Emma Heming Willis (7:35)

Thank you so much for having me on. I'm excited to be here.

Dan Harris (7:38)

Yeah, I'm excited to talk to you. A lot to talk about, not all of it fun, obviously. And actually I'm going to start with the unfun stuff. I'd be interested in having you take us back to the day of your husband's diagnosis because I understand and you've written about this. That's how I came to understand it, that you get this devastating diagnosis and then they just give you a pamphlet.

Emma Heming Willis (7:59)

Oh, yeah, yeah. We received Bruce's diagnosis and we left without a roadmap, without any kind of support. There was no, obviously no cure, no treatment. It was just a check back in, in a couple months and it was pretty traumatic. Pretty traumatic.

Dan Harris (8:22)

Can you say a little bit more about what the diagnosis was and is?

Emma Heming Willis (8:26)

Sure. So Bruce was diagnosed with ppa, which is primary progressive aphasia, which is a subtype of ftd, which is frontotemporal dementia. FTD is the most common form of dementia for people under the age of 60. It affects your front part of your brain and also your temporal lobes. And, you know, there are different subtypes. So for ftd, it can affect behavior, it could affect language and also movement. So for Bruce it was language, which is where the primary progressive aphasia comes into play. So, you know, for us, I started noticing stuttering coming back and not really understanding why that was happening and not really able to put two and two together to ever think that. My husband was showing symptoms of a young onset dementia.

Dan Harris (9:31)

How old was he when he got the diagnosis?

Emma Heming Willis (9:33)

Well, that diagnosis came in 2022. He's 70 now. Do the math.

Dan Harris (9:41)

67.

Emma Heming Willis (9:43)

There you go. Yeah, yeah, 67.

Dan Harris (9:46)

Yeah. Pretty young to get a devastating diagnosis like that. I just have to imagine this just seems like a statement of the obvious. But not in your life plan.

Emma Heming Willis (9:55)

No, and not in his. It was very much a curveball, so to speak. Never in my wildest dreams would I imagine someone who so well read and you know, his whole life was built on speaking and just being so quick witted that would slowly be taken from him. FTD is, it's a truly unkind disease. It is an unkind disease.

Dan Harris (10:28)

You mentioned his stutter came back. Had he had a stutter as A younger person.

Emma Heming Willis (10:33)

Yeah. So until Bruce went to college, he had a severe stutter. And when he went into college, there was a theater teacher that had approached him and said, you know, I can help you with that. And what he realized is that when he started to go to theater, he would be able to memorize these scripts, monologues, and be able to recite them without stuttering. And I think that was one of the reasons why Bruce started to act. Cause he realized that he could say these words and be able to just talk fluidly. And then over the years, he was never without his stutter. He just knew how to navigate how to speak with a stutter. And then, you know, in his 60s, it started to come back.

Dan Harris (11:25)

So we've been talking a little bit about Bruce's experience. He's not here to talk about it. So I'd like to focus more on you now. I was talking to my mother last night. She is married to my dad, who has dementia, and she was talking about how sad it is for her to watch what he's become because he was this brilliant guy and Harvard Medical School professor and physician, and. And now, you know, it's very different, and you're nodding your head. So I'm just imagining that this rings true for you.

Emma Heming Willis (12:00)

Yeah. Well, I'm sorry to hear that about your father. Again, it's. It is really hard to watch someone that you love, that you have known, one way to start to lose pieces of themselves. That has been the hardest experience. I think, for me, this is a very slow, yet progressive disease. And to watch things just be taken and something else gets taken, you're like, what gives? So where. FTD is very unkind. Any form of dementia is horrific.

Dan Harris (12:40)

I guess. I've come to look at. I don't know if this will land for you, but I've come to look at it, you know, vis a vis my own father. And pretty much, I attempt to apply this to everything in my life. Like, you use the phrase taken, but, you know, it's through a Buddhist lens. None of it's ours anyway. It's all just impermanent arising. All these things that we think of as ours. Our ability to speak with a sense of humor, our ability to walk, our ability to make plans. Like, you know, I sometimes think of us as, like, spinning tops. The top is inanimate until you spin it. And then we're, you know, at our peak of our game when we're spinning it at high velocity, and then it. We're built to tumble. I just yammered a little bit there. How does all that go down with you?

Emma Heming Willis (13:27)

It doesn't. Sorry. No, I. I hear it in theory, but, you know, we are living this right now. You know, this isn't in hindsight. This is me having a front row seat to my husband and his disease. And it is painful. It has never not been painful for me to watch that. You know, for me, our family, our people. I love people. You know, Bruce is so beloved. It's painful for them too. He's no longer acting and I think this is how he's spending his retirement.

Dan Harris (14:02)

Yeah.

Emma Heming Willis (14:03)

And his disease.

Dan Harris (14:05)

Yeah. To be clear, I don't think I probably miscommunicated there. It's not that the Buddhist view is a recipe for, at least for the unenlightened, like, that's all of us. It's not necessarily a recipe for the alleviation of pain. It's still painful. But it's the truth. You know, it's the truth. This is what we're born into. These bodies that are going to decompensate.

Emma Heming Willis (14:28)

Sure. And I think for me, it has been about learning to. Or deciding to accept what has happened. So I am not constantly just living in the grief and the sadness of it, but also being able to meet Bruce where he is at, to be upset and sad about what has been taken from him, but what has also come in to our lives because of it. So much love, so much compassion, so much patience. For me, just being able to write a book for care partners, something that I never expected that I would be able or needed or wanted to do, but it's just everything that has come out of it, there has been so much beauty in it as well. So you can't have one without the other. And I have learned how to balance this. So I'm not just in the. The depths of the grief and sadness all the time, but also how to bring in the joy that is there. We have plenty of joy in our lives, even though this is incredibly hard.

Dan Harris (15:33)

For us to let me go back to the days and weeks after you're handed this diagnosis along with the pamphlet. My understanding is you kind of went into full bore to use your term care partner mode for an extended period of time and kind of ground yourself into dust a little bit. Am I describing this with some degree of accuracy?

Emma Heming Willis (15:58)

Yeah. When we went in for that diagnosis appointment, I did not think that we were walking out with an FTD diagnosis. I had heard about different forms of dementia, but I had remembered sort of along the way, doctors would tell me about ftd. And they would say, oh, boy, that's the one that you don't want. And that was the one that we received. And for a while there it was. You really had to kind of pick me up from the ground during that time. And also I wanted just to make sure that Bruce was protected during that time as well. And trying to keep it sort of just within our family. And how are we going to navigate this just with us? And what I started to realize was that the smoke and mirrors of it all was becoming impossible because I wasn't able to really fully embrace the diagnosis, which meant that I wasn't able to go out to get the right support for us because I was so nervous that his diagnosis would get out to the public when we weren't ready for that. We weren't really thinking about that at that time. Well, we were, but it wasn't fully developed in our heads about how we were going to navigate this, not just within our family, but then how to take this public and then realizing that the best thing that we could do was to talk about it and release our family statement about Bruce's FTD diagnosis. And from that, then I went full force and was able to put all the support around our family with different experts and specialists to really help me best support Bruce and our two young children and myself in the process.

Dan Harris (17:42)

In your book, you say, and I think this is pretty much verbatim, one of the most surprising truths of caregiving is that the most important thing you can do for your loved one is to take care of yourself. Just say a little bit about why that is so surprising. And apparently it was quite counterintuitive for you in those early days.

