Caregiver Tap In: Supporting Stroke Survivors with Aphasia Guest Charles Cauthorn

 Stroke recovery does not happen alone. This episode brings Angie's husband & care partner Kiehl Cauthorn into the conversation for an honest look at what aphasia support actually requires. Together they break down the difference between a caregiver and a care partner, walk through the stages of care in post-stroke aphasia recovery, and address the real work of advocating with insurance companies on a survivor's behalf. Speech-language pathologists and practitioners will find concrete tips on how to include the care partner in the therapy room, not as a bystander but as part of the recovery team. For survivors, this episode carries a message worth holding onto: you are better today than you were yesterday, and you will be better tomorrow than you are today. For care partners, the reminder is just as direct: stop, listen, be patient, and trust. For care partners, SLPs, stroke survivors, and anyone who has ever wondered what it takes to show up for someone rebuilding their language after stroke. Does it take a village to recover from a stroke? In this episode of Brain Friends, we talk about aphasia support with Angie's care partner Kiehl Cauthorn. 

We discuss the difference between caregivers and care partners, the stages of care in post-stroke aphasia, and advocacy with insurance companies. We give tips to speech-language pathologists (SLPs) and other practitioners on how to include the caregiver/care partner in therapy. 

Finally, we remind aphasia survivors that "you are better today than you were yesterday and you will be better tomorrow than you are today".  We encourage caregivers and care partners to "stop, listen, be patient, and trust". 

https://aphasiaadvocates.com/ for Brain Friends Merch

https://aphasia.org/event/ask-the-expert-february-2026/

https://www.cognitiverecoverylab.com/seles

https://aphasia.org/stories/announcing-the-davetrina-seles-gadson-health-equity-grant-program/

Our beloved colleague, Dr. Davetrina Seles Gadson, passed away January 11, 2025. Dr. Gadson was an extraordinary speech-language pathologist and neuroscience researcher who devoted her energy to studying health disparities in aphasia recovery. She was a fierce advocate for improving services for individuals with aphasia, particularly Black Americans. Her research transformed our understanding of these health disparities and shed light on how we can address them. We were privileged to have Dr. Gadson as a cherished member of our lab community for four years, first as a postdoctoral fellow and then as an Instructor of Rehabilitation Medicine. She was still a close collaborator and friend to many of us at the time of her passing. Dr. Gadson was an incredible person—compassionate, inspiring, and full of life. Her dedication to advancing equity in aphasia recovery and her profound impact on our community will never be forgotten. ...

Transcript

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SPEAKER_01 0:00

Welcome to Brain Friends, where two neuronerds talk all things aphasia, language recovery, culture, and community. I am Dr. Datrina Celeste Gatson, a clinical speech language pathologist and neuroscientist.

SPEAKER_00 0:13

And I am Angie Cawthorn, stroke survivor and aphasia advocate. Welcome to our show. Welcome to Brain Friends.

SPEAKER_01 0:24

We want to thank all of our listeners for downloading the podcast. We appreciate everyone listening. So please tell a friend to tell a friend that we are here. And we are. Hey Angie. Dr. Celeste, hey, what's going on with you? How are you? Look at us in the house. We are recording live right now in person. So excited. And we have a special guest. We do. It's my baby.

SPEAKER_04 0:53

Hey. Hi, everyone. It's my first time. Be gentle. All right.

SPEAKER_01 1:00

Hit them with the elements. Alright, we'll go ahead and introduce, and then um we'll get into an icebreaker.

SPEAKER_00 1:07

We you know we gotta do them icebreakers. So, but everyone, I would like to introduce Mr. Charles Kill Cawthorn, my husband and my care partner. And today we're gonna be talking about uh the life of a care partner and why that's important and the difference between care partner and a caregiver. Mr. Charles Cawthorn, will you uh say something nice to the people?

SPEAKER_04 1:34

Hello everybody. My name is Charles, but I go by Keel. I take either one, it doesn't matter, just don't call me late for dinner. But there we go. I am honored to be a guest on the podcast. Uh of course, I've seen and heard this podcast since the conception, and it's I've just been waiting my time. So I am ready. We're gonna do this today. Let's do it.

