Change Your Brain Every Day - Emma Heming Willis on Battling Grief, Caregiving & Finding Joy

Episode Date: September 9, 2025

When Emma Heming Willis’ husband, actor Bruce Willis, was diagnosed with frontotemporal dementia, she felt like her world has fallen apart. In this heartfelt conversation with Dr. Daniel Amen and Tana Amen, Emma opens up about the hidden grief of ambiguous loss, the weight of caregiving, and how she’s turning pain into purpose through her advocacy and new book The Unexpected Journey. With raw honesty and hard-won wisdom, she shares how she found strength, community, and resilience while holding onto love in the midst of heartbreaking change. Whether you’re a caregiver, grieving, or walking alongside someone you love through illness, this episode will remind you that you’re not alone—and that hope can be found even in the hardest places.   Emma's new book, The Unexpected Journey: https://www.amazon.com/Unexpected-Journey-Strength-Yourself-Caregiving/dp/0593833945  

You fell in love with Bruce when he was one way and now frontal temporal lobe dementia, which steals the front part of your brain, but he's still relatively physically healthy. Yeah, I mean, he is physically healthy. It's just his brain that is failing him. Emma Heming Willis is a mother, stepmother, wife, advocate, and the co-founder of Make Time Wellness. After her husband, Bruce Willis's dementia diagnosis, she became a passionate voice for care, and families navigating neurodegenerative disease. In her first book, she shares her caregiving story. Alzheimer's, any type of neurodegenerative disease is terrible.

But I had always heard that FTD was like the worst of the worst. And walking in that day, that was not what I thought that I would hear. But I did. It was like I was free falling. I remember like buzzing in my ear. And I remember leaving that office with nothing. No hope, no roadmap, just to check back in in a couple of months. Like, that's it. We're just leaving.

So what advice would you give someone who just received a similar life-changing diagnosis? You know, for me, it was about every day you are making your brain better or you are making it worse. Stay with us to learn how you can change your brain for the better every day. This podcast is brought to you by the Change Your Brain Foundation, dedicated to, ending the concept of mental illness by creating a revolution in brain health. Go to change your brain.org to learn how you can support our mission. We are so excited today for this podcast is going to be very important. With us is our friend Emma Hemingwell.

who's a mother, stepmother, wife, advocate, co-founder of Make Time Wellness, a brand devoted to women's brain help. After her husband, Bruce Willis, was diagnosed with frontal temporal lobe dementia, she became a passionate voice for care partners and families navigating neurodegenerative disease. Through her storytelling and advocacy, Emma hopes to help help. others feel less alone on the caregiving journey. This is her first book. The name of her book to be released, September 9th, The Unexpected Journey, Finding, Strength, Hope, and yourself on the Caregiving Path. Emma was on our podcast before. Yes, I was. It's just so great to see you. Thank you so much. Thank you. Thanks for having me. And it's nice to meet you, Tana.

Absolutely, you too. I've been following your journey. as well with your mother, and I'm so sorry, and your grief. Grief is so hard. It's so hard. And a book on caregiving is so important. As a nurse, that's one of the things I think I saw that was the hardest, was caregivers and families just struggle so much when something tragic happens in a family. It affects everybody. Yeah, I mean, that diagnosis, even of dementia is really a family disease. It really is. Yeah, no question about that. And, you know, when Tana's mom got diagnosed with stage four lung cancer. I mean, it came out at stage four lung cancer,

which was just shocking, and then she died six weeks later. The grief was awful. But with dementia, the grief doesn't stop. I mean, it really doesn't stop when you lose your mom. But here, you know, you fell in love with Bruce when he was one way. And now frontal temporal lobe dementia, which steals the front part of your brain, but he's still relatively physically healthy.

Yeah, I mean, he is physically healthy. It's just his brain that is failing him. Yeah, I mean, the grief is, you know, it's that idea of like that ambiguous loss. He is physically here, but maybe, mentally not. And, you know, I think when it comes to this kind of grief, I've been able to settle into it. You know, I think for you, Tana, it was something that just happened, everything happened so quickly. And I've had time to be able to feel the grief, be in the grief, grow with the grief.

but the beautiful thing is that he is still here and and we have time so you you feel like you really started the grieving process like even just going through the process now while he's still with you while he's still going through this you're sort of grieving what could have been now and I think there's a lot to be said for being able to start that grieving process I don't think it's ever going to be easy I think one of the things I said one of I was going through my own grief, because all grief is different, it's a relationship. And you're either going to have a good relationship with grief or you're going to have a bad relationship with grief. But you're going to have a relationship with grief.

