Stroke Survivor Bootcamp with Dr. Phil: "Life as a Care Partner after a loved one has a stroke"

In this episode of "Stroke Survivor Bootcamp", Dr. Philip Lamoreaux, OTD, OTR/L, CPT, chats with Jamie Dominelli, who talks about what it's like to be a care partner after her husband, Gabe, had a stroke.

Check out Gabe's INCREDIBLE recovery!
https://www.tiktok.com/@gabedominelli

NOTE: Be sure to check out some of the helpful worksheets that can be accessed by clicking here, or by going to www.StrokeSurvivorBootcamp.com.

============

Hosted by Dr. Philip Lamoreaux, OTD, OTR/L, CPT, Stroke Survivor Bootcamp is a practical, hope-forward podcast for stroke survivors and caregivers, built to help you understand what’s happening, ask the right questions, and take back control one step at a time. Each episode blends real-world hospital and rehab guidance with clear, compassionate coaching so you can turn fear into a plan and progress into momentum.

For more information on signing up for a one-on-one Stroke Survivor Bootcamp session with Dr. Phil, just go to www.StrokeSurvivorBootcamp.com

Created & Produced by Christopher Ewing
Hang On to the Dream Foundation

Written by Dr. Philip Lamoreaux, OTD, OTR/L, CPT

Listen each week to the Stroke Survivor Bootcamp podcast with Dr. Phil, the OT Professor, where he will share with you practical tools, real stories, and the mindset to keep moving forward on your road to recovery! 

If you are a stroke survivor, sign up for one of Dr. Phil's Stroke Survivor Bootcamp sessions.  These sessions are proven to help stroke survivors regain more mobility following a stroke.  Just go to www.strokesurvivorbootcamp.com for more information.

If you are a stroke survivor, sign up for one of Dr. Phil's Stroke Survivor Bootcamp sessions.  These sessions are proven to help stroke survivors regain more mobility following a stroke.  Just go to www.strokesurvivorbootcamp.com for more information.

Transcript

SPEAKER_00 0:00

The comments expressed in this program are the personal opinions of the participants and not meant to diagnose or treat any medical condition that you may have. Please consult your doctor or healthcare professional before making any changes to your current medical routine. I am an occupational therapist and certified personal trainer with over 10 years of experience working with stroke survivors. And I am crazy excited. You know, you guys probably get sick of me saying I'm excited every week when I get to bring somebody on, you know, to the show. But this one I am uh very, very excited about because we are going to get an awesome perspective, and you get to meet a really amazing person that I've been able to get to know over the past oh uh what is it's been about a month or so.

SPEAKER_01 1:25

Um bye and bye, yeah.

SPEAKER_00 1:27

It's it's been it's been a bit, but right off the bat, um Jamie uh is somebody that uh we connected really quickly and uh are we have similar ideas and similar perspectives. And I just I'm so excited because Jamie uh is actually the spouse of uh individual who has experienced a stroke. And in fact, it's even more than just a stroke. And so I'm so I don't butcher anything. I'm gonna turn the time over to Jamie. So, Jamie, if you can just give us just a little bit of background on who you are and then also tell us about you and your husband and and your story.

SPEAKER_02 2:07

Awesome. Well, thank you so much for the intro. It's been really great getting to know you as well and getting, yeah, just to talk through the story. So again, my name is Jamie uh Dominelli. I am the care partner to who I think is an absolutely wonderful human being, is my husband and who is a stroke survivor. Um, he had a stroke, a massive stroke over two years ago that was the big most impactful situation that occurred that caused him the most deficit. So my husband's story is a little bit I don't want to say unique in the fact because the more stories that you hear, the more people that you meet through this world, the more the unique stories that you hear. But he's been diagnosed with a um a terminal condition. So there's been a lot of uh things that have shifted over the past couple of years. As first we walked in, you know, walked in the door, and at that time he had just had a seven by four hemorrhagic stroke in his left frontal lobe. So he was immediately a phasic, he had right side hemiparesis, and at the time, at the time he was 37 and I was 34.

