465 - The ONE Thing Every Caregiver Needs to Survive | Emma Heming Willis

0:00Tell me about meeting Bruce and I understand like it wasn't love at first sight necessarily. No, it wasn't. Yeah. So, you know, Bruce and I, we met as any model and Hollywood actor would meet in a gym. So we were working out with our trainer, Gunnar Peterson in Los Angeles. And actually, Bruce was coming in to take a look at the gym. And I had already been working out with Gunnar. And as I was leaving, Gunnar was like, Oh, I want to introduce you to Bruce and his friend, Stephen. And I was like, oh man, like I'm just leaving the gym and I'm like sweaty and gross. But, you know, Gunnar was always the connector.

0:39He always introduced everyone to everyone. So this was no exception. So I met Bruce and Steven and then over the course of a couple of years, you know, Bruce and I would run into each other at the gym. Like I would work out from nine to 10. He would come in from 10 to 11. So like our times would overlap. Yeah. And at the time I was actually engaged to be married. and we didn't get together till a couple of years later. But, you know, during that time at the gym, I got to know Bruce, you know, just in a different, a different way. Like I was never a Bruce Willis fan per se. Like I had watched Moonlighting and I knew about his movies, but I wasn't such a, such a fan, but I became a fan of him.

1:22Just, just his way, so humble, always asking questions, was never pushy, just a really all around nice guy. And then my relationship with my ex sort of fizzled. And then Bruce and I ended up going on our first date. Which was pretty, that was okay. So was there a first date? But the first trip was like a big one. I remember when I read that in the book, I was like, oh, that's a big, that was a big one. What was that? So we had our first date, which was a dinner date. and I at the time was getting ready to move from LA back to New York and I was having dinner with like a bunch of different friends every night before I was leaving to travel and move back to New York and I was having dinner with my friend and Bruce was really trying to like swoop in and have a date and I was like and I wasn't really up for the first date so I called my friend I said listen would you mind if I have Bruce come and there's like it felt safe also yes just because I wasn't really up for a first date.

2:24My friend, you know, was going to be there. And she was like, absolutely. So we had this first date, which really was not mind blowing. I have to say it was awkward. He was very nervous, very, very sweet. Yeah. Um, anyway, long story short, we end up connecting more and more on the phone and talking for hours. And it really felt like high school, you know, when you're like, just meet someone and then you start talking on the phone and really getting to know them. And that was, you know, kind of how that relationship started. And then he asked me on this trip, he's like, you know, for New Year's, we'll be going out to my place in the Turks and Caicos.

3:03And I would love for you and your friend to come. You know, my ex-wife, Demi, is going to be there. She's going to be there with her husband. We have our three kids there. And I was like, that's crazy. I was like, this is insane. I was like, you know what? Thanks. And I'll, I'll see you, you know, when you get back, I'll see you in New York when you come back. Because my friend and I already had other plans. So I told my friend Ali, I was like, listen, I, you know, Bruce brought up this trip and, but you know, we're going to do our own thing. And he's like, my friend Ali was like, what are you, what are you doing?

3:41Like you play everything so safe. Like obviously his intentions are fine. His ex-wife is there. His three young daughters are there. You have your, he's setting you up in your own villa. Like let's go, let's go have fun. Let's just go like explore, see what this might be. And I'm really happy that Ali pushed me to do that because otherwise I would have stayed in my sort of safety comfort zone, not have sort of taken any kind of chance on anything. And I did. And I, and on that trip, trip I really got to see Bruce as a family man and I just that was it you know I just saw how he was not only with his young you know daughters I mean his youngest Tallulah was like 12 at the time I want to say and yeah I got to see how he was with his ex-wife and her then husband and I was like this is this is I could like subscribe to this like I could get on board with this and and that was it and after I left that trip you know Bruce and I started dating and in love and we fast-tracked to a marriage in 2009 I want to say and then you had your kids two daughters Mabel and Evelyn Mabel was born in 2012 Evelyn in 2014 they're now 13 and 11 yeah so beautiful Girl dad, five girls.

5:02I've seen, you know, just in researching and getting ready for our conversation, like so many beautiful photos, so many beautiful family photos. And you can feel the love and you can feel the fun. Yeah. And you can feel it's fantastic. So much fun. So how long were you guys married before you started seeing, noticing something was different? Yeah, it's so hard. And it's very gray. Yeah. You know, what I say about FTD is that it whispers, it doesn't scream. It's very hard to know sort of where Bruce stopped and where his disease started to come in. Yes. You know, I never in my wildest dreams would have ever thought it was a type of young onset dementia.

