Caring for Yourself While Caring for a Parent with Dementia with Corey Esannason

Hello and welcome back to the Yoga Magic Podcast. I'm your host, Ashley Sondergaard. Thanks so much for being here, everyone. I'm so grateful you're tuning into the show. I'm a longtime yoga teacher, a certified health coach, a lover of all things self-care, astrology, and this show is really here to bring you ideas for ways to take care of yourself. Today, we're getting into an area that it's hard. It's sad to talk about, but unfortunately, it's a reality for some listeners out there, and that's caring for a parent with dementia. I hear from many of you that you are interested in ideas for self-care for caregivers, whether that be caring for children, caring for loved ones, caring for parents. You're the ones who need this more than ever, and in reality, it can be very hard to actually do that, to actually listen to your own needs and fulfill your needs. So I'm going to talk to you today about how to take care of yourself, and I'm going to talk to you about how to take care of yourself, and I'm going to talk to you about how to take care of yourself, and I'm going to talk to you about how to take care of them while you're taking care of someone else. So I was connected with yoga teacher, Kori Asanason, to share her personal experience. Kori's mother was diagnosed with FTD, which is the frontal temporal degeneration, a form of early onset dementia, when she was just starting out building her own family. And she learned to navigate this really difficult diagnosis for her family through her own trial and error. And what really struck me and why I'm so excited to share her with you today was that she was diagnosed with FTD, and she was diagnosed with FTD. She was able to help others through this process, to teach other caregivers the importance and the priority of their own well-being and simple tools to do that. So I hope that you, you know, you never have to be in this position, but if you do, perhaps, you know, you're in it right now, please know that you're not alone and that there are really simple tools to take a moment and take care of yourself so that you can take care of your loved ones as well. It happens to be FTD awareness week right now. So if you're moved by the news, you're going to be able to learn more about their organization. Please check out the show notes. Thanks to Corey for sharing her story and these really helpful tips. And of course, for spreading the joy of yoga as a yoga teacher. Friends, if you enjoyed this show, this episode, please consider sharing it with someone who could benefit. Maybe, you know, a friend who's in this position and could use a couple tips. If you want to follow us along on Instagram, you can find us at yoga magic podcast, and I'm at ashley.sondergaard. As always, thanks so much for being here, everyone. Let's get to our chat with Corey Isanason. Welcome, Corey. Thanks for being on the yoga magic podcast. I'm really excited to chat with you today. Awesome. I'm excited to be here. Thank you so much for your interest in having me on. Yeah, I'm really excited. So Corey, we were brought together in the world. I think for a lot of reasons. We're both yoga teachers. We're both mamas. We obviously are out there doing the work to make the world a little bit more mindful. And yet you have a really unique experience that I was so interested in. And I'm so excited to be here. So Corey, thanks for being on the yoga magic podcast. I'm really interested in talking to you about because I know a lot of our listeners are in this position as well. Can you tell us just a little bit about you and your journey into the work that you're doing today? Sure. Yeah. Well, I'm excited that we get to connect. And I love that someone was like, Oh, I want to talk about this topic. So my background is that I was formerly a dancer. And I came into the yoga world, I started teaching dance, and then I was doing a teaching. I primarily was teaching kids. And that was just what I really loved doing. So my professional world took me into early childhood mental health, where I ran a bunch of yoga programs. And then I just continued teaching and kind of like expanding that world. And all the while in my personal life, as I was like growing up, as I was graduating college, teaching all those things, my mom developed an early onset form of dementia at the age of 18. And so I was around 55, 56. So I was in my like, late 20s at that point. And it was a very long kind of battle and disease. And it was what I refer to as like the slow ripping off of a bandaid, you know, like, you always tell your kids, I'm going to pull off the bandaid, like really quickly, so that it's gonna hurt for a second, and then it'll feel better. But I feel like with my mom's illness, it was very much like, oh, we're going to peel off the bandaid as slow as we possibly can. So and all of those icky things that come along with her disease, she was diagnosed with what was called frontotemporal degeneration, FTD for short, not the flower delivery company. And so it's an early onset form of dementia that hits usually in like the prime of your life in your between 45 and 60 is when most people are diagnosed. So she got diagnosed, and it was a whirlwind for our family. And I was teaching a lot of yoga, at that point, I was working, and I was really kind of struggling with like, how do I take care of myself? What do I do? So there was an organization called AFTD, still an organization. And AFTD stands for the Association for Frontotemporal Degeneration. And so I started to volunteer with them just kind of like reached out, they were able to give us some respite grants for our family. They had lots of information that we could use, you know, just as