SPEAKER_00 3:12

So that's so young.

SPEAKER_02 3:14

Yes, and and that was, and I think that, you know, that is a large part of our journey, and I think we'll probably get to that, is there is so much stigma around stroke and that it happens to quote unquote older people, and I can tenuously have started to meet younger people, but it is still not the norm for the most part. So aside from having this huge bleed in our life completely being impacted, you know, it affected our social circle, it affected, I mean, truly every aspect of our lives because I have a video from that morning, and that morning we were singing happy birthday to one of our very, very best friends. It was February 8th. And at 10 PM that night, um, we were in a hospital and I had no idea what was going on. And um from that point, you know, I don't know, I won't get super long into our story, but from that point, you know, he was hospitalized for about a month. Um, his right side hemiparesis had resolved, but the aphasia and the cognitive deficits and things like that that have gone along, um, a lot of occupational therapy, a lot of speech therapy. We live in speech therapy worlds. He did have physical therapy has been a big part of our story, as well as Gabe's situation is when I say it's a little bit unique, is he has repeat hemorrhagic strokes. So the diagnosis they've given him um is not a happy one. It is it is one that comes with a lot of uncertainty um and a and a lack of knowledge, even in the medical world in general.

SPEAKER_00 4:48

So yeah, like that's that's part of like the the I mean I to me every every individual who has a stroke, their story is interesting. But this is just another piece to, you know, to just another individual's experience with strokes. You know, there's there's two things that have come to mind. I kind of want to take a little step back and go to, okay, so that morning, right? You guys are seeing happy birthday. Life is, you know, there was there's nothing in life at that moment that is that is uh suggesting, right, that something is gonna happen. And you know, you you you went to work, you went throughout the day, and then bam, it just it it starts, right? It starts. Um so what what were some of just you know, so for for those that are listening, you know, what were some of the signs that you saw that you were like, oh my gosh, I have to get Gabe to the hospital.

SPEAKER_02 5:45

So I didn't know the signs of stroke. I'm gonna be 100% honest. And I think even in that moment, even if I did, I think maybe I knew them way, way, way deep in the back of my back of my mind, but I wasn't it didn't, it didn't cross my mind. He was completely nonverbal. And but and I mean if you did, I even did a stroke test on him. So I guess I did know, but I wasn't cognizant of truly the magnitude of what occurred. The the fact of his brain bleeding was just not something that uh that occurred to me. So I, you know, he could stand, he could move his arms, he was I had him put his arms out, there was nothing, but he just kept like I can't I can't speak. And for whatever reason, that didn't make sense to me because he looked normal.

SPEAKER_00 6:36

He looked like he didn't have the facial droop, he didn't have you know the paralysis on the side of his body.

SPEAKER_02 6:43

But I happened to be with him now. Looking back now, I know I mean I was there the moment that that vessel in his brain popped, and so he did end up having a right side facial droop that lasted months and months, and all of those things manifested, but it was literally occurring as I was looking at him, and so those things were setting in, and nothing seemed weird except for he had tapped me on my shoulder and I was like, You can't talk. And it only took me a couple minutes just to be just to get to the hospital, but that was his first and only symptom.

SPEAKER_00 7:17

That's so crazy because you know, we have you know, there's the the signs and symptoms of you know, your facial drooping, arm paralysis, you know, speech being impacted, which you know, Gabe, that was happening to Gabe, you know, and you know, you got to get to the hospital fast, right? And you know, that it's just a another part that at least I find super um intriguing, you know, that every stroke, and it's just another example of how every time a stroke happens, it's completely unique to the person. It's not it's not gonna be the same for every single person. And so so as you as you have this, I still want to spend just a little bit of time on on your experience because I want I want people to get to know you, right? And your journey and where you where you're coming from. Because like so, how old were you at that moment?

SPEAKER_02 8:11

I was 34.

SPEAKER_00 8:12

And so you're 34 years old.

