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[00:02]
T-Mobile Customer
I love my phone, but not my carrier. What do I do?
[00:04]
T-Mobile Representative
Well, there are 250 reasons to join T Mobile.
[00:07]
T-Mobile Customer
Like what?
[00:08]
T-Mobile Representative
You can keep your phone and your number and T Mobile helps pay it off up to $800 per line.
[00:13]
T-Mobile Customer
So I wouldn't have to buy a new phone?
[00:14]
T-Mobile Representative
Yep. Plus your plan price stays the same for 5 years on experience plans.
[00:18]
T-Mobile Customer
Nice.
[00:19]
T-Mobile Representative
Find your reason@t mobile.com
[00:23]
T-Mobile Disclaimer Voice
via virtual prebaid guard card typically takes 15 days after rebate, submission price guarantee on TalkText and 5G data exclusions like taxes and fees apply.
[00:31]
Kiana (Shopify Testimonial)
I'm Kiana and I leveled up my business with Shopify. Once I figured out that Shopify was a thing, I never turned back. I can create a site with my eyes closed. Shopify thinks ahead of us, you know, and it thinks about the customer more than anything. Every day I'm thinking about some other new business, but Shopify is doing it to me because it's so easy to use. It's like, I can't stop. I'm addicted. Start your free trial@shopify.com.
[01:03]
Hoda Kotb
Sometimes life asks us to become someone we never imagined we'd have to be. We make plans, we build careers, we
[01:11]
Podcast Host/Interviewer
raise families, believing we know what the next chapter will hold.
[01:15]
Hoda Kotb
And then, in an instant, everything changes. Well, my guest, Emma Willis, knows that feeling all too well.
[01:22]
Podcast Host/Interviewer
After her husband, Bruce Willis, was diagnosed with frontal tempora dementia, Emma found herself navigating a role she never expected.
[01:30]
T-Mobile Disclaimer Voice
Caregiver.
[01:31]
Podcast Host/Interviewer
So what began as a deeply personal experience has since become a mission to support millions of families who often feel unseen and alone. Through one of the hardest seasons of her life, Emma Heming Willis discovered a purpose she never would have chosen, but one that has changed not only her own life, but the lives of so many others.
[01:53]
Hoda Kotb
I'm Hoda Kotb, and this is my podcast, Making space. First of all, happy birthday.
[02:11]
Emma Heming Willis
Oh, thank you.
[02:12]
Podcast Host/Interviewer
You know what, thank you.
[02:13]
Emma Heming Willis
I'm happy that, you know, I'm happy we're still celebrating. I was thinking about this yesterday. Like, when you celebrate a milestone, like 50, shouldn't it go on for like a really long time?
[02:22]
T-Mobile Representative
Yes.
[02:23]
SoFi Advertiser
Yes.
[02:23]
Wayfair Advertiser
Okay.
[02:24]
T-Mobile Representative
Well, you're ready.
[02:24]
Podcast Host/Interviewer
You should be having a months long celebration. Tell me what it felt like to turn 50 and what was that celebration like for you?
[02:34]
Emma Heming Willis
You know, I really was looking forward to 50 because I have to say, my 40s felt like a little bit of a doozy.
[02:41]
Discover Card Advertiser
Yeah.
[02:42]
Emma Heming Willis
And I was just ready to embrace my 50s. I've heard so many wonderful things about, you know, going into your 50s. With much more confidence, kind of like a I don't give a attitude. And I really was excited about it, and the celebration was lovely. I, you know, have not really been in the celebratory feelings of late, and I was unsure if I really wanted to do anything. But I had a friend of mine who kept sort of pushing and saying, you know what? You don't want to miss out on your 50. You have to celebrate in some form or fashion. And I really sat with that, and I thought about it, and I thought, you know what? I don't want to look back and. And think, why didn't I celebrate 50? It is something to celebrate. And my mom and some friends put together this really lovely party at the house. They said, what are a couple things that you want? I said, I want to eat tacos, and I want to have a margarita, and I want to be with my friends.
[03:47]
Podcast Host/Interviewer
By the way, I think what you
[03:49]
Hoda Kotb
did underscores something that so many people who are going. Who are in the middle of a difficult time struggle with. And it's like, how can I have this celebration while this is going on? And I know one of my dear, dear friends, my best friend actually lost her husband, and I remember her navigating this time, and I was watching her, like, get chipped away. And those moments that you would have celebrated, there's guilt that comes with. There's moments you want to do something, you say, oh, but I can't.
[04:20]
Podcast Host/Interviewer
I can't.
[04:20]
Hoda Kotb
There's a million other things that I need to be doing for him. Do you or did you wrestle with that?
[04:27]
Emma Heming Willis
I always wrestle with it. You know, I think guilt is something that I am always carrying, but I've learned that it is really not helpful. What I know is I always go back to what would my husband want for me? And he would want me to have a big, fun bash. He would want me to celebrate, you know, my life with my friends and family. And that is sort of what I always think about when guilt of any sort, sort of, you know, comes in front of me. And I'm really happy that I did. And, you know, we brought together my friends, some family, and it was just a really lovely, intimate night. And on top of it, it was the Knicks final. Oh, my gosh. And they won. And, you know, I would say about 98% of the people there were Knicks fans. So that was fantastic. And it just was. It was a. It was a great celebration.
[05:30]
Hoda Kotb
I love it. I love it so much. So 50 for me was also a time just to reflect to look back and when reflecting, and I'm sure in your life, you look back at the beginning of where life started with Bruce.
[05:43]
Podcast Host/Interviewer
What was the thing you fell in
[05:44]
Hoda Kotb
love with back then?
[05:46]
Emma Heming Willis
Oh, my goodness. You know, I met him in, like, 2005. I want to say 2004. And we met at the gym, like most people in Hollywood do. I guess his time was before mine, and we would, you know, sort of overlap. And, you know, the things that I remember about him was just how warm and charismatic, how funny he was, but always really took the time to want to learn more about me, you know, just more about who I was, about my life. And prior to that, I had never really thought about Bruce Willis. I grew up watching Moonlighting, but I was never, like, an action sort of movie fan. So when I had noticed him, I had said to my mother, you know, I met Bruce Willis, and he's really a lovely man. And my mom was like, what are you doing?
[06:48]
T-Mobile Customer
Doing?
[06:49]
Emma Heming Willis
You're engaged to be married? I said, no, no, no. You know, I am. Yes, at the time, I was engaged to be married. But, you know, I had met him, and I just noticed that. And it wasn't until years later, after my, you know, engagement fizzled thankfully, that we went on our first date. And, you know, I just really loved being around him. You know, it was just something very warm, safe, and fun. You know, my husband is just so full of life, and it was a really beautiful time. It was a really great time in our lives.
[07:31]
Hoda Kotb
They say that we often, like, seek out the traits we don't have in our partner. I think that's true of me as I look down. How did he help you become you?
[07:42]
Emma Heming Willis
Yeah, I mean, if opposites attract, that couldn't be more true than for my husband and I. You know, he is very spontaneous. I really like a plan. I am very sort of type A. You know, I think that he just really enjoyed life. And it's not that I didn't, but I needed structure. So I felt like we, in a way, helped each other. You know, I think that what he has instilled in me today is to be a little bit more spontaneous, have a little more fun, you know, where I can tend to sort of want to put things in a box. But as I'm raising our two young daughters, I really need to bring more of that into our lives. You know, fun off the cuff, you know, a little wild is okay. And I really appreciate that, that he has given me that. And I try, you know, his saying is, live it up. And that's what I just try and remember all the time, is to live it up.
[08:44]
Hoda Kotb
Oh, I love that saying. Oh, I love that a lot.
[08:48]
Podcast Host/Interviewer
So as you guys were building a
[08:49]
Hoda Kotb
life and a family and kids and your, you know, everything, of course, looks, you know, just perfect.
[08:56]
Podcast Host/Interviewer
But when you were on the inside
[08:58]
Hoda Kotb
and you noticed, like, different parts of what appeared to be his personality coming out in weird ways.
[09:05]
Podcast Host/Interviewer
Tell me about what that was like,
[09:07]
Hoda Kotb
watching what was a sort of strange change in him that you couldn't identify or put your finger on or figure out.
[09:14]
Emma Heming Willis
Yeah, I mean, you know, really, for my husband, it was more so his language. I started noticing a stutter that he had had a severe stutter that he has, you know, talked about openly. That was quite debilitating for him as a young child. It started to come back. It's not that his stutter wasn't there throughout his life. He's just sort of learned to sort of manage it. But then I started noticing that he was not managing it anymore. So I think it was language conversations that we were having that we'd had in the past. Things that we were very aligned on. We weren't anymore. You know, there was a lot of miscommunication sometimes no communication. It was very odd for someone who is such an incredible communicator to all of a sudden not be one. And never in my wildest dreams did I think that was an early symptom of the diagnosis that he received years later.
[10:21]
Hoda Kotb
Must have been Emma. I was thinking about, you know, your kids watching this sort of lack of communication, or mom and dad aren't on the same page. They sort of sense. Kids sense when something is funky. Did your children notice that something was off, or did you guys kind of mask it?
[10:38]
Emma Heming Willis
I think there was a lot of masking going on. I think there was a lot of smoke and mirrors. You know, you'd have to think that when our two daughters were. When Bruce was diagnosed, they were just 8 and 10. So you'd have to think that those symptoms were happening prior. They were very young. You know, they were still very young, but Bruce was still very engaged with them. It's not that he had to be having these very deep conversations with them, but, you know, just to be able to be the fun dad that he has always been. I think that is what they could feel and sense, that there was so much love surrounding them. And I think, you know, as time went on, I was able to sort of bring them in a little bit more to kind of, you know, just give them A little bit of information about what I was noticing and that we were going to be, at some point, you know, going to the doctor and hopefully getting a diagnosis. So I gave them these little tidbits along the way because I didn't want to all of a sudden land on a diagnosis and then just drop a bomb on them.
[11:44]
Hoda Kotb
How does it go from like, having communications issues and wondering, like, what's up with him? Why is he acting like that way, to this might actually be a medical issue that we're dealing with?
[12:00]
Emma Heming Willis
I think, you know, I get that question a lot. And, you know, no one knows our people better than us. You know, if it's a parent, a spouse, a sibling, you know, we know who our people are at their core. And I know I knew who Bruce was. And there just came a point where I was like, this is not my husband. Something is going on. And that was my cue to just kind of step it up and figure it out and how to, you know, get him to an appointment.
[12:34]
Hoda Kotb
Was he willing or did he say to you, come on, this is. I'm fine. There's nothing wrong here.
[12:41]
Emma Heming Willis
You know, I have to say, my husband has always really followed my lead on so many things, for better or for worse, and he listened to me, and, you know, I was able to speak with his Dr. Prior and, you know, just to be able to go in there in the most loving, kind way that would be supportive to him. So, you know, thankfully, he's gone along with so many things. Thankfully.
[13:12]
Hoda Kotb
So you go in, Emma, to this doctor's appointment. We all go in whenever everyone who's listening has some sort of cross to bear, whether they've had a cancer diagnosis or they've gone through something. When you walk into a room, you kind of play out what the worst case scenario might be. What am I walking into? Did you have any preconceived ideas about what. What you might be learning when you walked in there?
[13:37]
Emma Heming Willis
Yeah, I mean, this took a while, right? Like, our first diagnosis that they had landed on was just aphasia. And aphasia was a symptom to a disease, but at the time, it was aphasia. A year later, they landed on frontotemporal dementia, and the variant of that was primary progressive aphasia, or ppa. Going into that appointment, I knew it was going to be the day that we finally received an actual diagnosis. But nothing could have prepared me for ftd. You know, I had heard of FTD many years before, decades before, and I remember it was a family friend that was going through it, and I just remember thinking how God awful this disease was. And through the years, you know, I had heard people talk about different forms of dementia, and whenever FTD would come up, they would say, oh, boy, that, you know, that's the one that you don't want.
[14:34]
Hoda Kotb
