17. The Valuable Role of Caregivers in Stroke Recovery aka The Unsung Hero

It's. What's up, everybody? Wanted to mention a couple things that I forgot to mention in the episode. This week newsletter podcast. Lovelsurvivor.com check it out. Got some newsletters issues coming out this week. Armchair expert DAX Shepherd with Tim Ferriss and Jane Fonda. Both great episodes, highly recommended. Reading a couple of cool books that I'll mention down in the Show Notes and Llama Life app. Highly recommend it if you like organizational apps. And last thing before I mention before we hop into this episode, how to change your mind on Netflix. I think it's really interesting. Topics morning, everybody. My name is Will Smear, and welcome back to another episode of the Level Survivor of Hudcast. In today's episode, we're diving into the profound topic that touches recovery stroke and is often overlooked but incredibly vital role when it comes to the stroke coverage journey, and that is the caregiving. And I apologize. Right out the gate, my neighbor's dog is barking like a maniac and I'm thrilled. Can you tell I'm on fire about it? No, it's okay. Hey, it's part of life. It's either on this podcast, it's either my kids making noise or the neighbor's dog barking in the background. Or like most people, it's probably the lawn service coming during the podcast, which I can't wait for. So, you know, I guess the plus side is there I don't have to mow the lawn. The downside is, sometimes I show up in the middle of this podcast. Anyways, let's dive in today to episode 17 and really focus on the caregiving role and the importance it plays in stroke recovery. Out the gate. I will say I don't think I did it for me. I don't think I did the worst job. But it happened to be a couple of people. For me, it was my oldest sister, mostly mixed with my wife. Honestly, sometimes my daughter played that role and it wasn't easy. It's never easy. It doesn't matter who it is or what the situation is. In my case, my wife is deaf. So it's a little trickier. Not impossible, not not terribly difficult, but I struggle with it. I have since I met my wife. She and I communicate pretty well. And to be honest, when I first had my stroke, it wasn't terrible because at that point, my initial stroke, my speech was not great, but definitely not affected in the initial stroke. The way it could have been and actually later was when I thought I was having that second stroke and got diagnosed with Ms. That's when my speech really took a turn and things got hard and heavy pretty quick as far as communication. But anyways, that's just like a little glimpse into my particular situation. And again, focusing on the caregiving role in this journey, it often gets overlooked. It is a key role, it is a critical role for both the survivor, the caregiving themselves, and the family. And they wind up being sort of the glue that holds everything together. Because the stroke survivor or anybody who has a significant brain injury life event, I mean, the caregiver role spans quite a bit of it's not exclusive. To stroke, and I'm sure many of you know that. But it's usually the first line of communication between doctors, stroke survivor and then between the family. And, yeah, it's a really difficult role. Again, one that gets overlooked. They're assisting and supporting the survivor and the family members are answering questions, managing information. Again, remember, all this information is coming downhill and it's coming fast and furious and somebody it takes a collaborative effort between the individual survivor, the nurses and doctors, the caregiver and the family. It's just a lot of information to process and sort of disseminate. I guess if you're familiar with basketball, you can kind of equate it to the point guard role. They're the one bringing the ball up the court. They're the one kind of setting up the plays. They're the ones who are passing the ball, facilitating the whole sort of operation from the get go and they kind of run the play. They're more than just a helper and they're more than just a point guard. The point is, they are critical, they support, they assist. Again, both the survivor and the family. They're managing all the information that's coming downhill, fast and furious. And I think what I mean, again, I'm going to share a little bit of my story. I tried to help quite a bit, especially initially. Probably was more than I could handle. But once I got the lay of the land, I sort of helped as much as I could communicating. But we have a family. I'm a young stroke survivor. By all accounts, my children are still young. My daughter was just a little older now, but she was a junior in high school. And again, this was all pre COVID, so there was a lot going on. My wife was running the household. I immediately had gone on short term disability, so money was okay, but it was certainly tight initially. And yeah, not only has my wife dealt with the blow of me having a stroke, so not only am I out of the house, but there's just a lot of emotions, there's a lot of chaos. In her case, communication and collaboration was pretty good. I'm sure it could have been better. I think that's going