What To Do When Your Life Blows up | Emma Heming Willis

29:14Like, how do you create community? What thoughts do you have on that score? 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 Patty 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.

30:00And 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. More from Emma Hemming-Willis right after this.

30:56Hey, Chicagoland. Wayfair's Black Friday in July sale is coming to the Wayfair store. From July 23rd through 27th, you can score up to 80 % off everything home in person. like up to 80 % off area rugs, up to 60 % off outdoor furniture, and up to 60 % off mattresses. Take home the small stuff that day and get the big stuff shipped fast and free right to your door. Shop the sale July 23rd through 27th at the Wayfair store at Edens Plaza in Wilmette. Wayfair, every style, every home. Monday AI agents took over my work and I absolutely love it. Chasing deadlines, writing status reports, updating stakeholders.

31:35Agents handle the daily grind now. They live inside Monday.com, so they see the full picture. My work, my team, the whole company. And I don't have to worry about the data. It's safe, which means I'm free to focus on the big stuff, knowing everything runs smoothly in the background. It's completely shifted the way we work. Create your own AI agent in minutes on Monday.com. Another piece of advice in your book is to make time for yourself. Now, we touch on this a little bit, But very practically, given the demands of being a caregiver, not only to your husband, but to your children, how do you find that time?

32:12I 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 is kind of taking 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.

32:57So 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.

33:44And 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 and the trees just helps just ground me. It really helps ground me. 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. 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 and my husband.

34:36And 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.

35:21One 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 magic bullet being starting small. And that's exactly what you did. And it just makes it feel doable. 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.

36:00So 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, 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.

36:46So 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? 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.

37:27I 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. 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.

38:20So the honest truth is that the cost of care is incredibly high. People are often confined to make choices based on their finances, and that is a painful place to be in. I'm not an expert on this, but social services exist through Medicare and Medicaid. I'm not sure where things stand right now with all of that. I mean, it was already complicated before, and I'm 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's office 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.

39:07It really goes back to your community, your family, and your friends. 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. 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 care, 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.

39:58so 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 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 a 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.

40:59And 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. 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.

41:41What can I do to help? If there's anything you need, et cetera, Are there better words that we can utter to our friend or 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? I mean, I'm just looking at this on the don't list. 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.

42:21You 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 going to pick you up if you're available at 10 and we're going to 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. It's a balance, though, because you don't want to show up in a way that's intrusive. No. You can give them three options.

43:04Here 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 10 a.m., 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.

43:43Caregivers need support. They are unseen. They are unsupported. And they need help. What are the other don'ts? I don't like when people tell me, have you got this? I don't like that. I really hate that. Yeah, 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. 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.

44:26Yes, all of those are 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, well, have you tried this? Are you doing that? da da da da da it's like i've 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 a new drug for alzheimer's And I'm like, well, Bruce doesn't have Alzheimer's.

45:33He has FTD. Right. You know, it all comes from a place of love. But as a caregiver who has heard so many things, they think people are just putting their energy in the wrong in the wrong area. 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. 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 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.

46:41But 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. Yeah, saying yes is another form of self-care sometimes. Connection, right? 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.

47:29And, 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. 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. One of them is a kind of grief and it's an interesting grief because the person is 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 yeah uh 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.

48:22So you are grieving someone that is still alive, which is hard. You know, it's very hard to do that in real time. 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. 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.

49:09I 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 going to, 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 starting new. and with new different ideas for us. You also talk quite a bit about dealing with fear. What did you learn about dealing with fear? I'm a very fearful person. I'm very fear-based.

49:53So it's really interesting to me that 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. 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? Absolutely. So Kathleen, who is a huge fan of yours, actually, Dan. Oh, thanks. Yeah, she would always bring you up in a lot of our therapy sessions. You know, she does this thing that she has told me to do is that when I am experiencing fear, there's a couple things she's told me to do.

50:40But 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'm 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 it.

51:24Another 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.

52:15Be in the moment. You're driving your car. You're 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. 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. I wasn't either. But there's a ton of science to show that it's really good for you.

52:53It really helps. It can bring about some meaningful physiological and psychological 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 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, for myself. speak for myself, who really deals with such an amount of anxiety. And 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.

53:36And 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. Yeah, but at least you got a break. 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. 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. Yeah, thankfully, Bruce is not in pain, which I'm very grateful about.

54:17But 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, oh, 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're 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.

55:07But 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 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. 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. Shout out to Kathleen. More from Emma Hemming-Willis right after this.

56:12Hey, Chicagoland. Wayfair's Black Friday in July sale is coming to the Wayfair store. From July 23rd through 27th, you can score up to 80 % off everything home in person. Like up to 80 % off area rugs. up to 60 % off outdoor furniture, and up to 60 % off mattresses. Take home the small stuff that day and get the big stuff shipped fast and free right to your door. Shop the sale July 23rd through 27th at the Wayfair store at Edens Plaza in Wilmette. Wayfair, every style, every home. So we've just talked about a bunch of difficult emotions, grief, fear, empathic distress. All of that can add up to trauma.

56:53There 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 just referred to? 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 in, if it's anger, grief, whatever it is, for 30 minutes.

57:32And 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. It 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.

58:14And 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 typos, not typos, because 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 crumble 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.

58:56You know, I know a lot of people, 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. Okay, that actually brings me to the last big practical area I want 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 list in the book picks up on just what you were saying right there. And it's about turning pain into purpose.

59:33Yeah. Can you say a little bit more about that? 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 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.