Why is that? What was it about that disease?
[14:37]
Emma Heming Willis
You know, listen, I think all types of dementia are hard. I think there is something about FTD where, you know, it is the most common form of dementia for people under the age of 60. It can affect people through their behavior, language, or movement. You know, if you are under the age of 60, you are in the prime of your life. You know, you are raising young children, you are holding down your job. There are so many things that are going to be taken away from you. And, you know, I. The variant of what Bruce has is communication. So, you know, imagine what that's like to lose your words and your ability to communicate.
[15:25]
Hoda Kotb
So you're in the doctor's office and the words that you had already learned about FTD come out of the doctor's mouth. So then what?
[15:37]
Emma Heming Willis
I just remember my whole body tingling. I felt like I was free falling. I had this, like, wafting in my ears and I couldn't believe what I was hearing. What I learned in that appointment is that there is no treatment. There is medications that you could probably do to manage symptoms over time. And if it's a genetic component, you'd have to think about what this looks like for family. There was a lot of really harsh information that was given, and we were sent on our way with no clear direction, no roadmap, no what to do next. And it was just a check back in in a couple months, and that was it. So it was a really traumatic experience. And I walked out of there with questions. Very confused at the time. I was just learning how to. I mean, I didn't even really know how to advocate in a doctor's office. You know, I really have always put doctors on such a high pedestal, which, you know, they should be on, which I was raised to believe that. And I felt like that doctor would have told us everything that we needed to know. And there was. I couldn't. I didn't feel like I could push back and say, you know, what supports are offered here? Or what can I do? Or, what should I? How do I think about our two young children? So I left. And really quickly, I realized just how unsupported caregivers are.
[17:18]
Podcast Host/Interviewer
More with Emma Heming Willis after the
[17:20]
Pantene Advertiser
break,
[17:28]
Wayfair Advertiser
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[18:25]
T-Mobile Customer
I love my phone, but not my carrier. What do I do?
[18:28]
T-Mobile Representative
Well, there are 250 reasons to join T Mobile.
[18:31]
T-Mobile Customer
Like what?
[18:32]
T-Mobile Representative
You can keep your phone and your number and T Mobile helps pay it off up to $800 per line.
[18:37]
T-Mobile Customer
So I wouldn't have to buy a new phone?
[18:38]
T-Mobile Representative
Yep. Plus your plan price stays the same for 5 years on experience plans.
[18:42]
T-Mobile Customer
Nice.
[18:43]
T-Mobile Representative
Find your reason@t mobile.
[18:46]
T-Mobile Disclaimer Voice
Via virtual prepaid guard card typically takes 15 days after rebate submission price guarantee on TalkText and 5G data exclusions like taxes and fees apply.
[18:54]
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[19:12]
Wayfair Advertiser
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Cricket Wireless Advertiser
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[19:25]
Hoda Kotb
So if you could have a redo of that day in the doctor's office, what would you have left with? What do you hope? People who are getting a diagnosis today would leave the doctor's office with a
[19:41]
Emma Heming Willis
simple piece of paper that has a couple of resources on it. You know, like for us, because Bruce was diagnosed with ftd, there is an association of frontotemporal degeneration. And even just one resource, that resource would have been so helpful for me because I could go onto that website and get proper information about the disease, what resources are out there, what it is that I need. Connect to a support group, a community. I mean just one resource would have been great. But a check back in in a couple of months, that is nothing. You know, that's absolutely nothing. So the book, the book that I ended up writing. It's the book that I wish someone would have handed me the day we left the diagnosis.
[20:26]
Hoda Kotb
Who was your first phone call after you got the diagnosis?
[20:31]
Emma Heming Willis
Who was my first phone call? You know, I. I think it was our family. You know, I think it was our intimate group to just inform that. Honestly, it is such a blur. It is really such a blur.
[20:48]
Hoda Kotb
Sure.
[20:49]
Emma Heming Willis
But I think those were sort of the first calls. I mean, you know, our family knew that was gonna be the day. So I think, you know, everyone was ready to hear and learn what was
[21:01]
Hoda Kotb
your call to action. So you get home, you walked into the doctor's office one way, you're leaving another way. And I keep thinking, like, in life, there are probably a handful of times where we're literally on our knees. In your lifetime, whether you lose a parent, a loved one, there's a horrible diagnosis, something happens. So what did you do when you knew now it was time to do something?
[21:27]
Emma Heming Willis
I knew very quickly that I wasn't going to allow this disease to take all of us out. You know, I had two young children that I needed to continue to care for and raise. And I just kind of put my big girl pants on and, you know, went to work. I started, you know, doing a lot of research online to learn more about the disease, to learn more about services that we might need. I was lucky enough to be able to have sort of a medical company that was helping me also, you know, put some really, you know, important things together for us. But, you know, I just got to work. I think what's dangerous is that when you leave a doctor's office and then, you know, your only choice is to go onto the world wide web to search up, you know, any kind of disease. I mean, any kind of headache. You know, you're like, why do I have this headache on the left side? Oh, it's a brain tumor. You know, it's just. It's not the appropriate information. It's not the right information. And, you know, I just think that we need. We need more support. We need something more when we are leaving these appointments that are life changing.
[22:43]
Hoda Kotb
So you said your girls were 8 and 10 at that time?
[22:47]
Emma Heming Willis
8 and 10.
[22:48]
Hoda Kotb
So what was the conversation there? How did you navigate that?
[22:54]
Emma Heming Willis
They knew that was going to be the day. And when I came home, I told them that, you know, dad has a disease called frontotemporal dementia. We can use, you know, ftd. And they were like, you know, fdt, you know, they couldn't get the letters right. And we they came up with an acronym, Fantastic Turtles Dancing to be able to remember, you know, just the letters of this diagnosis. And, you know, I. What I had learned is just to wait to hear what the questions that they might have. And they didn't really have too many questions. You know, they were 8 and 10. And I just gave them just enough. Enough in an age appropriate way. And, you know, that was it for that time being just enough information for them.
[23:51]
Hoda Kotb
I mean, I'm raising two girls who are of the age, they're seven and nine now. It's a lot just raising them. The idea of having another huge responsibility, something that occupies all of your time and attention and concern.
[24:13]
Podcast Host/Interviewer
How did you do that?
[24:15]
Hoda Kotb
Like, I'm trying to imagine as I'm sitting here doing that. How did you.
[24:19]
Emma Heming Willis
I mean, Hoda, you just do, right? You just do. You just show up, you know, again, like, I. I knew that I needed to rise to the occasion. I knew what was important to me, what was important to my husband, and you just go, you know, there was no other option. There was no other option. So.
[24:41]
Podcast Host/Interviewer
So what did you physically have to do?
[24:43]
Hoda Kotb
What were the tools? How did you care for him?
[24:47]
Emma Heming Willis
You know, one of the first things that I looked up was dementia care specialist. You know, I needed to understand more about me becoming a caregiver, what that looks like for someone with dementia. You know, how do I learn something that I have never, you know, had to do? And Teepa Snow was someone that was the first person that sort of came up on, you know, this website. And she was an occupational therapist, someone who is very knowledgeable about dementia. And she was really one of my first calls. And what I loved about TEPA is that she was so knowledgeable about ftd. You know, FTD is a rare disease, but again, it's the most common form of dementia for people under 60. You know, Alzheimer's is the most common form of dementia. But she was just. She understood, she got it, and I was able to connect with her to understand, you know, really sort of build out this sort of the resources that I might need moving forward. And she was really extremely helpful and continues to be a big help.
[25:59]
Hoda Kotb
What was a day in the life like for you then?
[26:03]
Emma Heming Willis
Oh, it was a lot. We hadn't come out with our family statement about Bruce, and there was still a lot of, you know, trying to. A lot of smoke and mirrors, a lot of isolation, you know, managing two young girls that were in elementary school. And just like you said, managing that alone was a lot. Running a business. I'm trying to be a daughter to an aging mother, a friend to others, and it was just a lot. I just felt like I could never get ahead. I was burning the candle at both ends.
[26:44]
T-Mobile Representative
Mm.
[26:45]
Hoda Kotb
Wow. You talk about, you know, your day to day and your children, and I was caught by something in your book that I loved, and it was about a trip to Mexico. And this hit me in a way that just hit me deeply. You were planning a trip where you wanted to take your whole family to Mexico. Will you tell that story for me?
[27:08]
Emma Heming Willis
You know, this was a trip that I'd been planning and had worked on with the neurologist, and, you know, just making sure that it would be the right. The right move. She gave us a cautious green light and said, you know, go and good luck, basically, is what she said. But I felt like, you know, this might be one of the last family trips that we would be able to take. So I dotted the I's, crossed the T's, and, you know, we're about a week out, and I speak to a friend of mine, someone who is another caregiver. Her name's Franny, and her husband had young onset Alzheimer's. And, you know, she had been my sort of lifeline, the first person that I connected to who had a similar story to us. And, you know, I told her about this trip and she said, what are you doing? Why are you going to do that? And I told her my why. And she said, emma, you know, this disease will follow you there. You can't take someone who has a cognitive disease out of their routine, out of a place that they know. If you put someone with, you know, who is in cognitive decline elsewhere, this is not going to be the trip that you are envisioning. You are going to be maybe even more stressed.
[28:36]
Pantene Advertiser
And.
[28:36]
Emma Heming Willis
And I, you know, I heard all of that and I thought, you know what? You're right. I'm going to cancel this trip. And she says, no, you and your kids are going to go. You guys are going to go, and you're going to enjoy this trip. I get emotional thinking about it because I really wanted this trip for us and realized that it just wasn't going to be possible. So I rallied sort of help that we needed at home for those five days that we were going to be gone. And the girls and I went and, you know, I had so much guilt and shame around that decision, but this was the first sort of respite that we had had. And when we went, it was just really beautiful for the kids, just to. For Us to be so spontaneous, right? To go to the down to the beach, to, you know, go for a walk, go for a bike ride and not have to think. I mean, of course I was thinking every second about what was happening at home. Is my husband okay? Is everything all right? But, you know, the girls just got to see me be a little bit more carefree and just get back to just being a fun mom. And that was our. That was our Mexico trip. Very different to how it started, but it was right. It was the right thing.
[29:56]
Hoda Kotb
And these bursts of joy, these bursts of. You call them cracks in the. I can't remember. Something beautiful. You have so many beautiful expressions, by the way. I've highlighted all of them. I'm like, oh, I love that. But finding these moments without feeling guilty
[30:13]
Podcast Host/Interviewer
or what you're doing won't be affecting how he's feeling. How did you wrestle with that?
[30:18]
Hoda Kotb
I'm imagining someone listening to this saying, I want to do something, too, but I just can't get myself to pull the trigger.
[30:26]
Emma Heming Willis
Yeah, I think it's been a lot of hearing from others, right? Hearing from others that have been caregivers who have given me the permission to be able to find the joy, that I must find the joy. During that time, it was so dark, and I didn't ever imagine that we would find any light along the way. But, you know, I was told to, you know, allow some of that in and how important that was. And I'm not saying that life still isn't dark, because it can be. It's very hard. It's very heavy. But I have learned to also allow those cracks of light to come in, to experience joy, experience laughter, without being guilty about it. You know, our people want us to experience our lives to the fullest. And I always go back to my husband and that that's what he would want. So I've learned to balance sort of the guilt, the grief that I'm carrying with me all the time with a life that I want to lead that is full and fun, spontaneous, you know, and that my kids can see these two sides. They see both sides of it. And that is what being human in navigating this disease is for us and for me.
