Rayna Neises: Hi. I am Rayna Neises, your host of A Season of Caring Podcast, where we share stories of hope for family caregivers pushing past the busyness and loneliness of caregiving to see God even in this season Today, I’m excited to introduce you to Lana Wilhelm. Lana is a retired nurse with over 40 years of experience in neurosurgical trauma, home care and case management. She’s the author of Stroke and the Spouse and Stroke and the Caregiver, subject matter expert and guest speaker on the topic of caregiving. She’s received her BSN from St. Louis University and MHA from the University of Missouri Columbia. Welcome, Lana. Thank you so much for being here today.

Lana Wilhelm: What a pleasure to be on the podcast with you. It should be a fun, half hour.

Rayna Neises: Yeah, definitely. So I know from the subject of your book that stroke entered your life. Tell us a little bit about your caregiving and what that’s looked like for you.

Lana Wilhelm: [00:01:00] In 2021, my husband, suffered a stroke. I was working from home at the time as a case manager, and he. Had been retired. He left to go run an errand for me, and when he didn’t come back from the garage, I got a little concerned. He came in and I checked and he said something is very wrong.

And that is really when our journey started. The nine one one call going right into, the emergency room, to the intensive care unit, to everything that is involved with that. And so the first part of the caregiving journey, of course, is shock and awe.

Rayna Neises: Mm.

Lana Wilhelm: You’re just are so surprised. You have no idea if you’re coming and going. It’s very overwhelming. But with my background being in nursing, I thought, oh, this should be no big deal. I’ve been a nurse forever. I should be able to handle it. Caregiving or being a care partner is a hundred million times different than being the nurse in the room.

the medical things were fine. Taking care of the patient is fine, but dealing with that [00:02:00] individual that’s sitting in a chair whose life has turned upside down, we didn’t have the skillset for that. We were never taught how to do that, or we never experienced it firsthand. As my husband stabilized, I realized that individuals like myself and those that have no, medical experience, we are floundering in the caregiving role.

So it kind of started at that moment. I think I sat down and the first time they really asked me, do you have any questions? And, I just went blank, you know? I guess the biggest question I had was, or two was one, can you turn back time and two. What is this gonna look like?

Rayna Neises: So sad because we don’t we don’t even know what questions to ask, do we? Because everything is new. So many times caregiving does come through crisis, just this sudden change, and there are so many things involved that we don’t even have questions because we’re just so overwhelmed by it all.

And I often hear caregivers [00:03:00] that are in the medical profession, nurses like yourself that say, well. I knew everything except I knew nothing all at the same time. And it was like I knew the medications that they were saying and I knew so much about the diagnosis, but at the same time, I didn’t really know anything. ‘Cause I didn’t know what that translated into for our life and for what this was gonna look like from here.

Lana Wilhelm: That is so correct. When I sat in that room, it was just a real eye-opener about the limited resources, not even knowing what to ask. You know, it’s just, it’s overwhelming, but it’s also, very scary, you know, because you don’t know what to expect. And so of course you expect the worst.

You know, you spend night after night, like, what if this happens? What if that happens? What if this happens and you start to go down this avenue of things that probably are not gonna happen, but you’re convinced they are.

Rayna Neises: Yeah.

Lana Wilhelm: You have no control over anything. You know, we always think that, it’s always gonna happen to someone [00:04:00] else. That crisis is, you know, the neighbor down the street is like, oh, that’s so terrible. Let me pray for you, or this or that. But when it hits you, it’s like, whoa, this really happens.

Rayna Neises: Mm-hmm. the hearing those stories, it just doesn’t feel like it’s anything we need to deal with or that we’re going to have to deal with. If I asked you for one thing, what surprised you most in your caregiving?

Lana Wilhelm: I think the one thing that surprised me the most was, the isolation. Being caregiver, when the crisis first happens, everybody comes to your help. I mean, you are overloaded with support and people, but what you learn is once you get home and things kind of settle down,

people move on with their lives and you want them to, that’s, that’s what they should do. But it becomes very isolating because you can’t do the things you normally did. You don’t have those outlets you normally did. For me, for example, I retired, so that was a big chunk of my life that I wasn’t expecting to do.[00:05:00]

Rayna Neises: Yeah.

Lana Wilhelm: and so you don’t have those people helping you. The other thing is the person that you, are caring for has changed dramatically.

Rayna Neises: Yes.