a family navigating the disease. And I started volunteering. And when I started volunteering, at some point, after I'd been volunteering for a while, they were like, Oh, you're a yoga teacher. And I was like, yes. And they were like, well, I think how can we meld these two worlds? And I was like, wait, what? So for me, it was kind of this thing that I never really thought was going to happen. So my professional and my personal worlds kind of like collided. And I had been doing yoga throughout this entire experience, right? My mom was sick, there was a lot that comes along with that. And I was like, I'm going to do yoga. And so I was using yoga just as my own tools. Because as you know, like, it's what helps me kind of be the best person I can be the days that I do the weeks that I do more yoga, I'm a better me, I'm a better Corey, I'm a better mom, I'm a better wife. And so for me, it was very much like a lifesaver as I was going through that stuff with my mom. And so they asked me to do a yoga session for caregivers. And I was like, Oh, okay, I can do yoga session. I always teach yoga. But this had to be very different, because I really had to figure out how to do yoga. I always teach figure out, you know, most caregivers for someone with an early onset form of dementia are in it, like full time, nine to 524. Seven, it's just all encompassing. And so I kind of really had to shift like the way I thought about yoga, right? It's not this practice where you have time necessarily, as a caregiver to roll out your yoga mat and spend an hour and 15 minutes or an hour and a half doing a full yoga practice, right? I think that, you know, it's, it's, it's that becomes a luxury for a lot of us to be able to do that. And when my mom was really sick, when my dad was caring for her, when she lived at home with him, you know, most caregivers, you don't have that time to do that. So when I was asked to give this yoga session, I really kind of rethought like, okay, what are the like, what is yoga, right? What is it? And for me, it's less about can you give an entire asana class, like an entire class of yoga poses to caregivers, it's not about that. It's about what are the little tools that we take off of our yoga mats that they can kind of use in their everyday lives, right? Like, what's a simple breathing technique you can keep in your back pocket that when you're in the middle of a doctor's appointment or your loved one that you're caring for you is really frustrating you in some way that you can do to kind of just reground yourself because you can't, you know, you can't get rid of the FTD. That's not going to go away. You can't take a pill. It's not, you know, there's no vaccine for it. There's nothing like that. So unfortunately, that stressor, it's not one that can be removed. So it's how do you deal with that as you're going through it? And so I kind of pulled out like little tools from my toolbox to give this first yoga session for our caregivers and really thought more about, you know, how can you do three part breathing when you're having a really hard conversation? How can you shift, take a pause, notice, oh, I'm having this conversation and my shoulders are up to my ears, or I'm squeezing my fist so hard and my jaw is tired. Can I just exhale and release my jaw? So the workshops that I that I started giving and the first presentation that I gave was really simple, or what I think of really simple. And yet to me, those are really like the building blocks of yoga. I don't know about you. But like, I feel like as I've practiced more yoga, I wouldn't necessarily say that my yoga practice has gotten more advanced in its same, same. Right? Yeah, right. Like, I don't know if you feel that way. And so I was like, Oh, we don't need you know, I don't need to teach these people how to do an amazing downward dog. I need to teach these people how to breathe how to notice what their breath is doing. And so I started doing a few workshops for the AFTD. And then I started doing a few in my community. I wrote a book chapter about it. And so it's just kind of given me the opportunity to kind of like blend my personal and professional worlds in a way that I, never, ever expected. Like if you had asked me 20 years ago, if I ever thought any of this is going to be my path, I would have said no. 100%. That's, I'm glad that it brought you here. I'm so sorry that you had to work through something so hard. And obviously, it's a struggle for you, for your family, for everybody. And yet you turned it into something that is helping people, you know, times a million, right? There's so many people that are being able to be benefiting from this. this practice and I want to just kind of like, I guess, tell listeners that when we're talking today about this, we're talking about the caregiver. Obviously, the person that is going through this, it's so horrible, right? And we want to take care of them. And yet, this show is about self-care for those of us that are listening right now. And I think that I want to just remove any guilt in this conversation from the get-go that it is okay to talk about how you can be okay because you're taking care of other people right now. Do you find that guilt crept up through this process? Or did you notice that when you were working with others as well? Oh, yeah. I don't see how it came, right? I just think you're watching your person, your mom, your dad, your brother, your sister. And essentially, what frontotemporal dementia does, what most early onset forms of dementia do is really just kind of like take the person that was your person and completely change them specifically with FTD, right? They lose everything that really makes you Ashley, makes me Corey, makes my mom what she was, you know? And so