[31:55]
Hoda Kotb
I bet your kids notice the difference in you over the days. Do not make a parallel at all. But I have a little girl who has type 1 diabetes who I'm worried about constantly. When she sleeps, an alarm goes off. When she's up, I'm constantly on edge. And the feeling of that, your heart's pounding, run in her room. Happens all the time. And I started to manage it better and understand it better and know when something's critical and when something is just a quick fix. Not everything is a five alarm fire. But as I've learned to manage it better, both my daughters have noticed in me a difference. Like they started calling me calm mom. I'm like, oh, okay, I like that. I know doesn't happen often, but it does.
[32:45]
Cricket Wireless Advertiser
So.
[32:45]
Hoda Kotb
But when we start to understand what we're dealing with, it's interesting because I feel like I'm regulating and they're regulating. Like I can feel it. Do you have anything similar with your as they're watching, you know how different you are today than you were at the beginning of the diagnosis?
[33:04]
Emma Heming Willis
Yeah. I mean, one of the experts in my book says, you know, our children are connected to our wi fi and you know, when our WI fi is buffering and slow and just not connecting, your kids are on that too. And they were definitely feeling that just how all over the place I was. But what I had learned is that the best anxiety reliever is education and knowledge. And I think I went really deep into understanding ftd, understanding different forms of dementia, trying to understand how to be a caregiver, what to do, hacks, some tricks. You know, all these things sort of came together and that helped settle me a little bit. You know, you start feeling like you're just more knowledgeable, you become more seasoned and you're able to show up in a different way. You know, I think that what's so important for caregivers to know in the beginning, it's so hard and you are trying to do so much and over time you will find your footing and you will look back and be so proud of how much you've learned, what you have done, how you are caring for your person, as well as most importantly, learning how to care for yourself. To continue to sustain this journey.
[34:36]
Podcast Host/Interviewer
More with Emma Heming Willis when we come back.
[34:47]
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Hoda Kotb
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Emma Heming Willis
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Emma Heming Willis
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[36:20]
Hoda Kotb
Your book, the Unexpected Journey, which is beautiful in so many ways, I love it because I feel like all of us want practical information. We want to know what you went through so we understand you're like us. But we really want to know the ABCs. Tell me about I'm curious about the feedback that you got from other caregivers who are looking for a life raft. Wanting something to hang onto, something tangible.
[36:47]
Emma Heming Willis
Yeah, I mean, I think it's been such a beautiful experience one to be able to write the book. You know, I would say maybe 30% is about sort of my story as a caregiver, but what I think is really important and impactful about this book are the, you know, 25 experts and specialists that I've been able, fortunate enough to be able to work with and to be able to put their insight and wisdom into this book, to be able to share it with the next caregiver who might not have the time, access, resources to be able to figure this out. You know, this again is the book that I wish someone would have handed me so that I could learn how to care for myself and sustain this in a pragmatic way. You know, I think that book is very pragmatic. It's how my brain works. You know, they're all very obtainable things that we can do on this journey and I am so grateful for their time to be able to have it in the book. I keep that book next to my bedside because it's one of those things you can open up anywhere and get some kind of information, something that you need as a reminder about caring for ourselves.
[38:04]
Hoda Kotb
That's critical. What are a couple things if I'm listening and driving now and would like to know, like what could I do that would help me as a caregiver? Or what are some.
[38:14]
Emma Heming Willis
I think what is really important that I didn't know early on is how important it is to ask for help early on. Like right when you get that diagnosis. What a lot of these experts have said, every one of them actually, is that caregivers wait too long to ask for help. And by the time they've asked for help, this sort of ecosystem of care that they have put into place has bottomed out. And, you know, we need to learn that caregiving isn't a solo mission. I think we've been, especially as women in this world, you know, you show up, you do the thing, you get in there, you don't ask for help. When you do, you're a failure. That is an old narrative that we really. It is dangerous. It is a really dangerous narrative. So, you know, asking for help early on, I think is one of the most important things a caregiver can do, because this isn't a solo mission, and caregiving is really bad for your health. You know, it took a neurologist to tell me to see that I was burning the candle at both ends, just not really caring for myself, missing my doctor's appointments. And he's like, you need to bring in help. You have resources that others don't. It's time for you to really think about that. And I did. And I was so grateful to hear about the scary statistics of caregivers dying before the person that they're caring for.
[39:43]
Hoda Kotb
Wow.
[39:44]
Emma Heming Willis
I didn't know that 64% of caregivers are at risk versus people their own age who aren't caregivers. So, you know, and the reason for that is, is because you're putting everything into your person. You know, you are missing your doctor's appointments, you're not caring for yourself. You're not able to exercise. And why is that? Because we are doing this ourselves. And some do not have the family and friends to be able to step in. But again, it's really about how do we bring our community in earlier. How can we try? You know, I really hate the word respite, but how can we try? Because it's so important for us and for our health.
[40:27]
Hoda Kotb
So interesting when you talked about, like, not asking for help, and I was reading about your mom who. Single mom, three jobs and modeled. I mean, the reason you're so awesome is because of her abvi. And also they also teach us. And my mom's very much that way, determined. You got it. You don't need any help. You got it. I mean, I credit her for so much of who I am. And also we need the other part. It's okay to leave that on the table and say, ma, you did 90% great. Okay. But that piece, that piece, I have to check you on that.
[40:59]
Emma Heming Willis
Yeah, totally. It was really unwinding, all of that. You know, my mother very like, you know, self sufficient. You get out there and you be independent. You don't, you know, you do, do, do, do. Just you, you, you, you. And I had to really, you know, unspool that because I wouldn't be able to continue to sustain if I didn't have help.
[41:19]
Hoda Kotb
What is love like now between you and Bruce?
[41:22]
Emma Heming Willis
You know, obviously it's different, but still, you know, very grounded and rooted. You know, I get to be with my husband, be really in the moment with him. And there is something that is so beautiful about that, you know, like, I'm not thinking about the future or the past. It's just. I can really just stop everything to just be with him in these moments that are so fleeting, you know, to be really able to have this soulful connection with him that really doesn't need words, it doesn't need that. It's touch, it's hugging, it's connecting, you know, through our eyes. You know, you learn to adapt to this disease. You learn to meet your person where they're at, and our life is meaningful and beautiful.
[42:19]
Hoda Kotb
And what has your husband's illness taught your daughters?
[42:25]
Emma Heming Willis
Oh, my. You know, I think it has given them so much resilience, patience, kindness. You know, they are very. They look at life, I think, with a little bit of a different lens. They are caregiver. They have been brought up as, you know, caregivers in this world, you know, always wanting to help, help someone else. What I think is that when I look at this disease and Bruce and our family walking through this, it's hard, but I always know that it could be so much harder. And, you know, what our girls are seeing is how we surround their dad with so much love and support. And that is what they are seeing. That you can show up even when it's hard. Especially when it's hard. And that's how they're being raised.
[43:23]
Hoda Kotb
And by the way, beautiful job not only raising your immediate family, but your extended family, Bruce's, you know, former wife, Demi Moore, the kids. Like, if you were gonna look at what's the right way to do something like this, even though it's such difficult circumstances where, I mean, for what we get to see on social media, it's just like we're all loving up on him. Like, this is all about family.
[43:51]
Emma Heming Willis
It is. And we all show up for him in the ways that we can. You know, we all have our own special, unique relationships with Bruce. And I think it just goes to show what a great human he is. You know, he's got all these women loving on him and you know, he's such an incredible girl dad, you know, he, there's a part of him that, you know, I know is just, he eats it up. But yeah, you know, we all show up for him and it's. I think that's beautiful. And not just like our family, but also his friends, you know, that come around weekly that are there, that are there and laughing with him and bringing that sort of fun and joy into the house. And, you know, it's really heartwarming to see how many people continue to show up for him.
[44:47]
Hoda Kotb
Love my last question for you. We call this podcast Making Space. Emma and I ask everybody this at the end. So if you had a day that was completely for you, you could open your eyes when you wanted, close them at the end of the day when you wanted, and fill the day with whatever it was that filled your cup. How would you spend that day, that singular day? Ooh.
[45:12]
Emma Heming Willis
Well, I'm an early riser and I love mornings. My eyes open up around 4:30, 5:00'.
[45:21]
Hoda Kotb
Clock.
[45:21]
Emma Heming Willis
Trust me. I try to sleep a little longer, but I just can't. I would wake up, I love going downstairs, having a cup of coffee, sort of figuring out like, what is my day going to look like. But on this special Making Space day, I would probably go into the gym, do a workout because I know I always feel really good or actually even better. I'm not gonna go work out. I'm gonna go on a hike. I'm gonna go on a hike. You know, it's like this 40 minute hike that I have close to our home and do that, probably come back home, get ready for the day, do something really fun with the girls. Like we love Disneyland. We're like at Disneyland. I'm not like a weird like Disney mom, but like, but I do, we really enjoy it. So maybe we'd go there. Like I don't know. We're gonna go there, we're gonna go have lunch, we're gonna go ride on some rides. Anytime I can spend with the kids. They just bring so much fun and light heart ness and laughter. So you know, with them, maybe I'd in the evening, you know, maybe spend some time with my husband and my mom and or go to dinner with some friends. I love a restaurant experience. I love breaking bread with, you know, friends of mine that I don't get to see and probably end the night early because I need to be in bed early so that I can wake up early the next day.
[46:45]
Hoda Kotb
Same. Yeah.
[46:46]
Emma Heming Willis
Watch some kind of show, have a snack in bed.
[46:50]
Hoda Kotb
Oh, you eat in bed?
[46:51]
Cricket Wireless Advertiser
Yes.
[46:52]
Hoda Kotb
Thank God. I love people who eat in bed. I know, I know people have phobias to that, but I totally am in it. Okay.
[46:59]
Emma Heming Willis
And the crumbs and all the things are in there.
[47:00]
Discover Card Advertiser
Yeah.
[47:01]
T-Mobile Representative
There you go.
[47:01]
Emma Heming Willis
Oh, that would be my day.
[47:03]
Hoda Kotb
You're an extraordinary human being. I loved talking to you. I hope people pick up your book and for all the good work you're doing. You know, they always say, like, we're only here for a short time. You might as well put goodness into the world. You're doing it. Thank you, Emma. Thank you so much. This episode of Making Space is produced by Alyssa Aquino and and Brianna Steinhilber,
[47:29]
Podcast Host/Interviewer
along with Kate Saunders. Sound design and mix is Joe Plord.
[47:33]
Hoda Kotb
Ashley Domagola is our production manager.
[47:35]
Podcast Host/Interviewer
Sadie Bass is our supervising producer. Our head of audio production is Jessica Fenton. Ariana Davis Santana is our executive editor. I'm Hoda Kotb, and this has been Making Space, a production of the Today Show.
[47:46]
Hoda Kotb
We'll see you next week.
[47:55]
Nurtech Advertiser
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Summary7 min read