Everyone is going to have a relationship with grief. And I learned that. And I don't think I saw it that way before. No. And I don't think I did either until you're just sort of all of a sudden swept up in it. And what are you going to do? Fight it? I mean, there's been so many things that I think I have fought during this disease where at some point you just have to, like, put your hands up and not give in, but, you know, decide to accept what is. Does he still do certain things or have certain habits that catch you off guard and remind you of when you first met him? A hundred percent, you know, there'll be times with that twinkle and the smirk and the laugh.

And, you know, it brings me back where all of a sudden, we're back. And as quickly as it comes, you know, it, it goes as well. So it's hard. It is, it is not an easy diagnosis. But, you know, I've been able to find my community and I've been able to surround myself with people who understand what this looks like. That has been so key for me is to really be able to find others that understand the process and the grief. How did you do that? Well, I mean, in the beginning, I was very isolated, and I think I hear this a lot from caregivers.

It's so easy to want to isolate, and that's what I did for so long, because I was so nervous about things. If I talked about it to anyone, I was nervous about anything getting out. Well, you're so public. And I think for people who live in the limelight and men are like so public, it's tricky. So, yes, very tricky. So I wanted to make sure that, you know, I didn't know what it was, what it could be. I never, my wildest dreams thought it was some type of young onset dementia.

I didn't even know that was a thing. I didn't. So over time, I was able to. connect with other people. And I did that once Bruce was diagnosed with FTT. For me, it was connecting with the AFTD, which is the association for frontotemporal degeneration. They were able to connect me with another family in a similar scenario where her husband was diagnosed when he was 37 and they had a very young child like Bruce and I we have two young daughters and that is was like my first time with meeting someone being able to talk through just what was happening and um just to see how

she was doing it how she was navigating it so that was how I started to find my community and from there, you know, I started to get more involved in advocacy. And because of that, I was able to meet more people. And that has been a lifeline for me. Being able to connect with other people has been a lifeline. It's so easy for me to want to isolate and not be forthcoming. But I think that it's, that almost killed me. It's, you know, where it's, the human state is just so fragile and so frail. And I think as much as you're in the public eye, and that's got to be so painful to let or to even know what you should say or what you shouldn't say. And, you know, it's very uncomfortable. I can only imagine how helpful it's been to so many people who actually

see you going through it once you were finally able to do that. It's probably just been very helpful to so many women that you're trying to, your caregivers that you're trying to be an example for. but I can't imagine before you were able to do that, the fear you must have felt before you knew what it was. Oh, it was pure fear. I was in such fear. I didn't know what was happening. I didn't know if I could go to his doctor. I didn't know if you were allowed to do that. You know, and you just start figuring things out as you go one day at a time. But yeah, I mean, I again, now have a really beautiful community. And it's been so, that's been really, again, like just a lifeline for me to connect with others. So when did you foresee symptoms? And what were they that caused you

to go, something's wrong? You know, for me, it's very gray. It's very gray of when Bruce's disease stepped in and where he started to exit. I don't really know. And I hear that from a lot of caregivers that it's so hard for them to really understand when those symptoms started coming in. So for Bruce, he was diagnosed with primary progressive aphasia, PPA, which is a subtype of FTT. So for him, it's language communication. So what I had noticed was like his stutter, that he used to have as a child into his teens. And when he went into college, had a severe stutter. And I started noticing it, but it came back at times.

But he's always kind of managed his stutter, but I really started noticing that that started coming back again. So I mean, those were the early symptoms. I mean, there's different subtypes of FTT. You have PPA, you have the behavior. variant. There's also a subtype that can affect movement. So for Bruce, it was communication. Was, I assume he was fairly frightened when this first started, or did he not, was he not quite as aware of it as you were? Not quite as aware. Okay. Thank God. I'm really happy that he wasn't.