to see that person kind of wither away in front of you is, for me, it was so, so hard. It was just so hard. And I don't think that there's any way that you can't feel guilty, right? You're still living your life. You're still walking, talking, emoting. You still know how to use the bathroom. You still know how to respond with social norms and cues and stuff. And then you think, okay, what's happening to this person? I have to take care of this person. It's very much like, for me, when my mom got sick was when I had my daughter. And so it was very much like these role reversals, right? It's no matter what happens in the relationship with whoever you're caretaking for, whoever you love that has this disease, you flip roles. Like you go from, you know, being the parent to being the child or being the child to being the parent, or you spouses who were once, you know, on par with each other. Now one person is the complete caretaker and the other one is not, you know, the other one is just there. They're not really reciprocating in the relationship. So I think that there's a lot of guilt that happens. And I think it's just a normal part of the situation. I think you have to take care of yourself because the saddest part is that, you know, there's no cure for this disease. So sadly, like, you know, the outcome, I knew my mom was dying. I knew she was going to die. I didn't know when. Um, but I knew that, you know, this may be my future. I don't know. Like I might inherit it from her. I might not. I, but right now, and when we were going through it, I knew that I needed to take care of myself the best that I could. Now I say that a lot easier now than when I was like in it, in it. Cause hindsight is always a lot easier, but I think the guilt is just a natural part of it. But I think you have to take care of yourself because when you take care of yourself, you become a better caregiver for that person. Just like, you know, you become a better mom when you take care of yourself for your kids, you know? Yeah. It's like, no, I don't think you can like describe guilt in this way. It's so, unless you're like in it, obviously I haven't experienced what you're talking about, but like, I can like mom guilt, things, these guilts of just wanting to take care of yourself is so it's, it's crippling. It's so weird. I find that like, it's hard to actually take a step forward in those moments of like mom guilt for me. I mean, so I guess I'm just empathizing with this feeling that like you want to take care of yourself. And yet there's like this little voice in the back of your head saying like, no, like you, you need to be doing something else right now. Is that kind of what it feels like? 100%. And I think for so many caregivers, especially, you know, like if you're not in an area where you have a lot of resources or you have supports or you haven't figured that out, or that's not happening in whatever you're doing to take care of the person who is sick, it is all on you, right? There is no other person. You are the sole care provider, unless you have someone coming in to help you and do things like that. So it, it can feel like, oh, I can't go out for a walk. This person is not safe at home by themselves. Right. So it's like then all those like little types of things. So I think in teaching and working with caregivers or talking about self-care for caregivers, I'm really mindful of the fact that like what you're saying, there's a huge guilt piece that's there. So I feel like all the tools that I kind of have written about that I've talked about in presentations are not tools that require you to hire a caregiver. For 45 minutes, right? Like you can, if that person is safe and sitting where they are doing something, you could walk into the other room, or maybe it's as simple as going to the, you know, stepping outside for five minutes and then stepping back inside or thinking about or shifting, whatever it is, changing the music that you're listening to. So it's like very simple because sometimes caregivers don't have that luxury. And so I think when you don't have that luxury, you're not going to be able to find ways to build it in. It makes it a little bit better. Can we talk about some of those tools, some of the specifics that you suggest to your caregivers? Sure. So the first one that I think is like probably the most simple is just the idea of taking notes, right? So if you're inside the middle of a situation or you've gotten really frustrated or you're really upset, like stop for a second, notice what are your fingers doing? Are you making fists? Is your jaw clenched? Are you squeezing your toes? Like just very simply, what is your body doing, right? Like how are you holding yourself as you're trying to have this conversation or as you're having these emotions? So if you're feeling ungrounded and you're standing up, maybe you need to sit down for a minute. Or, you know, if you're standing up and you're feeling ungrounded, maybe you need to put your hands on the counter, right? So it's like just identifying, okay, in my body, how can I help myself for just a moment in this situation, get a little grounded? So we talk about like body position and body awareness, but the simple act of stopping, noticing, taking a breath, and then moving forward or doing something different. And it doesn't mean that the situation itself is going to change, but just like, okay, I'm really frustrated right now. And my fist is so, so, so, so, so tight and I'm holding my breath. Okay, I'm going to exhale. I'm going to pause. And then I'm going to step forward. I always like to say to people, I think about yoga as kind of the space. For me, yoga is the space between your actions and your reactions, right? So it's like, it's giving you that