Podcast Summary: Making Space with Hoda Kotb

Episode: Emma Heming Willis on Caring for Bruce Willis Through Dementia and Finding Joy Again
Date: August 5, 2026
Duration: ~47 minutes (core content)

Overview

In this heartfelt episode, Hoda Kotb sits down with Emma Heming Willis, wife of actor Bruce Willis, to discuss Emma's deeply personal journey as a caregiver after Bruce was diagnosed with frontotemporal dementia (FTD). The conversation delves into the emotional, practical, and existential realities of caregiving, the transformation of family dynamics, and Emma's mission to support others through her experiences and resources—including her new book, The Unexpected Journey. Emma candidly explores guilt, joy, the necessity of community, and lessons in resilience for herself and her children.

Key Discussion Points & Insights

Embracing Milestones in the Midst of Hardship

The Importance of Celebration:
- Emma reflects on turning 50, sharing her initial reluctance due to family challenges but ultimately deciding, “I don’t want to look back and think why didn’t I celebrate 50? It is something to celebrate.” (03:20)
- She describes an intimate party: “My mom and some friends put together this really lovely party...I want to eat tacos, have a margarita, and be with my friends.” (02:46)
Guilt of Enjoyment Amid Caregiving:
- Hoda observes how difficult it is to feel permitted to celebrate during trauma, referencing her friend’s loss. Emma responds, “I always wrestle with [guilt]...What I know is I always go back to what would my husband want for me? And he would want me to celebrate.” (04:26)

Falling in Love and Noticing Changes

Meeting Bruce & Relationship Foundations:
- Emma shares: “We met at the gym...the thing I remember about him was just how warm, charismatic, how funny he was, but always really took the time to want to learn more about me.” (05:46)
- On personalities: “If opposites attract, that couldn’t be more true...He is very spontaneous, I really like a plan...His saying is, ‘live it up.’” (07:42)
Early Signs of Dementia:
- Emma identifies Bruce’s changes: “I started noticing a stutter...It was language, conversations...we weren’t aligned anymore...it was very odd for someone who was such an incredible communicator to not be one.” (09:13)
- On managing it with the kids: “There was a lot of masking...Bruce was still very engaged with them...I was able to bring them in a little bit more over time.” (10:38)

Diagnosis and Its Aftermath

Process and Shock:
- Initial diagnosis was aphasia, later specified as FTD with a primary progressive aphasia (PPA) variant.
  “Nothing could have prepared me for FTD...there is no treatment...we were sent on our way with no clear direction, no roadmap...I realized just how unsupported caregivers are.” (13:36, 15:36)
The Importance of Advocacy:
- Emma wishes doctors would “give just one resource; that resource would have been so helpful for me.” (19:41)