SPEAKER_02 8:14

Yeah, and to give you an idea, at the time, my husband and I, we were running a real estate business, and that has come back around since. But my husband was the um could sell ice to an Eskimo. He talked to people for a living. Yeah, you have to. That's what he does. I mean, if we were to go out to a restaurant, the you know, they'd be putting the chairs up. I'd be like, babe, let's get to the car. And he's chatting up the bartender and the waitress and the cook and whoever. I'm like, let's go. So that was very much him. And uh, you know, we worked, you know, we've been together now 10 years, so I guess about eight years at the time. Uh, we hadn't yet celebrated our second wedding anniversary.

SPEAKER_00 8:52

So we were so you hadn't even been married for two years.

SPEAKER_02 8:55

We hadn't been married two years.

SPEAKER_00 8:56

We've been together for a little bit longer.

SPEAKER_02 8:58

We were together for quite some time for about eight years, but only married about a year and a half, so not quite two years. And um, you know, part of our story, there's a lot of other personal things that come into our story with family and things like that, which further complicated it. But to give you an idea of where I was at mentally is you know, we could work together and do all of these things, but uh when that doctor, I can see it better now, looked me in the eye, and I can see his face, and I was so naive. And I wouldn't normally consider myself that person, but I was truly naive to the medical world, to the magnitude of what was going on, to it can complete and utter shock of the it is truly shock when you are one way one moment and the next moment you are not. So 45 minutes into this, I'm I'm thinking, okay, well, they're gonna transfer him to you of you from this smaller hospital, and uh okay, fine. And I'm looking at the doctor going, okay, well, when he's when is he coming home? And I can see his face going, uh, you know, just saying, I'm I don't remember what his words were, but as effectively is you are in for a longer road than I think you understand, ma'am. And less than 48 hours later, I had left the hospital. Obviously, uh my husband completely unconscious, not aware of what is going on. And I go home to pack him a bag. I get him boxers and socks and a change of clothes because we're getting out of here.

SPEAKER_03 10:27

Right. Right.

SPEAKER_02 10:28

And that truly the first 24 to 48 hours could not really conceive that the life that we were living was no longer going to be that life. And it was a it was a rude awakening.

SPEAKER_00 10:43

So, yeah, so as you're going through this, this this journey, I mean, how long was Gabe in the hospital?

SPEAKER_02 10:49

Uh, just shy of a month. So a month. A month. And predominantly a lot of that was stroke recovery, but the other portion of that was no one could figure out why. Um, such a young, very healthy person was not only well, and then once he got his scan back, they realized this was a very large stroke, but there were others that had occurred previously, and some other, you know, medical terms, superficial siderosis, different things like that that had occurred. And so at that time we were going through genetic testing. There was a slew of things going on because that was the scariest part. The scary part was a stroke, but the second scariest part was leaving the hospital not knowing why it happened and it couldn't happen again at any given moment, and no one could tell us anything. So he had a I say he and we interchangeably, you'll notice that. And I think that has uh speaks a lot to how a care partner plays a role in their survivor's life, is we were admitted to the hospital multiple times within the the upcoming year, another three weeks stint, a two week stint. Um, and especially with somebody who's uh you know uh global aphasia and then broke as aphasia. I mean, you're there 24-7 to advocate to make sure. I mean, you you he's he's gotta have somebody there all the time.

SPEAKER_00 12:11

So let's let's kind of go into that because um I mean I've I've mentioned a few times on the podcast just a little bit about you know aphasia. So aphasia is the uh is is a term, it's a medical term that you know, because we I mean you you and I've talked about this. Like when you got into the hospital, you had to learn a whole nother language. I mean, it's like trying to learn, you know, say Japanese or Arabic or something, because there's these big words that it's like, okay, well, I don't really know what that means, but these doctors and these nurses and they're just throwing this around, you know, as you're sitting there in the hospital. And so so let's let's talk about aphasia. So aphasia is uh a word that basically um it describes your ability to either say language or interpret language, right? So so when you say, you know, broke as aphasia or you know global aphasia, what what what do you mean by that?