opportunity to say like, okay, I'm going to put a little space in whatever's happening and however I'm going to react to it. And so that's kind of what I try and teach the caregiver. So taking note for me, is like the most simple, basic thing that you can do. The other thing that I love to do with caregivers, does that make sense? Oh, yeah. And it's so, it is very tough to even like recognize when to pause, right? Like I'm with you. Oh, 100%. And so sometimes even before people are like, well, I don't even, I can't even, I don't even notice what my body's doing. Well, okay, then just stop. Like just pause, right? That like, just take a breath. It might not change the situation. You still might get mad. You still might have a reaction you weren't hoping to have or whatever. Like it doesn't matter, but just the simple act of pausing and taking a breath and then doing, going forward or doing whatever you were doing. And sometimes you're going to have space to do more than that. But I think sometimes just the simple act of like stopping and taking a breath is one of the easiest, yet sometimes the hardest thing to do. So that's always where I start. So by taking note, the other thing that I do always in my workshops is I say to people like, can you shift your, what you're thinking about, right? Like if you are really in it, if you are really frustrated, if you are really sad, you know, and you notice that all of that is happening in your body, can you for five breaths, five seconds, whatever it is, think about, your favorite place, right? So think about it, conjure it up. What does it look like? What does it smell like? What's the weather? What's the temperature? Is there music playing? You know, whatever it is, think about it, close your eyes, go to that space, go to that spot, be in there, take a few breaths in that, open your eyes, come back, and then go forward into what you're doing, right? It's not changing your situation. You're not taking away the stress that I can't do that. You know, but you can take your stressed and maybe turn it around and get a little bit of dessert out of it. I always like to remind people, you know, stress felt backwards is desserts. So maybe there's an opportunity. I mean, it is, I feel like it's so silly when people say that I'm like, right. Okay. I'm so stressed out. My mom is dying and you want me to talk about how it's actually dessert when you spell it backwards. Right. But like it is, so there's always an opportunity to somehow, you know, just give yourself like, oh, okay. For a second, I'm here. I'm not in this space. I'm here for five seconds. So we do a lot. I do a lot of that in the workshops that I do, and we actually write it out and show how our body feels when we think about the frustrating situation and then how our body feels when we think about our favorite place situation and just kind of what your muscles feel like and what your breath feels like and how that shifts. So very simple. And then going into more tactile things, right? So one of the things I love, and this I teach, I mostly work with kids. So yes, I do work with caregivers, and most of those caregivers are older just because of the nature of the thing. But in my regular nine-to-five, I work primarily with kids, so I run all kind of children's yoga programs in different schools and community organizations that I work with. So I love bringing some of the silly things into some of the adult caregiver things. So two things that we do is we talk about the lemon squeeze. I don't know if you've ever done this one before. And it's fun. You know, obviously what happens when you squeeze a lemon? You get juice. And juice squirts out. So I talk about, like, okay, you're feeling super frustrated. You're in this situation. You're really sad. You're really angry. Whatever is happening. So you take a deep breath. You squeeze, squeeze, squeeze, squeeze, squeeze the lemon. You inhale. You inhale. You inhale. You exhale. You let it go. You let all the juice out. And they literally figuratively do that with their fists. I have them do it with one fist. I have them do it with both fists. So you squeeze your lemon, and you let it out. You know, it's the same thing as taking a big inhale and a kind of exaggerated exhale. You can do more pranayama stuff. You can do more pranayama stuff with it if you want. But it's very simple. And I always like to remind caregivers, like, you can do that with one hand behind your back. Like, no one has to know that you're doing it. You can squeeze your fist, squeeze your fist, squeeze your fist. And you can exhale and let it go. You can be in an appointment in a doctor's office and be like, oh, this is not information I want to hear. I'm about to lose my, you know, mind with you right now. So I'm going to squeeze my fist. I'm going to pull it in. I'm going to take a big breath. I'm going to exhale. And I'm going to let all the juice go. And there's lots of other things you can do. Like, you can take a piece of paper that has a word or a feeling that you're dealing with. You can put it inside your lemon. You can squeeze it, squeeze it, squeeze it, squeeze it, squeeze it, squeeze it. Let it go. You can physically drop the piece of paper. Lots of different things that you can do with that. But that's, like, a really simple one that you can always – it's in your back pocket, right? You don't need to roll out a yoga mat to do that. I'm obsessed with these ideas because they're just so, like – like, the way – I love that you teach kids. Right? Like, that we can – it might look a little different for kids. But ultimately, it's like we're all doing the same things in these stress-relieving moments. And the other thing that I'm just reflecting on as you're talking is that, like, stress