You know, I think that would have hurt me more to know that he was upset and scared. It was just me. Just me. So when you think of frontal, temporal lobe dementia, it means frontal lobes are deteriorating for a variety of reasons. And the temporal lobes. And so expressive language is left for most people, they're right-handed, left frontal lobe. It's an area called Broca's area. and when it starts to deteriorate, you can't get words out,

like you normally would get words out. And that can happen from a head injury or stroke or FTV. The behavioral variant is more globally their frontal lobes. I always say the front part of our brain is our break. It stops us from saying things we shouldn't say or doing things we shouldn't do. And when it deteriorates, all of a sudden spouses in particular are furious at their partner because it's like, well, why didn't you stop from saying that or doing that?

Yeah. I've heard with the behavioral variant, you know, people become very inappropriate. But it's, yeah, as a spouse, I mean, you don't know what's happening. you think it's a choice that they are making, but in actuality, it's not. It's their brain deteriorating. And this disease gets misdiagnosed all the time as bipolar, you know, depression, but it's rarely comes back as FTD. You describe the moment of his diagnosis, feeling like the ground disappeared under you. So what advice would you give someone who just.

received a similar life-changing diagnosis. Yeah, I mean, I think when you're walking into that office, you know that's the day that you're receiving a diagnosis, and you can see already that there is something different that is happening to your person. So for me, I just remember hearing it, and I just couldn't believe what I was hearing. That was, FTT was, you know, Alzheimer's, any type of neurodegenerative disease is terrible. but I had always heard that FTD was like the worst of the worst. And walking in that day, that was not what I thought that I would hear.

But I did. And I just remember it was like the carpet had been pulled from underneath me. It was like I was free falling. I remember like buzzing in my ear. And I remember leaving that office with nothing. No hope, no roadmap, just to check back in. in a couple of months. And I was like, what? Like, that's it. We're just, we're, we're just leaving. So it was a neurologist that gave them that diagnosis? Yeah. And there was no plan

to slow it down. How do you slow down a progressive disease? I mean, there was, that's the thing. There is no treatment. There's obviously no cure, which is, you know, one of the reasons why I've been wanting to be such an advocate to be able to talk about this disease because I would like to have another family when they go in there one day to be able to say, you know, that neurologist will say, you know, here's the FTD diagnosis, but, you know, here is a treatment, here is something that we can do, but there really is not anything. You can manage the symptoms, but there is, there is no treatment to slow it down. Well, I'd push on that a bit because you can clearly accelerate it, right, by, you know,

You can feed him bad food, and that'll make it go faster, which means if you feed him really great, it'll make it go slower because it's still a brain that changes every day. You can sleep deprive him, and it'll go faster. Sure. I have this acronym, I don't know if we talked about it before, called Bright Pines. Oh, no. I thought it was the ants. that you know every day we're making things better or worse including dementia and when I've worked

in elder care facilities it's like you're really going to let them choose what they eat because what they choose are all the things that accelerate trouble sure right I mean listen prevention is better than cure but not a lot of people know how to care for their brains Not a lot of people know how to care for their ransom. Most people don't think about it until there's big trouble. How did you shift mentally from separating Bruce from his disease? I think perceiving that diagnosis was a blessing and a curse, but I was so, at least I knew what it was. And at least I knew that what was happening to him was no fault of his own.

It was because his brain was being dismantled. And being able to see that, then, and understanding, I was able to meet him with so much more compassion and patience and understanding. You know, I hear, I've heard from other care partners where, you know, they don't have a diagnosis yet. They, oh, it's just, it's a type of dementia. But, okay, but like, what is it? Like, I think that is what I always am so confused about. That why is it?

Like, you know that it's a dementia, but why is it so hard sometimes for a neurologist to be able to put a label on it? Because I think that is so helpful for a caregiver so that they know, so that they know, you know, what type of dementia it is and how they can support their loved one. I think it's so important to be able to land on a diagnosis

so that you know how to meet them where they are at. I mean, can you tell me why it's so hard to get to a diagnosis for dementia? Well, we image people. And the study I do, SPAC, there's a pattern for Alzheimer's disease. There's a pattern for frontal temporal lobe dementia. There's a pattern for vascular dementia. And so if you're not doing functional imaging, it's hard. And so many people get a diagnosis of dementia and no one's really ever functionally imaged their right.

So I don't find it hard to give people a diagnosis. But for me, I'm always like, we can make it better. What do we do to make it better? Yeah. And sometimes you can't, right? But at least you're going after all the risk factors. You talked a lot about, I mean, we talk a lot about pain to purpose. Clearly, that's what you're doing.