to be always the case. When you look back at your own situation or even if you're going through it right now, it's not easy. And there is a lot of information and you can hear a lot of things and you have to also decipher. There's not a lot of time to decipher the information and you have to make quick decisions. Sometimes you got to figure out bills don't stop because you've had a stroke. So I guess in that regard, I mean, I was quite lucky to have both my sisters help quite a bit and I think they both visited several times at my brother in law with my older sister and then my younger sister played a big role as well. It's just a lot of stuff. So when it comes to the caregiver role, I was cognizant of everything, kind of. I mean, fortunately because of the stroke that I had and the deficits I was left with initially and, you know, I was able to do some of those things. I was still able to manage my phone, pay bills, stay on top of a lot of things. But that would have been really difficult for my wife, even more difficult than it already was if I had had different deficits. If I couldn't. I will say it got tough when I got diagnosed with Ms and I thought I was having that second stroke because my ability to sign and communicate went from pretty good before the stroke to not bad. But my hand was definitely affected by the stroke. But she could read my lips. But then when I got knocked out a little bit there with the Ms and the exacerbation, I couldn't even speak. I mean, they had to run a lot of tests to see if I could even eat and swallow. It was very difficult for a little while. Thankfully, at six foot 8325 pounds, you better believe I got back to swallowing and eating very quickly because I was not going to put up with that for very long. I had a couple of liquid meals. I can go smoothies for a couple of days. But yeah, there was no way. And they tried. Boy, did they try. Somehow I convinced them that I was good enough to get back to eating pretty quickly. I don't think it lasted more than three or four days before I went from liquid to solid food. Really the least of my problems back then. But yeah, again, like, you know, it's kind of circling back to the caregiving role. It is essential, obviously. It is the connector, the connection, supporting, assisting. There's just so many things that are happening and I think what we often overlook is like the significance of the mental health of also the caregiver. I mean, it's a lot for the Survivor, the family members. It takes a toll on a family member, but there no disrespect. And again, it depends what level of collaboration you're using here. But it's okay to be worried about loved ones. It's okay to have emotions and feel certain things. But let's be honest, the two people who are really in the ringer here are the Survivor themselves and the caregiver. And I'm not minimizing the importance of family and the roles they play. I think everybody definitely plays a significant role and an important role and to what degree I think is determined by the caregiver and the Survivor and the collaborative. But the more everybody helps, I think the easier it is. That sounds so obvious as I'm saying it, but yeah, I mean, family will play a role and it's not easy for them either. But the majority of the burden is on the caregiving, depending on where that stroke driver is initially, where they're going. What is the outlook, what are the residual effects? What are the immediate things, what are the long term things? Yeah, I mean, trying to maintain a cool, calm and collected demeanor can be tough sometimes. People you see it all the time in hospitals. It's no different in the stroke floor. There's frustration there's, emotions are high, everybody knows, everybody's putting in maximum effort to get to the resolution, but sometimes that just is not obvious and it can take a lot of time and you want answers and sometimes it's hard to get an answer, but sometimes the simple answer is that people just don't know. I'll say in the case of my stroke, just thinking back to it, like, my wife would come in sometimes and see how I was progressing for physical therapy and therapies when I was inpatient. But when I would tell her how I was doing and to be honest, it was very clear that I was not obviously in the shape that I was. I mean, you can look back now and it's like easy to say like, okay, well, maybe this was for the best in my case because I was doing a lot of things that I wanted to even not be doing, like drinking and smoking, which I talked about last episode. Unfortunately for me, it took having a stroke to really put all that to an end and I'm very grateful for it now, but it was definitely not easy that first three months. I mean, it wasn't easy. Shit, it's still hard now, let's be honest. I made a post a couple of days ago that I ran 300 miles in the last three weeks. That's amazing. I am proud of it. I put a lot of work into my recovery and it has paid off tremendously. And I share that on social media a lot of times because I want other survivors to realize, like, there's no magic pill. It is super hard. We all know this, right? It's not easy. It can feel bleak at times. But yeah, I