Life After Stroke: Caregiving, Burnout, Healing & Hope with Lana Wilhelm | Plot Twist Radio

[00:00:00] Welcome to Plot Twist Radio, the show where creativity, storytelling, and the unpredictable path of the creative life all collide. I'm your host, Erin Egnatz. When retired nurse-turned-author Lana Wilhelm's husband suffered a life-changing stroke, everything she thought she understood about caregiving changed overnight.

[00:00:20] In this emotional and deeply honest episode of Plot Twist Radio, Lana shares the reality of life after stroke, from caregiver burnout and grief, to resilience, healing, and rediscovering purpose. Lana, welcome to Plot Twist Radio. Well, hi Erin. My name is Lana Wilhelm. I'm a registered nurse, now retired. I had been a nurse for, gosh, over 40 years, and that was my wheelhouse medicine. You know, I knew how to do that and that was a very comfortable place for me.

[00:00:50] I had published before, but it was always like in medical journals or related to that, very technical. Then on June 23rd of 2021, my husband had a stroke. And all of a sudden, I was thrown into this totally different world. I thought my nursing background would just ease me into this, and nope, it did not. Ice was on the other side of the bed, and I realized how much I didn't know about the caregiving process.

[00:01:20] And so once my husband stabilized, I started really writing the book, Stroke and the Spouse, really to help other people. But to be honest, it was more of a therapeutic endeavor for me. I became very, very, very vulnerable. You know, I was used to writing things that were out here versus in here. And that's a different approach. It really is. You know, I worked in healthcare when I first started out.

[00:01:48] I never went through nursing school, but I was a CNA. Okay, you know. So yeah, it's a different world. Yes, it is. The medical world. And it's ever-changing. I know when I was working as a CNA, my grandfather had a stroke. And like you said, you know, they train you for it, you know what to look for. But when it really happens, it's something completely different, especially when it's someone, you know, you're used to being with as, you know, your companion.

[00:02:15] Like you said, you already had an extensive medical knowledge. But what surprised you the most when you became the caregiver? Well, several things. But I think the first thing that really kind of hit me was when they would come into the room and say, do you have any questions? Well, I was going into a whole new arena and I didn't even know what to ask. And I was a nurse. I mean, I could get the, you know, oh, is he on antibiotics today? Is he this or that? And that I could handle.

[00:02:45] But other things, I was at a loss. What's my, what is our life going to look like? How do I prepare? What is he going to be like when he comes home? How do I handle this new person? You know? And so it was really kind of a shock to me. You know, it was just like, what in the world has just happened to us? You know, you can be living life normally and then all of a sudden, boom, everything changes. And as you, you said, it's therapeutic for you.

[00:03:12] I've noticed writing is very therapeutic for myself and a lot of other authors, too. Is that kind of how it started for you? It was just, you know, like almost like journaling or was it a different approach? No, you're absolutely right. Right. It started off as just kind of a little notebook of just jotting down, oh, gosh, I got to remember this or, oh, you know, just little notes to myself. And then it became, I started journaling, you know, kind of everything that was happening that day.

[00:03:42] And then it kind of evolved to, I started Googling, looking for more information and there just wasn't anything out there. And so I kind of just started making notes to myself of things that, boy, I wish I knew someone had shared with me. And then it was kind of funny. We, about three houses down from me in my neighborhood is my, she is a book coach and we were out there and she's like, oh, how's your husband doing and everything?

[00:04:08] And I said, oh, I said, I think the only way I'm getting through this is by journaling and because I can't really express those feelings to him to get him out there. And she's like, well, are you open to being really vulnerable? And I'm like, uh, no. And she said, I think you can. She goes, Wanda, you've got a great story to tell. Let me help you. So she kind of guided me on how to put my thoughts together there.

[00:04:34] And then also to really make me, um, like the writing process is so unusual. Like you sit down and you write the chapter and you put all this information out there and then you go back and you read it. You're like, well, this is kind of cold, you know? So, and people really, other caregivers, they want to listen to someone that gets it. Someone that's been there, someone that's done stupid things, someone that's done great things.

[00:05:02] So they don't feel like they're not, um, that they can't handle it. Yes, absolutely. There was almost no resources for caregivers, which I agree with. Absolutely. Is that kind of what this book is for? Or is it more of like an inspiration? Like I've been there too type thing. You know what? It's really a combination of both. So I started off with Stroke and the Spouse and it kind of goes through the kind of the first two years. It tells our personal story, um, of, of, of how we kind of got through it.

[00:05:31] So it, it not only gives a kind of a how to, you know, what questions to ask that kind of stuff. So it's a tool that way, but it also then gives them a insight into what they may experience. For example, you know, the first day my husband went to rehab, I thought I had it going. We practiced, we did the whole thing. And that morning I get a call that said, bus is going to come an hour earlier. Well, you know, from your grandfather, it's a little, it takes a little longer to get somebody ready in the morning.