And you talk a lot about your community. But I'm just curious, what do you do on a personal level? Do you have a mantra? Do you have a prayer? Do you do? What is it that you do that has helped you somehow, ground yourself or find peace in this process. Again, I go back to community because that's so important because I was doing the complete opposite of that, of isolating. It's been so important

for me to find others to be able to talk. I found a therapist. That was also really important. For me, it was just doing the opposite of what I was doing before. You know, like, don't isolate, talk, you know, be open about what's happening, be able to share. Don't always put walls and boundaries and things up. It's really important to talk about what it is that I am going through. But again, like when we had gotten that diagnosis, I wasn't going to allow it to take our whole family out. You know, it was a choice that I made where, you know, this is a terrible thing that is happening, but I won't, you know, we have two young children. I'm not going to make this whole thing terrible. I'm going to find a way to reframe this. Well, that's amazing. You have grief

and sadness, and I can have a full life and be able to make a beautiful life for our children and give Bruce quality of life. I needed to find that balance. And because I'm choosing to, as Bruce would say, live it up as well as I can, it doesn't take away from the love or the care that we give to Bruce. You know, we often say kids don't do what you tell them to do. They do what you do. They don't do what you say.

They do what you do. And you're just doing that is such a great example and teaching your girls how to, not just how to love, but how to rally. Like how to be an example of support and love and not falling apart because we all hit crisis. Bruce would not want our children

to be clouded by his FTT diagnosis. Not at all. He would want us to be able to live to get out there and make sure that they are living their best, fullest life. And that is what I am trying to do for that, to honor him.

So how do you manage that with Karen, for him, caring for the kids, and then caring for yourself. One of the things you talk about in the book is putting your oxygen mask on first. Yeah, I needed to do that. I rallied support. You know, I think what people don't understand is that caring for someone with dementia actually takes a team of people. Oh, yeah. And so many people have to do this alone. And we, we, are fortunate and in a position where I can we can have formal caregiving. It wouldn't be able to be here today talking with you guys if I didn't. You know, I've been on the other side of that where I didn't have support because I didn't know I was allowed to ask for it. I really

thought that I almost feel guilty. Oh, for sure. I felt very guilty. Like I wasn't being the best wife that I could be, not doing my part. I'm supposed, you know, a society. it's like, which was drilled into my head, it's like, I'm the one and only me and no one else. So I really thought that. This is only going to be me. I can't ask for support. But, you know, that is not. So this is a really important point because I remember when my mom was sick and I was a nurse and I'm married to a doctor.

We moved her into my house and I just think so many people, sorry, who are watching this that are going through struggles like this. caregiving is hard and she was you know stage four long cancer and she was very acute she was very sick and I'm like I'm a nurse I can handle this and I moved her into my house and it took what three days before I was like I don't even know like how do people do this we have resources we have knowledge we have medical skill and I was completely drowning and overwhelmed and you walked in and you're like we're going to hire someone and I'm like what do people do who can't like I just it's we just were completely overwhelmed even with help I was overwhelmed so I just I think it's a really important point to anybody listening is that it's real I mean you really have to

rally and you have to get anyone you can to help any family member any and you can't feel guilty for asking for help yeah it's really important to rally your family and friends and and one of the things that you know all the experts and specialists that I interviewed for this book, one of the things that they said was that people don't ask for help soon enough. No. That it's never too early to start asking for help, to really start putting together your team of family and friends to come together. And that, you know, when people ask, like, oh, is there anything that I can do?

Say yes. You have to say yes. You have to have a list. That's so hard for us as good girls. Of course, you know. But, you know, what you do is that you, as a caregiver, you make a list. It takes a little bit of work, but it's important to have that list. Like, think about all the things that you do in a day or in a week or in that month.

You know, getting your car washed, getting groceries, take my kids to the movies. You know, if you're going through the college process, you know, can you help them with the college? Whatever it is, just have a list so that when someone says, is there anything that I can do to help, you don't just say, oh, no, it's okay. I'm okay. that's, you know, that's what I did for so long. It doesn't work. You know, it really doesn't work. It's important to have that list and say, actually, yes, you know, is there like, and then you'll see who is serious and who isn't. That's right. And it's just so important because everybody will say it, but not everybody will do it. That's right. And then you'll find your tribe. And that's where you focus

your energy. But when the masks come down, you have to put yours on first. And too often people are like caring for everybody else and then they burned out. Did you know 15% of caregivers have dementia themselves? I did know that. Yeah. Yeah. And there's a high percentage of caregivers that pass before their loved ones. Because of the chronic stress, which is just so bad for your immune system. Chronic stress and then also just not making your own medical appointments. Oh, it was six weeks and I felt like I went through a war. And I'm sure you've had your times of feeling like you went through. It's like a war zone.