SPEAKER_01 1:58

All right, let's do it. Let's get into an icebreaker. Are you ready? Yes. All right, um, let's start with Angie. All right. Would you rather be invisible or be able to read minds?

SPEAKER_00 2:14

I'm gonna go with invisible because if I'm invisible, uh, I can hear what you're saying. So I don't have to read your mind. I don't know what you're saying. Okay? Okay. You ain't gonna be hide nothing from me. And I'm in here like, yeah, like, mmm, I'm out.

SPEAKER_01 2:32

I'm a genie in a bottle.

SPEAKER_00 2:37

Uh-oh.

SPEAKER_01 2:38

Okay, um, uh, Mr. Keel. And I just wanna say the spelling of your name is K-I-E-H-L. Correct. Okay.

SPEAKER_04 2:49

Not the E I.

SPEAKER_01 2:52

Okay.

SPEAKER_04 2:52

And the reason why is because of uh the American pronunciation versus the European pronunciation. My name is German.

SPEAKER_01 3:01

Oh, I was born in Germany.

SPEAKER_04 3:03

Oh, see, here we go. This is this is gonna be alright.

SPEAKER_01 3:06

Wow. Okay, what about you? Would you rather be invisible or able to read minds?

SPEAKER_04 3:13

I think I would rather be able to read minds. You know, um, because at that point in time I could tell, usually you can tell what people are thinking by their um nonverbal communications, the way they fold their hands or something like that. But uh a lot of times you're I'd rather read the mind to know exactly you didn't mean that. This is what you meant. You know, and to know exactly truly what you're what you're trying to uh convey here. So I would rather read the minds.

SPEAKER_01 3:44

Okay. And what about you? I agree with Mr. Keel. I would rather be able to read your mind. I low-key feel like I can already, but I think it might be the energy. So I can tell kind of like if the energy is off, and um yeah, I think if we get close enough, then I can naturally start to read your mind. So you want to vibe check?

SPEAKER_00 4:08

Yeah, check the vibe, and first of all, how's the vibe at the crib?

SPEAKER_01 4:12

The vibe at the crib is nice, it's very the feng shui is amazing. Welcome to Laurent's tale. Yeah, so I'm in New Jersey, y'all. We doing this here at the lobby at the court on great friends, yes. Well, I'm excited to talk about caregivers today and or um care partners. And so I guess maybe let's start our off by me asking you, Keel, do you consider yourself a caregiver, a care partner, and you know, a care supporter? What do you consider yourself and then if there's a difference between them?

SPEAKER_04 4:57

Okay. All right. Um, I started off with uh considering myself as a caregiver. Uh and as this journey has happened for me in the past, it's been seven years, come come next month. Um I consider myself now a care partner. And what was interesting is knowing that when we were going to do uh this today, I wanted to define the differences between the two and then come up with why I feel that I'm a care partner. So uh you ready for this for me to go down that pike?

SPEAKER_02 5:32

Yeah. Okay.

SPEAKER_04 5:34

All right. So I did check and ask for the definitions of what is a caregiver versus a care partner. And the definition comes up as a caregiver is an individual who provides assistance, support, and care to someone who is unable to fully care for themselves due to age, illness, or disability. Caregivers often help with activities of daily living, such as bathing, dressing, feeding, and medication management. They may also provide emotional support, companionship, and help with household tasks. Caregivers can be family members, they can be friends, or hired professionals who play a crucial role in ensuring the well-being and quality of life of the person they care for. That's a caregiver. That's a tall order. But a care partner is just as tall. So a care partner is similar to a caregiver, but emphasizes a more collaborative and equal relationship between the person receiving care and the individual providing support. A care partner recognizes the importance of mutual respect, communication, and shared decision making in the caregiving process. Unlike a traditional caregiver, a care partner acknowledges the expertise and preferences of the person they are caring for and works together with them to develop and implement a care plan that best meets their needs. This approach promotes a more inclusive and empowering dynamic where both individuals actively participate in the care and support process. I am a care partner.

SPEAKER_01 7:30

Okay, yeah, you are. Do you feel like you shifted? Well, I guess you you said that you shifted from being a caregiver to a care partner, and is that because Angie improved?