Emma Heming Willis (18:01)

Yeah, I was burning the candle at both ends when Bruce received his FTD diagnosis. Our two young girls, they were 8 and 10 at the time, so I was very much in. I still am. They're now 13 and 11, so, you know, very much in mom mode. And caring for Bruce and a business owner and a daughter and all of these things, and just really putting myself last on the list, which meant I wasn't going to see my doctor, wasn't eating properly, I wasn't exercising. I wasn't doing anything to care for myself. And my wake up call was having a conversation with Bruce's neurologist who told me about the statistics of care partners dying before the person that they're caring for.

Dan Harris (18:54)

Wow.

Emma Heming Willis (18:55)

And she had said to me, you know, the way you are going, you could become one of these statistics. And I thought, okay, no, that's not going to happen. And that was when I really realized that I needed to put myself first on that list. Because in order to care for the people around me, I had to care for myself so that I could be able to show up for them, make rational decisions on everyone's behalf. And it's hard, it's very hard for caregivers to hear that because they think, how can I do that? But it is absolutely vital. And we don't care for ourselves. We can't possibly continue to care for the person that we love.

Dan Harris (19:44)

So you were bumping up against what is, in my view, one of the most pernicious and damaging misconceptions, which is that self care, for lack of a better term, is self indulgent.

Emma Heming Willis (19:57)

Yeah. I think also this idea that when we care for ourselves as caregivers, we deal with so much guilt, you know, our person has it worse than we do. Why should we be putting ourselves first before them? But like, this whole ecosystem of care that we are trying to set up just doesn't work if the caregiver is not cared for. And it's not just me saying this. I think being able to bring in. I think the beauty of this book are the specialists and the experts that I have brought in, and that is the message that they keep saying over and over again is that you must care for the caregiver.

Dan Harris (20:37)

Yeah, there are a bunch of cliches here, but they're apt. You know, you can't pour from an empty cup, put your own oxygen mask on first, et cetera, et cetera. And it is counterintuitive, but once you state it clearly, it makes a ton of sense.

Emma Heming Willis (20:54)

And I think for me, I needed the permission from Bruce's neurologist so that I could understand that I wasn't a failure and that it was okay for me to look after myself and that I needed to. And my hope is that with this book that I have written, that the caregiver will hear that over and over again and that it gives them the permission that they need to be able to really start reframing and rethinking about this idea of care and what care looks like, and that putting yourself first, it's not selfish, it's self preserving.

Dan Harris (21:28)

We're going to dive into your practical tips quite deeply, but before we get into that, a couple sort of overarching points I want to see if we can get on the same page with. First, you wrote the book for caregivers, but not everybody listening to this show will be caregivers And I think the broader frame that I'd like to put on it, if you're cool with it, is this message of it's okay to take care of yourself. Like, everybody needs to hear that because so many of us do labor under the delusion that it's somehow self indulgent to do the basics.

Emma Heming Willis (22:01)

And not everyone are caregivers that are listening to your podcast for sure. But what they might not like to hear is that at some point in our lives, we will give care to someone or we might need care ourselves. So I think that the conversation of care, even if you're not a caregiver, I think it's important to have it on your radar, because I know it was not on my radar. I did not think that in my mid to late 40s I would becoming a caregiver to my husband. I did not know that dementia was not in my world. It wasn't in my realm. Caregiving wasn't even a thought for me until it was. And I hope that this book and this conversation about care is thought about. I feel like we're so allergic to this idea of care and death and grief, but I think it's very important to talk about it. And now that I know what this looks like, I have a very sort of detailed care plan for myself. So that at some point in my life when I will need care, the burden will not be put on my children to make absolutely every decision on my behalf. I'm going to try and make it a little bit easier for them. So I know that wasn't where you were going with your question, but I just wanted to put that out there. Care will happen to us at some point in our lives.

Dan Harris (23:30)

Yeah, well, it's actually going to be my second question, so it's not off topic at all. It's something I've thought about quite a bit, this question of care. I will say that I would include parenting in care, and you were a parent when this happened, so it's not like you had no history with care giving. But obviously beginning of life is different in lots of meaningful ways from the other end of the spectrum. But just to say a little bit about how I think about this, you know, as a dude, I didn't think about this at all, was not socialized to think about this. I mean, I'm 54. Like, I don't think Gen X guys grew up thinking about this stuff. I certainly didn't. So the first crack in the armor was having a kid, but then watching my parents get sick and having to lean in and, you know, take care of them. And I think about this a lot. We're in this era of optimization where people are trying to, you know, pull every lever to get better at life, to get healthier, to get. And I actually think learning how to take care of other people, which is not unrelated to learning how to take care of yourself, is a skill that we should all develop first of all, because it's inevitable, but also done right. And I think this is a big message in your book. Done right, it enhances your life.

Emma Heming Willis (24:47)

Yeah, absolutely. I've learned so much in the process of becoming a care partner to Bruce, things that I never thought that I would know or need to know or learn. And it has been truly very eye opening for me. And as crazy as this sound, what a gift I've been given. I have grown, I've probably already said that, but I have grown so much in this process, in ways that I never imagined being able to use my voice to advocate for my husband, challenge doctors that wasn't me. You know, very shy, very meek in certain respects. And, you know, just learning how to use my voice to help him help our family has been extremely empowering for me.

Dan Harris (25:39)

It's really cool to hear that, actually. So let's, let's get back though, to some of the specific pieces of advice you're delivering in this book in terms of how to take care of yourself. And again, I'll just say that these are pieces of advice that are applicable to caregivers and really anybody. But you're writing, of course, within the context of caregiving. So one of the first pieces of advice is to build community and connection. This can sound like kind of an empty bromide, you know, like a community connection. They can be rendered as cliches, but you're talking about it in a very concrete and practical way. So can say more about what you mean by this.

Emma Heming Willis (26:15)

Yeah, I was extremely isolated during the lead up to Bruce's diagnosis. When he was diagnosed, there wasn't really anyone that I knew that was dealing with a husband who was suffering from a young onset dementia while raising two young children. There was absolutely nobody that I could connect to. And I felt extremely alone and so isolated. And it wasn't until we were able to talk about Bruce's diagnosis openly, where then I was able to really figure out who my community is and who I could speak to. And just prior to that, there was a friend of mine, actually Bruce's really close friend, who had introduced me to a woman, Franny Whose husband had young onset Alzheimer's. His name was Paul. And Franny and I started talking and really connected. We were able to talk about feelings and emotions that I had never spoken to anyone about. And, you know, she would sit there and just look at me and say, I get it, Emma. Or yes, me too. Or that I experienced that as well. And there was nothing better to me than just being with someone, finding that person, someone within this community that really understood what I was experiencing. So community connection within this space where caregivers are so alone and so isolated is extremely important.

Dan Harris (28:03)

One of the expressions I use a lot, I didn't coin this phrase, but I think it's apropos in this context. Never worry alone.

Emma Heming Willis (28:10)

Yeah. Since connecting with Franny, I've really been able to sort of embed myself into the FTD community. And I go to conferences and different types of meetups, and I get to be with other people who just. They just look at me, they put their hand on my shoulder. They just get it. They just get me, and we get each other. And words don't really need to be exchanged. It could just be a hug, someone just squeezing your hand. There is so much beauty in that. And that is the other side of the grief is just really feeling this human connection with other people is something that I have never felt before in this capacity of, like, community connection, like, real connection. Doesn't matter that my husband is Bruce Willis. You know, this is just real life that is happening. A spouse to another spouse. To be able to just connect and be. It is profound.

Dan Harris (29:14)

We live in a really isolated era. People are lonely. And I hear from people all the time. You know, when. When we talk on the show about the importance of community, people sometimes even get annoyed. Like, how do you create community? What thoughts do you have on that score?

