know, the awareness piece of this is so important. You know, I learned from one of the experts in my book, Dr. Bruce Miller, that his specialty is FTD. And he says, when you notice someone

in their 40s, 50s and 60s, when they should be stable and participating in the world, but if you start noticing that they are not who they used to be, something is off, that is a change in the brain and that needs to be looked at.

And I didn't know that early on. And I think the awareness piece is so key because we want people to be diagnosed early so that they could receive the right treatment so that families aren't broken up in the midst of it.

The other thing you say is his legacy will live on through our family, his work in film and music and the millions of lives he's touched, but I believe he's leaving something even more profound, something that will ripple far beyond Hollywood. His journey is shaping the conversation around FTD,

dementia, and caregiving, shifting the narrative in ways I hope will soften the experience for others walking this path. That means you, Erica, and you, Brenda, and all of you who are listening to us. I know Bruce's legacy won't just be

about the art he created. It will be about how he loved and how that love carries on through us. Beautifully said. You co-founded the organization Make Time Wellness. What is your most important message to caretakers?

That you've got to take care of your health and you have to take care of your brain. You know, your brain is such an important asset. You know, I think that when you see someone that you love start losing parts of their brain, it really, you know, makes you sort of sit up and think, okay, what can I do for myself?

And, you know, taking care of my brain, then I'm looking after my whole body. We have to look after ourselves. We have to put ourselves first because if we don't, we will not be able to sustain this and we will not be able to show up for the person that we love. Thank you.

Thank you, Oprah. Thank you.

Thank you so much. Emma Hemming Willis for sharing your unexpected journey with us. The book, The Unexpected Journey is available September 9th, anywhere books are sold. And if you're a caretaker or you know somebody who is, I'm telling you, when you think,

oh, what could I do for them? This would be the book to give to a friend who is a caregiver. It's a vital book to have on your nightstand and to share with others who are going through it. My thanks to Brenda and again to you, Erica, for sharing your own caregiving experience. And all of you who are out there doing this daily,

feeling unseen, unvalidated, know that you are not alone. And this book is a big validation. Thank you for taking the time to be with us today. Go well.

So much.

Thank you. You can subscribe to the Oprah podcast on YouTube and follow us on Spotify, Apple Podcasts, or wherever you listen. I'll see you next week. I'll see you next week.

Thanks, everybody.