And you just, I remember telling myself it's okay because eventually I'll take care of myself again. At the end of that six weeks, you remember I had my blood drawn. I'm like, I know I'm not healthy. I was such a mess. In six weeks. Within six weeks. Sure. It was a disaster.

Can you imagine? Like, well, you can't. People who are going through this chronically. Like, it's just so hard and you have to have a plan and you have to have some structure that you put into place because you're going to get sick. And like you said, if you don't put your oxygen mask on first, how are you going to be able to take care of anyone else? It doesn't make any sense. Want better focus, energy and sleep. Take care of your brain with Brain MD.

Get 20% off at BrainMD with Code Podcast 20. You mentioned in the book feeling triggered by unsolicited advice and judgment from others. How do you now set healthy boundaries around this caregiving journey? Yeah, I mean, I think caregiving, they were caregivers, everyone is so opinionated. You know, everyone has an opinion of what you should be doing, but they don't have the experience to back it up. You know, if they are not participating in the day-to-day care, they do not have a say. That is what I really truly believe. But what you can say is actually what would be really helpful is, here's my list.

Here's my list of things that you can do to help. That would be very helpful and supportive to me. It's just about flipping it, flipping the script, setting those boundaries. Were there any really unexpected emotions that you ended up? feeling through this, did you, that just surprised you? Oh, yeah. I mean, anger, resentment. You know, of course there's the sadness and the grief. I didn't realize that I would have just a whole array of emotions. And I felt like such a bad person because I had anger and resentment in me, you know? I relate to that. But that's why it was so important for me to be able to talk

these feelings out. And the therapist that I was working with had worked with someone else in a similar scenario. And, you know, she reassured me that, like, what you're feeling, Emma is not unique. You're not a bad person because you are having these feelings and emotions, like you are human. This is a human experience that you are having. So I just thought that was really important to talk about that in the book as well, that, you know, you will have. an array of emotions, but what's important is how you process them. It's important that you get it out and that you talk about it. And sooner than later. And sooner than later. And that's why it's important to find your community so that, you know, when you do talk about anger and resentment,

and if you're talking to someone who doesn't understand what you're going through, they will think like, ooh, like, that's weird. Well, and you pointed something out because when you feel resentment and anger about someone who's sick or going through a really, you know, difficult medical diagnosis, you feel guilty. So that's, you have to work on that as well because you have to, it's very confusing. It's a very confusing time. Yeah. And, you know, again, that's why getting to a diagnosis is so important and understanding that because I'm not mad at Bruce. Right. I'm angry at him. I'm really pissed off at his disease. And that's how I've learned to separate him from the disease. Um, and being able to label it and understand that. You know,

It's just, I am angry and resentful. He's sad as disease. Not at bruises. It's no fault of his own. But I just think that's important for that. You know, caregivers know that they can, they will have all of these feelings. Good, bad, and ugly. Yeah.

It's okay. And some people are going to have resentment and anger towards the person if they didn't have, if they had unresolved issues. And that's okay. It's just work through them sooner than later because that guilt can just eat you. What I tell my children, it's better out than in. Yep. It's so important just to process, get it out.

Don't allow it to stay inside, which is what I did. And it just festeres. And that is no good for anyone. So if you can't get a therapist, find someone, find someone that you can speak to that you know will not be met with judgment or criticism. And, you know, you can find that by support group. Or, you know, when you go to your neurologist office, you can ask them, Is there another family that you think that I can connect with, that they would be willing to connect with me?