Caring for Bruce, The Family, and Herself

Immediate Action and Learning:
- “I knew quickly I wasn’t going to allow this disease to take all of us out...I started doing a lot of research online...I just got to work.” (21:27)
Talking to Their Children:
- Shared diagnosis with their daughters, aged 8 and 10:
  “They came up with an acronym, ‘Fantastic Turtles Dancing’, to remember FTD.” (22:54)
The Reality of Caregiver Burden:
- “Running a business, trying to be a daughter to an aging mother, friend to others, and it was just a lot. I just felt like I could never get ahead. I was burning the candle at both ends.” (26:03)

Allowing Joy and Finding Respite

Mexico Trip Story:
- Emma recounts canceling a planned family trip on a friend's advice but going with just her daughters:
  “This was the first sort of respite we had...the girls just got to see me be a little bit more carefree and just get back to just being a fun mom.” (28:36)
- The power of caregiver community: "Hearing from others has given me permission to find joy, that I must find joy." (30:25)
Letting Light In:
- Emma describes learning to allow herself “cracks of light”:
  “I have learned to balance the guilt, the grief...with a life that I want to lead that is full and fun, spontaneous, and that my kids can see these two sides.” (30:25)

Practical Lessons and Advice for Caregivers

Essence of Her Book:
- “Maybe 30% is my story as a caregiver, but the impactful part is the 25 experts...to share with the next caregiver who might not have the time, access, resources to figure this out.” (36:46)
Key Caregiver Advice:
- “Ask for help early on. Every expert said caregivers wait too long to ask for help...Caregiving isn’t a solo mission...When you do [ask], you’re not a failure. That’s an old, dangerous narrative." (38:14)
- Caregiver health risk statistic:
  “I didn’t know that 64% of caregivers are at risk [of dying prematurely] versus people their own age who aren’t caregivers.” (39:44)
Unlearning Old Models:
- “Unwinding all of that...You get out there, you be independent...I had to really unspool that because I wouldn’t be able to continue to sustain if I didn’t have help.” (40:59)

Love, Family, and Lasting Lessons

Adapting Relationships:
- “It’s different but still grounded and rooted...I get to be with my husband in the moment...it doesn’t need words...it’s touch, it’s hugging, it’s connecting through our eyes.” (41:22)
What Her Daughters Have Learned:
- “It has given them so much resilience, patience, kindness...they look at life with a different lens. They see how we surround their dad with love and support...that you can show up even when it’s hard, especially when it’s hard.” (42:25)
Blended Family Showing Up:
- “We all show up for him in the ways we can...he’s got all these women loving on him...and it’s heartwarming how many people still show up for him.” (43:51)

Notable Quotes & Memorable Moments

“What I know is I always go back to what would my husband want for me? And he would want me to have a big, fun bash.” – Emma Heming Willis (04:26)
“His saying is, ‘Live it up.’ And that’s what I just try and remember all the time.” – Emma Heming Willis (08:44)
“Nothing could have prepared me for FTD...and we were sent on our way with no clear direction, no roadmap, no what to do next.” – Emma Heming Willis (15:36)
“This isn't a solo mission, and caregiving is really bad for your health.” – Emma Heming Willis (38:14)
“What I had learned is just to wait to hear what the questions that they might have. And they didn’t really have too many…just enough information for them.” – Emma Heming Willis, on talking to her young daughters (22:54)
“Our children are connected to our Wi-Fi, and when it’s buffering and slow…your kids are on that, too.” – Emma Heming Willis (33:04)
“You learn to adapt to this disease. You learn to meet your person where they’re at, and our life is meaningful and beautiful.” – Emma Heming Willis (41:22)
“You can show up even when it’s hard—especially when it’s hard.” – Emma Heming Willis (42:25)

Timestamps for Key Segments

01:10–03:47: Emma's 50th birthday, celebration amid hardship
04:26–05:30: Wrestling with guilt vs. honoring what Bruce would want
05:46–08:44: Their love story, personality differences, mutual influence
09:13–11:44: Recognizing initial symptoms, informing the children
13:36–17:17: Diagnosis process, feeling unsupported, need for resources
19:25–22:43: What should be done differently after diagnosis, asking for help
22:54–23:51: Talking to children about dementia, "Fantastic Turtles Dancing"
26:03–27:08: The overwhelming day-to-day reality before going public
28:36–29:56: The story and lessons from the canceled Mexico trip
30:25–31:55: Allowing joy in, advice from other caregivers
33:04–34:35: The impact of "Wi-Fi" anxiety, importance of knowledge
36:46–39:44: Key lessons from Emma’s book, expert advice on asking for help
41:22–44:47: The meaning of love now, what resilience looks like for their daughters, family unity
45:11–47:03: Emma’s “Making Space” dream day—self-care, nature, Disneyland, friends, and family

Tone & Language

Candid, grounded, caring, and practical
Emma speaks with vulnerability, humility, and a mission-driven pragmatism
Hoda offers empathy and personal resonance, keeping the discussion intimate, hopeful, and relatable

Final Reflections

Emma’s journey is one of transformation—her resilience, resourcefulness, and embrace of both sorrow and joy offer a roadmap for anyone facing caregiving or unexpected life changes. Her advice is practical and deeply personal, and her insistence on asking for help and allowing for happiness within grief provides hope for others in the caregiver community.

Highly recommended for anyone seeking insight on love, loss, caregiving, resilience, and finding light within darkness.