SPEAKER_02 13:13

Yeah, so initially it manifested as we could not identify whether or not Gabe could understand what was being said to him, and he could not also verbally express it. For instance, for instance, in his neurological exams, they would come in and wake him up every hour to ensure that he was conscious and aware, and they would ask him a series of questions. Uh, he could not, if they asked him, is the year 2024, he could not, you could not tell based on his response if uh if he if he knew the answer. And so that could also be confusing. That was very confusing for me because I had thought that my husband was not in there. I thought that he had happened in a mental deficit that happened, but that wasn't the case. He just couldn't, his yeses and no's were mixed up, which is a part of aphasia. And so he so there is a period of time in that stroke recovery where it can be challenging to identify if that person is able to understand the words that are spoken to them or not. So those words can sound jumbled. So if I say I am going to school, somebody might hear school bear on the way. And I know that sounds crazy, but they will hear completely different words. Come to find out over time and through Gabe's healing when when everything's settled in, he can actually understand things that are said to him, and there might be need to be some modifications, but his verbal expression was uh completely gone, then limited, and then with ongoing and then intensive therapy, you know, uh comes back at a certain rate, right?

SPEAKER_00 14:53

Or it's it's coming back slowly, or maybe some areas a little bit faster, just kind of depends, right?

SPEAKER_02 15:00

But yeah, he's completely I he I was drawing him pictures and a picture of an eye, a picture of a heart, and the letter U. Because I didn't know what was going on in there, and I couldn't conceive the word aphasia.

SPEAKER_00 15:16

Well, because that just doesn't, again, it's a whole nother it's it's a whole nother language.

SPEAKER_01 15:20

True, yes.

SPEAKER_00 15:21

No, I I I really appreciate you sharing, you know, your your perspective and your experience. And you know, I one of the things that you know you guys that are listening, I mean it it may it may sound like Jamie is like a speech therapist or she's a therapist. I mean, sh I mean you could say that she pretty much is with all the speech therapy that she's attended and and other therapy that she's attended, but um, you know, I I love I love how invested you are in just trying to understand what's going on with your husband and trying to understand and you know the the process, and you've had to learn this language over time. And over, you know, it's been two years since it's been uh uh about almost two and a half years. Okay, so two and a half years. So over two and a half years, you're you do you feel like you understand the language?

SPEAKER_02 16:17

Now, yes, I do, but I will say one of the biggest things that I've learned, and that I heard another therapist say, is that if you've met somebody with aphasia, you've met one person with aphasia. So my husband is completely different than the next person that I'll meet. And I get the privilege of getting to learn how that person communicates. Now I've I've learned obviously skill sets and I've learned the art of being uncomfortable. And now I don't feel so uncomfortable when there is a communication barrier because I you learn um tools like being patient and being curious rather than uncomfortable. You know, you see a lot of people that will interact with somebody who's had a stroke, and I think they, since they're not exposed to that very much, they feel uncomfortable, uncertain. They're they're almost less worried about the other person and they're more worried about myself. Am I, I don't know what to do. Um, so I've learned to communicate with people just through exposure, not just to my husband, but through go going to all these different therapy camps and meeting other survivors and seeing how unique every person really is. So that's, I think, even more than my husband been one of the biggest learning um opportunities for me.

SPEAKER_00 17:33

Okay, so you're ready for this. So this this last weekend, we have we had uh uh three stroke survivors come to St. George to do a boot camp, an intensive boot camp. And I had two therapists that were coming to learn. And as we're going through this journey, you know, the therapists are spending somewhere around like uh about 8 a.m. to about 6 p.m. Yeah with these survivors. Now, these therapists haven't experienced that. What they've experienced is I see this this survivor for maybe um you know an hour and a half to two hours, yeah. And then and I'm teaching and I'm training, and then I give them off to to nursing, right? And it's not even in their environment. And there's there's this piece that you know, with what you were saying about like, you know, you get to learn, you know, your husband's language and you get to learn that's gonna be through all of this uh experience of actually being around him and trying to figure out in the moments when you don't have the therapist there and you don't have these people there. And that was one of the things that they you know, they were they these these therapists, they're amazing therapists. I like have so much, so much respect for them and they are they're awesome. But it just also goes to show the way that us therapists are actually approaching a situation. They the thing that they loved the most was that they got to actually see these survivors like just go out to dinner. Right. Like there were three survivors walking and going out to dinner, and these therapists, you know, and we're all just sitting at a table and we're talking, and we're talking like normal, right? Like a normal, normal human beings would talk. And for some reason, that is so hard for people to conceptualize and to like to look at and to be like, oh my goodness, like you know, yes, you've had a stroke, but that doesn't mean that you can't, you don't want to have normal conversations and you don't want to be looked at as like to look at you know normal. And you know, that's I'm sure that's something that not just from your perspective as the spouse, but also Gabe experienced something similar to that. Is that true?