Lana Wilhelm: although you were with that person 24 7, it’s a very lonely existence. So I think, you know, I was surprised at the isolation, that you feel, and you know, it comes to a point where, people just stop asking, how are you doing? Whatever, you know? And, and, and they should, I mean, it has no reflection on them. But every once in a while it’s nice to have someone say, how are you doing? You look tired. Are you getting out? That sort of thing.

Rayna Neises: Yeah, I think you bring up a really good point people go back to their life, but you don’t get to go back to your life because your life has changed and you don’t even know what that looks like, and you’re still trying to figure that out. So all the normal things for you are no longer normal. So those ways that we took care of ourselves, those ways that we had that social interaction. They change and many times it’s not just change. We stop doing those things and we [00:06:00] start thinking about how much they fueled us and how important they were until we find ourselves really isolated and and struggling probably.

Lana Wilhelm: Well, and then what I also found is that, you know, before the crisis or the stroke. You woke up every morning with a purpose, you had something, you were working towards. I think post-stroke, you just are more open to what’s gonna happen today. So it’s okay, is it, is the other shoe gonna drop?

Are we gonna be at the doctor’s office? Are we gonna have this? Is this gonna happen? So you never really think about. What’s good for you and your loved one. You know, what am I waking up to do? And you don’t have to have a huge purpose. It could be as much as today, especially initially today, I’m gonna take a shower and put on some lipstick.

That may be your purpose for the day, and it may seem minor, but some days that’s all you can do.

Rayna Neises: Yeah. And I do think that’s one of the things I hear over and over again in [00:07:00] talking with caregivers is the unknown or the fact that every day is different, even when you have plans and you’re trying to make it the same, it seems like those curve balls are constantly coming and. So every day is different, and that just takes up so much resilience and so much of our energy to constantly be trying to flow with what’s happening around us. So it really can be draining, which leaves us those days that we’re just doing good , get to the shower and, and to be able to do the basics for ourselves, and we have to learn. How to squeeze in the rest. Right? And it’s not realistic

Lana Wilhelm: No.

Rayna Neises: initially, but it is something that we can’t stay at that initial shock in that initial place. We have to move

Lana Wilhelm: no.

Rayna Neises: the place that’s sustainable because especially with a stroke, you’re gonna see some improvement, but you’re not going back to where you came from.

Lana Wilhelm: And the thing with the stroke is, it’s not a linear journey. You know, every stroke is different. You can have a stroke in the exact [00:08:00] same spot in say, three different people. And the recovery and the outcome is three different recoveries and outcome. It’s not like you break your arm, you get a, cast, you got six weeks of therapy, and then you’re back.

Rayna Neises: Yeah.

Lana Wilhelm: You don’t know what you don’t know. And so the other thing is, for a stroke patient, some are very physical issues. Others are more emotional or mental issues or, behavioral type issues, or cognitive, so you don’t see that. So the person looks great,

Rayna Neises: Right.

Lana Wilhelm: And so people are like, oh, they’re doing so well, and they are, don’t get me wrong, but they have deficits that you see on a day-to-day basis. And so you tend to protect them. And when you protect them, you take a part of yourself each time.

Rayna Neises: Yeah, and that’s very similar with caregiving for those with dementia that the appearance doesn’t necessarily match what’s actually happening. And so that can be really challenging because for a really long time it seems like things are going really well or they’re doing well, and [00:09:00] a lot of times can be really socially appropriate too. But yet the demand of the everyday life. Is not even close to what we’re seeing on the outside. So I think that’s true for a lot of different types of illnesses. And as caregivers, like you said, we want to preserve the dignity. We want to allow the person to shine as much as they can, but it, it definitely has an impact on us as caregivers, especially when those misunderstandings come into play.

I can remember. my dad to the doctor and having him be so appropriate in that bantering conversation with the doctor that, especially someone who wasn’t addressing his decline, didn’t understand like the urologist, it was kind of like,

Lana Wilhelm: Hmm

Rayna Neises: are you almost.

Lana Wilhelm: mm-hmm.

Rayna Neises: Over involved in this, daughter, you should let him talk. And it’s like, oh, but you don’t understand. He can’t answer those

Lana Wilhelm: No.

Rayna Neises: He’s not taking care of his own meds. You know, all those things are needed for assistance. So it can be really tricky.

Lana Wilhelm: Completely. Yes.

Rayna Neises: Share with us one [00:10:00] story of when God really showed up for you in your caregiving season.

Lana Wilhelm: When I was open, initially I think he was showing up a lot, but I was so angry and upset that I could not see that, it would be people are like, oh, we’ll pray for you. And I’m like, oh, thank you. But in my mind I’m thinking, well, why did he do this?