You know, there are ways to find people to talk to who understand what you're going through, who will not judge you for having the feelings that you're, that you have. And you have found, is it the association for frontal temporal obe dementia helpful? Yeah, the AFTD, the association for frontotemporal degeneration, they have been a lifeline for me. I think it's important that when you get a specific diagnosis, contact that association, that organization so that you can get embedded into what those support groups are. There's a hotline usually. You know, there is a whole community that you can embed yourself in that will really be supportive

and helpful to you. And that has been the AFTD for me. Well, and that's really a spiritual component. this, turning pain into purpose. And you always say pain shared is pain divided? Oh, I love that. I remember you saying that. Yeah. So finding the right experts really helpful for you. For someone just starting out, what are the most important traits? Finding an expert. for you know for me it was about compassion kindness you know i really wanted to that that's where i sort of find my comfort is you know finding people that understand not the neurologist that

diagnosed us i was not that was not the vibe at all um so if i was able to sort of put this team around us um it was like one door opened up another door you know i wasn't sure exactly who I needed, what I needed, but I knew I needed to support Bruce. I needed to support our children. I needed to support myself. And what I knew early on was that I wanted to connect with a dementia care specialist. And I did a Google search and came across a woman named Tepa Snow, who is an expert in my book. And she really taught me about, like, just fine-tuning my skills. And she's so knowledgeable and just so loving and compassionate. And I was able to help her. Sorry, she was able to, TIPA was able to help me again, just like sharpen these

caregiving tools. And then from speaking with her, she opened the door to someone else. And that was kind of how I was able to assemble this team and be able to bring them into this book because not everyone has the time, the energy, the resources to be able to assemble this kind of team. And I knew once I had all of this information, that is how the unexpected journey was born. I was able to compile it all into a book to be able to share it with someone else so that when they do get a diagnosis, my hope is that the neurologist says, here's the unexpected journey. There actually is a roadmap. There actually is things that you can do to. support yourself on this journey.

So I have a question, hopefully both of you can put input into this. I've seen as a nurse who worked with kids with CP and so families get, they're pretty worn out and other. Cerebral palsy. Oh, I was going to say what is C.P. C.P. C.P. C.P.

And other chronic long-term issues where it just really creates a lot of caregiver burnout. out. But I've seen what's really interesting to me, and in my case where I worked, it really wasn't a matter of having a lot of resources because people didn't have them. But I noticed that some families, they just rose and thrived almost no matter what, like even in terrible circumstances. And others, I would see the caregivers or the parents just deteriorate and just go into this deep, dark black hole and they couldn't come out of it and they were just constantly mourning what they lost as opposed to like figuring out a new way to thrive within that and grow within it. What makes the difference between that post-traumatic stress

and that post-traumatic growth within that community within those really chronic, difficult communities? I mean, again, like for me, it was like a choice. I made a conscious decision and a choice. I could either choose to do exactly that, fall into a corner. That's what I want to do most days, you know? I just do. But I don't have the luxury of that.

It's important for me. I wasn't going to allow again for it. It was a choice. It's a choice. I don't know what else to say. I often think it's, you know, I always talk about brain reserve, and it's the brain and the mindset you bring into an accident

that determines how you come out of the accident. Do you think modeling has much to do with it? Like you're being a great model for your daughters right now. What do you think in your background gives you the strength to manage the staying in and down? My mom was a single parent, you know? I mean, she was working three jobs in order to keep us afloat. So I was modeled strength, resiliency.

You know, that is what I know. Grit. Grit. And you get in it and you take care of it and you just put your big girl panties on and get on with it. And I think it has a lot to do with what I saw. And I know that, hence why, I want to model that for my children. I love that every day. You're modeling health or you're modeling illness with your behavior.

You describe your daughter's Mabel and Evelyn as a part of the journey too. What have been some key lessons in parenting while caregiving that you wish you knew earlier? Well, early on, when I didn't know it was okay to ask for support, I didn't know it was okay to ask for help, I didn't know that I should be putting my oxygen mask on first. I mean, you do know that as a parent, but you don't realize that it also applies to caregiving. I, again, it's just realizing that I was feeling like I was failing. I wasn't being the best mother I could be, the best caregiver I could be, the best daughter, friend. You know, it was all just unraveling. Um, so again, that's not what Bruce would want. I went back to that. Like, what would

he want? He would want me to care for myself so that I can care for our children. Um, and I just was, again, made of that choice to just turn it around. Um, and listen, I, I don't do it perfectly. I am not perfect. You know, there are days that I am, you know, sad, and they see that. But it's okay. It's okay for them to see that. You know, it's just really about having that balance and not having this disease just cloud