1:00:37For 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 it's 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.

1:01:31Just 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. 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.

1:02:22Yeah. 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. There are some other really useful reframes in your book. One of them, I'm going 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 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.

1:03:16And 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. 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.

1:04:06Much more compassionate, much more patient, much more loving, much more accepting. Yeah. Yeah, it's one of the just to put a fine point on it, one of the reframes that you listen to 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 was not it was not on my radar.

1:04:41But of course, it's inevitable. And if you're going to try to optimize for stuff, this is the thing to optimize for, because, you know, 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 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.

1:05:20We should be building this muscle because it's good for you. 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.

1:05:57Yes. 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.

1:06:35I 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. Yeah, I mean, we're all so connected to our phones and walking around with our heads down. And, you know, I just make a 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.

1:07:20so I just even just that even just talking and going off track here 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? Yeah, I think my anxiousness sometimes just keeps me in my own way.

1:07:59And Bruce would always tell me, Emma, you got to get out of 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 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 needed it 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.

1:08:40It has really just opened up my world completely. I felt like I was walking around with blinders on. So 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. 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 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 and but when his early 20s he his mother got brain cancer and he cared for her right up until the end, did the hospice care himself.

1:09:45And 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. 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.

1:10:25There 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. 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 in 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-yay motherfucker and all that other stuff.

1:11:18And so I'm just curious, like, how's he doing now? 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. Well, apologies for asking a triggering question. 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.

1:12:01When 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? Yes, absolutely.

1:12:41with him. So I think he, to me, feels, I feel like very content, very present. And I would say, dare I say, happy. Well, sounds to me like the way he's handling this is probably the most badass role he's ever taken on. He's handling it like a badass that he is, 100%. 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?

1:13:30Sure. 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 emahemmingwillis.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'm 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.

1:14:23And that's what I got. You got a lot. Emma Heming-Willis, thank you. Thank you so much, Dan. Thank you. I appreciate it.

1:14:37So thanks again to Emma Hemming-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. Hi, Dan. Thanks for doing this. 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.

1:15:21I kind of thought maybe I was in trouble when that Slack came in. But anyway, you said you wanted to talk to me. That message is coming later. Yeah, exactly. So what did you want to talk to me about? 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 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 bruises, which was something called primary progressive aphasia.

1:16:06But 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. And so you want to tell everybody what you told me when we talked? 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 outwards 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.

1:16:50He 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.

1:17:39He 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 you know me talking about him and me sharing about us in that capacity i imagine since were having this conversation, he was cool with it?

1:18:29He felt good about it. You know, for the longest time, not having a diagnosis and not knowing what was wrong was just 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 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. So he's a lot younger than Bruce, if memory serves.

1:19:15Am I right about that? He is. My partner is 51 now, so he was 49 when he was diagnosed. And do you have a sense of what the prognosis is? that's a hard question you know when i was leaving the doctor's office when we were first told the news my partner oh he had to go to work afterwards he wasn't expecting to get a diagnosis that day 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 going to do?

1:19:52You're going to 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. And so he can still work and you don't find yourself in a caregiving scenario as intense as Emma Hemming-Willis. Absolutely not. But at the same time, I definitely identify with a lot of or everything that she said.

1:20:42I think I've taken on this role of helping my partner communicate. And that's, you know, helping write his emails, making all the phone 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 so you you said earlier that you're a really private person how how is this how's this going for you this conversation it feels both awkward and good i really didn't want to make the interview or the episode or any of it about me, right?

1:21:39Because it's not even about me. It's about, it's, it's really about my partner, you know, and 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. I actually want to go back to awkward, but good, which you kind of backpedaled on, but I, And 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 of these cliches around community and social connection is the key to our health, and I'm the kind of guy who gets up and says that shit in front of audiences, but it can be kind of annoying because we've heard it so many times.

1:22:22And 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 is as Renee Brown would say, vulnerable. And yet I'm not surprised to hear that it feels good, too. 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.

1:23:06And, you know, being able to have a contributing voice, it feels necessary and it feels meaningful. Mm hmm. 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 that interview with Emma. One of 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.

1:23:48and 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 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.

1:24:36And so I feel like that for me was one of the biggest takeaways of both her book and the interview. Yeah, that lands. Anything else that struck you powerfully? 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 on to 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?

1:25:15And 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 asked for it 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.

1:26:07I 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 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're 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.

1:26:47And 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? 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. Oh, I agree with that too. And that's why I kind of make the argument with some sheepishness.

1:27:28I 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. And I mean, I think anything that gets people more likely to talk about these things, the better.

1:28:08And if that's the framing that helps, then, you know, I'm sold on it. 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 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 includes us as well.

1:28:49And 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. 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.

1:29:28And then second, Again, 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 in the end, I think it's often, as you said earlier, awkward, but good. It can go pear-shaped too. 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. Thank you so much. I really appreciate that.

1:30:04Thanks 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 Vasili. 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 Kashmir is our executive producer. And Nick Thorburn of the band Islands wrote our theme.

1:30:56We'll be right back. 23rd through 27th at the Wayfair store at Eden's Plaza in Wilmette. Wayfair, every style, every home. A colossal monster tearing through the streets. A city in ruins. Nowhere to hide. Until he finds a way out behind the wheel of the all-electric Toyota CHR. Instant torque, getaway handling, and immeasurable wow factor. John Cho stars in Escape. experience the thrill test drive toyota's new all-electric family at your local dealer toyota let's go places