SPEAKER_04 7:47

That's a good question. Very good question. Um I have to say yes. Through the grace of God, Angie improved and our journey, we worked well together. Uh, but it also um leans to the fact of our relationship to each other. Uh so it sort of helped me uh to know that I needed to help her and in those different aspects that needed it. So I would say um becoming that care partner was also part of our journey to be uh where we are today.

SPEAKER_01 8:20

And then Angie, you jump in because you know I've got a list of questions.

SPEAKER_00 8:26

Well, my thing is when I first had the stroke and I was kind of, I want to say waffling, but I was all over the place. The most common thing was to know I could count on him in a way that I didn't have to worry about anything because I knew I had a partner, I was married to a man that could carry that load. And that's was that's just a tremendous weight taken off of me. Like them, I often talk about the time we were, he was helping me get into speech therapy, and it was hard for them to make it make time for me at the doctor's. They weren't, it wasn't being scheduled. And we were in the Wawa parking lot, and he just got on the phone and was like, no, that's not right. This is and he works in in the insurance industry, and that really helped him to, and also he went to school to be an SOP at first. So, you know, shh right. Him him and Charles Ellis would have been hanging out. You know, everybody thought he was Charles Ellis at a conference, really, they kept thinking he was Charles Ellis.

SPEAKER_01 9:46

Shout out to Dr. Charles Ellis at the University of Florida. What's up, Dr. Charles? Well, you mentioned something that I want to know, Kil, how did that play a role? You know, the point that you did have the background knowledge in insurance and your level of education, how did that play a role for you to be able to advocate for Angie? And do you feel like individuals that may not have that background, is it more challenging for them?

SPEAKER_04 10:23

I think it is more challenging for them because what happens here is you know from the insurance background that you're going to need certain levels of therapy, not only speech therapy, but also occupational therapy, um, and those type of things that need to connect. Um, the one thing about the insurance company or insurances is that insurance companies usually give you a limitation of uh how much you can have, uh how many weeks for occupational, how many visits for therapy and speech and occupational therapy and and those type of things. But you also need to know that depending on the type of plan that you have for the uh medical insurance, always makes a big difference as to how much or what the level of benefits that you are gonna have. So to have that knowledge was important to us, uh, but for those care partners or caregivers that are there who do not have that knowledge, um, there there sometimes is an aspect where they're thinking of, well, I don't know that, and I can't I can't do that, so I'm just gonna give in. But the answer is don't give in. The answer is to keep pushing forward and always know. There are the three therapies that you need the occupational therapy, you need the speech therapy, and you also need physical therapy in reference to making you whole again or at least as close as you can be.

SPEAKER_00 11:49

How can caregivers support a stroke survivor with aphasia in improving their communication skills? Like, what was uh what was what did you feel as was the most helpful thing that I know what I think was, but what what would you say is the most important thing that you did to help me within my communication skills?

SPEAKER_04 12:17

Let me see. Um first thing and foremost was to listen. Now, when we went through your onset for the stroke, aphasia kicked in and the language was not there. But the communication was within your nonverbal communication of things that you were trying to say. So I had to learn how to listen to you and be patient and also trust that we would know and know where to go and how to go into uh your your therapy sessions. So listening is the first and foremost, and to be patient. That's the one thing that I did learn in reference to that. Being patient was the biggest thing and the hardest thing because you always want to talk to that person and try to help them through their communication and their words and what you're thinking that they're trying to say. Uh and it became important then because uh as I wasn't being patient at that point, you became more frustrated. Uh so it so I had to learn to come back off of that and trust that you will communicate and I will be able to communicate nonverbally with you and know what you're trying to say, listen to that, and know that I can now communicate to the practitioner and say what you mean. Because they're hearing the same thing I'm hearing. The words that you're trying to say, they don't know exactly what you're trying to say, they don't know the connections of what you're trying to say. Uh so that becomes important at that point, too, for the care partner, the caregiver to stop, listen, be patient, and trust.

SPEAKER_01 13:55

I like that. Stop, listen, be patient, and trust. Uh in that, Angie, what are some of the things that you felt as a survivor you had to trust your partner, your caregiver to do for you? Besides, you know, maybe like taking care of you or you know, some of those uh activities of daily living, but like just you showing up, what were some of the things that you had to trust that he was going to have your best interest?