5:47I didn't even know that was a thing. So it was hard to flag. Yes. You know, for Bruce, he was diagnosed with FTD, frontotemporal dementia, and that can affect people in three different ways. So behavior, speech, or motor. And for him, it was speech. So what he was diagnosed with was FTD, PPA, primary progressive aphasia, which affects your language and communication. So for Bruce and how it showed up was in his communication. and you know just at times just kind of scratching my head with our like so much miscommunication and and just things weren't aligning anymore in our marriage and it was very complicated so it was it's hard to say like oh this is when it started um but when you started to notice like I know you told the story in the book which I thought was really interesting about you know Bruce uh you You so engaged and always in the conversations and all these women around your dinner tables.

6:48And that was just kind of, that was the vibe. And then, um, in your writing, just starting to notice him being a little removed during those conversations or things, right. Was that some of the first indications, things that you started to become aware of? Yeah. Like he would sort of just melt into the background and that is really not who Bruce was, you know, very lively, very engaged, especially when it came to being with his five girls. And, you know, sometimes I thought, well, maybe it has something to do with his hearing. You know, he had lost a majority of his hearing in one ear when he was filming the first Die Hard when he was like 30.

7:27He was underneath a table shooting, you know, one of these firearms without ear protection, and that blew out a majority of his hearing. So I always felt like, well, he's just not hearing us. Like, or maybe it's just too much. And he's not wanting to jump into the conversation. So these were like these moments of like, hmm. And how long, like, did you start to notice like, wow, this is going on for a while? Like I know, you know, in any of our relationships, in any human relationship, there's always going to be challenges. Josh and I, my partner and I, we've been together for, gosh, I think it's 23 years at this point.

8:02So a long time. And there's always ups and downs. And sometimes there's stretches where I know, at least I'll speak for myself, where, you know, there is more friction or you're like, God, we are on different pages right now. So I'm, I'm curious, um, just from your experience and from what you can remember, and I know it's great. Like my, we were sharing before we started rolling, you know, my dad has some form of dementia. I still don't have a diagnosis for him, but you know, I'm like, oh, dad's always been a little forgetful or sometimes he repeats, but he's done that early. And it's hard to pinpoint when, when, when.

8:37So for you, when you were in that kind of zone of going like, okay, we're misaligned, was there any part of you that's like, okay, do we need, like, you know, Josh and I have gone to therapy. You know, did you start thinking, okay, relationship counseling, was that kind of where you started feeling around or even exploring in your own mind first? Totally. Yeah. I mean, and I know, like, as you said, relationships go through bumpy patches. Yes. It's not always going to be this perfect rosy story. Yeah, no rainbows and unicorns. No, it's really not. So, you know, you sort of weather the storms and you go through.

9:07And I really thought, okay, this is, this is one of those patches. Yes. And then we'd kind of come out of it. And then you'd think, oh, okay. And, but then we'd sink back into it. So it was very rocky continually. And he wasn't raising his hand that something was wrong. No one was flagging it with me. And I was thinking like, maybe I'm going crazy. Like maybe there's something wrong with me. so there just came a point where I thought this isn't my husband there I just knew in my gut and I said I just need to take this into my own hands and reached out to his doctor and and spoke to his doctor and that was a hard thing to do you know to go over your person's head go around their back, but I just felt like there's something that, that just doesn't feel right to me.

10:03Um, and it was important and I'm really happy that I advocated for him, for me, for our family. And what did that conversation, what was that like in terms of, okay, so you, and I know it cannot be easy reaching out behind, above, around your person's, um, knowledge. What did the doctors say to you? Like, what did they come back and say? And then what did you then do with that information to kind of get to the place where you were like, OK, we need to now take this even further? Yeah, I mean, it was a conversation of these are the things that I'm seeing. I don't know what's going on. Yeah. You know, and giving examples.

10:41And, you know, we came up we came up with a plan that ultimately worked. And that is to start with getting scans. Yes. And, you know, it's a lot of smoke and mirrors and it feels terrible and it doesn't feel right. But I am so happy that I did that. Yes. You know, it needed to be done. And, you know, from those scans started to, you know, things started to surface. So let's talk about that because I feel like anyone listening right now, I think this is so important, whether it's for your life partner, your spouse, or it might be for a parent, or it might be for yourself. Because I think that there's so many different levels to this.