Emma Heming Willis (29:30)

So, as I mentioned, I was introduced to Franny, and that really helped me because she was someone who was ahead of me on the journey. It's important to try and find that person. And it can be a person who is a few steps ahead of you. It could be a role model. You know, for me, my role model, I'm very grateful to have Maria Shriver and Patti Davis. I talk about them in my book as mentors and role models. And, you know, there is a way to tap into people that you might not be able to meet by reading their books or listening to their podcasts or YouTube videos. And in terms of where else to find community, I mean, here's some ideas. You can go to your church, your temple, other places of worship, social media groups, organizations, you know word of mouth. Tell friends and family members you're looking for another caregiver to connect with. You know another way to find support is with a support group and you know your friends who are not caregivers. You know when you're ready to bring you know them in. These are important people and ways to find community.

Dan Harris (30:48)

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Emma Heming Willis (33:59)

I schedule it. I have a calendar. I mean, we put everything into our calendar from doctor's appointments to meetings to. And if I don't schedule some make time moments for myself, it will not happen. This idea of self care, I think is a little watered down at this point. And for me, what just felt more actionable was this idea of making time. Like, what do I want to make time for? What are the things that actually feed my soul? When I think of self care, I think of like, I feel like the beauty industry has kind of taken control of it in a certain respect. And if that's what rocks your boat, that's great. If it's a mask on your face or a bubble bath or whatever that is, that's great. But for me, it's like I just needed something that felt a little more actionable to me. So what, what are the things that are like my own type of meditation. And for me it was like gardening. I love being in my garden. I love weeding, I love planting. I love being able to water these plants, watch them grow, because that feels very much in my control. And it's just finding these moments and simple, right? Like getting outside to just feel the sun on your face and the breeze in your hair. Because for so long I was numb to all of that. I did not feel it, I wasn't looking for it. And now I just realize how important these make time moments are for myself. They don't have. That doesn't have to be big and grand. It's really can be very simple, but it's really just tapping into. Especially as caregivers, we lose ourselves so much in the process. And there came a point where I didn't know what made me me anymore. And I needed to do a bit of soul searching to figure that out. What were the things that made me feel like myself again. And it's really about being in nature, being outside, tapping into the birds, chirping the wind in the trees just helps just ground me. It really helps ground me.

Dan Harris (36:00)

The way you're describing it sounds actually in the zone of doability. Like, the putting an hour to go in the garden is different from, I'm going to run a triathlon.

Emma Heming Willis (36:10)

Yeah. I mean, why did I start gardening? Because it kept me close to home, where I could be outside and know that I could still be a caregiver. If something was happening inside our house with our two children, my husband, again, it was just like, what can I do that can just get me out of my role for a little bit? And I found that with gardening and being able to do maintenance around our house, I had this bench that was just worn down, and I learned that I needed to get this certain thing to scrub it down, and then I was able to seal it. And, you know, but I was just outside our house, so I was able to do that and just disconnect a little bit. It's finding simple things that feed your soul. And let me tell you, I love looking at this bench now. It's beautiful. And I did it like I was able to do that in the midst of the craziness of our lives.

Dan Harris (37:08)

One of the things you're touching on here is, and this is a big problem that people face whether they're caregivers or not. No matter what your schedule is, a lot of people find it difficult not only to make the time, but to. Even if you have the time to stay at something. And all of the research around habit formation or human behavior change points to the. The magic bullet being starting small. And that's exactly what you did. And it just makes it feel doable.

Emma Heming Willis (37:37)

Yes. And, you know, I think there's this thing that for caregivers, like, they don't have support. There are so many people out there that are doing this on their own. So for them, this idea of making time is really hard, even if it's to get out for a walk for 10 minutes, who's going to watch their loved one? So bringing in support is really important. I think the mistake that caregivers make, and it's not just me saying this, this is every expert in this book that's saying it, too, is that we wait too long to ask for help. We wait too long to bring in the support, and we need to be able to bring in that support so that we can just make time for ourselves. And if that is gardening, if it is just going to your annual doctor's appointment or getting your mammogram done, or something. You know, we need to be able to bring in that support so that we can make time for us as caregivers to care for ourselves, so that we can continue to care for the person that we love.

Dan Harris (38:33)

So that is another of the specific pieces of advice in the book, which is bringing in help. And you take a run at this head on in the book because you've had people say to you, well, you're married to Bruce Willis, of course you have the money to bring in help, but I don't have that money. And you address this head on and point out that there are cost effective ways to do this. Can you say a little bit more about that?

Emma Heming Willis (38:56)

Caregiving is not a solo mission, and it shouldn't be expected. That it should be. And I think that is the common misconception is that when you're. And I was one of those people, right when Bruce was diagnosed and as I became a care partner, I didn't think that anyone else could care for him the way that I could. I wanted to be in control of all of that and I did not want to have anyone else be a part of his care. But it is so important that early on that we start asking for help and to know that it's okay to ask for help, that we are not failing the person that we love because we need support. I will tell you, it takes a team and people are doing this solo.

Dan Harris (39:42)

Obviously, health insurance is a complicated subject in America right now, but my understanding is that many people are eligible for, you know, a visiting nurse service or, you know, home health aid to be there a couple hours a day. And you don't need to be a Hollywood celebrity or married to one to access these services.

Emma Heming Willis (40:07)

So the honest truth is that the cost of care is incredibly high. You know, people are often confined to make choices based on their finances. And that is a painful place to be in. You know, I'm not an expert on this, but social services exist through Medicare and Medicaid. You know, I'm not sure where things stand right now with all of that. I mean, it was already complicated before and sure, it's a little more complicated today, but you could reach out to volunteer groups that offer companion services to the social worker or nurse at your neurologist office, you know, and organizations. And if you don't have the resources to hire help, you may have to get creative about putting together a support system. You know, it really goes back to your community, your family and your friends.

Dan Harris (41:00)

So you have a whole section about do's and don'ts for family and friends because as you point out, family and friends are incredibly valuable and you know, they can say some annoying shit sometimes.

Emma Heming Willis (41:10)

Oh, yes, yes. I do feel that if your friends and family are not on the front line, they don't really get to. They don't really have much of a say of how you are caring for your person. I think that if you can bring them into the fold and be a part of your career, then that's different. But yeah, I've written a whole section for the caregiver to be able to pass on to a friend, family member of the do's and don'ts of how to help and how not to help. So, you know, the do's, I would say, can be very simple. What I think is beneficial is that the caregiver has to do a little bit of work and put some thought into a list of things that they do, maybe within the day, a week, within a month, that they can then compile into a list and be able to pass on to a family or friend. It could be, will you please put gas in my car every week? Can you please come sit with my loved one while they nap? Or just for an hour so I can get out. Can you deliver groceries to our door? Is there a food train, you know, where someone can deliver a lasagna once a week? You know, these are very simple, actionable things. Because what you'll hear from people is like, if there's anything you need, let me know. And instead of that, well, actually, yes, here are some things, because the caregiver, it's so easy for them to be like, okay, thank you so much. No, it's okay. I got it, I got it. They don't have it. They don't have it all. So I've put together a really beautiful kind list of ways, actionable ways that people can actually help. So when you hear there's anything you need, let me know. Caregiver will be like, oh, great, here's some things I need.

Dan Harris (43:16)

So many of us, I think probably all of us have been in situations where we have a friend or a family member who is going through something awful and find ourselves reflexively saying those words, what can I do to help? If there's anything you need, et cetera, et cetera. Are there better words that we can utter to our. A friend or a loved one who's in crisis that might be more practical and helpful rather than the kind of broad, you know, let me know if I can help.