SPEAKER_02 19:50

Yes, you mean about being interconnected and and that's really funny. I had I was you know thinking a little bit about this. Obviously, I knew we were gonna talk and thinking about support systems and family and friends, and you get to learn a lot about the people that are in your life when you go through something as life-changing as this. Everybody will know, so I'm not gonna touch on it much, is you'll get a really big wave at the very beginning. So many text messages that I can't possibly keep up with.

SPEAKER_00 20:20

And I just want to put a pause for this because I, you know, you you said everybody will know, but there are people that that are getting into this podcast that are just at the very, very beginning that have reached out to me. And so this is huge. So if you're just at the very beginning of your journey, what Jamie is is is uh like saying and about to say, like really listen up because this is so, so important for you. Just as you get your your mindset, you know, moving forward. Like I just I just wanted to I wanted to make sure that we paused and put you know, focus on this because I think it's so important.

SPEAKER_02 20:55

Yeah. And I I'll start by saying this everybody's family is different, everybody's social circle is different, everybody's interpersonal circle is different. So I think there's always going to be a variation. I would have considered my husband to have a very strong um familial circle and social circle. Myself, not as much, it's good, but his is rooted deep, child deep childhood friendships, everything that you would look at a person and say, now I want a community like that. And we have not seen the phone stops ringing, I'll put it that way. And I don't think it's because from what we've learned, is because people don't care. I think that that with our particular situation, if there is not, if there's not reciprocated, or um, you know, if Gabe is not initiating that conversation, as a care partner, we can often I've uh you know spent the time to uh help facilitate those relationships in the beginning. And I've found that there has been times where I've reached out and I and just to some Buddies and said, Hey, you know, Gabe's having a rough week. I'm sure that he would love just some extra encouragement. And people are happy to step in and help. I think part of them, you know, they don't know what's appropriate. Um, yeah. Gabe would also not respond due to his diagnosis of not being so he gave him a text message for a really long time for a variety of reasons. He didn't have the brain power. It was there's a variety of reasons. And I think human beings, it's important to remember that uh placing our expectations on the other people in our social circle may not, we may not get back what we what we think that they what they say that they're going to give may very be well be true in that moment, but the reality of reality of it coming to fruition is not always true. And it and for me to have grace for that person and realize they're a human being too, and that doesn't mean they're not a bad person, they're also living their lives, they're probably uncomfortable, unsure. I'm uncomfortable and unsure. I don't know for sure. And um, and to let them have a little bit of grace. And the biggest part, the happy part for us is being open to building a new support system. So kind of fun, we still have our old support system. If we really make a point to say, hey, let's get together and we're gonna be really intentional about this time, but we found our more daily touch points are weirdly people that we've met post-stroke and not necessarily in the stroke community, which is also weird. I think I thought our life was kind of over for a while there. It was just Gabe and I, and me and Gabe and Gabe and me, and we were gonna do this together, and and it can feel that way, but I will tell you there it doesn't have to be that way. It is very possible.