everything in their lives. Do you think it's harder being in the public? Well, I know it's harder being in the public eye, but how do you manage? that being in the public eye when there's probably just days you want to just ugly cry and not be nice to everybody that you come across and have to be polite and smile because you know people are watching you how do you manage that um i mean i don't really have i don't know how in the public eye i am um you know i'm just going into rooms that are very sort of FTD. I'm going into FTD rooms, you know, and just trying to be there in my community and just,

it doesn't matter who, you know, it just, this diagnosis just levels the playing field. You know, it doesn't matter that my husband is Bruce Willis. It's just, you know, I'm able to connect with caregiver to caregiver. You know, I think it's been important for me to also write this book to be able to take back our narrative. You know, there's always, there's always something out there. There's always something out there, you know, and I just want to be able to also just set the record straight of what is and what is not. What do you hope for this book?

I hope it helps another caregiver. I hope that they will feel like they are not alone, that they're actually. is things that they can do and put into place that will support them, which will only support their person, their loved one. I hope this book gets into the hands of other friends and family members so that they will learn how to show up and support the caregiver in their life. And, you know, just like change this narrative around care. I also think it's really important that we talk about care, understand the kind of care that we would want in the future. Because at some point, everyone will need care or you will need to give care to someone.

I know that sounds really dark and sad. It's just the truth. It is the truth, you know, in one way or another. And I didn't know that early on. I was very blindsided by this whole. How old were you when Bruce got this diagnosis? He was diagnosed in 2022. I'm 49 now.

How long do you suspect there was a problem before you got the diagnosis? Again, it's hard. It's just hard to. It happens decades before you get the diagnosis. And when you look back, you can begin to see evidence of it. And we know with Alzheimer's, for example, I diagnosed someone when she was 59. She probably had negative changes in her brain in her 20s. And, you know, we should all be on a dementia prevention program.

And that's when you and I first met, you go, well, I want to look at my brain and make sure, and you have a beautiful brain. Oh, okay. That's what I told you. Do you think it's still beautiful? I have to look. I have to look. But, you know, I mean, high levels. of cortisol, stressful, are definitely not great for your brain, which is why you have to put

your mask on first, like you said, right? But it happens early. And I love our six children, but I never want to have to live with any of them. And if that's true, that means every day I need to be on a dementia prevention program. And there are clear things we do that accelerate our risk and things that decelerate our risk. And pain to purpose decelerates your risk. Because what it does is it gives you purpose and it connects you to other people.

And that helps, right? isolation. And now, according to the surgeon general, 58% of the population reports being lonely. And that is equivalent to smoking 15 cigarettes a day. And so not being lonely is just so important to connect support groups, church, whatever you can do. That'll be helpful. Is there anything not in the book that you can think of that you want to share with people, that advice you would give them or feelings you've had? Well, I left everything in that book. I really did. You just left I really just, you know, it was writing the book was just one of the most healing things. You know, it was so cathartic. It was such a beautiful experience. I mean, it was hard, but I really enjoyed

the process of it, the promotion side of it, this side, being getting out and talking about it. It's hard. It's heavy. You know, it's heavy. But, you know, journaling, writing, really being able to just share has just, you know, it just unburdens you. That I've enjoyed. I'm so grateful that I've had the opportunity to be able to write this book. And I really do hope that it helps someone else. That is the hope for that book, that it gets in the hands of other caregivers, friends, family, so that they understand that it's important to care for ourselves and that they shouldn't feel guilty about that.

There's so much guilt around that. But you can't care for someone properly if you are not caring for yourself. one of my patients once I just loved her so much her daughter died of bone cancer and she just went to bed and did all the wrong things and on the two-year anniversary of her daughter's death she was going to kill herself and she saw me on public television and she's like I'm going to get his book and if it's a bad book I'm going to kill myself tomorrow she told me that story but she just did what I wanted her to do and she lost 24 pounds and she was running and she stopped drinking and she said I want you to tell your patience

never let grief be your excuse to hurt yourself I love that you said something that resonated with me when you said this isn't what Bruce would want when my mom passed away. I was having a really hard time because I just, I was sort of stuck in that sadness and, you know, the crying, and it was just hard. And then I realized something. My, one of my biggest fears would be for something to happen to me and my daughter not to thrive or to get stuck in grief. I would never want that. And when I realized that, it was like an aha moment. And I'm like, that was my mom's biggest fear. So why would I make that true for her? And it was somehow, that revelation sort of like caused me to start new daily habits. I'm like it is a habit and I had to