11:22And this is why I was so excited to have this conversation with you. Because the more I've dug into things with my own family, even for myself, again, another thing that I brought up off camera was like, you know, for so many people in my audience, I have such a huge audience of women who are probably over 40, many of them 40s, 50s, 60s, and they are in the midst for themselves of investigating like what's happening with myself? Is this menopause, perimenopause? And then we have our spouses and our parents. So just in being able to name and discuss the symptoms, something's not okay and advocating for yourself.

12:00Because I remember taking my dad, when we realized something was wrong. I booked him a doctor here in New York city in my own naivete thinking like, I'm going to bring him to the best doctors and breast neurologists in New York city. This is like not very long ago. And we're sitting there and I was expecting more. And it's just like, they gave him a series of tests on a piece of paper and they sent us out and they're like, he's fine. Like come back in six months. And I was like, my dad and not fine. Like I know this man. And there was a whole other list of things, but I just want to just share this with you.

12:31Cause you've done so much work in this realm. For anyone listening who's noticing subtle changes in their partner, themselves, their friend, their parent, what is the first practical step you think that they could take? I think what's important to know and what I've learned about, especially about FTD, is that when someone is in their 40s, 50s, 60s, when life should be pretty grounded and stable for them, you know, they're probably raising a family, holding a job, you know, being able to to show up in life. And if you start noticing that something is not right, that is a change in the brain. Yeah.

13:10And that needs to be addressed like immediately. Um, and I didn't realize that. So it's also, I think for us, for me, you don't want anything to be wrong. Absolutely. So it's, you want to maybe dismiss it, be in denial about it. Yeah. We're just having a rough patch. We're having a hard time. We're going to move through this and we're going to get through it. Everything's going to be fine. And then you see like a glimmer of light and you're like, Oh yes. It was just a blip. Yeah. Yes, yes, yes, yes. And then you go back right to where you were previously. Yes. Um, and I think when you notice the change, it's important to go to the doctor, you know, to, to be able to get it, to get it looked like, to get it looked at.

13:56Yeah. Because the sooner you do, the more support that you can put around you and your person to be able to just try and move through something like this. That is very difficult. Yes. Um, and I think at women advocating for themselves, you know, that's a hard thing too, at the doctor's office. Um, I've been dismissed plenty of times with my doctor. You know, one was for like my own brain fog. Yes. Going in and just saying, you know, like, I'm not sharp. I don't know what's going on. Yeah. Oh, Emma, you know what? You're not sleeping. You're stressed. It will pass. It'll be fine. And it wasn't.

14:33And I had to then go seek a brain health doctor to be able to really, you know, dive in to see what is going on with me. Yes. And, and, and I do hear that. It's like what you said when you, when you took your father in, they get a snapshot for five minutes, 10 minutes. And a lot of doctors will say, they look great. Yeah, they're fine. They answered all the questions fine on the sheet. And then they'll send you on your way completely, you know, and that's so hard. And also the thing about FTD, which is tricky is that FTD doesn't affect your memory. So people with FTD can pass these, these, these Alzheimer's tests.

15:08Yes. You know, your brain does so much more than just hold memory, right? So for FTD, it affects your frontal lobe, your temporal, you know, your temporal is, is language. Your frontal lobe is behavior. Um, and if you go in to take an Alzheimer's test, you're going to pass it because it's not about memory, about something else. Yeah. And we're going to dig more into that too, but I'm really appreciating that we're having this conversation because I want to emphasize for everyone, you have to continue to advocate for yourself, especially when your gut tells you, even though the doctors come back and say you're fine for so many things, whether it's in this category that we're talking about today or anything else.

15:45If you know in your gut that something is not okay, don't stop when one doctor or even two or even three tells you this is all in your head. And have a list. You know, when you go in, you need to make sure you need to go in knowing, I hate to say this, knowing that you were going to be dismissed and that your person is, they're going to say they're fine. So make sure that you have a list in your phone, you have it written down, whatever that looks like. So when they say something like that, but just be like, no, you know, it's hard to stand up to our doctors. Right. We, I mean, for me, that was really difficult to do, but it is, it is important.