Emma Heming Willis (43:42)

I mean, I'm just looking at this on the, on the, don't listen. And I say, you know what would be really lovely is if someone says, I'm here for you no matter what. You're not alone in this. And I know this isn't easy, but you're showing up with so much love and strength. And I feel also instead of just this idea of like, well, just let me know if there's anything I can do, just do you know, when I hear that a friend of mine is having going through a hard time, whatever it might be, I just do what I feel is right in my heart and not have to put this on them to figure out what they need in this time. I've arranged for us to go have a lunch or I'm gonna pick you up if you're available at 10 and we're gonna go for a walk and I'll bring coffee. Let's not just put this sort of open ended sort of idea of like, if there's anything you need, I'm here, just show up.

Dan Harris (44:45)

It's a balance though, because you don't want to show up in a way that's intrusive.

Emma Heming Willis (44:49)

No, you can give them three options. Here are three options for you so that the caregiver doesn't have to think of what they need at that moment. Do any of these three things work for you? I'll pick your kids up from school and take them to dinner. Or if you would be up for a walk at 10am, I'll bring coffee. Just give the options so that the caregiver can be like, okay, this is something that can work for me. Or the caregiver will say, you know what, this isn't happening for me right now. Can you reach back out in a week or two and we can revisit this? I just want like action. I don't want this just free floating idea anymore for care. Caregivers need support. They are unseen, they are unsupported and they need help.

Dan Harris (45:36)

What are the other don'ts?

Emma Heming Willis (45:38)

I don't like when people tell me, you've got this. I don't like that.

Dan Harris (45:43)

Don't.

Emma Heming Willis (45:43)

I really hate that.

Dan Harris (45:44)

Don't.

Emma Heming Willis (45:45)

You've got this. And I'm like, but do I? Because I don't really feel like I do. You know, I feel like I'm making a lot of this stuff up on the fly. I don't like that. Don't. But there are other don'ts also.

Dan Harris (45:58)

Don't offer unsolicited advice or new treatments without doing the legwork. Don't Mention cures for conditions the person doesn't have. And don't say that the loved one, quote, unquote, seems fine.

Emma Heming Willis (46:13)

Yes. All of those or don'ts. You know, everyone has a cure, reversal, a treatment, and I appreciate that. But a lot of people don't understand FTD and that there actually is no treatment and there is no cure for it. And, you know, a lot of people have solutions for you without doing any kind of research or have any kind of grasp or understanding about what these diseases are and how it moves through a person. So I don't really like when people are coming to you and giving you how. Have you tried this? Are you doing that? Da, da, da, da, da. It's like, been there, done that, done it all. You know, again, the support that I really need is for you to drop some groceries off for me or go pick up the prescription. That's where you can put your energy. Or go do the legwork. Go figure out what this is and bring me the paperwork on it. Again, just do these. Just ideas. Oh, I just heard that there's a new drug for Alzheimer's. And I'm like, well, Bruce doesn't have Alzheimer's. He has ftd.

Dan Harris (47:21)

Right.

Eleanor Vasily (47:22)

Right.

Emma Heming Willis (47:22)

You know, it all comes from a place of love. But as a caregiver who has heard so many things, I think people are just putting their energy in the wrong. In the wrong area.

Dan Harris (47:31)

No, this is very helpful. We all run into these situations. Another don't that's actually a do is don't give up on offering invitations, even if declined. As caregivers, we still appreciate feeling included.

Emma Heming Willis (47:43)

Yeah. I mean, for so long, I wasn't accepting invitations. And at some point, like, the invitations stopped coming. But there was a reason for that. It was because I wasn't being fully honest about what was happening to my husband. So I would decline offers. And what I should have done was been honest. Because I think that then there became this idea that I just didn't want to show up anymore. I wasn't a part of my certain friend group or whatever it is. I think it's very important to be honest with you, the people around you, and that when they're asking you to, they're inviting you someplace you can tell them the reason why this is hard for you right now to leave because of whatever it is that you are going through with your loved one. But it takes a lot of energy to accept invitations when you're a caregiver because you're so spent, but you don't want to not be included. So I think it's still really lovely to be able to get invites from friends. And I decline a lot of them still, but they understand why. I do try and make sure that I say yes to one or two every once in a while, so I don't isolate myself and be a human in this world.

Dan Harris (49:00)

Yeah. Saying yes is another form of self care sometimes connection.

Eleanor Vasily (49:04)

Right.

Emma Heming Willis (49:04)

Just being able to connect with someone else. And you can put a boundary in place if you feel like you just want to see someone and not talk about your person that you're caring for. And, you know, just say, we're all, yes, we can talk about it for five minutes, but then I'd like to not talk about it and just talk about anything else.

Dan Harris (49:24)

One of the other big practical sessions in the book is about expecting an array of emotions. You talk about a lot of emotions, and I want to. I want to go through them. But one of them is a kind of grief, and it's an interesting grief because the person's still here. You're kind of grieving the gradual loss of them in real time. And you're grieving the loss of the life that you thought you were going to have.

Emma Heming Willis (49:50)

Yeah. This is called ambiguous loss, and this was coined by Dr. Pauline Boss for when you're dealing with ambiguous loss in dementia. It's that the person is still physically here, but psychologically not. So you are grieving someone that is still alive, which is hard. You know, it's very hard to do that in real time.

Dan Harris (50:20)

There are several flavors of grief. There's the ambiguous loss, and then there's also the grief over the fact that you had an idea that your life was going to go a certain way, you were going to raise children with this seemingly healthy guy in his late 60s, mid to late 60s. And so you have to grieve the life that wasn't.

Emma Heming Willis (50:41)

Yeah, I don't think I fully wrapped my head around all of that yet. I am in talk therapy, which has been very important for me to be able to get these array of emotions that I do feel, which is not just grief and sadness. I have many other emotions. But yeah, again, you know, we are walking this journey and I think sometimes I haven't really fully mourned everything yet. It's a process. But yes, of course we did. We had our lives sort of mapped out. We knew what we wanted to do. We were gonna, you know, travel with our kids. We had all these things that we had planned, and it's just gone. That page has been ripped out. And it's starting new and with new different ideas for us.

Dan Harris (51:30)

You also talk quite a bit about dealing with fear. What did you learn about dealing with fear?

Emma Heming Willis (51:36)

I'm a very fear fearful person. I'm very fear based. So it's really interesting to me that, you know, something that has been so hard to walk through has now just sort of been embedded and so a part of my life that I've had to sort of deal with all of it head on.

Dan Harris (51:55)

You include some tips that you got from the therapist Kathleen Murphy that are really helpful in the moment when fear or anxiety are predominant. Can you walk us through what you do when you're having one of these freak out moments?

Emma Heming Willis (52:09)

Absolutely. So Kathleen, who is a huge fan of yours actually. Dan.

Dan Harris (52:13)

Oh, thanks.

Emma Heming Willis (52:14)

Yeah, she would always bring you up in a lot of our therapy sessions. You know, she does this thing that she is told me to do is that when I am experiencing fear, there's a couple things she's told me to do, but one is just to wrap my arms around myself and just take a minute and close my eyes and just acknowledge the feeling and not to skirt by it or act as if it's not there. It's just to settle into the moment. And usually what I realize is that when I am having a moment of fear or anxiety, it's really just my head that's kind of getting in the way of everything as opposed to something really scary or something that I should be very fearful of happening. So for me it's very helpful. I just acknowledge my feeling if it's fear, if it's grief, if it's anger, whatever it is, just to be there and acknowledge this. Another thing that she has taught me about stay here, don't go there. I can be swirling in my thoughts and I'm a very anxious person and I can just let my thoughts get the best of me. And I have an alarm set on my watch that goes off four times a day that reminds me to just stay here and don't go there. So that when I hear it go off, I then just get out of my head, which is just constantly, I'm constantly thinking of things and it just kind of silences me for a second and brings me back into my body and I start to feel the ground beneath my feet. And just this feeling comes over me of like, no, just be here. Be in the moment. You're driving your car, you are going from point A to point B. Like just be here. Don't be thinking about all the things that might happen. Should be happening, aren't happening. So this idea of just stay here in the moment, don't continue to go there to those crazy ass thoughts that I'm always having in my mind.