[00:06:00] Yes. So he's in the shower. I'm trying to get him ready. Um, I get them downstairs. You know, now the bus is at the door. So I'm like, oh my gosh, what do I do now? Normally any reasonable person would have said, can you wait? But no, you feel like you have to be right on there. So I get them out there. I get them on. I like, oh my gosh, I forgot to give him breakfast. I throw him a protein bar. I'm on the bus. I'm thinking, whew, I made it.

[00:06:28] So I take his wheelchair because they have an extra wheelchair there. And I, I take it and go into the garage and I'm going into my house thinking I've got the day to myself. And then I kind of, you know, he has that weird feeling like there's something going on. Yes. Just as I did the wheelchair, I live on top of a hill was going down the hill. So I turn and I'm like, oh my gosh. So I go running down the hill. I get like three houses down. I catch up to the wheelchair.

[00:06:54] I knock it over and the wheelchair and I are laying on the ground and all you can do is laugh. It's like, what else can you do? You know, really? And so, you know, when I share things with people that, you know, I'm a health professional and I still have to chase a wheelchair, you know? I mean, because if you don't laugh, you'll cry all the time, you know? So then what happened was, Erin, I go visit patients every week at a local hospital and talk to the families and stuff.

[00:07:24] And I realized there's a whole nother group besides the primary caregiver. It's the adult children and family and friends. So I expanded and wrote Stroke and the Caregiver. It's an original book, but with a lot of additions for how they should handle it, what they can do to handle it. You know, it's so hard for adult children because a lot of them don't live right by their parents anymore, that loved one. They live in different states and in their hearts, they want to do everything they can

[00:07:54] to help you. But they have a life to live. They have a family. They have things. So it's kind of I go through, you know, like what questions they should ask. And the key thing I always tell the adult children is, you know, whether it's your grandparents, your parents, a friend, whatever, tell them what you can do. Not what you want to do, but what you can do to help because they can rely that on that. You know, also you have a family to protect and you need to first look at, okay, what is

[00:08:23] going on in our family? And then how can we help in this situation? So it relieves a lot of guilt if you know up front what your child, your adult child can provide. My daughter lives in L.A., so I know there's a lot of things she cannot provide. But I know if there's an emergency, she's on a plane and comes, you know. And that's good to have. And that's really important that you point that out because I know from my mom, for instance, you know, we live up in the Chicago area, but my grandfather lived in Georgia.

[00:08:53] So, you know, you don't know she wanted to be there, but she didn't know what, you know, she didn't want to step on any toes with my grandma and whatnot. It becomes very challenging. So I love that you put that out there. Someone just became a caregiver, say today, what would be the first thing you would want them to know? The first one that they're not alone. They are not alone and they don't have to look high and low for resources.

[00:09:19] You know, I'm available, the book's available and that it is not, it's not a sprint. It's a marathon, you know. So, and I think, especially with any type of head injury, although all of our brains look alike, they all react differently. So take, take it day by day. One of the things I talk about in the book is the what if scenarios. What keeps you awake at night?

[00:09:44] And I do, I've developed a course for caregivers that they can take like online and it's a virtual type class that kind of goes through everything they can experience and some tips and tools and that sort of thing. But one of the areas I always talk about is what keeps you up at night? And you'd be amazed at some of the questions. Usually it's, oh my gosh, am I going to have to retire? Which I had to do. You know, how am I going to pay for this? Okay, when does he come home? What if he comes home? What do I do?

[00:10:14] And then you go through a very difficult, vulnerable state of you're so happy your loved one is alive, but yet they're also gone. So you go through a grieving period. So yeah, it's, it's that there's no right or wrong. There's no perfect way to do it. You just have to jump in and do it. Yes, absolutely. Absolutely.

[00:10:38] And how do you, because as you were just pointing out, you know, it is a, it's a journey. How do you hold on to yourself while caring for someone else? I'm so glad you asked that. That is the one thing that I, the first year I did not do. I, I was so focused on him that at the end of the year, I remember looking in the mirror thinking, who is this woman? You know, um, and I, and so I really work hard on helping caregivers realize you have

[00:11:08] to take care of yourself because you can't take care of your loved one. But really what I have found is I have to wake up every morning with a purpose. And I tell everybody this, it doesn't have to be big, you know, but it has to be about you and what you want in life. So for example, it might be okay today. Today I'm going to plant flowers or today I'm going to go for a walk or, you know, that, or it could be today I'm going to write a book, you know, you know, that sort of thing.

[00:11:38] Um, but I think you have to wake up each morning with a purpose and, and how you're going to make a difference. The other thing is, um, it don't, it's so interesting. You know, you always hear why do bad things happen to good people? And, you know, um, I, and I was one of those people and I remember being so angry at God, the universe, you name it. I was angry at, and, and once I could kind of come to terms with, okay, this happened, but now I'm able to help other people. Not granted.