SPEAKER_00 14:29

Everything I had to relinquish it all. And that was hard. That was really hard for me. Um, just based off the a-type personality that I've I was born with, that was really hard for me to just give everything over, and but I am in a position that I have a partner that I can trust that I know is smart enough to handle everything, and be able to say, okay, I mean, but there was I really didn't have a choice. So I'm the fact that he could was a bonus, but my options were were nil. So to be able to trust and know that and just say, okay, well, even when it was things like I wanted to do things, and he would say, uh, honey, I don't think you should do that, I would say, okay, you know what? I'm gonna trust that you're telling me the right thing. That you wouldn't tell me not to go to the store if I shouldn't be going to the store. Like you're not gonna tell me not to go shopping unless there was a reason you really thought I shouldn't be going shopping. And I do trust you enough to take your word for it. So that gave him the he's in charge. But it was definitely uh a shift in because normally you're in charge. I don't know.

SPEAKER_04 15:53

Well, well, let's wait a minute.

SPEAKER_00 15:56

Well, you don't mean I gotta lean here and getting on 295.

SPEAKER_04 16:08

A type.

SPEAKER_00 16:10

No, it was definitely a uh definite shift in that way of how we would communicate with each other, and even when the doctors couldn't understand anything for me, I could always look at him, and we were always well connected to be good.

SPEAKER_01 16:31

Okay, yeah. Um, Kill, what advice would you give to speech language pathologists, SLPs in helping the caregiver as well? And I ask that in the frame of sometimes if individuals have severe aphasia, so like your global or your broke's aphasia, then therapy not only treats the individual, but it also the responsibility of the SLP is to work with the family as well. And so, in my experience, sometimes it could be challenging because the family, you know, is there with the individual 24-7 where I'm only with that person for an hour. And so, do you have any advice for SLPs?

SPEAKER_04 17:27

Yes, I do. Um, there are two flavors to that particular uh uh question and that and that answer. So, to the SLP, the practitioner, um, know that these people that walk into your office that have just had the onset of uh stroke, and also their family caregivers or care partners, this is a brand new world for them. They do not know what's next. You know, um for for the survivor, their mind is still in a free fall uh in reference to what just happened to me, you know. Uh for the care partner, caregiver, they're also in that same free fall as to, oh my God, what's next? What do I have to do? I gotta make sure I gotta protect, I gotta do this, that, and the other. Um, so to talk with the actual practitioner, SLP, uh, or neurologist, or or uh whoever the practitioner may be at that point is to explain to them as to uh, I need to know how I can help. Uh what I did was we had homework. Angie would bring home some homework.

SPEAKER_01 18:32

Homework, see, that's what I've been telling y'all about. That homework. Sorry. Well, right?

SPEAKER_04 18:40

And but the point was though, uh, to the person who is the survivor, um, they have to remember that you're you're in building blocks. Uh you have to start off slow and then you can run. Um, and in Angie's aspect, it it was sort of, she did not want to be, she's like, I'm uh I can't believe that I'm not reading well, or I'm doing, I can't add arithmetic, etc., all escapes me at this point in time. And I'm not reading and taking that book home that says that I can't I can't add one and one equals two. Um for the caregiver, care partner, it was my responsibility to say, honey, let's try this, you know. Um, and then you get the actual part where the survivor says, you know what, I'm not doing that anymore. Uh I'm I'm really embarrassed. I don't want people to know that. And it's up to us to continue on, maybe stop pushing right now and come back to it. That's been my mantra for a lot of times. Is there's always another way. Well, sometimes it's there's always another time to ask. So be up front with the practitioner, SLP, let them know what you're going through so that they can uh uh make their program to uh address you and also the survivor.

SPEAKER_00 19:53

That is excellent stuff, babe. Um, and I will also say there was, I remember when we were to our first uh um time in um in how we were in tune, and we saw a couple that wasn't. And we were tell the story, honey. How do you see I'm struggling?

SPEAKER_04 20:16

Well, you know, I'm being patient and waiting for you to say, okay, that's how this works.

SPEAKER_01 20:23

That's how this works. I let you too. I actually like that though, because oftentimes one of the things that I have coached caregivers in is not finishing the sentence of the person with the phasia. Right. And so that's so beautiful that you waited for her to, you know, say, okay, help me out.