Dan Harris (54:23)

On the giving yourself a hug thing, just to say that when I first heard about things like that, putting your hand in your heart, giving yourself a hug, just going back to my Gen X male upbringing, I was not down with that shit at all.

Emma Heming Willis (54:35)

I wasn't either.

Dan Harris (54:37)

But there's a ton of science to show that it's really good for you and really helps. It can bring about some meaningful physiological and psycholog responses. So I do it, you know, like I have claustrophobia. I've talked about this before. When I get on a plane, often I'm really nervous and so yeah, I'll put my hand on my chest and yeah, nobody has to see, you know, nobody knows what I'm doing. Put my hand on my chest. And I'm just telling myself I got this. It's very helpful, especially I think for people.

Emma Heming Willis (55:04)

For myself, I'll speak for myself, who really deals with such an amount of anxiety. And I, I normally feel very disconnected or outside my body. The hug, the wrapping my arms around me, or just the putting my hand to my chest, there is something very grounding about it. And I remember when I first heard, I mean, I think I even wrote it in the book. Like, I know this sounds insane, but just give it a try, just give it a shot because it is helpful. And then the minute I take my hand away from my heart, I'm off to the races again.

Dan Harris (55:38)

Yeah, but at least you got a break.

Emma Heming Willis (55:40)

At least I got a break. At least I got a break. It's not healthy to be in a state of anxiousness all the time. I know that.

Dan Harris (55:47)

A couple of other emotions that you talk about, empathic distress, it has to suck to see. I know what it's like to see someone you love in pain is awful.

Emma Heming Willis (55:58)

Yeah. Thankfully Bruce is not in pain, which I'm very grateful about. But what I used to do, and I have to be very conscious about it, is that I need to get myself out of Bruce's body because I think about what is he thinking, what is he feeling, what is. You know, and as caregivers, I think we do that because we have to. You know, especially for someone with PPA who has a hard time communicating, I have to really actually go into Bruce's body to sort of figure out is he okay? Like what are the signs? Does it seem to me like his neck is hurting is his back off is, you know, you are just constantly having to be that person. But it is not healthy for me to project what I think he might be feeling. And I think we, well, a lot of people that I know who are caregivers to someone with dementia, it is so easy to get lost in our people. But it's been really helpful and important for me just to kind of be able to just get back into myself. And sometimes when I realize that I'm getting into this distress that I put this kind of bubble around myself, I like, I imagine this bubble that I am in that can kind of just help shield me so that I can really tend to Bruce and his needs from a place of sanity, you know, so I can really see what is real and what is not. And that has been very helpful for me. That was another really great pointer from my therapist, Kathleen.

Dan Harris (57:35)

Shout out to Kathleen More from Emma Heming Willis right after this. This episode is brought to you by Choiceology, an original podcast from Charles Schwab. It's hosted by Katie Milkman, an award winning behavioral scientist and author of the best selling book how to Change. Choiceology is a show about the psychology and economics behind our decisions. I can say personally that I 1 million percent vouch for Katie. She is an incredible scientist. She's done so much work that informs what we now know about how to make behavior change or habit change in our own lives. She's been a guest on this show. She's not only incredibly smart and accomplished, but also really warm and a great speaker who's able to articulate complex and important ideas in simple ways. On the show, which again is called Choiceology, you'll hear true stories from Nobel laureates, authors, athletes and everyday people about why we do the things we do. You can listen@schwab.com podcast or wherever you're listening to this podcast depending on where you live. The cooler temperatures are rolling in and if it's not happening right now, it's going to happen soon. It always does. And Quince is where I'm turning for fall. Staples that actually last from cashmere to denim to boots. The quality holds up and the price still blows me away. Quince has the kind of fall staples you will wear non stop. Like super soft 100 Mongolian cashmere sweaters starting at just 60 bucks. I've got like four of those. I'm gonna bring those out of the back of the closet to start wearing again now that fall is here. Their denim is, is durable and fits right in their real leather jackets. Bring that clean, classic edge without the elevated price tag. What makes quints different? They partner directly with ethical factories and skip the middlemen. So you get the top tier fabrics and craftsmanship at half the price of similar brands. I was at a party last night. I was wearing my quince pants which fit really well. They look good, not too tight, just the kind of thing a man of my age craves. I've got many, many quints go to's. Aside from the aforementioned cashmere sweaters, I also wear quince sweatpants on the regular often while I'm doing interviews for this podcast. Keep it classic and cool this fall with long lasting staples from quince. Go to quince.com happier for free shipping on your order and 365 days returns. That's Q U-I-N-C-E.com happier free shipping and 300 at 65 day returns quint.com happier so we've just talked about a bunch of difficult emotions. Grief, fear, empathic distress. All of that can add up to trauma. There are a couple tools that you write about as being helpful for you. One, actually, I hadn't heard of either of these. I think these are two different tools. But you'll tell me if I'm wrong here. One is called purge emotional writing and the second is called give yourself 30. Maybe they're the same thing, but can you talk about whatever I've just referred to?

Emma Heming Willis (61:05)

Yeah, different. So Patti Davis, the daughter of former and the late President Ronald Reagan, taught me about giving yourself 30 that you can be in any emotion that you want to be. And if it's anger, grief, whatever it is, for 30 minutes and then you have to move on. So you set a timer, you have these emotions and you get into it. So whatever it is that you're feeling, go for it. But after 30 minutes, you need to bring yourself out of it because it is not healthy to stay in the moments of anger or resentment or whatever that might be. So I've loved that. This just gives you permission to really feel it, but not to remain there all day, you know, get back into life. So that is a give yourself 30. And the Pew 12 was taught to me by a really wonderful doctor, Dr. Sadecki, who talked to me about purging emotional writing. That's the Pew 12. And it's just about writing for 12 minutes. You set a timer and you write about anything that you might be feeling. You are not allowed to edit this. If you have typo, not typos because you're. This is about taking a pen to paper. So you just write and you write and you don't have to read it back. You just get whatever it is that you're thinking, feeling. It's like a stream of consciousness that you get onto a piece of paper and then he likes to burn the paper. Because I am so fear based, I don't burn the paper. I just crumple it up, you know, kind of shred it up a little bit. And that's what I do. But yeah, it's just about a stream of consciousness. You know, I know a lot of people, they. They write, they journal. And I know for me, writing this book was very healing. I know that journaling is very healing for me. And I know that this Pew 12 of writing 12 minutes every day just to get whatever I am feeling in out is my form of self therapy.

Dan Harris (63:08)

Okay, that actually brings me to the last big practical area I wanted to discuss with you, which is about reframing. You know, when shitty things happen to us, how can we reframe it? And I think one of the reframes you listen in the book picks up on just what you were saying right there. And it's about turning pain into purpose. Yeah. Can you say a little bit more about that?