[00:12:07] I wouldn't wish this on anyone, but there's always something good comes out of any tragedy. I think. I agree. I absolutely agree. So you described yourselves as empty nesters finding a new way to live. Yes. What does that look like now? Wow. Okay. So prior to the stroke, um, we had all these plans. We were going to travel. We were going to just start dating again. After the stroke, it, it looks a lot, lot different. Travel is very, is very challenging. So we kind of limited.

[00:12:37] We mainly traveled to see our daughter because it's, we stay in her house and we've got a system set up. Um, it's, it's pretty lonely because with my husband physically, he does well, but emotionally there's, he has issues, you know, like sometimes he'll read all day and never say a word. He deals with apathy, which is very common. And so nothing really seems to bother him. Um, so now, you know, we don't really go out to dinner a lot, which was something we thoroughly enjoyed. Um, because, uh, because of the stroke has taken away his taste.

[00:13:07] So it's not fun for him to go. Um, you know, socially we'll have people over and we'll go over, but usually has to be a small group. So if there's like a large gathering, like I had an aunt that had her 80th birthday, I went, went alone because it's just too much for him. The stimulus. Um, so that has changed. But then what we did was, um, we kind of decided, okay, we can't travel. So let's make our backyard, our haven. So we put in like a water feature. We did that kind of stuff.

[00:13:35] So we've done things to make this kind of our, our travel place. And, and we laugh sometimes like, you know, we had all these big plans and really how many of them were we going to do anyway? You know, when you think about it, but, um, I think as an empty nester, it's, um, my grandchildren are in LA, so I don't have grandchildren close by. So my, um, you know, my work with other people really helps keeping me going.

[00:14:04] Yes, I could see that. And, you know, you have such a positive outlook. That's a good thing. That's a good thing. I think mindset can change the course of anything. Absolutely. And Erin, you know, I hear frequently is people like, you know what? I have just had it, you know, I I'm just going to throw in the towel. And I always say, you can throw in the towel any day, any time. You just got to remember, you got to pick it up. Yeah. Um, I mean, and there's days when I'll say to my husband, you know what? I'm just not having a good day.

[00:14:34] We're not using the stroke card today. Nice. Very good. That is good to have that. So what would you say to someone who feels completely overwhelmed right now? Maybe not even in a stroke situation, but you know, just in life in general. Oh my goodness. You know what? You know, my focus was on stroke because that's what impacted me. But really it's across the board. I think what I would recommend and I wish someone had told me was, um, take a deep breath.

[00:15:03] You can handle this. I don't know how you can handle it, but you can handle it. I, I tell, please don't say I'm strong. You know, the shower is your best friend. Um, I spent many showers in tears, you know, just don't know where to turn. And the thing is, I tell all the people that I talk to, I give them my email. You know, I say, give me a call.

[00:15:30] I'm going to go. I'm going to go. I'm going to go. Yeah. I'm going to go. So, I think really, the bottom line is be kind to yourself, you know.

[00:15:58] But I truly believe when someone has a crisis, both people have that crisis. I remember a physician telling me, he said, now, Lana, you know, I know your husband had a stroke, but you've also had a stroke. You know, same sort of thing. He said, when I have a stroke patient, I now have two patients. That's a good point. Very, very well said, too. So where can the audience find you? Oh, gosh. Okay. Well, first off, they can order my book on Amazon. And both versions are on there.

[00:16:29] I recommend the second one, Stroke and the Caregiver, for sure, because I think it gives the initial story, but it gives a little bit more. So I think it's a, I don't know. I think it just has a little bit better. It's more stuff in it. And then I have a website. It's www.strokecaregiverconnection.com. And this is just, Erin, this is just kind of snowballed. You know, it started as a very sad, tearful, overwhelmed, crazy woman.

[00:16:58] In her house. To an author. To a website. To a course that I give to caregivers. And the need is just so great. You know. It is. There's a whole world out there. There are so many. And for everyone listening, you know, she's been there. I've been there. Not to the same extent. But, you know, there's people like you out there. So reach out. Yeah. Absolutely.

[00:17:25] And, you know, you never think it's going to happen to you. But, you know what? In my last five years of walking this journey, it is something has happened to everybody in the world. You know, it could be an aunt, an uncle, a grandparent. Everybody has been a caregiver. However, it's to some degree at some point. You know, it may have been you were the backup. Maybe, you know, mom was gone. And so you have to take care of dad. You know, so this is a universal need.

[00:17:54] It is 100%. Very important. Very, very important. And I will make sure that all of your links are in the show notes so that everyone can find you. Thank you so much for joining me. This has been very powerful. Well, thank you, Erin. And it's just been such a pleasure to talk to you and your audience. And, you know, we all do this because we care. You know, it's not about the glory of because, trust me, there's no glory in caregiving. But we do it out of love.

[00:18:23] And that's a beautiful thing. If today's conversation resonated with you or if you're walking the caregiver's journey yourself, make sure to check out the show notes for Lana's books, website, and caregiver resources. And remember, as Lana said, you are not alone.