SPEAKER_00 23:51

I love that you brought up the fact that it wasn't just so so, for example, you you know, as a as you know, the care partner, you know, to you know, with your husband and you know, your husband having the the symptoms from the stroke and you guys going to all these aphasia camps, you find other people that are in the very similar or worse or better situations, right? And and you all can you all can uh relate to each other. That actually was in in just the previous episode. You know, I have three of these survivors that are just sitting around this table and we're talking and and just watching each one just relate and how how awesome that was. But that you also brought up the person who is uh who isn't a part of the stroke community, but because that was the first time they'd ever met Gabe or been a part of it, it's like they they they don't know who previous Gabe was. And so they are not trying to, they don't have this thing going on in their head of like, well, this is who Gabe was, but now this is Gabe, and it's like or or it's like it's almost like sad, it's sad for Gabe, and it's which it it is to a certain degree, but also bringing up a good point about that though, is that they don't have the two worlds in their mind.

SPEAKER_02 25:14

Correct. That all all everyone else is associated, whether you're a care partner or a survivor, because then people, you know, treat me, you know, are you which is good. I and it you appreciate the awareness, but it can be it changes the relationship. It's it's almost like a helicopter, it's overbearing. Yeah.

SPEAKER_00 25:32

That's that's something I've thought about a lot, where it's like, you know, I spent I spent three days with um with a stroke survivor, or I stayed in his house. His wife went on a on a little um trip to you know to do a baking class and stayed in a hotel so that she could have you know a moment. We're gonna talk about some of these things in a minute, but like to have a moment for her. And and I just in in sitting there with him, it's really, really easy to sit there and go, well, okay, you're not talking to me, because you can't, but you're not like initiating or having these conversations. I'm just gonna go off in my own corner, right? And I'm gonna do my own thing. I mean, I have all this stuff I'm gonna do. And then we'll we have our appointments here and there. And I am so grateful that at least the way that I see things is that no, like they want to have these conversations and they want to have it be normal. And so you just treat them, you just treat it normal and just recognize that there's gonna be moments where you're gonna have to be figuring out what they're trying to say, what you know, and that it's gonna take some time and it's not gonna be the same flow as like you and I are having this conversation. But you know, I remember sitting there, um, we were looking over this lake, and you know, this this individual and I were sitting there, and he's in his chair, I'm in my chair, and we're just sitting there. It's just like one of those moments that is like, oh, this is great. And then just like this little, you know, little chit-chat back and forth, and I'm like, you know what, this just this is feeling more like you know, just two best friends that are sitting there. You know, we don't really have to have a ton of conversation because I'm comfortable. I'm comfortable being around you, where you are at, what you're how you're showing up. And you know, I I think that's that's such a such a hard thing to to teach or to show people, but yet, man, it brings so much value to the entire situation.

SPEAKER_02 27:39

It really does. And that, and I think one thing is learning learning how to interact with people differently. And you know, something I used to ask my husband, because I I truly wasn't sure, it was like I had to get to know him all over again in a totally different way. And I would I would ask him, Hey, do you want to talk right now? Because there were times that I would because because at the time I wasn't sure what he wanted, so I would be probing and picking and da da da da. And what I didn't realize was his poor stroke brain was exhausted. He actually did not in that moment want to have a conversation, but I assumed I should continue to initiate because he wasn't saying anything. I'm like, well, I should come up with another topic. And it's so weird and unusual to be with somebody for eight years, 10 years. Now we don't have this challenge, but because we've done a lot of interpersonal work, we've also done a lot of work together. Um, but we've had to be intentional to get where we're at. I'm I'm going to say that this didn't happen just because time passed by. Time can pass by and things do not have to change. I was very intentional with wanting to be a different wife, a better wife, a care partner, um, learn him, understand him. But on the flip side, you know, I know that and and as I evolved, I watched Gabe evolve. And and I think that was one thing that was kind of powerful was doing it, but not having the expectation expectation for him to reciprocate. And that's a whole that could be a conversation for a whole different day. But but learning just to ask those questions, like do because I can't tell right now, and he may not have the wherewithal in that moment to tell me what he's thinking, the energy, the mental capacity, even though he is cognitively aware inside that the ability for that to come out will, if I'm not asking those questions, come out as frustration. Then he may, then I may think that he's treating me poorly when I could have resolved that situation by just saying, Hey, do you feel like I'm talking right now? And through his cues, he would let me know, yeah, I'm open to that. And I had to spend a lot of energy being aware of where he was at in his stage and recovery. And it and it took a lot, but I would say it was worth it.