Emma Heming Willis (63:27)

Yeah. I mean, the reframe is not about this, like, toxic positivity for me. What I realized is that when Bruce was diagnosed and, you know, speaking to the doctor about the statistics and then really just learning how to sort of bring parts of my life back, I knew that I didn't want Bruce's disease to take our whole family out. And that was sort of started this idea of the reframe for me, of feeling the immense sadness and grief, but also having room for the beauty and the light that I spoke to you about, you know, earlier on, that this is a terrible thing to walk through. But again, there's been so much beauty that has come from it. And what I have realized is that I needed to make sense of what was happening. So being able to turn my pain into something that was actionable, like being able to just share more so that others don't feel as alone for me to be able to raise awareness about ftd, that has been the reframe for me as well. I think it's helped people to hopefully get to a diagnosis earlier. I think that is really important as well. Just understanding that it's not all dark, it is not all terrible. And in those early years, it was. And it was only that. But I think what I have realized and what I want other caregivers to know if they are just starting on this journey is like, sorry, that there is. There is beauty on the other side of it. And it just. I didn't realize that early on because no one told me that. So I just want others to know that that is there. And it will come at some point just to know that you will see as a caregiver how much you grow and how much you can love and just what a superpower it is. And I didn't know that when I walked out of that doctor's office with Bruce with that diagnosis. It was just really so one note, but that is the reframe of just being able to walk alongside of it. We are not through this journey. We are still on this journey. But I'm able to walk alongside it now, which I never thought I would be able to in a million years, but I have. We have as a family.

Dan Harris (66:01)

It's such a useful, powerful reframe that whatever we're going through, no matter how awful it is, the awful just isn't the whole picture.

Emma Heming Willis (66:14)

Yeah. I didn't know that early on, and I wish someone would have told me that. I just thought, like, the life, our life was just going to be awful. But I'm so happy that it is not. It is not. We share so much joy. There's so much laughter in our home. There has been just great gifts that have come from something that is terrible.

Dan Harris (66:40)

There are some other really useful reframes in your book. One of them, I want to go through a few of them. But one of them is that this is an opportunity for your whole family to learn and grow. I mean, one of the key concepts, both in modern psychological science and in ancient Buddhism, is that compassion is a skill that you can train in, and that the better you get at it, interestingly, the happier you get, even if you're in an awful situation. And so it seems to me like there's a lot of learning and growing that can happen for the whole family in the midst of this very difficult situation.

Emma Heming Willis (67:16)

Yeah, I mean, I think that is where we're at. And not just for compassion for Bruce and what he's going through, but I have so much more. I hold so much more compassion for just people in general. You know, I'm able to hold so much more space for others and what they're navigating, and I love that. I love the connection that I have now with others that is much deeper than I've ever had in my life. And it took having to go through something, going through something that feels terrible and very hard to. Here I am, much more compassionate, much more patient, much more loving, much more accepting.

Dan Harris (68:03)

Yeah, yeah, it's one of the, just to put a fine point on it, one of the reframes that you listen, the book is viewing caregiving as transformative. And I know I've been, you know, banging on this drum since the beginning of the interview. It's probably honestly because, you know, I'm 54 now. In some ways, most of the content I create is trying to reach the 35 year old version of myself who kind of, who definitely had his head up his ass in so many ways. And as I said earlier, was not thinking about caregiving. It was not on my radar. But of course it's inevitable. And if you're going to try to optimize for stuff, this is the thing to optimize for. Because if you want to put it in that kind of lens, which I think is what speaks to a lot of people in our culture, like, why pay any attention to this if it isn't going to have some sort of benefit that shows up on my apple. Watch health metrics. Well, compassion is correlated to happiness and health. Higher levels of life satisfaction, it's good for you. We see this at the level of the brain and the, the nervous system generally. And so, you know, it's why we should, whether we've got a sick loved one or not, we should be volunteering in hospices. We should be building this muscle because it's good for you.

Emma Heming Willis (69:17)

Yeah, I love how you've just broken that down. You know, I'm again in the caregiving moment and role. So I'm not always, you know, I don't always have that bird's eye view of that and especially about compassion. But everything that you just said, Dan, is absolutely right. I think helping someone cross the street, bringing their groceries out to their car for them, it's just these just really small acts of kindness that bring more compassion and love into our lives. And being able to do something for someone else makes you feel good.

Dan Harris (69:48)

Yes. Now I'm just on the soapbox that I'm on all the time. And I apologize to loyal listeners who've heard me say this shit a million times. But the world, as ugly as it may seem when you're on Instagram reels, is actually for all the suffering that's out there, it is a target rich opportunity for boosting your own happiness by being useful. And it doesn't have to be running into a burning building. It can be helping somebody across the street, having a kind word for strangers. Whatever it is, there's a ton of data to show this is all good for you. And not for nothing, good for the world. That's a theme of this conversation, actually. I think the line between good for you and good for the world is much fuzzier and blurrier and porous. Much more porous than we think.

Emma Heming Willis (70:37)

Yeah, I mean, we're all so connected to our phones and walking around with our heads down and, you know, I just make this conscious effort to put my phone away, to really just look up and meet people in the eye and look at them and, gosh, just connect. I love that my kids, they see that I am talking to people that I don't know or, you know, connecting with the person who was bagging our grocery. Whatever it is. It's just about, like, conversation, like real life. Like, people are not used to having conversations with anyone anymore. So I just. Even. Just that. Even just talking and going off track here.

Dan Harris (71:18)

But no, you're not. Let me jump in on that. Sorry. I hate interrupting people, but I don't want you. I don't want to lose that thought that you were just on. It sounds to me like. And you tell me if I'm right about this, because I. We're just meeting each other now, but it sounds to me like this grenade that landed into your family's life may have cracked you open and made you more engaged with the world in ways in which the previous anxious version of yourself might not have been.

Emma Heming Willis (71:46)

Yeah, I think my anxiousness sometimes just keeps me in my own way. And Bruce would always tell me, emma, you gotta get outta your own way. I just have been so fearful and so protective of me and the family and the things and everything where it's like I needed and not I needed the bomb has been very helpful for me to go the complete opposite of feeling isolated and sheltered. And I don't want to share my story, and I don't want it to get out. And I need to protect Bruce and I need to da, da, da to. Now I've gone the complete opposite of that, you know, now I am sharing our story to be able to help someone else. I go to these FTD events so I can connect and hear someone else and what they are going through. It has really just opened up my world completely. I felt like I was walking around with blinders on, sew up my own ass, like you said, you know, and now I just. It's like the blinders have been taken Off. And it's like, I see the world, I appreciate the small things. And I don't take it for granted. I just don't. And it's unfortunate that this grenade had to go off in my life, in our family's life, for those blinders to come off. But again, that is the reframe it is. Seeing that it hasn't all been bad.

Dan Harris (73:09)

One last reframe I want to ask you about. You mentioned this a little bit when you talked about the fact that joy is still present in your home. But a friend of mine who's kind of my age, not the type of person you would expect to say what I'm about to say to you. He's a guy, my finance guy, my age, hard charging investor dude. But in his early 20s, his mother got brain cancer and he cared for her right up until the end, did the hospice care himself. And when my parents got sick, he said this thing to me that at first it kind of felt like maybe just kind of empty words, but really, really stuck with me. And this was many years ago. He said, try to see if you can find the sweetness in it. I wonder if those words resonate with you.

Emma Heming Willis (73:56)

I'm always trying to find the sweetness in it. And there has been, again, you don't realize that in the early, you know, when you're trying to get to a diagnosis or you're puzzled and you don't understand what's happening to your person. It's just there is no sweetness in any of that. But then, yeah, there is joy, there is laughter in our house, and there is sweetness that we have been cracked open to. Our house isn't all sad and it is not all filled with grief all the time. It is absolutely there. But we have found a balance, I think, to enjoy these sweet moments that present itself to us. And we are so open to see it and I'm so grateful that we get to see it. It's not all great, but it's not all bad.

Dan Harris (74:48)

Final question for me, and I've resisted saying any of this or asking this till now, but you know, I grew up watching your husband and Die Hard and all of the sequels and Moonlighting. You know, he kind of was the avatar of masculine cool with a, you know, both, you know, he could shoot the bad guy and also be really funny. You know, yippee ki a motherfucker and all that other stuff. And so. So I'm just curious, like, how's he doing now?