is both perceived – and it's real, right? Like, physical stress in the body, illness, especially for the person that is going through that, is experiencing stress on a physical level. But the majority of our stress is perceived. And in a moment when we're perceiving – Oh, my gosh. This is, like – I'm so overwhelmed. Like, that flip of the switch into our special place can change the perception. It's not changing the reality. It's not changing it at all. Right. It's just what's happening in your brain. And the body literally calms down. And, like, I know I say these things and you're saying these things. And yet, like, it is difficult to get there. But having tools in your back pocket, having that lemon in your back pocket is such a helpful reminder. I love these. Yeah. I didn't mean to cut you off. If you have more, keep going. No, no, no, no. And that's exactly what I – and it's – and so, like, what I said in the beginning, it was like, okay, like, people are like, oh, well, this isn't really yoga. And I'm like, but it is yoga, right? It's the same way that when you're talking about Warrior II and you're asking one how they're standing and, you know, are you squeezing your, like, front knees, your, like, hip? Are you holding your shoulder up towards your ear, right? Are you doing all – it's the same idea. But it's just – it's not in your yoga pose. And the whole idea for me – for me, anyways, with yoga is that it's supposed to take you – whatever you're doing on your mat is supposed to help you off your mat, right? So it's how to make the tools of a, you know, quote, unquote, bigger, more asana-related yoga practice available when it's not available. Yeah. You know what I mean? So that's why I feel like the little tools are the most important. The other one that I love that my – both my kids love and my adults is lion simhasana. You know, lion's breath. So you take a big breath in, you stick out your tongue, you roar like a lion. And that is just, like, caregivers love that. Like, we do that in caregiver workshops, and I've done that in, like – and it's just fun. I mean, you know, who doesn't want to stick out their tongue and roar like a lion? It feels completely ridiculous. But there is something – like you said, it's like you give your body that moment to be like, ah, right? And then it's like, okay, here I go. I did this crazy, silly thing, and it's just sometimes your body needs that, like you said. Flip of a switch to just not – you can't change it, right? You're not changing this stress. This stress is unfortunately not going to change. But you can, like you said, change your reaction, right? It's – you might – your fight or flight might shift a little bit. I love a good fire breath. Heck, yeah. That's a good one, too. So we talked kids a little, and obviously you work with kids. You have kids. How does that work? Like, how does – I mean, it sounds like you were in the thick of postpartum when you were starting to deal with this. Like, the listeners out there that were submitting some questions, you know, are in both of these worlds. How does one navigate taking care of their own children and their parents? It's really hard. Yeah. It's really hard. I think for me this was probably one of the hardest – that was one of the hardest phases and hardest pieces for me. I think simultaneously becoming a mom. Losing my mom while not being able to use or rely on my mom the way I thought I ever would when I had a baby, you know? Like, I think it's just – I had so many ideas, so many images, so many thoughts of what it would be. And then it was the complete opposite of that. Meanwhile, you're in your postpartum phases. You're in your mom phases. You have to take care of your body. You have to take care of a new human. You know, it's all of those things. It's really hard. Yeah, it was really hard. And I think you have to go back to just like any new mom, really being able to as much as you can, like you said before, take care of yourself while you're in the midst of it. And that is just so much easier said. And that is just so much easier said than done. I don't think I answered your question. I mean, I don't know that there's an answer. It's not that you didn't. I just don't know. I think it's just – it is what it is, right? And there's not a solve to that. There's not a quick fix to any of this. And just acknowledging, right, that like the importance of self-care in these moments, it's so necessary. How about support from others, like your partner and your friends and like were there places that you felt like you could go to reach out to others? Like what did that look like? That for me was paramount, right? Like for me, it wasn't just yoga. For me, I needed yoga. I had an amazing therapist. I had, you know, good support, good friends. And on the flip side of that, you know, no one is going to ever completely understand what it feels like, what you are going through. Yeah. And so I think to be able to have a broad network of support. That is maybe varying in certain ways. Like I don't think I could have gotten through my mom's illness of 10 years without a therapist, right? I don't know that I would have gotten through it without doing yoga. So I think you need – I think your toolbox has to be wide and have a lot of variety and have kind of what you need. For me, it couldn't just be talk therapy. Like that was great and that was helpful. But I do remember moments sitting in my therapist's office being like, I think I feel a lot better. I went and did like a whole lot of yoga right now and then came back and talked to you. Yeah. Because I just – I hadn't had time to like process it through my body and in my body. And so talking about it was hard sometimes. And so I also saw the benefits of, you know, that