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Transcript152 lines

[00:02]
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[01:03]
Hoda Kotb
Sometimes life asks us to become someone we never imagined we'd have to be. We make plans, we build careers, we
[01:11]
Podcast Host/Interviewer
raise families, believing we know what the next chapter will hold.
[01:15]
Hoda Kotb
And then, in an instant, everything changes. Well, my guest, Emma Willis, knows that feeling all too well.
[01:22]
Podcast Host/Interviewer
After her husband, Bruce Willis, was diagnosed with frontal tempora dementia, Emma found herself navigating a role she never expected.
[01:30]
T-Mobile Disclaimer Voice
Caregiver.
[01:31]
Podcast Host/Interviewer
So what began as a deeply personal experience has since become a mission to support millions of families who often feel unseen and alone. Through one of the hardest seasons of her life, Emma Heming Willis discovered a purpose she never would have chosen, but one that has changed not only her own life, but the lives of so many others.
[01:53]
Hoda Kotb
I'm Hoda Kotb, and this is my podcast, Making space. First of all, happy birthday.
[02:11]
Emma Heming Willis
Oh, thank you.
[02:12]
Podcast Host/Interviewer
You know what, thank you.
[02:13]
Emma Heming Willis
I'm happy that, you know, I'm happy we're still celebrating. I was thinking about this yesterday. Like, when you celebrate a milestone, like 50, shouldn't it go on for like a really long time?
[02:22]
T-Mobile Representative
Yes.
[02:23]
SoFi Advertiser
Yes.
[02:23]
Wayfair Advertiser
Okay.
[02:24]
T-Mobile Representative
Well, you're ready.
[02:24]
Podcast Host/Interviewer
You should be having a months long celebration. Tell me what it felt like to turn 50 and what was that celebration like for you?
[02:34]
Emma Heming Willis
You know, I really was looking forward to 50 because I have to say, my 40s felt like a little bit of a doozy.
[02:41]
Discover Card Advertiser
Yeah.
[02:42]
Emma Heming Willis
And I was just ready to embrace my 50s. I've heard so many wonderful things about, you know, going into your 50s. With much more confidence, kind of like a I don't give a attitude. And I really was excited about it, and the celebration was lovely. I, you know, have not really been in the celebratory feelings of late, and I was unsure if I really wanted to do anything. But I had a friend of mine who kept sort of pushing and saying, you know what? You don't want to miss out on your 50. You have to celebrate in some form or fashion. And I really sat with that, and I thought about it, and I thought, you know what? I don't want to look back and. And think, why didn't I celebrate 50? It is something to celebrate. And my mom and some friends put together this really lovely party at the house. They said, what are a couple things that you want? I said, I want to eat tacos, and I want to have a margarita, and I want to be with my friends.
[03:47]
Podcast Host/Interviewer
By the way, I think what you
[03:49]
Hoda Kotb
did underscores something that so many people who are going. Who are in the middle of a difficult time struggle with. And it's like, how can I have this celebration while this is going on? And I know one of my dear, dear friends, my best friend actually lost her husband, and I remember her navigating this time, and I was watching her, like, get chipped away. And those moments that you would have celebrated, there's guilt that comes with. There's moments you want to do something, you say, oh, but I can't.
[04:20]
Podcast Host/Interviewer
I can't.
[04:20]
Hoda Kotb
There's a million other things that I need to be doing for him. Do you or did you wrestle with that?
[04:27]
Emma Heming Willis
I always wrestle with it. You know, I think guilt is something that I am always carrying, but I've learned that it is really not helpful. What I know is I always go back to what would my husband want for me? And he would want me to have a big, fun bash. He would want me to celebrate, you know, my life with my friends and family. And that is sort of what I always think about when guilt of any sort, sort of, you know, comes in front of me. And I'm really happy that I did. And, you know, we brought together my friends, some family, and it was just a really lovely, intimate night. And on top of it, it was the Knicks final. Oh, my gosh. And they won. And, you know, I would say about 98% of the people there were Knicks fans. So that was fantastic. And it just was. It was a. It was a great celebration.
[05:30]
Hoda Kotb
I love it. I love it so much. So 50 for me was also a time just to reflect to look back and when reflecting, and I'm sure in your life, you look back at the beginning of where life started with Bruce.
[05:43]
Podcast Host/Interviewer
What was the thing you fell in
[05:44]
Hoda Kotb
love with back then?
[05:46]
Emma Heming Willis
Oh, my goodness. You know, I met him in, like, 2005. I want to say 2004. And we met at the gym, like most people in Hollywood do. I guess his time was before mine, and we would, you know, sort of overlap. And, you know, the things that I remember about him was just how warm and charismatic, how funny he was, but always really took the time to want to learn more about me, you know, just more about who I was, about my life. And prior to that, I had never really thought about Bruce Willis. I grew up watching Moonlighting, but I was never, like, an action sort of movie fan. So when I had noticed him, I had said to my mother, you know, I met Bruce Willis, and he's really a lovely man. And my mom was like, what are you doing?
[06:48]
T-Mobile Customer
Doing?
[06:49]
Emma Heming Willis
You're engaged to be married? I said, no, no, no. You know, I am. Yes, at the time, I was engaged to be married. But, you know, I had met him, and I just noticed that. And it wasn't until years later, after my, you know, engagement fizzled thankfully, that we went on our first date. And, you know, I just really loved being around him. You know, it was just something very warm, safe, and fun. You know, my husband is just so full of life, and it was a really beautiful time. It was a really great time in our lives.
[07:31]
Hoda Kotb
They say that we often, like, seek out the traits we don't have in our partner. I think that's true of me as I look down. How did he help you become you?
[07:42]
Emma Heming Willis
Yeah, I mean, if opposites attract, that couldn't be more true than for my husband and I. You know, he is very spontaneous. I really like a plan. I am very sort of type A. You know, I think that he just really enjoyed life. And it's not that I didn't, but I needed structure. So I felt like we, in a way, helped each other. You know, I think that what he has instilled in me today is to be a little bit more spontaneous, have a little more fun, you know, where I can tend to sort of want to put things in a box. But as I'm raising our two young daughters, I really need to bring more of that into our lives. You know, fun off the cuff, you know, a little wild is okay. And I really appreciate that, that he has given me that. And I try, you know, his saying is, live it up. And that's what I just try and remember all the time, is to live it up.
[08:44]
Hoda Kotb
Oh, I love that saying. Oh, I love that a lot.
[08:48]
Podcast Host/Interviewer
So as you guys were building a
[08:49]
Hoda Kotb
life and a family and kids and your, you know, everything, of course, looks, you know, just perfect.
[08:56]
Podcast Host/Interviewer
But when you were on the inside
[08:58]
Hoda Kotb
and you noticed, like, different parts of what appeared to be his personality coming out in weird ways.
[09:05]
Podcast Host/Interviewer
Tell me about what that was like,
[09:07]
Hoda Kotb
watching what was a sort of strange change in him that you couldn't identify or put your finger on or figure out.
[09:14]
Emma Heming Willis
Yeah, I mean, you know, really, for my husband, it was more so his language. I started noticing a stutter that he had had a severe stutter that he has, you know, talked about openly. That was quite debilitating for him as a young child. It started to come back. It's not that his stutter wasn't there throughout his life. He's just sort of learned to sort of manage it. But then I started noticing that he was not managing it anymore. So I think it was language conversations that we were having that we'd had in the past. Things that we were very aligned on. We weren't anymore. You know, there was a lot of miscommunication sometimes no communication. It was very odd for someone who is such an incredible communicator to all of a sudden not be one. And never in my wildest dreams did I think that was an early symptom of the diagnosis that he received years later.
[10:21]
Hoda Kotb
Must have been Emma. I was thinking about, you know, your kids watching this sort of lack of communication, or mom and dad aren't on the same page. They sort of sense. Kids sense when something is funky. Did your children notice that something was off, or did you guys kind of mask it?
[10:38]
Emma Heming Willis
I think there was a lot of masking going on. I think there was a lot of smoke and mirrors. You know, you'd have to think that when our two daughters were. When Bruce was diagnosed, they were just 8 and 10. So you'd have to think that those symptoms were happening prior. They were very young. You know, they were still very young, but Bruce was still very engaged with them. It's not that he had to be having these very deep conversations with them, but, you know, just to be able to be the fun dad that he has always been. I think that is what they could feel and sense, that there was so much love surrounding them. And I think, you know, as time went on, I was able to sort of bring them in a little bit more to kind of, you know, just give them A little bit of information about what I was noticing and that we were going to be, at some point, you know, going to the doctor and hopefully getting a diagnosis. So I gave them these little tidbits along the way because I didn't want to all of a sudden land on a diagnosis and then just drop a bomb on them.
[11:44]
Hoda Kotb
How does it go from like, having communications issues and wondering, like, what's up with him? Why is he acting like that way, to this might actually be a medical issue that we're dealing with?
[12:00]
Emma Heming Willis
I think, you know, I get that question a lot. And, you know, no one knows our people better than us. You know, if it's a parent, a spouse, a sibling, you know, we know who our people are at their core. And I know I knew who Bruce was. And there just came a point where I was like, this is not my husband. Something is going on. And that was my cue to just kind of step it up and figure it out and how to, you know, get him to an appointment.
[12:34]
Hoda Kotb
Was he willing or did he say to you, come on, this is. I'm fine. There's nothing wrong here.
[12:41]
Emma Heming Willis
You know, I have to say, my husband has always really followed my lead on so many things, for better or for worse, and he listened to me, and, you know, I was able to speak with his Dr. Prior and, you know, just to be able to go in there in the most loving, kind way that would be supportive to him. So, you know, thankfully, he's gone along with so many things. Thankfully.
[13:12]
Hoda Kotb
So you go in, Emma, to this doctor's appointment. We all go in whenever everyone who's listening has some sort of cross to bear, whether they've had a cancer diagnosis or they've gone through something. When you walk into a room, you kind of play out what the worst case scenario might be. What am I walking into? Did you have any preconceived ideas about what. What you might be learning when you walked in there?
[13:37]
Emma Heming Willis
Yeah, I mean, this took a while, right? Like, our first diagnosis that they had landed on was just aphasia. And aphasia was a symptom to a disease, but at the time, it was aphasia. A year later, they landed on frontotemporal dementia, and the variant of that was primary progressive aphasia, or ppa. Going into that appointment, I knew it was going to be the day that we finally received an actual diagnosis. But nothing could have prepared me for ftd. You know, I had heard of FTD many years before, decades before, and I remember it was a family friend that was going through it, and I just remember thinking how God awful this disease was. And through the years, you know, I had heard people talk about different forms of dementia, and whenever FTD would come up, they would say, oh, boy, that, you know, that's the one that you don't want.
[14:34]
Hoda Kotb
Why is that? What was it about that disease?
[14:37]
Emma Heming Willis
You know, listen, I think all types of dementia are hard. I think there is something about FTD where, you know, it is the most common form of dementia for people under the age of 60. It can affect people through their behavior, language, or movement. You know, if you are under the age of 60, you are in the prime of your life. You know, you are raising young children, you are holding down your job. There are so many things that are going to be taken away from you. And, you know, I. The variant of what Bruce has is communication. So, you know, imagine what that's like to lose your words and your ability to communicate.