Emma Heming Willis (75:14)

All things considering, he's doing very well. It's a Hard question to. It's a triggering question, actually, because sometimes I just don't know how to answer it. I don't really know how to answer it. My husband is not in any pain. He is doing okay with a really hard diagnosis. So there's my answer.

Dan Harris (75:39)

Well, apologies for asking a triggering question.

Emma Heming Willis (75:42)

Oh, no, no, no, don't. I mean, everyone asks me, and I love that they do. I love that you ask because I want you to ask, but it's just hard to answer. It's just hard sometimes hard for me to answer.

Dan Harris (75:53)

When people ask about my dad, who's, you know, pretty far along in his dementia path, what I can say with some confidence is he seems happy. Would those words roughly apply to Bruce?

Emma Heming Willis (76:04)

Yes, absolutely. It's really quite fascinating to see, actually. You know, for someone like me so out of my body most of the time, to see someone so in his body, so present, not worried about what happened yesterday, what's happening tomorrow, just grounded. It's actually beautiful to witness and to be a part of that, because when we are with Bruce, sitting with him, holding his hand, we are in that moment with him. So I think he, to me, feels. I feel like, very content, very present, and I would say, dare I say, happy.

Dan Harris (76:49)

Well, sounds to me like the way he's handling this is probably the most badass role he's ever taken on.

Emma Heming Willis (76:56)

He's handling it like a badass that he is, 100%.

Dan Harris (77:01)

Well, I will say, because I'm not sure you can or would ever say this about yourself, but the way you're handling this is pretty badass. It is not easy to care give, and it's not easy to go public and talk about it. So I appreciate you doing that. Before I let you go, can you just remind everybody of the name of your book and any other resources you've put out into the universe that we should be aware of?

Emma Heming Willis (77:22)

Sure. It's called the Unexpected Journey. Finding Strength, Hope, and Yourself on the Caregiving Path. Yeah. The book is full of resources and really helpful, tangible ideas that I hope will really care for the caregiver. I have a website which is emmahemmingwillis.com and on this website now, I'm adding in resources for caregivers that are either starting this journey on this journey where they can come and sort of poke around and see if there's an organization that might be helpful for them. I have a blog where I am inviting experts and specialists and other caregivers to be able to share their advice, their tips, their caregiving stories, which I think is really important to be able to hear from other caregivers, and that's what I got.

Dan Harris (78:17)

You got a lot. Emma Hemming Willis. Thank you.

Emma Heming Willis (78:22)

Thank you so much, Dan. Thank you. I appreciate it.

Dan Harris (78:28)

So thanks again to Emma Heming Willis. Now is normally the time where I would be doing some final announcements and thanking the team. However, we're doing something a little special today. I'm actually bringing in the producer of this episode, Eleanor Vasily, because I want to talk to her about her personal connection to this subject matter. So let me just start by saying hi, Eleanor.

Eleanor Vasily (78:51)

Hi, Dan. Thanks for doing this.

Dan Harris (78:54)

My pleasure. Thank you for doing it and thanks for pitching Emma, as listeners will have just heard, she's amazing. Just some context here. You messaged me on our slack a few weeks before we started the recording with Emma saying that you wanted to talk to me. I kind of thought maybe I was in trouble when that slack came in. But anyway, you said you wanted to.

Eleanor Vasily (79:19)

Talk to me, so that message is coming later.

Dan Harris (79:21)

Yeah, exactly. So what did you want to talk to me about?

Eleanor Vasily (79:25)

Maybe first I'll back up to when I first pitched Emma and I shared with the team a little bit about her book because I had taken a look at it. I shared some context for Bruce's diagnosis because at that time, you know, it had been in the news, but I wasn't sure if everyone was. Was aware of the details. And then on a personal note, I shared that someone close to me also actually had the same exact initial diagnosis of Bruce's, which was something called primary progressive aphasia. But being a fairly private person, I didn't elaborate any further until I messaged you on Slack and I asked if you had a minute to talk.

Dan Harris (80:08)

And so you want to tell everybody what you told me when. When we talked?

Eleanor Vasily (80:13)

Yeah, I said that the person who was close to me was actually my partner in 2023. You know, coming on two years now, after a couple years of us going to see a neurologist and kind of trying to figure out what was going on because he was struggling getting. Sometimes we were just kind of coming up dry, you know, they essentially said that they thought that he had social anxiety, which he does. He does have that. And then one day we were introduced to a specialist who was someone who was actually familiar with some of these neurodegenerative diseases. And he sat us down and he talked to both of us for about an hour and asked us a lot of questions. And then he said, I'm really sorry, but I am 95% sure that I know what's going on. And then he diagnosed my partner with that progressive aphasia diagnosis. And, you know, two things to say off the bat. The first is just that my partner's condition has not progressed to the point that Bruce's has right now. The main symptoms that he has are basically he really struggles with communication. He has a hard time getting words out. He says them in the wrong order. Sometimes words are missing. And everything takes a huge amount of effort and focus. I mean, the wild thing is, is that because of the fact that we're incredibly close, we have a bit of a shorthand. And I've never, ever had trouble understanding him. It just takes a little bit more time and patience. But, yeah, it is something that he lives with every single day, and it's incredibly challenging and frustrating, and it's something that we're navigating together. And then the second thing that I want to say is just to acknowledge the fact that before I messaged you, Dan, maybe even before I pitched Emma as a guest, and certainly before, you know, this moment, I asked him how he felt about me talking about him and me sharing about us in that capacity.

Dan Harris (82:18)

I imagine since we're having this conversation, he was cool with it.

Eleanor Vasily (82:21)

He felt good about it. You know, for the longest time, not having a diagnosis and not knowing what was wrong was just. It was so challenging and also painfully frustrating. Being able to point to something as the cause in having an actual diagnosis was an incredible relief. PPA or FTD aren't things that people have heard of before. And in a lot of ways, Emma, putting a spirit spotlight on all this is going to allow more people to get properly diagnosed and faster. And the awareness that Bruce has brought to this could lead to more research and it could help a lot of people, us included.

Dan Harris (83:03)

So he's a lot younger than Bruce, if memory serves. Am I right about that?

Eleanor Vasily (83:07)

He is. My partner is 51 now, so he was 49 when he was diagnosed.

Dan Harris (83:11)

And do you have a sense of what the prognosis is?

Eleanor Vasily (83:15)

That's a hard question. You know, when I was leaving the doctor's office, when we were first told the news, my partner, he had to go to work afterwards. He wasn't expecting to get a diagnosis that day. It kind of came out of nowhere. And so we had to say goodbye, and we said goodbye on the train. He was going off to work and I was going off to home, and I just started. The neurologist had warned, like, don't look on Google, but, I mean, you get a Diagnosis you've never heard of. What are you gonna do? You're gonna look it up. And so I started Googling like crazy. And you know, you see things like people tend to have a life expectancy of seven to 10 years after diagnosis, but every single person's situation is completely different. And as of now, I'm happy to say that his diagnosis has not progressed much farther than the initial day we were diagnosed, which is a huge blessing. But, yeah, nothing is certain and we have no idea what the future looks like.

Dan Harris (84:17)

And so he can still work. And you don't find yourself in a caregiving scenario as intense as Emma Heming Willis?

Eleanor Vasily (84:27)

Absolutely not. But at the same time, I definitely identify with a lot of or everything that she said. I think I've taken on this role of helping my partner communicate and that's helping write his emails, making all the phone calls calls, making all the doctor's appointments. That's how I can be useful right now. And I don't know if I identify with that word caregiver or care partner, but I do know that it is likely a part of my future. And he's working part time right now. Him being around people and him being around people that he trusts, that he's known, that he's worked with for a long time is really one of the best things for him because it keeps him engaged and gives him a sense of normalcy. And yeah, he's fully capable of working still.