share these stories not because I'm trying to share selfies and show you how many miles I ran. Like, I don't even care about that. I'm just trying to show you, look, if you do these things, if you keep grinding out, you keep working. Like, people say there's a lot of hate on social media towards hustle culture. And I'm not suggesting that's the thing that we need in the world, we certainly do not. But hustle culture in terms of like, I had a stroke at 37, you may be a different age, you may have had a totally different stroke. You may have completely different deficits. But the reality is don't want to sugarcoat it. Like, you got to put in the work. And even when you put in the work, when you've had a neurological event, it does not guarantee that things will ever go back to the way they were. It's never guaranteed that things will snap back into place. It may be different, it may be harder. These are things I'm still learning. And that's why I actually got that kind of got me here to this topic on caregiver role, because I still struggle. My wife is tremendous, but she's definitely tired of it. She does not have to help the same way she did in the early days. A lot of that burden. I've worked really hard to be able to do things myself because I don't tell her this enough and I should. As I'm saying this, I'm thinking, like, I have to tell my wife. I mean, I take it for granted, but I love my wife. She's amazing. But I still have these like, I wouldn't call them to me they're nothing, but they're a little like you could consider them a little outburst, but it's more because I'm frustrated with my own body not cooperating at times where like, she'll be like, what, are you mad? I'm like, no, I'm not mad at you. It has nothing to do with you. You're amazing. But I'm trying to fucking tie my shoes. And that is like, one of the hardest things. Three and a half years into my stroke recovery. I can run 20 miles on a Saturday, but I can't tie my own fucking shoes. That sounds ridiculous, but that is the reality where I'm at with my stroke. Now. My stroke, turns out affected the motor skill portion of my body. So yeah, things like handwriting and typing have been insanely slow to come back, and that can be entirely frustrating when you work on the computer for a living. I've improved on video, and certainly as I've gotten thinner over the last couple of years on my recovery journey, I'm no longer embarrassed to be on camera. My speech is pretty good. I do this podcast that continuously over the years has been really helpful for a lot of things. Having a podcast is a cool thing. Being able to help and speak to people is a very cool thing. I could be a little awkward on camera because I think everybody struggles looking at the camera sometimes I continue to work on it, but I think some my Ms and stroke make it even a little bit more awkward for me. I try not to do it. Thankfully, I've done improv and I'm getting a little off track here. But my point is, it's taken a lot of work and it continues to take a lot of work. And as a Survivor, I think it's important to talk about caregiver because it is important to remember as a Survivor, you need to constantly check in with your caregiving team, with your family. The caregiving is checking in with you. They're communicating with family. I think everybody is. The more people can communicate, I don't think you can over communicate in this kindness situation where you're where it's a collaborative caregiving situation. Everybody communicates with everybody. I think the more you can share roles and responsibilities where people thrive. Again, going back to an example, my wife and sister kind of worked hand in hand for a while because my sisters are hearing my wife is deaf. We did the best we could. Given the situation where you're in, I don't think, you know, I'm sure we could all look back and think, oh, I could have done this different. I could have done that different. I'm sure I could have thanked both of my sisters and my wife more. I feel like I may be misremembering this, but I feel like I tried to because I knew the bird, you know, I don't know if I did it often enough, but I feel like I did and even still do continue to remind them because without them, I wouldn't be as far along as I am. Even though I'm frustrated with myself at times and where I'm at three and a half years in, there was a day I didn't know if I would be out of a wheelchair. There were days there's still days I could have an Ms exacerbation at any point. I think we have done everything we can do to sort of keep that at bay. And I think if I were, we would have a good plan of action going into it. But that doesn't mean it's easy. And yeah, I mean, nobody wants to go through this multiple times, but I just encourage everybody who is listening to this, whether you're the survivor, a family member, or the actual caregiver, everybody's role is important. It is. You know, again, you can't over communicate enough in this situation. Mistakes are gonna happen. They're part of a life. You know, hopefully everybody's getting the information to everybody in a timely manner where it's nice to get the information quickly, but only is it