I needed both. So I needed to be able to physically take care of my body and mentally take care of my body. And then I needed to be able to have people around me who kind of understood what I needed. And I think a lot of that, you know – It's hard to figure out because I don't – my husband and I didn't ever expect that this was what our life was going to look like. You know, it was never like, oh, your mom's going to have this terrible illness and we're going to have a baby at the same time. And like, you know, it's just those things are – those are not things you prepare yourself for. But I knew that in order to take the best care, or I figured out – I didn't know right away. Because you don't know right away. You know, you have to do the work. And I knew – I started to realize, like, okay, I can't do this all by myself. I can't do it all, like, by asking my husband to take stuff on. I can't do it – I'm not going to get it all from my friends. So that's when I was like, I need a therapist. I need to do more yoga. I need people who understand. So that's when I started finding support groups. That's when I started volunteering. And being able to do things like that were really powerful because I was able in a very, you know, bleak situation. to do something super empowering. I remember saying to the staff at AFTD, like, thank you for asking me to do this workshop. Cause at first I was like, what am I going to do? Like, I'm going to teach yoga at the frontotemporal degeneration conference. Like what, you know, like, and after I did it, I was like, wow, like there was such a sense of empowerment around combining these two areas of my life that I never thought would intersect. Right. And so it was just like, oh, okay. Like there's a lot of power in kind of figuring out how you can do something for other people in a very disempowering situation for yourself. You sought out, you know, support from others and ultimately you brought support to them. Isn't that wild to like, look back? It's really, it's crazy. It's so crazy. People say, oh, I'm going to do this. I'm going to do this. It's so crazy. It was like a silver lining I never, never expected to find. And it's speaking to the community aspect of yoga, right? Like this is part of why we go to yoga class. Like we do yoga at home in those little moments we need it, but like at the end of the day, being together, connecting to people is why this is so key. It's so key, right? And I came back, I remember one of the notes I wrote for one of the presentations I gave, I talked about the and I described it and I defined it, you know, it's the whole, it's the Buddhist definition for your community, right? And so connecting with this community, even though it was in the middle of the very beginning of the pandemic. And I gave this webinar, you know, on zoom to everybody to just know that there were 400 other people listening and connecting who had some other relative connection to FTD and knew what it was like to be in that experience and understood the thread. Like I think that there's such power in connection and in community. I think it's so, so important. I think that's one of the tools people can put in their toolboxes, you know, finding community, finding connections. The question came up, I asked you when we were talking earlier, and this has come up from another friend who's going through this. And I really like, I think about if I were in your position, what I would do, and I don't know. So how does one set boundaries so that they can stay sane, right? Like I'm going to give an example. If you get to a point of total burnout, right? You are, you are burnt out. You're taking care of your kids. You're taking care of your, your parent or your person. And you know that like your body is starting to fail you. You're, you're getting sick. You're getting run down. Like how does one actually set boundaries? Does it, do you say, I can't take care of you right now? Like let's hire someone. What if you can't afford it? Like how, and I don't know if there's an answer, but like, is boundaries possible in this scenario? I think it's possible. I think it's very difficult. Um, and I think it will really rely upon like you, a kind of knowing that you need those boundaries, um, be being able to create and give yourself a structure where you can set boundaries, where you can have, you know, someone come in and help you take care of someone. Part of what makes the early onset dementias specifically FTD so devastating is that, you know, there are not a lot of resources for people in their forties, fifties, early sixties, who are dealing with this illness at the way there are resources for older adults who, you know, endure dementia and Alzheimer's. This is like a very, you know, so it's hard to find those resources. You're also kind of in the process of finding those resources. You're also kind of in the process of finding those resources of your life. And so you have a lot more things to sometimes take care of. Um, and so I think that is what makes it a lot more complicated, but I think if you can find those boundaries and you can put them up, I think it will make, hopefully make your situation better. But I don't know that there's like a rule book for saying, you know, you have to do it this way. I've, there's so many different stories and my story is so different from so many other stories. And so I think it's like a rule book. Um, and I think that a lot of it depends upon your circumstances and what's available to you. You know, some families are lucky enough to be able to put their person in memory care or in a facility. And some people are lucky enough to be able to do it and don't want to do it. And some people, you know, have the means, but keep their person at