Dan Harris (85:11)

So you, you said earlier that you're a really private person. How, how is this, how's this going for you, this conversation?

Eleanor Vasily (85:20)

It feels both awkward and good. I really didn't want to make the interview or the episode or any of it about me.

Dan Harris (85:30)

Right.

Eleanor Vasily (85:30)

Because it's not even about me. It's about, it's. It's really about my partner. You know, it's a weird thing to feel like you're helping speak for somebody else, but I just think it felt, it felt like the right thing to do.

Dan Harris (85:43)

I actually want to go back to awkward but good, which you kind of backpedaled on. But I, I'm wondering whether actually that there's something useful in that because something I think about a lot. And you know, I think about it a lot because I talk about it a lot is all these cliches around community and social connection. It's the key to our health. And I'm the kind of guy who gets up and says that in of audiences. But it can be kind of annoying because we've heard it so many times and like, also, how do you actually do it? Especially if you're a private person and awkward, but good seems like the answer for many of us. It's hard to get over the hump to be revelatory or as. As Renee Brown would say, vulnerable. And yet I'm not surprised to hear that it feels good, too.

Eleanor Vasily (86:34)

I think it feels good, but very uncomfortable, partly because there's a risk involved in exposing something personal. But it's also hard to build any kind of community, let alone build a relationship, without first being honest about something. And when it comes down to it, I want the same thing as Emma. I have personal stakes in this topic. And, you know, being able to have a contributing voice, it feels necessary and it feels meaningful.

Dan Harris (87:08)

Yeah. Well, you're doing great. Before I let you off the hook here, I'd be curious to hear what your takeaways were having, you know, listened in on. On that interview with Emma, one of.

Eleanor Vasily (87:19)

The main things that stood out about her book and a small portion of her interview was something that she said, and it was in regards to exactly what you're saying. You know, how do you find community? And one of the pieces of advice that she touched on was the importance of finding somebody who is ahead of you on the same journey. And that really just. It struck a chord, because I think it's been one of the most helpful things. You know, you might not be able to get another person to solve all your problems or answer all of your questions, but they can understand you a little bit more. They can make you feel a little bit less alone. And I think that is really one of the most crucial steps, is to find people that are ahead of you on the journey. You could be, you know, dealing with a major life change. You could be dealing with another type of serious health diagnosis. I think any rocket that goes off in our lives, I think just being able to have a touch point of somebody who's like, you know what? I've been there, and who actually understands a little bit of what you're going through is a really powerful thing. And so I feel like that, for me, was one of the biggest takeaways of both her book and the interview.

Dan Harris (88:33)

Yeah, that lands. Anything else that struck you powerfully.

Eleanor Vasily (88:38)

I guess the other thing that I would say kind of goes back to the reason why I pitched her in the first place. Every single guest that we talk about bringing onto the show, we ask this question, you know, like, what is the most relatable kernel of wisdom that they have to offer that can really reach as many people as possible. And with her, that was definitely a question, you know, like, how can we make a large audience relate to an episode about caregivers? And what I've learned is that it really is actually an episode for anyone. You don't know what you don't know yet. Thinking about this stuff can help your future self prepare. You can learn to support your friends. You can learn the skill of caring for another person when they can't care for themselves. It might all sound terrifying and morbid, and it definitely is, but it's a lot more than that. And you might be surprised because it's actually this incredibly important part of life. And it can also be an opportunity to grow, even if, you know, nobody asks for it.

Dan Harris (89:44)

I just totally agree with that. I mean, I will have said this in the introduction to the episode that. And this is a bit of a riff that I go on pretty frequently, but many of us are optimizing for the wrong things. I think it's important to optimize your sleep and maybe your diet if you don't get crazy about it and your exercise and count your steps and all that stuff. There's a certain amount of optimization that I guess kind of makes sense. But. But the most important thing, if you're interested in the data of human longevity and thriving, is the quality of your relationships. And a huge part of relating to other people is taking care of them. You know, we. We are enmeshed in, like, this net of mutuality. That's just the truth of the human condition. And so taking care of other people, whether it's a sick family member or a friend who gets sick, or a kid, an animal, a colleague who needs help, like, that's all caregiving in my view. And as it turns out, even though it can suck, it makes you happier and healthier. So you can view all of this through an optimizer mindset, which is not always a healthy mindset, but I try to kind of skew it in a healthy direction. Does any of that make sense?

Eleanor Vasily (90:55)

It does. It's funny, Dan, because I actually, in some ways, I have a hard time connecting with the optimizer part of it because it just feels like such a. Like the wrong word to. To use in this specific conversation. But I know that it's true. At the same time, some part of me wants to push back.

Dan Harris (91:14)

No, I agree with that, too. And that's why I kind of make the argument with some sheepishness. I can see that tendency so powerfully in myself, and I just see it abroad in the land and in the culture, there's so much of it. So I'm just trying to harness this thing that's happening in the human mind and in our current culture and direct it towards shit that's actually beneficial not only for humans, but for the human race, not only for individuals, but for us as a society. So your squeamishness vis a vis optimization, I share it. I'm only bringing it up because I think I'm trying to harness this thing and point it in a healthier direction.

Eleanor Vasily (91:54)

And, I mean, I think anything that gets people more likely to talk about these things the better. And if that's the framing that helps, then, you know, I'm sold on it.

Dan Harris (92:04)

Before I let you go back to the rest of your workload, which is all probably my fault anyway, anything else you want to touch upon, I just.

Eleanor Vasily (92:14)

Want to thank you and the rest of the team. You know, it's rare to have a workplace that it feels both appropriate and relevant and important to share something this personal. And I don't take that for granted. We have this job of being able to seek out and source people who we think can be great guests that can offer our listeners advice on how to survive life a little better. And that that includes us as well. And I think on top of that, we also get the benefit of having you then interview those people. And so I'm just grateful being able to have a voice for this specific topic. It feels important, and so I'm just happy to have a place to say it out loud.

Dan Harris (92:57)

Well, thank you for doing it. I mean, again, you said before that you're a private person. I had that strong sense from knowing you a little bit through working with you. So this can't have been easy, but it does illustrate. First of all, I think it's. You've done a service on two levels. One is everything you had to say about your personal experience here is really relevant and additive to the episode itself. And then second, I think you're modeling something. And this goes back to the conversation we were having earlier about social fitness, social connection, the importance of community. Like, sometimes you just have to take a risk and it feels awkward. But I. In the end, I think it's often, as you said earlier, awkward, but good. It can, you know, it can go pear shape, too. That's the. That's the nature of risk. But in this case, I think you, you know, from my perspective at least, you took a risk and it's paying off. So thank you for doing that. And, you know, my best to your partner.

Eleanor Vasily (93:50)

Thank you so much. I really appreciate.

Dan Harris (93:55)

Thanks again to Emma and finally, thank you to everybody who worked so hard on this show. Our producers are Tara Anderson, Caroline Keenan and Eleanor Vasily. Our recording and engineering is handled by the great folks over at Pod People. Lauren Smith is our managing producer, Marissa Schneiderman is our senior producer, DJ Cashmere is our executive producer and Nick Thorburn of the band Islands wrote our theme Foreign this episode is brought to you by Progressive Insurance Fiscally responsible financial geniuses, Monetary magicians. These are things people say about drivers who switch their car insurance to Progressive and save hundreds. Visit progressive.com to see if you could save Progressive Casualty Insurance Company and affiliates. Potential save savings will vary. Not available in all states or situations.

Eleanor Vasily (94:49)

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