Why, why are you even wasting your time? Um, and I. I just didn’t, I, I was so angry. And I thought, please be patient with me because I’m not patient with you right now. And that was something I had never felt before. I, I’ve always felt like I had a strong spiritual life and you know, if, if anything was thrown at me, but, you know, sometimes God pushes you into things that you’re like, you. You just don’t know how to handle, but he’s there to help to handle it for you if you open it. So I think the moment came for me is we had had, oh gosh, several really bad days at the intensive care unit. And I remember coming home, and [00:11:00] pulling into the garage and I just fell to my knees and just cried and was angry and upset and at God. And I’m like, why are you doing this? You know, come on, where are you? I need you. And I realized I was trying to manage God. I was trying to tell him what he should do.

Rayna Neises: Yes.

Lana Wilhelm: And, and so I kind of got it just all out of my system. And then I remember going upstairs, taking a shower, ’cause you know, you’re all a mess. And, just feeling the sense of peace, like, okay. You had your temper tantrum, you got it out. You’re still my daughter. Let’s make this happen. And then I felt more at peace and it wasn’t, anything that was a lightning bolt by anything, but it was just that. I just was able to really let it out and I remember going to, a couple days later, I’m Catholic and I had gone to confession.

I’m like, I was really mad at God. I was saying some really bad things [00:12:00] and. Just kind of laugh. He said, you know, Lana for years and years, I know you’ve been praying to have a more personal, intimate relationship with God. He goes, welcome. You know, I’m like, oh, yeah. So I think that was the moment for me. It had to be, I had to hit like rock bottom and just be, but I think that’s what I kind of, gave up my control and realized I had none and, and handed it over.

Rayna Neises: Yeah. Yeah. Thanks for being real about that because Lana, that is one of the hardest things, I think all of us, I haven’t met anybody who caregiving doesn’t reveal what a control freak we are.

Lana Wilhelm: Hmm.

Rayna Neises: We don’t realize how much we’re holding onto that control or that illusion of control until it’s so far out of our control, and I think that’s scary. But it’s also one of the beautiful things about having faith in [00:13:00] walking through a caregiving journey is the fact that our faith can let us let go and let God and have peace. If I didn’t have God, I would be fighting for control so much harder. I already fight really hard for control, but man, I can’t imagine it without letting go and really trusting and knowing that God’s there for us and being able to

Lana Wilhelm: well. And I think, you know, in all honesty, I get up in the morning, I say my morning prayers. I’m like, okay, we’re in this together. Let’s go. And, but I’ll be honest, I am human.

Rayna Neises: Mm-hmm.

Lana Wilhelm: Not divine by any stretch of the imagination. So I frequently hand it over and then take it back and then hand it over. I’m like, you know. I would’ve handled it this way. And, one of the ladies in my Bible study, we were laughing about it. She’s like, I tell you, He is very difficult to manage

Rayna Neises: Yeah, and he never reads the suggestion box, does he?

Lana Wilhelm: No. And [00:14:00] chuckles at our thoughts. Yes, exactly.

Rayna Neises: Yes. And I, I love that because again, just being really honest, there is nobody listening today who doesn’t completely understand what that’s like and hasn’t done the same thing. The give and the take, I always think that we see growth in our journey when we actually leave it with him longer than just five minutes.

Lana Wilhelm: I remember, sitting in church one day just by myself and I was like, okay. They always say, why do bad things happen to good people? Or, He only gives you what you can handle. I’m like, okay, so what’s the deal? Because I’m like, I don’t think I’m doing this very well.

And that’s really when I kind of got that inspiration of, I’ve given you these gifts, I want you to share ’em. And I didn’t really know what that meant. And then, it just kind of every time I was like, I can’t do this. This is too much. He would provide support,

Rayna Neises: Mm-hmm.

Lana Wilhelm: The book kind of came from a neighbor down the street [00:15:00] who identified that I needed support, who I’ve not really talked to all that much, but came into my life. I just went into the hospital to say, I think I really would be beneficial for people to get this book, and I think it’d be beneficial if I could talk to some of the patients.

I did not make an appointment. I did not do anything. It just kind of came in and I went and, and they were open to it, and so I was like. But it seems like every time I take a couple step forward, you know, I feel like God’s pushing me. Like, okay, alright, let’s go a little further.

I know he knows the big picture and I know he knows where it’s gonna end, but the whole way through, you’re constantly like, are you sure? Are you sure I’m the one? And again, he shakes his head and says, move along little one.