[15:25]
Hoda Kotb
So you're in the doctor's office and the words that you had already learned about FTD come out of the doctor's mouth. So then what?
[15:37]
Emma Heming Willis
I just remember my whole body tingling. I felt like I was free falling. I had this, like, wafting in my ears and I couldn't believe what I was hearing. What I learned in that appointment is that there is no treatment. There is medications that you could probably do to manage symptoms over time. And if it's a genetic component, you'd have to think about what this looks like for family. There was a lot of really harsh information that was given, and we were sent on our way with no clear direction, no roadmap, no what to do next. And it was just a check back in in a couple months, and that was it. So it was a really traumatic experience. And I walked out of there with questions. Very confused at the time. I was just learning how to. I mean, I didn't even really know how to advocate in a doctor's office. You know, I really have always put doctors on such a high pedestal, which, you know, they should be on, which I was raised to believe that. And I felt like that doctor would have told us everything that we needed to know. And there was. I couldn't. I didn't feel like I could push back and say, you know, what supports are offered here? Or what can I do? Or, what should I? How do I think about our two young children? So I left. And really quickly, I realized just how unsupported caregivers are.
[17:18]
Podcast Host/Interviewer
More with Emma Heming Willis after the
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[19:25]
Hoda Kotb
So if you could have a redo of that day in the doctor's office, what would you have left with? What do you hope? People who are getting a diagnosis today would leave the doctor's office with a
[19:41]
Emma Heming Willis
simple piece of paper that has a couple of resources on it. You know, like for us, because Bruce was diagnosed with ftd, there is an association of frontotemporal degeneration. And even just one resource, that resource would have been so helpful for me because I could go onto that website and get proper information about the disease, what resources are out there, what it is that I need. Connect to a support group, a community. I mean just one resource would have been great. But a check back in in a couple of months, that is nothing. You know, that's absolutely nothing. So the book, the book that I ended up writing. It's the book that I wish someone would have handed me the day we left the diagnosis.
[20:26]
Hoda Kotb
Who was your first phone call after you got the diagnosis?
[20:31]
Emma Heming Willis
Who was my first phone call? You know, I. I think it was our family. You know, I think it was our intimate group to just inform that. Honestly, it is such a blur. It is really such a blur.
[20:48]
Hoda Kotb
Sure.
[20:49]
Emma Heming Willis
But I think those were sort of the first calls. I mean, you know, our family knew that was gonna be the day. So I think, you know, everyone was ready to hear and learn what was
[21:01]
Hoda Kotb
your call to action. So you get home, you walked into the doctor's office one way, you're leaving another way. And I keep thinking, like, in life, there are probably a handful of times where we're literally on our knees. In your lifetime, whether you lose a parent, a loved one, there's a horrible diagnosis, something happens. So what did you do when you knew now it was time to do something?
[21:27]
Emma Heming Willis
I knew very quickly that I wasn't going to allow this disease to take all of us out. You know, I had two young children that I needed to continue to care for and raise. And I just kind of put my big girl pants on and, you know, went to work. I started, you know, doing a lot of research online to learn more about the disease, to learn more about services that we might need. I was lucky enough to be able to have sort of a medical company that was helping me also, you know, put some really, you know, important things together for us. But, you know, I just got to work. I think what's dangerous is that when you leave a doctor's office and then, you know, your only choice is to go onto the world wide web to search up, you know, any kind of disease. I mean, any kind of headache. You know, you're like, why do I have this headache on the left side? Oh, it's a brain tumor. You know, it's just. It's not the appropriate information. It's not the right information. And, you know, I just think that we need. We need more support. We need something more when we are leaving these appointments that are life changing.
[22:43]
Hoda Kotb
So you said your girls were 8 and 10 at that time?
[22:47]
Emma Heming Willis
8 and 10.
[22:48]
Hoda Kotb
So what was the conversation there? How did you navigate that?
[22:54]
Emma Heming Willis
They knew that was going to be the day. And when I came home, I told them that, you know, dad has a disease called frontotemporal dementia. We can use, you know, ftd. And they were like, you know, fdt, you know, they couldn't get the letters right. And we they came up with an acronym, Fantastic Turtles Dancing to be able to remember, you know, just the letters of this diagnosis. And, you know, I. What I had learned is just to wait to hear what the questions that they might have. And they didn't really have too many questions. You know, they were 8 and 10. And I just gave them just enough. Enough in an age appropriate way. And, you know, that was it for that time being just enough information for them.
[23:51]
Hoda Kotb
I mean, I'm raising two girls who are of the age, they're seven and nine now. It's a lot just raising them. The idea of having another huge responsibility, something that occupies all of your time and attention and concern.
[24:13]
Podcast Host/Interviewer
How did you do that?
[24:15]
Hoda Kotb
Like, I'm trying to imagine as I'm sitting here doing that. How did you.
[24:19]
Emma Heming Willis
I mean, Hoda, you just do, right? You just do. You just show up, you know, again, like, I. I knew that I needed to rise to the occasion. I knew what was important to me, what was important to my husband, and you just go, you know, there was no other option. There was no other option. So.
[24:41]
Podcast Host/Interviewer
So what did you physically have to do?
[24:43]
Hoda Kotb
What were the tools? How did you care for him?
[24:47]
Emma Heming Willis
You know, one of the first things that I looked up was dementia care specialist. You know, I needed to understand more about me becoming a caregiver, what that looks like for someone with dementia. You know, how do I learn something that I have never, you know, had to do? And Teepa Snow was someone that was the first person that sort of came up on, you know, this website. And she was an occupational therapist, someone who is very knowledgeable about dementia. And she was really one of my first calls. And what I loved about TEPA is that she was so knowledgeable about ftd. You know, FTD is a rare disease, but again, it's the most common form of dementia for people under 60. You know, Alzheimer's is the most common form of dementia. But she was just. She understood, she got it, and I was able to connect with her to understand, you know, really sort of build out this sort of the resources that I might need moving forward. And she was really extremely helpful and continues to be a big help.
[25:59]
Hoda Kotb
What was a day in the life like for you then?
[26:03]
Emma Heming Willis
Oh, it was a lot. We hadn't come out with our family statement about Bruce, and there was still a lot of, you know, trying to. A lot of smoke and mirrors, a lot of isolation, you know, managing two young girls that were in elementary school. And just like you said, managing that alone was a lot. Running a business. I'm trying to be a daughter to an aging mother, a friend to others, and it was just a lot. I just felt like I could never get ahead. I was burning the candle at both ends.
[26:44]
T-Mobile Representative
Mm.
[26:45]
Hoda Kotb
Wow. You talk about, you know, your day to day and your children, and I was caught by something in your book that I loved, and it was about a trip to Mexico. And this hit me in a way that just hit me deeply. You were planning a trip where you wanted to take your whole family to Mexico. Will you tell that story for me?
[27:08]
Emma Heming Willis
You know, this was a trip that I'd been planning and had worked on with the neurologist, and, you know, just making sure that it would be the right. The right move. She gave us a cautious green light and said, you know, go and good luck, basically, is what she said. But I felt like, you know, this might be one of the last family trips that we would be able to take. So I dotted the I's, crossed the T's, and, you know, we're about a week out, and I speak to a friend of mine, someone who is another caregiver. Her name's Franny, and her husband had young onset Alzheimer's. And, you know, she had been my sort of lifeline, the first person that I connected to who had a similar story to us. And, you know, I told her about this trip and she said, what are you doing? Why are you going to do that? And I told her my why. And she said, emma, you know, this disease will follow you there. You can't take someone who has a cognitive disease out of their routine, out of a place that they know. If you put someone with, you know, who is in cognitive decline elsewhere, this is not going to be the trip that you are envisioning. You are going to be maybe even more stressed.
[28:36]
Pantene Advertiser
And.
[28:36]
Emma Heming Willis
And I, you know, I heard all of that and I thought, you know what? You're right. I'm going to cancel this trip. And she says, no, you and your kids are going to go. You guys are going to go, and you're going to enjoy this trip. I get emotional thinking about it because I really wanted this trip for us and realized that it just wasn't going to be possible. So I rallied sort of help that we needed at home for those five days that we were going to be gone. And the girls and I went and, you know, I had so much guilt and shame around that decision, but this was the first sort of respite that we had had. And when we went, it was just really beautiful for the kids, just to. For Us to be so spontaneous, right? To go to the down to the beach, to, you know, go for a walk, go for a bike ride and not have to think. I mean, of course I was thinking every second about what was happening at home. Is my husband okay? Is everything all right? But, you know, the girls just got to see me be a little bit more carefree and just get back to just being a fun mom. And that was our. That was our Mexico trip. Very different to how it started, but it was right. It was the right thing.
[29:56]
Hoda Kotb
And these bursts of joy, these bursts of. You call them cracks in the. I can't remember. Something beautiful. You have so many beautiful expressions, by the way. I've highlighted all of them. I'm like, oh, I love that. But finding these moments without feeling guilty
[30:13]
Podcast Host/Interviewer
or what you're doing won't be affecting how he's feeling. How did you wrestle with that?
[30:18]
Hoda Kotb
I'm imagining someone listening to this saying, I want to do something, too, but I just can't get myself to pull the trigger.
[30:26]
Emma Heming Willis
Yeah, I think it's been a lot of hearing from others, right? Hearing from others that have been caregivers who have given me the permission to be able to find the joy, that I must find the joy. During that time, it was so dark, and I didn't ever imagine that we would find any light along the way. But, you know, I was told to, you know, allow some of that in and how important that was. And I'm not saying that life still isn't dark, because it can be. It's very hard. It's very heavy. But I have learned to also allow those cracks of light to come in, to experience joy, experience laughter, without being guilty about it. You know, our people want us to experience our lives to the fullest. And I always go back to my husband and that that's what he would want. So I've learned to balance sort of the guilt, the grief that I'm carrying with me all the time with a life that I want to lead that is full and fun, spontaneous, you know, and that my kids can see these two sides. They see both sides of it. And that is what being human in navigating this disease is for us and for me.
[31:55]
Hoda Kotb