SPEAKER_04 20:45

Yes. So um Angie and I found out through our SLP that there was a um a phasure work group. And our first onset was like, we're not going. You know, and Angie's, I don't want to go to anything like that. And we decided, well, maybe let's just check it out and see what it is. Um, so we went there and he took off work and took me. Yeah, I had vacation time, and there was no vacation time other than you are my vacation, let's do this. Uh, but we went there to the work group, and in that work group, there was a uh new couple that came, and this gentleman had just came out of the hospital, had bad aphasia, uh, his wife was there, and he was trying to say things, and he kept looking to her, and she sort of, and I call it my connection, she sort of was not connected just yet, because it just happened. Um, you know, uh, I figured it out with Angie that there's a lot of times that I can follow her path and know what she's trying to say at that point. But to other people, it takes time. And it is really disheartening when you can't figure out what your loved one is trying to say at that point. So that was a work group that definitely helped us because there were other people there that had the same thing going on. But we were to the point where everyone's at a different level. But it was a work group where we could feed off of each other at that point in time. So that was one thing to say if you can find a work group, go to it.

SPEAKER_00 22:11

A support group.

SPEAKER_04 22:12

A support group, go to it.

SPEAKER_01 22:14

Now, not to get in y'all's business, but one of the things that I sometimes hear is the part of the frustration with individuals uh in the household is that you go from a two-household income to a one-household income. And you know, you had mentioned taking vacation, you know, one individual still has to work, one individual is in recovery. How did you guys navigate that? Was that something that was a challenge, you know, just that shift in household dynamics? If you want to take it?

SPEAKER_04 22:54

Absolutely, you too.

SPEAKER_00 22:55

All right. It was definitely a um, I had just made it to what I call the high-stakes middle round of my financial. I just got there. And uh, luckily for me, and I will support this and tell people all the time get the extended insurance that your job provides. You gotta, it's it's so important. Long-term disability is saving the day up in here, okay? Um because we had good credit and I knew how things worked. So um, you know, we just locked everything down and we we uh made sure that we didn't overspend and we we really took a look at our finances to put ourselves in a position that this wouldn't uh completely collapse us. But uh between uh long-term disability and having good credit makes a lot of things uh easier uh in in the way that goes.

SPEAKER_04 23:58

Now, just to add to that though, from a care partner's perspective, it was important to know that, oh God, everything that that you handle, now I gotta handle. And I have an analogy that I use and still to this day, is that I sometimes I feel like a spring. And when you have a spring and you put a ton of bricks on it, eventually the spring gets used to the weight and the bricks start to rise up off of it. Uh, and that's how I look at life at this point. So Angie having this episode at this point was that ton of bricks that hit us. Uh, and eventually, as I started to get picking up all the pieces and being able to handle not only the work, but yes, the you know, the bills, the things that are going through financing, you know, at that point in time, uh, it was a lot, you know, and it still is to this point. So I don't want to make anybody think that it's easy. It is not. Um, but it's just something that you finally get used to when you start to work with it, and it becomes part of life, and you make it. Yeah, and you stay one with God. There's the answer.

SPEAKER_00 25:00

Yeah. And I used to do the bills, um, and then I he calls it nonsense because I had all these passwords that were up under shot, that were up under my blotter under my computer. And it was just all these passwords, and I knew where everything was. But then I had to kind of just off everything on him. So he made an Excel spreadsheet and he calls the file nonsense. I had to change that file now.

SPEAKER_01 25:27

I know now that uh password, honey.

unknown 25:31

I can't watch your password, honey.

SPEAKER_00 25:33

No, but it was um those type of things, and then all of a sudden I can't read, so now I'm not helping with the mail. I can't, those type of in those type of situations definitely put us in a different um in a different category. Um yeah, yeah.

SPEAKER_01 25:57

Well, before we get out of here, I just want to ask um Keel, do you have anything else that you would like to share from the caregiver, care partner perspective?

SPEAKER_04 26:11

Uh I say yes. There's one thing.

SPEAKER_01 26:14

I say yes. I say yes. I say yes.

SPEAKER_04 26:17

There's one motto that I've always used with Angie, and I think it's it's it's a nice analogy to people to take a look at and think about is uh you are better today than you were yesterday. And you will be better tomorrow than you are today. Have faith and move forward.