Rayna Neises: I love that. What would you offer, words of wisdom for somebody who’s just in the beginning of their journey?

Lana Wilhelm: no emotion is wrong.

Rayna Neises: Hmm. I.

Lana Wilhelm: No emotion is wrong. It may feel like maybe it’s inappropriate at the time. Like I, I think feeling grief, [00:16:00] you know that even though that your loved one is alive, it’s the grief of everything that’s happening, or it’s okay to be angry with God. He’s got big shoulders. It’s okay to laugh at silly things that other people may think is inappropriate.

No feeling you have is wrong and there’s someone out there. At least 10 other caregivers, I can guarantee you that either have felt the same thing, laughed about the same thing, or done the same thing. And so you are not alone. So no matter what you’re feeling, no matter how hard you are on yourself, you’re not alone.

And that’s why I think like yourself and myself, we want to help someone get through that phase because it’s not fun. It’s not fun.

Rayna Neises: Yeah. I think that’s why it’s also so important to get outside of your own isolation with caregivers. We love our family. We love those that have supported us for [00:17:00] years. Those relationships are really important. Don’t give up on those. But you need new relationships with people who really get it

Lana Wilhelm: Mm-hmm.

Rayna Neises: they will understand at a level that no one else will. I think caregiver support groups or finding that friend you go and have coffee with who’s walked, caregiving also can be such a valuable part of being able to just do caregiving well for yourself and for the person that you’re caring for.

Lana Wilhelm: Well, and I think too, when you’re a caregiver, sometimes you just wanna laugh with someone that understands you really love this person and you would do anything for them. For example, having lunch and be like, do I really have to pick ’em up from rehab? You know, you yeah.

They’re like, yeah, you have to like, oh, you know, that kind of thing. It was an interesting, thing. I, I was down in, New Orleans for, The Stroke Convention. And when I was down there, it was so interesting. I met a, a young woman, she actually talked to our whole group. She was, had just had her stroke about, oh gosh, maybe a year ago.[00:18:00]

So she was kinda in that newer phase and her mom was with her, and she’s the caregiver. And so she stood up and she said, the thing I struggle with the most as a survivor is I feel like I’m a burden all the time. Everybody’s like, oh, yeah, yeah, yeah, I understand that. And she’s like, I’m curious what caregivers think.

And what I shared with the group was if there’s something you’re not able to do, that you can’t do because of your stroke or cancer or dementia. You are not a burden. I am more than happy to do any of that for you. You’re a burden when you’re able to walk from one room to another and you choose not to.

Rayna Neises: Yep.

Lana Wilhelm: a burden when you have to go to rehab and they say to work on this and you refuse to.

Those are, I said, it’s a team effort. We’re trying to get away from caregiver to more care partner, where you work as a team. And so that’s really when we feel like you’re a burden is when we’re doing everything we possibly can and you’re fighting us constantly with it.

And it was [00:19:00] really cute. Her mom, everybody was like, start to clap. Her mom goes, you go, girl, it was so cute. I could see every caregiver in the room was like, mm-hmm.

Rayna Neises: Yeah, you put some words to something that everybody was feeling. Yeah, that’s good. Yeah, that’s, and I think there is, that’s part of the benefit of being around other caregivers is that there is that understanding that goes deeper than just sympathy. They actually have experienced it and they know, so what would be one thing that you do to live content, love well, and care without regrets.

Lana Wilhelm: I think what I’ve done since, my little argument with God, I try to identify three things every day that I’m grateful for and, something that I’m grateful for me, something that I’m grateful for Rick, my husband, but then some way that God touched me that I’m grateful for.

the other day it was, one of the women in the Bible study shared a really. [00:20:00] Wonderful story of someone and, and I don’t wanna share that, but it touched my heart and I’m like, huh, okay. God, I get it. Her telling her story touched me.

Rayna Neises: Yes.

Lana Wilhelm: So I try to look at those three areas, like, okay, what am I grateful? For today. Um, you know, and then what am I grateful that Rick was able to do today? Or, that is bringing us closer and that I think, has helped me the most. And the other thing, I know it’s only one thing, but the second thing is I frequently have to tell myself, probably every hour. Okay, we’re in this together. I trust you. I’m not quite sure, but I trust you, someone once told me it’s better to talk to Jesus because if he doesn’t listen you can talk to his mom. She always understands.