16:18Have that list say, you know, I'm noticing this, this is what happened. And this happened then, you know, they're getting such a small snapshot. They don't, they're not living the life. They're not seeing, they don't know who your person was prior to, to who they are today. Yeah. So I think the list is important. So let's take us into 2022 when you began to get some answers. I love that you wrote, initially you were hoping it was like a benign brain tumor. You know what I mean? It was something that was going to be taken away. But when you went into the neurologist's office that day, when they sent you out with nothing but a pamphlet, can you walk us through that moment, what they said, and what you wish every family would do after a diagnosis?

17:01Yeah. Yeah. I mean, we went in that day for a diagnosis. I knew that day, I knew this was going to be our big day of finally finding out what, what this, this is. Yeah. And our, you know, neurologist gave us this FTD PPA diagnosis and I couldn't believe what I was hearing. You know, I didn't really understand the disease, but what I had heard was that like FTD was the worst of the worst. You know, there's like 120 different forms of dementia. All of them are terrible. But for some reason, the one that I kept hearing about, they're like, oh, that's the one that you don't want. And that's the one that Bruce was diagnosed with.

17:41So I was just, just out of my mind. You know, I heard it. And I had pins and needles all over my body. I felt Like I was free falling. Like it was just, it was, it was a, it was terrible. And because, you know, the neurologist doesn't have that much time to go through all the things and say all the stuff. And maybe he did, but at the end of it, the, the issue with, with FTD or any form of dementia is that there is no treatment. There is no cure. um so they send you on on your way with a you know check back in in a couple of months and good luck and that was it you know we walked out of there with nothing and I felt you know just heartbroken and just felt like so alone and I just thought how am I going to do this you know our two daughters were eight and ten at the time when Bruce was diagnosed and we really walked out with, with nothing.

18:43Um, and from that traumatic, you know, appointment is where this book comes from. Um, and also, you know, I've been working with, um, UCSF and talking to them about, you know, when someone is diagnosed, you need to send them away with a resource, like one resource. If that doctor would have said like, this is what you, this is what your husband's been diagnosed with, but I want you to know that there is support and you should contact the AFTD, which is the Association for Frontotemporal Degeneration. And if you go on that website, they are going to have a ton of resources. You're going to see support groups.

19:22You're going to see what this disease is. I mean, just that. I understand that that neurologist only has a finite amount of time and it is there for, they're there for the patient, but they also just need to be able to have, there needs to be some kind of support for the caregiver. So I'm working on this roadmap now and just hoping that this will, you know, get some wings and be able to sort of fly across this country that people will be able to, neurologists will be able to use this when someone is diagnosed that the caregiver walks away feeling like they are supported because there, there, there is support out there, but I didn't know that.

19:59Yes. So I walked away with nothing and I started to do my own research and, you know, digging into the scary worldwide web to look up, you know, even a headache is like the worst place to look at, right? Like you're dying, you have a brain tumor, you're, you know, so FTD is, was a terrible thing to try and, you know, understand through the internet. What was that experience like going home and was Bruce Abel at that moment was he, he got it too. Cause I can't imagine what that ride home and those initial conversations were like. Cause I remember even again, very, very different, but in the same somewhat universe of like being with my dad and me having awareness that his brain is not what it's been yet.

20:49He's still very much with me and going through my own motions of what do I say to him? What, you know, kind of going through, okay, what do I need to go deal with on my own, my mom, my brother? And, you know, it was, it's always been, and it continues to be a lot of parsing through what I can voice to whom. So, you know, with FTD, people get diagnosed very late in their disease. They, it says, they say it takes about three years to get to a diagnosis. So by the time you're at the diagnosis, your person is very advanced in their disease. There is a neurological condition that goes along with FTD, which is called anisognosia, where your brain can't identify that something is wrong, that something is happening, which is kind of like the blessing, I think.

21:41And there's a blessing and a curse for that. Bruce never tapped in to the idea that he had FTD. so for me to go and try to explain it to him would not resonate yeah um so you know we walked out of there i walked out just just so sad um but he walked out okay you know um and that that is the thing with with anisogosia it's just the person just doesn't doesn't doesn't recognize um so So I just knew that, okay, now I got to, now I got to figure this out and now I've got to go home and I have to tell our two young daughters who knew that we were getting a diagnosis that day. And, um, and yeah, you have to share, you have to start sharing, sharing the news and figuring it out.