SPEAKER_01 26:39

Wow, I feel like that was the benediction. Wow, say that one more time though.

SPEAKER_03 26:49

You are better today than you were yesterday, than you were yesterday, and you will be better tomorrow. And you will be better tomorrow than you are today.

SPEAKER_01 27:00

Than you are today. That's beautiful. I'm the luckiest girl in the world. Yeah, how long have you all been married?

SPEAKER_04 27:06

I this June will be 25 years.

SPEAKER_01 27:09

25 years! That quarterpiece.

SPEAKER_04 27:14

Yep, yep, yep.

SPEAKER_01 27:16

Wow. And then I take it that you okay, I know where you gave the benediction, um, but do you feel like your closeness of your relationship helped you also navigate this?

SPEAKER_04 27:32

I say absolutely. Okay. Absolutely. Yes, he's my best friend. We were friends, best friends, and we're still best friends, and that's what it's all about. You you take your best friend with you all the way.

SPEAKER_01 27:44

I don't want to. I don't want not that. Not that.

SPEAKER_02 27:48

Wait, wait, wait, wait, wait.

SPEAKER_04 27:51

Oh, sorry, just edited out.

SPEAKER_01 27:57

Um that's so awesome. All right, well, Angie, you know, do you have anything? Do you have anything else?

SPEAKER_00 28:05

Um, I think we're good. Um, oh, as for um for also, I will say this. My care partner, which is my husband, I have my friend Tay, which has been insanely helpful to him. So shout out to Tay and how helpful friendships are absolutely important. Definitely go back to uh episode four. What about your friends?

SPEAKER_01 28:30

What about your friends?

SPEAKER_04 28:32

And we call ourselves the bubble.

SPEAKER_01 28:33

Will they stand around? Will they let you down in?

SPEAKER_00 28:39

Okay, the bubble. Okay, right. So the bubble is tell them about the bubble.

SPEAKER_04 28:44

Well, the bubble are the people that are around you that will help you through everything that you need and will protect you from those that will not help you.

SPEAKER_00 28:53

I love that. The bubble. Yeah, my I have I have, you know, and so your friends are important, and when the care uh partners are dealing with the practitioners and speaking for their person, um, you know, there may be a friend that that that kind of comes and hangs out and does the important work that's maybe, you know, like when my hair was looking crazy, Keel would say, uh, listen, can you come help her with her hair? And Tay has a joke where she's like, It's not about the hair. Right? Because it really wasn't about the hair. He was like, Will you come get your girl, please? Will you please come get your girl? And so those type of things are so important, and you know, people tend to discount it, but it really can't be discounted. It's really important. Um, and I just want to say on on our podcast, thank you, baby.

SPEAKER_04 29:49

You're welcome, baby. Anytime, anywhere. Let's do this.

SPEAKER_01 29:52

Well, thank you all for inviting me into your home, and I'm just so excited for um this opportunity to share the importance of caregivers and care partners.

SPEAKER_00 30:04

Yep.

SPEAKER_04 30:05

Alright, and I thank you for inviting me to share my experience.

SPEAKER_00 30:09

You know you done muscled your way in here.

SPEAKER_04 30:11

And and there will be strange.

SPEAKER_00 30:15

We'll have you back. We'll absolutely have you back. Alright. Bye.

SPEAKER_04 30:20

Take care, guys. Peace, y'all.

SPEAKER_01 30:24

Oh, and also I just want to thank so much. Well, Angie, this this is your house, your your home. But we have an amazing setup here. Lights, camera, action.

SPEAKER_00 30:36

And my man Tim Shepard, my friend from like 1982. Yes. And he took my wedding pictures. Like we go back.

SPEAKER_01 30:46

Well, Andy took some pictures of us too that we've been using for promos. So everybody needs them a Tim. And get yourself a Tim. Get yourself a Tim, part of the bubble.

SPEAKER_00 30:55

He's definitely, he's definitely Johnny on the spot. And that's my boy. So, yeah. Thanks, Tim.

SPEAKER_01 31:04

We hope you enjoyed this episode of Brain Friends. Please leave us a five-star review on Apple Podcasts for your favorite streaming platform. Also, make sure you subscribe to our YouTube channel.

SPEAKER_00 31:17

Brain Friends, the podcast.