Rayna Neises: Yeah, I think that’s so important. Gratitude is something that we don’t really understand how powerful it is. I love brain science. And brain science has just kind of exploded in the last five to ten years. And one of the things that we’ve learned is it [00:21:00] truly is the way that God created our brain. That what we focus on, we see see more of, and I think people can relate are looking at that car, before you buy that car, you think, oh, there’s not very many of those around. And then everywhere you turn around, somebody has your car, right? And so it’s not because there’s suddenly more cars, it’s because you’re suddenly more aware of the cars.

So those blessings are the same way. The more that we focus in on, the more that we train ourselves to notice God’s faithfulness in the little and the big ways, the more that we see it, it’s just right there. And it’s kind of like, how have I been missing it all this time? Because it has always been there, but we really have to train ourselves to look for it, especially those times when we’re living in crisis because He also created that amygdala that’s supposed to protect us. And it is always on high alert if we’re feeling unsafe. And so sometimes I think as caregivers, that amygdala can be triggered so often that we’re not thinking logically, that we’re only thinking primally [00:22:00] to save ourselves or save our loved one.

It can really wear us out at a whole different level. But learning to. to really spend the time in every day looking for those things to be grateful for. And I love you are specific. I think the more specific we are in what we’re looking for, the easier it is to see it. So that that’s a really great plan to look for

Lana Wilhelm: Well, I mean, you know, when, when you know, before the stroke, gratitude was always something big happened,

Rayna Neises: mm-hmm.

Lana Wilhelm: and then I think after, like the stroke and after whatever, all of a sudden those little things are the big moments. I remember the first time Rick was able to stir his coffee without, you know, going all over the place, and we were both so excited.

We, in a million years, we would’ve never been excited about that, ever. You know, I mean, and then, but you think, wow, that is a gift. So I think you start to look at really, instead of all waiting for that big moment, like, burning bush or something, it’s not gonna happen, but the stirring of the coffee will.

Rayna Neises: Yes. Yes. So good. Our time is gone.

Lana Wilhelm: [00:23:00] Oh, I know.

Rayna Neises: ahead and share

with us a little bit about your book and where people can find resources and stay connected with you.

Lana Wilhelm: Oh, I would love to, first off, the book is available on Amazon, There’s two of them actually. There’s stroke and the spouse, and that was originally, just my journey with my husband focused on that. First caregiver. The second one is, stroke and the caregiver, which really incorporates more, adult children. More questions answered based on my experience of walking through the hospital talking to over. Gosh, I’ve talked to over 2000 caregivers, in the last few years. It kind of, their questions they came up with. And then we develop, it’s called Stroke Caregiver Connection. .

Hopefully March 15th we’re gonna have a new look and, and easier to navigate. So together we’re developing that. But I think, Stroke Caregiver Connection, I highly recommend, the two books. They’re available on Amazon. So they’re pretty easy to get. But no, that’s, that’s probably the best way.

And actually I’ll be working with the American Stroke Association, they’re interested in [00:24:00] doing more with caregivers, so I’m hoping that you’ll be hearing more about that and what we’re doing together.

Rayna Neises: That’s great. Yes. Getting the Associations involved helps to just kinda spread the word and the support, and I think that’s so important to be able to get the different resources out to caregivers. So if you’re living and caring for someone with a stroke, definitely check out Lana’s information. You can again find her books on Amazon. Or at the link on our show notes page, I’ll link both of those and her new website. As that gets up and running, you’ll be able to go and visit and see what great resources she has available for us there. So thank you so much, Lana, for being here today.

Lana Wilhelm: It was just so much fun to not only share my caregiving journey, but my caregiving journey with God, with you. And I think that’s just so important. If you don’t have the physical, mental, and spiritual all working, it just doesn’t happen.

Rayna Neises: Definitely we know that it’s such an integral part. We wanna talk about it because so many times I think that’s the [00:25:00] piece that we aren’t talking about is that spiritual side. Because like you said, the question’s there, why did this happen?

Lana Wilhelm: Mm-hmm.

Rayna Neises: If we stay in the why And we don’t have the support to keep searching and keep talking and have those hissy fits when we need to with the Lord, then we don’t grow closer to him. Rather, we allow these crisises to push us away from Him, and we know that’s not what he wants.

Lana Wilhelm: Absolutely.

Rayna Neises: Thank you for joining Lana and I for Stories of Hope on A Season of Caring Podcast where there is hope to live content, love well, and care without regrets. If you have legal, medical, or financial questions, be sure to consult your local professionals and take heart in your season of caring.

*Transcript is an actual recount of the live conversation