SPEAKER_00 30:11

You know, that what you just shared, uh it makes me think of, you know, as as we're going through this this episode. I mean, first and foremost, like, guys, isn't Jamie awesome? Like, this is just one of the coolest. I I love like you and I could just talk for hours. Like, I love just I love hearing your your perspective and and your experience because I don't know it. I have never been the spouse, right? So I I cannot really speak to what that is going to be like. And I can I can guess. And I've had some ex you know, some experiences and talked with so many people, but that it's just a guess.

SPEAKER_02 30:49

Yeah.

SPEAKER_00 30:49

But you bring up something that's also interesting is that if you are an individual or a care partner or a spouse to to somebody who's had a stroke, you may, and this is super overwhelming. I'm I'm I can just imagine, not only are you having to learn a language that's the medical community, which people take years. I mean, doctors go to school for years to to even learn how to speak in this way and to talk this way, but you also are having to learn the language of your husband again.

SPEAKER_02 31:22

Yeah.

SPEAKER_00 31:23

Because it's no longer the same. The cues, you know, the little the little glances, the the wink, or the, you know, the you know, the touch, the the the touch, the you know, the inflections in the voice, all of that is now gone. So now the things that you use to almost like validate or you know to take the that you two are supposed to be together and you're supposed to, you know, go through this together, that you know, that that that validation piece is not there.

SPEAKER_02 31:50

It is not there. It is it there is no there's a couple of things. I think it touch I think in my opinion, it touches on two things. Number one is is rehab and the therapists that you choose to have in your corner. So, number one, like if you want to bring that home and improve your home life, there's two things that you can do. A pick a good therapist. Um that's a whole car, like everything I feel like we're talking about today. We could take this little subtopic and go off and spend hours on it. But a couple of things is pairing up with a good therapist, going to those therapy appointments, paying attention, building a relationship with that therapist, because that is how I learned when to push my husband and when not to. Because nothing is worse than your wife going, try hard, you know, try harder or seeing how what is the appropriate time to stretch my husband, because there, you know, that that is in recovery. And that's obviously Dr. Phil, that's your that is your world as we speak to that a lot more. But that's where I get to learn from someone like you, you know, and I can say, hey, Dr. Phil, when I'm working with Gabe on blah blah blah at home, you know, if he's really not feeling it that day, what are ways that I know that he is just too fatigued that day to carry on? Or what are ways that I know that, hey, I know that he's frustrated, but I could probably push him a little bit farther? And can I use your name to back up my reasoning so that my husband doesn't mind nagging him? Yeah, and then just you know, that I think, hey, today I know you're trying really hard. Could we push to do blah, blah, blah? And learning that gas break pedal with my husband, that's one thing for sure. And then the other part that we touched on was that that all of those cues and everything that we had is a huge part that I think is oftentimes looked over about the grief and like that ambiguous loss, because those are the little like they're the little flickers that we don't talk about. People talk about grief. Oh, I had this life Sunday, but I don't have it Monday. But in when you say that, those are those moments that we are so subtly uh noticing the loss and the ambiguous losses. He doesn't look the I can't the eye contact isn't the same. And it's you start to feel you can feel lost, hopeless, invisible because you're a human. We're humans as care partners, and and it's natural to want to feel so there's two big parts in what you said that that I really took from that for sure.

SPEAKER_00 34:33

Oh, I I I appreciate you sharing that. And you know, you've now used the the word care partner. Now I want to give you a second to you know, give you this little platform because I I don't know as if I had heard care partner before meeting you. And I absolutely love it. And now that is that is a part of my everyday speech, and I'm getting it's more and more replacing Caregiver. And I've used this, I've used, I've I've described it and I've explained it before, but I want to give you I I just think you you uh you explained it in a really good way. You're the one that that shared that with me. So what is the difference?