really important when it's literally life and death situations. So you want to keep communication open but controlled. And I think the caregiver and family need to kind of get things on lockdown. I think we did that's. One thing my family is really great at is getting things on lockdown. We did not let a lot of outside noise in, which I think is a really big thing because you're going to get a lot of things. You're going to hear things from other people at the hospital when your family is down and meeting other people who are around the hospital, you're going to hear different things from staff members and nurses and you have to really prioritize the survivor, prioritize, build a chain to command. It's kind of like running a team, honestly. To go back to point guard references. It's like any sport. I think these things it sounds funny and it might sound cliche, but building that support system and really delegating the tasks that are good for everybody, reassessing everything for those who are newer out there who might be listening. It's a lot of financial stress or just going to be some legal things I think. I actually again was really lucky in the fact that my sister at that time was a practicing attorney and a good one at that. So she had a lot of cojones that really helped with pushing and pressing when that seemed needed. Luckily that really was not ever too much of an issue at any of the hospitals, which is great because you spend enough time at hospitals, you see things are not going well for some people. Things are not being handled well I think in that regard, yeah good. But again reminder to limit the input from outsiders, focus on keeping an immediate tight circle and focusing on the people in that circle. So again survivor caregiver, an immediate family acknowledge outside stuff. But yeah, just be careful, keep things tight and as long as the survivor and immediate family and caregiving team are really on the same page, the rest does not really matter. I know that's easier said than done. Very fortunate to grow up in a family and lifestyle where that was seemed to always be the case. That's just something that my sisters and I were born with and I am eternally grateful for it because if there is one thing we are amazing at, it is the three of us and my wife. So my two sisters and myself and my wife and I are really amazing at blocking. And not only blocking but just rejecting outside noise. We're grateful to everybody who plays a part or has things to share. I'm not saying that that isn't a thing. It's just when you got to act fast, when you got to be smart, you got to do the best you can. As long as the immediate circle is on the same page, that's the best advice I can give. And I think that played a critical role in getting through that sort of that first ten or twelve weeks in 2020 for me. But one more thing I want to touch on because I don't think I've touched on this before. This can be a caregiver thing, specific but just thinking about it and talking about sort of the financial and legal matters, nobody anticipates having a stroke. I think depending on who you work for, where you're working, there's going to be different levels of experience with this. But in my case, the place I was working at at the time of my stroke there was the availability of getting a short term disability. So that was amazing. The only thing tricky for that was that I had sort of ten or twelve weeks I think from the beginning of January 2020, which brought us right to the end of March 2020. And I think if I had just had the stroke, well, I still would have been a hot s probably when I tried to return to work and I just wanted to get back to work, period. There is obviously a drive in me as a younger survivor to think that I could do more than I could. Very common amongst stroke survivors. But I really wanted to get back to my team and focus on something other than the fact that I had had a stroke. My mistake might have been that it was too soon because I had the stroke, did the rehab, then got diagnosed with Ms after had to go to rehab again. So I basically spent Q, one of 2020, right before COVID in impatient rehab and hospitals. So that entire time I was on short term disability, I was in inpatient care at one hospital or another. So figuring out some other solution probably would have been more ideal. The one that did work out for me was like, because of COVID because of a lot of things, I was able to start part time. I still don't think I was ready. So to my former employer, I'm very appreciative, I guess, of getting back into work part time, at least initially for the first several months, probably that entire summer. Yeah. And that's the other thing too is again, going back to the community that I want to build and some of the things that I'm working on building out, which is it's not going to be a thing, I've kind of refocused the plan here. So building out the community, but building it more intentionally, trying to work with some different people so that it's more of a collaborative effort. Because really what I want to do is get the community in a spot prior to launching that has a good amount of resources. I've gotten pretty