home. Like there's so many different factors that kind of fold into that. And I don't think there's any one way to do it, but I do think no matter what you do to take care of yourself, you're going to take care of yourself first, as guilty as that may feel is really important because then I think it helps you take care of that person even better. And maybe you don't get to the burnout stage. You, you know, you, you maybe get, you avoid that burnout and potentially, I mean, like what I'm hearing is like setting boundaries, identifying what your boundaries are from the beginning, from like those first moments and also in everyday life. Like all of these things that we're talking about today, stress, resiliency, managing our own self-care and, and setting boundaries. Like we can do this, even if we're not in this position that you're describing, but if something comes our way in the future, we have had, we've set up some of these tools. One hundred percent. Yes. Yes. Like this is, I'm talking very specifically to what it was like for my family, but I feel like these things are, these things apply. To everyday stresses every day, you know, it doesn't have to be this situation. Um, that being said, I think, I don't, I don't think right away with this type of diagnosis, with this type of situation, I don't think, you know, right away that you're, that you need to set boundaries. You know, I think maybe if you come into contact with someone else who's been in your situation and really kind of like talks you through it and knows, then maybe, yes, it's easy to do that right off the bat. But unfortunately I think, you know, most caregivers do at some point hit the burnout stage. Most caregivers do, you know, like, I feel like I can say a lot of things now because I'm on the flip side of it because I did it because I went through it and things like that. But when you're in it, there's so many things that sometimes you can't see, you know, like I always tell my dad that I think that his job was a hundred times harder than mine because I didn't live with it. I didn't live with it. I didn't live with my mom when she was at home. Yes. I visited a lot. Yes. I was involved. Yes. I was there and I was helping out, but I wasn't living with her 24 seven when she was sick. My dad was the one doing that. He's the person, you know, that is the person who has the hardest job. And so I think sometimes if you're able to rely on what other people are seeing outside of you, if you are that person who's in it all the time, that can be helpful if you have an outside help you establish a boundary. But I think sometimes, unfortunately you, you don't know until you're in it. Right. And I think about, yeah, those people like your dad, I mean, what, what do they do? What, what they have potentially you to say, Hey, take a break. I'm going to take over for a little bit, but like, I don't know. And I guess like, I don't, I don't ask you to answer for your dad, but they do the tools, right. They do the things that you're talking about. Um, just to keep yourself sane. Yeah. And that's why I, you know, that's why I feel like teaching caregivers about self-care is so important, but it's also, it's very hard at the same time because there's, you know, there's so many factors built into what's available to them and what's not available to them and what they're physically able to do and not physically able to do based upon their circumstances and different things like this. So I also feel like I very much it's like, this is great, but there's always that, you know, just reminder that you have to be really cognizant of the fact that some people may not be able to do it. You know? Um, I want to talk briefly about grief, um, before we ended on more of a positive note, cause this stuff is hard and I'm just, I'm glad that we're getting there. We're getting into the, the thick of it with grief. How does one, like, did you find a balance of being able to process your own grief, your own sadness, and also help those around you as well? Thinking specifically like your kids, like your dad, is that, is that possible? What's the balance of your own grief and also assisting others in theirs? Um, I think if I learned anything from this experience, I learned that you really kind of, you can't take on anyone else's emotions. Um, and I think that was right. Like I, we can be there to support each other and in connecting. and in supporting and in doing things with other people and in being there and helping them out, you are helping them through their grief and through their things. But ultimately, it's still personal, right? Everybody kind of has a personal thing. On the flip side of that, I think that grief generally is something that a lot of people in grief and death are not comfortable talking about, do not want to talk about, do not want to experience, all that kind of stuff. And I think for me, there was no way I couldn't. It was just so much a thread of what was happening in my life. So I learned how to still be a yoga teacher in front of 25 preschoolers. And I was still able to manage all these programs and do presentations while my mom is on hospice. The fact that I was doing all of those things at the same time and momming and parenting my daughter, the fact that I did all of that is still mind-blowing to me. I think that your grief is just ever-changing and it's ever-present. And I think that hiding it is probably the most detrimental thing, right? I think in some ways, you have to compartmentalize it because you just have to do certain things in life, right? Life does go on, right? I know that sounds so. It's so cliche, but. But it does keep going. So it's like, you still do have to clean your house and take care of your bills and do all of those