I bet your kids notice the difference in you over the days. Do not make a parallel at all. But I have a little girl who has type 1 diabetes who I'm worried about constantly. When she sleeps, an alarm goes off. When she's up, I'm constantly on edge. And the feeling of that, your heart's pounding, run in her room. Happens all the time. And I started to manage it better and understand it better and know when something's critical and when something is just a quick fix. Not everything is a five alarm fire. But as I've learned to manage it better, both my daughters have noticed in me a difference. Like they started calling me calm mom. I'm like, oh, okay, I like that. I know doesn't happen often, but it does.
[32:45]
Cricket Wireless Advertiser
So.
[32:45]
Hoda Kotb
But when we start to understand what we're dealing with, it's interesting because I feel like I'm regulating and they're regulating. Like I can feel it. Do you have anything similar with your as they're watching, you know how different you are today than you were at the beginning of the diagnosis?
[33:04]
Emma Heming Willis
Yeah. I mean, one of the experts in my book says, you know, our children are connected to our wi fi and you know, when our WI fi is buffering and slow and just not connecting, your kids are on that too. And they were definitely feeling that just how all over the place I was. But what I had learned is that the best anxiety reliever is education and knowledge. And I think I went really deep into understanding ftd, understanding different forms of dementia, trying to understand how to be a caregiver, what to do, hacks, some tricks. You know, all these things sort of came together and that helped settle me a little bit. You know, you start feeling like you're just more knowledgeable, you become more seasoned and you're able to show up in a different way. You know, I think that what's so important for caregivers to know in the beginning, it's so hard and you are trying to do so much and over time you will find your footing and you will look back and be so proud of how much you've learned, what you have done, how you are caring for your person, as well as most importantly, learning how to care for yourself. To continue to sustain this journey.
[34:36]
Podcast Host/Interviewer
More with Emma Heming Willis when we come back.
[34:47]
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Hoda Kotb
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Emma Heming Willis
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[36:20]
Hoda Kotb
Your book, the Unexpected Journey, which is beautiful in so many ways, I love it because I feel like all of us want practical information. We want to know what you went through so we understand you're like us. But we really want to know the ABCs. Tell me about I'm curious about the feedback that you got from other caregivers who are looking for a life raft. Wanting something to hang onto, something tangible.
[36:47]
Emma Heming Willis
Yeah, I mean, I think it's been such a beautiful experience one to be able to write the book. You know, I would say maybe 30% is about sort of my story as a caregiver, but what I think is really important and impactful about this book are the, you know, 25 experts and specialists that I've been able, fortunate enough to be able to work with and to be able to put their insight and wisdom into this book, to be able to share it with the next caregiver who might not have the time, access, resources to be able to figure this out. You know, this again is the book that I wish someone would have handed me so that I could learn how to care for myself and sustain this in a pragmatic way. You know, I think that book is very pragmatic. It's how my brain works. You know, they're all very obtainable things that we can do on this journey and I am so grateful for their time to be able to have it in the book. I keep that book next to my bedside because it's one of those things you can open up anywhere and get some kind of information, something that you need as a reminder about caring for ourselves.
[38:04]
Hoda Kotb
That's critical. What are a couple things if I'm listening and driving now and would like to know, like what could I do that would help me as a caregiver? Or what are some.
[38:14]
Emma Heming Willis
I think what is really important that I didn't know early on is how important it is to ask for help early on. Like right when you get that diagnosis. What a lot of these experts have said, every one of them actually, is that caregivers wait too long to ask for help. And by the time they've asked for help, this sort of ecosystem of care that they have put into place has bottomed out. And, you know, we need to learn that caregiving isn't a solo mission. I think we've been, especially as women in this world, you know, you show up, you do the thing, you get in there, you don't ask for help. When you do, you're a failure. That is an old narrative that we really. It is dangerous. It is a really dangerous narrative. So, you know, asking for help early on, I think is one of the most important things a caregiver can do, because this isn't a solo mission, and caregiving is really bad for your health. You know, it took a neurologist to tell me to see that I was burning the candle at both ends, just not really caring for myself, missing my doctor's appointments. And he's like, you need to bring in help. You have resources that others don't. It's time for you to really think about that. And I did. And I was so grateful to hear about the scary statistics of caregivers dying before the person that they're caring for.
[39:43]
Hoda Kotb
Wow.
[39:44]
Emma Heming Willis
I didn't know that 64% of caregivers are at risk versus people their own age who aren't caregivers. So, you know, and the reason for that is, is because you're putting everything into your person. You know, you are missing your doctor's appointments, you're not caring for yourself. You're not able to exercise. And why is that? Because we are doing this ourselves. And some do not have the family and friends to be able to step in. But again, it's really about how do we bring our community in earlier. How can we try? You know, I really hate the word respite, but how can we try? Because it's so important for us and for our health.
[40:27]
Hoda Kotb
So interesting when you talked about, like, not asking for help, and I was reading about your mom who. Single mom, three jobs and modeled. I mean, the reason you're so awesome is because of her abvi. And also they also teach us. And my mom's very much that way, determined. You got it. You don't need any help. You got it. I mean, I credit her for so much of who I am. And also we need the other part. It's okay to leave that on the table and say, ma, you did 90% great. Okay. But that piece, that piece, I have to check you on that.
[40:59]
Emma Heming Willis
Yeah, totally. It was really unwinding, all of that. You know, my mother very like, you know, self sufficient. You get out there and you be independent. You don't, you know, you do, do, do, do. Just you, you, you, you. And I had to really, you know, unspool that because I wouldn't be able to continue to sustain if I didn't have help.
[41:19]
Hoda Kotb
What is love like now between you and Bruce?
[41:22]
Emma Heming Willis
You know, obviously it's different, but still, you know, very grounded and rooted. You know, I get to be with my husband, be really in the moment with him. And there is something that is so beautiful about that, you know, like, I'm not thinking about the future or the past. It's just. I can really just stop everything to just be with him in these moments that are so fleeting, you know, to be really able to have this soulful connection with him that really doesn't need words, it doesn't need that. It's touch, it's hugging, it's connecting, you know, through our eyes. You know, you learn to adapt to this disease. You learn to meet your person where they're at, and our life is meaningful and beautiful.
[42:19]
Hoda Kotb
And what has your husband's illness taught your daughters?
[42:25]
Emma Heming Willis
Oh, my. You know, I think it has given them so much resilience, patience, kindness. You know, they are very. They look at life, I think, with a little bit of a different lens. They are caregiver. They have been brought up as, you know, caregivers in this world, you know, always wanting to help, help someone else. What I think is that when I look at this disease and Bruce and our family walking through this, it's hard, but I always know that it could be so much harder. And, you know, what our girls are seeing is how we surround their dad with so much love and support. And that is what they are seeing. That you can show up even when it's hard. Especially when it's hard. And that's how they're being raised.
[43:23]
Hoda Kotb
And by the way, beautiful job not only raising your immediate family, but your extended family, Bruce's, you know, former wife, Demi Moore, the kids. Like, if you were gonna look at what's the right way to do something like this, even though it's such difficult circumstances where, I mean, for what we get to see on social media, it's just like we're all loving up on him. Like, this is all about family.
[43:51]
Emma Heming Willis
It is. And we all show up for him in the ways that we can. You know, we all have our own special, unique relationships with Bruce. And I think it just goes to show what a great human he is. You know, he's got all these women loving on him and you know, he's such an incredible girl dad, you know, he, there's a part of him that, you know, I know is just, he eats it up. But yeah, you know, we all show up for him and it's. I think that's beautiful. And not just like our family, but also his friends, you know, that come around weekly that are there, that are there and laughing with him and bringing that sort of fun and joy into the house. And, you know, it's really heartwarming to see how many people continue to show up for him.
[44:47]
Hoda Kotb
Love my last question for you. We call this podcast Making Space. Emma and I ask everybody this at the end. So if you had a day that was completely for you, you could open your eyes when you wanted, close them at the end of the day when you wanted, and fill the day with whatever it was that filled your cup. How would you spend that day, that singular day? Ooh.
[45:12]
Emma Heming Willis
Well, I'm an early riser and I love mornings. My eyes open up around 4:30, 5:00'.
[45:21]
Hoda Kotb
Clock.
[45:21]
Emma Heming Willis
Trust me. I try to sleep a little longer, but I just can't. I would wake up, I love going downstairs, having a cup of coffee, sort of figuring out like, what is my day going to look like. But on this special Making Space day, I would probably go into the gym, do a workout because I know I always feel really good or actually even better. I'm not gonna go work out. I'm gonna go on a hike. I'm gonna go on a hike. You know, it's like this 40 minute hike that I have close to our home and do that, probably come back home, get ready for the day, do something really fun with the girls. Like we love Disneyland. We're like at Disneyland. I'm not like a weird like Disney mom, but like, but I do, we really enjoy it. So maybe we'd go there. Like I don't know. We're gonna go there, we're gonna go have lunch, we're gonna go ride on some rides. Anytime I can spend with the kids. They just bring so much fun and light heart ness and laughter. So you know, with them, maybe I'd in the evening, you know, maybe spend some time with my husband and my mom and or go to dinner with some friends. I love a restaurant experience. I love breaking bread with, you know, friends of mine that I don't get to see and probably end the night early because I need to be in bed early so that I can wake up early the next day.
[46:45]
Hoda Kotb
Same. Yeah.
[46:46]
Emma Heming Willis
Watch some kind of show, have a snack in bed.
[46:50]
Hoda Kotb
Oh, you eat in bed?
[46:51]
Cricket Wireless Advertiser
Yes.
[46:52]
Hoda Kotb
Thank God. I love people who eat in bed. I know, I know people have phobias to that, but I totally am in it. Okay.
[46:59]
Emma Heming Willis
And the crumbs and all the things are in there.
[47:00]
Discover Card Advertiser
Yeah.
[47:01]
T-Mobile Representative
There you go.
[47:01]
Emma Heming Willis
Oh, that would be my day.
[47:03]
Hoda Kotb
You're an extraordinary human being. I loved talking to you. I hope people pick up your book and for all the good work you're doing. You know, they always say, like, we're only here for a short time. You might as well put goodness into the world. You're doing it. Thank you, Emma. Thank you so much. This episode of Making Space is produced by Alyssa Aquino and and Brianna Steinhilber,
[47:29]
Podcast Host/Interviewer
along with Kate Saunders. Sound design and mix is Joe Plord.
[47:33]
Hoda Kotb
Ashley Domagola is our production manager.
[47:35]
Podcast Host/Interviewer
Sadie Bass is our supervising producer. Our head of audio production is Jessica Fenton. Ariana Davis Santana is our executive editor. I'm Hoda Kotb, and this has been Making Space, a production of the Today Show.
[47:46]
Hoda Kotb
We'll see you next week.
[47:55]
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