far, but I want to do some more, get some more resources in there, get a couple more people on the team because it's a lot. And going through doing research for this episode really handy and I'll put it in the show notes, but there's a really handy PDF I came across from, I think stroke, which don't get me started on that, that is a cluster at best. But I found a really good PDF guide that would have been amazing if I had had that to give to my wife and my sisters in 2020. Thankfully we were able to figure it out. It's not rocket science, but there are little tips and tricks that would have helped. I think everybody along the way, honestly, a lot of things I said today are only because I'm looking back now and yeah, I think we figured out pretty well, but it was a lot of stress on everybody. Every situation is unique, recovery, family is different. But we handled it, I think, pretty well at the time. But it was a lot of stress. I mean, my sister was still working as a full time attorney. My brother in law was helping, but he was working full time. They were flying back and forth from Colorado to Florida when my wife left, when my sisters left, and my wife is the only one here, it was like she was doing a lot of the work with the kids, getting them up for school, getting them ready. She was trying to stay in shape. She was having emotions. She didn't quite know what was going on with me. I did a pretty good job of assuring her that I was fine on my own at the hospital inpatient but there were a lot of unknowns back in the day and she can't just pick up the phone, call me at the hospital. She was able to text, but yeah, it's a lot. So all this to say, and again, I'll put this in the show notes. There's a lot of information, there's a lot of good information that I'm just coming across now three and a half years into the journey. So I think if I can get more resources and again, I'm partnering up with some different people to work on things that they can add value to the community. Because I think the more I think about building out this community, it's not just stroke survivors themselves. Yes, that is obviously in my case because I am a survivor trying to help other survivors, that is the main goal. But in thinking about this, why can't I bring these resources in so that somebody who is the main caregiver for a stroke survivor or brain injury survivor who isn't finding this information on their own. I just want to be able to get people the help they need, even if it's just within the community. Caregivers just able to hop in and ask a couple of questions because they feel lost. Honestly, it's not easy for everybody to ask questions. I'm saying it like it is, but it's not like a caregiver may not want to. They may feel overwhelmed or like they're burdening people at the hospitals or the facility or they may want a second opinion. Creating a space that's welcoming and safe for other people to ask questions at any stage of the journey, I think is important because we all have a lot of thoughts. And for survivors that have been through it, there's things that they might have done differently. There's caregivers who have been through it one, two, three multiple times. And I think about it too, with this community. It's like there are still tons and tons of like I mean, think about how many students there are every year going to school, physical therapy and occupational therapy or speech therapy and how many people there are working in the communities. I live in Florida. There's a billion therapists, but a place for therapists to connect with actual survivors beyond just their hometown, beyond what they're seeing at the office. The more I talk about it, the more I keep thinking about I don't want to carry it away. I mean, we're going to build this in stages, but I think there's a real opportunity to connect not just survivors with survivors, but survivors with caregiving, caregivers with caregiving, caregivers with other survivors who are not the survivor they may be taking care of. There's just a lot of people and a lot of roles and a lot of information, and a lot of it is siloed and spread out throughout the Internet. There are wonderful resources like the American Heartassociation and Stroke, but they all have I don't want to say they have an agenda, but they're putting out resources that they think are good and they very well are, honestly, most of the time. But it's like, I would have loved to somehow come like, how did I not come across this PDF? It's stroke for caregivers. Why isn't every medical facility offering this PDF to people? You don't have to print it out. Hey, it should be part of your welcome packet when you get to an inpatient facility or when you're exiting a hospital, hey, your wife just had a stroke. And to the husband who's pushing his wife to the car who may not be going to outpatient, like, hey, by the way, your wife just had a stroke, you're now the caregiver. We've given you no information, but at least here's a link to a PDF would be helpful. I don't know. I can't imagine when I think about that as I'm saying it out loud right now, how ridiculous is that? Honestly, I didn't even realize there were like, I