things. But I think being really honest and open about when it's hitting you and what's happening was, for me, something that was really. I just had to be honest about where I was with it. Sometimes it was really hard to be honest with it. I tried not to. My daughter was young. So it was kind of complicated. But I never hid the fact from her that I was sad. I never. I tried to explain it as best I could to a three-and-a-half, four-year-old, right? Like, why am I sad when I go to see my mom? Why is it not the same as when you see me when I pick you up from preschool? You know? That was a big. That was big for me. But I just. I tried to be as honest about it as I could. It wasn't pretty. It was hard. But I think that if you can be honest about it, I think that when you're honest about it and you're connecting with your other people, I think you are then in turn helping other people with their grief too. I don't know if that makes sense, but that's kind of how it felt for me. Honesty, openness. Yeah. And I love what you said that you can't take on other people's. Like, we can't do their work at the end of the day. We can't control other people's emotions. Yeah. I want to pull us out now where, you know, you are. You've been through it. You've been so resilient. You've supported others through your own journey. On the other side, as you described, what do you feel now? What are you doing to take care of yourself now? Like, what is self-care today? It's a constant journey. How has that maybe changed for you? Self-care for me today means a lot of the things that it meant before. It means yoga. Like you and I were talking, it maybe means like, it still means a lot of yoga, but my yoga looks different now. It's not as maybe fancy. It's not as like involved. It's sometimes a lot more restorative than I ever thought it would be, you know? And it means a lot of time with my family. It means fresh air. It means walking. Um, and it means just continuing to like check in, even though, you know, my mom died, in November, it will be, she died in 2019. So, um, almost four years, which is mind boggling to me, but you know, it means continuing to check in and like continuing to know that like my work is maybe done so to speak, because I've been through it and like, but it's not all so done, right? Like to keep reminding myself like, Oh, you know, like something happens and I hear a song or like I'm driving down the road and the light hits in a certain way. And it's like just what she would have loved or a day. She would have loved. And suddenly it's like the waves come crashing in and, you know, there you are again. And so I think just continuing to remind myself that like, it's a constant process, you know, there it's not like, Oh, you did this, you're on the flip side, you're done. So it's like, now you're, it's that I have to continue to take care of myself. I have to continue to do all the work I did in the years that she was sick. Um, you know, for me, it meant taking, I would volunteer with, I have TD for a long time, almost my mom's entire illness. And I did a very big leadership volunteer role. And for me, it meant stepping down from that role, which I think was something I never thought I would decide to do. But the self-care for me was saying like, I've done this big role for a long time. I've done a lot of big work. I'm going to step back. I'm still going to stay connected. I'm still going to volunteer, but I'm going to give myself a little bit more time for me. Um, and so that was a huge thing. I never thought, you know, usually I'm not a, I have a very hard time saying no. So that doing that for me was a big step. It was like, Oh, okay. You've done a lot of work right now. You could step back. You can give yourself the time to like, you can still do your work. You're still going to help people, but like maybe in different ways or new ways and let other people step into the fold a little bit more. That was a big thing for me to, to say like, okay, I need a break from this. I need to step back for a little while. Um, so that for me was one big way of kind of, you know, taking care of myself and making sure that I continue to do for me. Oh, Corey, this is really, thank you so much for sharing your story and all of these amazing tips and the work that you're doing. And I know, again, I mean, I know on a personal level, there are listeners out there that are really going to benefit from this. And there's also so many, many of us that might experience this in the future. So I hope that, you know, we dialed this away. Remember these, that is never selfish to take care of ourselves and, and come back to your journey. Is there anything you want to share any way to connect with you with listeners, um, before they part ways? Um, no, I just want to say thank you for taking the time to listen, to invite this, you know, topic in. Um, and I am always happy to share my story. I'm always happy to talk with people. I feel like for me being able to connect with other people who even had like a sliver of understanding of what I was going through was paramount in me being like, Oh, okay. I am not alone. I have something that can help me kind of like take a step forward. So I'm always open to connecting with people. If people want to reach out, if they want to email me, find me on Instagram, I'm happy to share my story. I'm happy to chat. I feel like you can't ever go wrong with connecting with people. So I'm all ears. Thank you, Corey. I appreciate this so much. Thanks again for being here, friends. Thanks to Corey for sharing her story. Again, if you want to learn more about the Association for Frontal Temporal Degeneration, please check them out in the show notes as always. So grateful you're here. We'll see you next week.