22:32Yeah. What are the next steps? What do I need to put into place? One step at a time. You know, I loved it too. Cause you have so much, I just, I love your book because it's so practical and it's so actionable and you have just assembled the most incredible group of experts that all their voices are in here as well. And I loved one of the things I learned in your book was how vast the world of dementia is. You mentioned, you know, there's 120 different types of dementia. And when people hear it, they automatically think Alzheimer's because that's the most common. Let's talk for a little bit about how important it is for people to get that diagnosis because there are different symptoms and different treatments and different needs of your person?

23:12I think it's so important, you know, like when I hear that you're saying that your father doesn't have a diagnosis yet. Yeah. And that upsets me because I feel that it is really important to get to that diagnosis so that then you can support your person. Then you can understand maybe what medications might work to help with certain symptoms. you know if you're being if someone thinks that you might have Alzheimer's and they're giving you these medications for Alzheimer's well it could just aggravate and activate something not great in the person if let's say they have another form of dementia yes so you know that we have to be very careful with that and that's why it's very important to get to that diagnosis and I know that like, listen, like the brain is complicated and, but I think so much can be revealed on those scans.

24:08So you want to make sure that you are with a great neurologist who knows how to read those scans accurately and properly. Um, because when, you know, for us, like once we got to that diagnosis of FTD PPA and we knew that, okay, well his language is being tapped like that, that's the issue, how do we support that? So then you're able to sort of look to, you know, an occupational therapist who might be able to help us with language and whatever that might be, you know, and, and, and that's what I started to do was just to really try to cherry pick the right specialist to be able to support my husband as he walks through a progressive disease that will not get better.

24:52I think too, it was important. I love that you talk about this. It's like understanding understanding exactly what your person has, then helps you, your entire family, understand what the journey ahead might look like. You can understand as the behaviors change, as it progresses, what you might expect, even though so much of this is unexpected. You know, in our case, it's like, there's times when I've been with my dad, I'm like, wow, he's having a good day, you know? And it's like, everything's okay. And then there's other times where it was, it's been like, wow, it's very much not a good day, you know, and you can start to feel through that.

25:25But the more I've tried to educate myself, the more empowered I've felt so that I can understand and then also be that care partner, which I also like that you pointed out that wonderful little phrase, you know, there's a caregiver and a care partner. So I love that notion. But it just helps me then advocate for him with the other providers that are giving him care. And honestly, within my family, It's been contention points, especially in the early days. I love my brother. He's awesome. And we've been, both of my parents are in, you know, in a bit of a situation. So we have each other and we're trying to navigate it.

26:00But there was times when he would be like, why can't he just do X, Y, or Z? And I would have to be like, hey, bro, I need to remind you this human that we love so much. Shell of pops is there, but the brain is different right now. and to expect, you know, so it just, I feel like it is so, so, so helpful to understand the details and the progression that knowledge is power and it empowers everyone who's taking care to take care better. Yeah. Because I also, and I love that you have educated yourself and I think that's, that is so important that we land on that diagnosis so that you can really educate yourself about that diagnosis.

26:40Um, because one of the experts, Tepa Snow that I have in my book, She's an occupational therapist, a dementia care specialist. And she always says like, knowledge is the greatest stress reliever. And it's so true because once you have that, for me, it really sort of settled my nervous system a little, not a lot, but a little to sort of understand. And then you can really learn how to separate your person from their disease. And why I go back to the idea of like, diagnosis is important so that you're like, okay, this is the diagnosis and now I understand. Yes. Now it all makes sense. Yes. You know, when Bruce was diagnosed and then I really got to, you know, took a deep dive into what FTD and how it affects someone.

27:22I was like, oh my God, you know, like now, now I get it. Now it really makes sense to me. Yes. And that was really helpful to be able just to sort of bring me back to like, okay, he was here the whole time. It was just his brain that was changing. Yes. And then, you know, You learn how to support them through the disease. You be a couple steps ahead to sort of learn how they might progress so that you can support them and support yourself. Yes, which is exactly where I want to go next because this was the biggest piece for me that I did not fully expect in my own life about how difficult for me.

28:04It's been like two and a half years now with I had not one, but both parents crashed at the same time. and God willing, God bless, they are both still alive. And we're actually starting to see some hope in certain areas, just stability, I'll say from, from clarity and good support. But you mentioned a simple action step in the book that everyone listening right now can take, whether it's for their loved ones, your spouse, your child, your parent, it's create a medical folder. I remember when this all went down, I had two enormous, like I was at my parents' house, New Jersey. And it was like this big Ziploc of all my dad's stuff.