know this sounds insane as I'm about to say this, I'm going to sound well, I'm going to sound like somebody. Yeah. Not every person who has a stroke goes from the hospital to a facility. Now, I will say I don't think hospitals are sending people who've had a stroke who are who have significant deficits, like unable to walk. But I also don't know myself. Some people are not able to get a certain level of care. It may be because of where you live. It may be because you don't qualify for a thing. It may because you don't have insurance. Honestly, this sounds terrible. And as I'm saying it, I feel kind of ashamed that I don't know, but I feel like there are cases where people are literally sent from the hospital, they've had a stroke. They've been there maybe a couple of days, and basically they're left in a spot where they're sitting in a wheelchair waiting to get into a vehicle of another family member with no resources. The caregiver is left with like, my X, Y, or Z just had a stroke, and now we're just kind of left to pick up. The pieces. Now, I do hope this is rare, but I honestly don't know. I only know the journey that I took, which was the one from the hospital to inpatient rehab. And it was you know, they they yeah, I mean, they they told me I had a stroke. I I was on the stroke floor of the hospital here in Jacksonville. They did some assessments over a couple of days. They put my sister in touch with the people at Brooks because I believe a lot of these care facilities have like I forget what it's called, but it's a liaison of some sort between care facilities, the hospital care, and the next level of care. But sometimes I was given like 30 days in my first chunk of rehab and people are like, oh, that's a lot of rehab. I was still a hot mess after rehab the first time and I got 30 days. And that was like, apparently some amazing amount. Like, how did you get that? Like, some people only get like a week to figure it out. And it is you are not going to figure this out. No matter how good shape you're in. You're not figuring out how to regain control of your life after two weeks. You're just not honestly, I could be dead ass wrong, but I don't even think michael Johnson, who had a stroke a couple of years ago, remember he won the two and 400 meters in the 96 Olympics. So we're talking like premium shaped guy, one of the fastest men, if not still the fastest in the world, had a stroke. And I'm not sure what deficits he was left with, but I imagine it would take him more than two weeks to just shit. It takes more than two weeks to wrap your head around the fact that you've had a fucking stroke. Let's be honest. Sorry for all the language. It's super fired up as I'm thinking about this because and also my neighbor's dog is still barking here at the end of the episode, which is super awesome. But yeah, this just kind of circles back to the importance of everybody's role because I think in the end, whether you're a caregiver or your family member or you're the actual Survivor, everybody's role is significant. It is a team effort. Stress and staying calm under pressure is a really difficult thing. Self care in this situation is super important too. Just kind of relieving each other. But also building this tight support system is incredibly important because really you're all working together to get the Survivor into the best possible path for success. So that everybody at some point, and it is going to be a long, difficult roll road can get back to a sense of normalcy, whatever that means for you and your situation. So, yeah, you can tell we're at the end of this episode because I'm getting tired anyways. If you are a Survivor, if you're a family member, please, please acknowledge the caregiver efforts. Express that gratitude towards each other. If you've made a mistake, own up to it. Just try to remember everybody's doing the best they can and really everybody's learning along the way. So mistakes are going to be made. Happens in life, it happens in stroke carefree. I think the closer you could stay as a tight knit circle and group, the better off you'll be. And just try to extend grace to each other because it is difficult and the only way path the way through it, that's the best way to make it successful for everybody is really sticking with it, getting through it, extending that gratitude and just really again, I'll put that guide in the resources. But yeah, just do the best you can and be loving and kind and realize at the end of the day, everybody's trying to do the best they can and acknowledge that. So little bit of heavy of an episode, but I really wanted to put an emphasis on the caregiver role because it's not something we've talked about in the first 17 episodes until today. So I hope that you found this helpful. If you have any questions, as always, feel free to reach out to me on social media level survivor on Twitter TikTok going to start ramping up content again in a couple of weeks, right after this week, probably starting in June when the kids are home from school. So anyways, I hope you found this episode valuable. I want to thank you for listening to episode 17 of the Love of Survivor podcast and by for now.