sort of discipline myself. But every day when I would start to go to that place, I'm like this would not, this would be the opposite of what my mother would want. And I just would discipline my mind to go to happy thoughts instead. And it took a while, but it worked. Yeah. And it's not about like toxic positivity. No, no, no. Right. You know, it's just it's really about just making a conscious choice and you know even if it's just like getting outside and having the sunshine on your face it's just about these like small little things that we can do right and you can still feel it i feel it's still i just don't wall in it i force myself to have habits and discipline sort of the way that i would want my daughter to to do it yeah um patty davis who is an expert in my book she talks about

you know being in anger sadness whatever that might be and allowing it to be to be be there for 30 minutes. Yeah. Like be in it for 30 minutes. Feel all the things. Get an angry, scream, stomp your feet, do all the things.

You have 30 minutes, though. And after that, get on with your day. You know, just to sit in that. I can't imagine what that would be like just to sit in that. It's just not healthy. It's not healthy. And if you are not healthy,

how are you caring for your person that you want to show up for? You know, that you want to be there for. I like that so much. Also, end every day with what went well today. Like as a practice, night I say a prayer. And then I start at the beginning of my day and I go hour by hour until I'm asleep, looking for what I liked about the day.

It's easy as caregivers to want to beat ourselves down. You know, you weren't patient today or you did this way. wrong or you, you know, it's just these negative thoughts, negative, negative, negative, but there are, you have to reframe, re-look at the day, exactly what you do. Well, take them captive, which is one of the verses in the New Testament is take each thought captive. Because, you know, I call them ants, automatic negative thoughts that steal your happiness. And you have to have a little anteater running around your head just cleaning that stuff up. And one thing that might be helpful, is so helpful for me. Every day, I win

or I learn. I never fail. I win or I learn. I had a great day. I had lots of lessons. Yeah. Yeah. And with caregivers, they have lots of lessons. So many lessons. And I've grown so much. I can't, you know, I look at it where I think, God, I'm like really proud of myself. I knew nothing about any of this. Nothing about dementia prior to becoming a caregiver. And I, you know, have grown and learned so much. And I'm so proud of that. Bruce would be so proud of that. So I sit in that and, you know, pat myself in the back. And of course, sometimes, yes, I beat myself up. I am human. But I really, learned, I've learned to balance that and to balance those negative thoughts that can be all

consuming. Because what is it? Well, whenever they come, write them down. I find that so helpful. Whenever you feel sad or mad or nervous or out of control, write down what you're thinking. And then just go, is that true? I mean, can I really know? Because when you write them down, you get them out of your head. Sometimes they just look absurd as soon as you write them down. I was like, oh, that was really stupid thought. I know I had this thought. My wife never listens to me. I wrote that down.

My wife never listens to me. And I'm like, well, that's not true. She's listens to me all the time. But if you don't question them, you believe them. And then you act as if they're true. And they can just devastate you. Yeah. Better out than in.

Just get them out. However, whatever that looks like, it's so important. to get it out, process it, and not just dwell in those feelings. So the unexpected journey out September 9th, congratulations. Thank you so much. It's a huge accomplishment. Thank you. Thank you. There's so much emotion that goes into writing a book, especially a book like this. I loved it so much. I would write 10 more. I don't know what that subject would be. I'm hoping the next one will be like a fun cookbook. You know, something fun, something joyous.

One book at a time. Thank you so much. Thank you. So great to see you again. Nice to see you guys. Thank you for having me. Whether you're a police officer, firefighter, EMT, therapist, or other personnel, you have to face high intensity, stressful situations on a regular basis.

In some cases, you have to make split-second life-or-death decision. The job can lead to critical incident stress, lack of focus, irritability, difficulty relating to others on the job, lack of motivation, excessive alcohol or drug use, and more. Hi, I'm Dr. Daniel Eamon. As a psychiatrist and brain health expert, I've worked with hundreds of first responders, and I've seen that all of these issues are related to brain health. problems brain dysfunction is the number one reason why first responders have trouble on the job and in life to perform at your best you need to be at your best this means you need to optimize

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You can get Emma's book on Amazon or anywhere great books are sold, The Unexpected Journey. Also, thank you for listening to the podcast or watching it. Subscribe, leave comment, question, or review. We'll be back. Thank you.