SPEAKER_02 35:15

Yeah, absolutely. And I want to say I think one reason why we were able to talk about it was because when we talked one of the first times, what I found so neat about what you do, and neat is not even the word, it it is it is is different because uh you, in my opinion, are looking at the survivor completely differently, completely different. And when you would take people to I will never forget the video that I saw when the individual their goal was to uh watch a baseball game. So instead of doing therapy in a certain way, right? You guys he walked the stadium, you know, the stairs up to the stadium, walked up the stairs to Dodger Stadium, top deck.

SPEAKER_00 35:52

He was so excited.

SPEAKER_02 35:53

I know, and that's amazing. And so to me, that to me is the difference that's the therapy world, but it's a slight thing between caregiver and care partner. A partner, I see myself as a care partner. First of all, it was hard for me to identify as a caregiver. Number one, because I associated that term with age, which is odd. I associated the term with me being a caregiver to my dad. Um I associated that term with me um feeding my husband or doing um physical caretaking. And I had to work really hard to even recognize that I was caring for my husband because I have always just seen us as doing it together. And that's why I bring up the story about the gentleman and walking the stairs, the stadium steps, is because to me, that's how I felt next to my husband. He is walking these stairs, he is trying to go back to the baseball stadium, and I want to be next to him with him doing it. I am his partner. I am not giving my husband anything. I he is he is fighting and he works hard every day. And I'm I am his partner in that. Um, and and it it's just an interesting. I don't know. I also associate the term caregiver with somebody who is a professional in-home caregiver. Um, you know, if I nurse or something like that, they're a caregiver. I feel like as a family member or a spouse, I am I am a partner in their care. So I just have a different feeling about both. Yeah.

SPEAKER_00 37:32

I I love I love that that view of like you are going alongside.

SPEAKER_02 37:39

Yeah. Next in he doesn't go to the hospital.

SPEAKER_00 37:43

I got chills thinking about it. I love it.

SPEAKER_02 37:46

We do because when he is admitted to the hospital, I'm admitted to the hospital. Yeah, I'm not sleeping at home. You know, we are going to the hospital, we are going to therapy. Now, eventually, there are times in which, as we as we've evolved, Gabe does go to therapy, but a lot of times we go to therapy.

SPEAKER_00 38:03

Right. Well, and and I think it's important to say, like, everybody is in a unique situation, unique, unique place in their in their journey. And I think the part the the part that I think can relate to almost everyone is that when we when we're using the word caregiver, caregiver is usually associated with I am going to do to you.

SPEAKER_01 38:27

Yes.

SPEAKER_00 38:28

Right? Like, so for example, I'm going to I'm going to do something for you. And it's and you are going to sit there and receive. Right? You're going to, you're going to, you're going to receive what I give. And now there's some things that kind of have to go that way, especially earlier on, and as you're learning, you know, and as as you know the the survivor is trying to trying to regain life of some sort that that they're that they're wanting, there's going to be some peace to that. But the thing, I another example, I was sitting down with a survivor, and we were, it's kind of funny because we were at this like really it was a nice restaurant, and it was just him and me, and we're sitting there, and I said, So when was the last time you asked your wife out on a date? And his his his perspective or his like facial expression was like, wait, what? Like it hadn't even like crossed his mind because everything in the in the healthcare system, you know, because again, like you pointed out, as an OT, as nurse, as physician, we are caregivers. And so everything that even the spouse learned is with from the perspective of being a caregiver.

SPEAKER_02 39:52

Separation, yeah.

SPEAKER_00 39:53

Right. And so it's like, so you have to be, you learn how to be the caregiver, but nobody teaches you how to be the care partner. Nobody teaches you, like, well, how do you rediscover that you guys, that you guys actually have a relationship, you have emotions, you have feelings, you have desires, like all of those things are still a part of the journey and a part of the process that, you know, as caregivers, that those those aren't part of the process. But you just you separate that and that'll come in time. Like it's like we don't really want to talk about that, and that drives me insane. But that's the truth.

SPEAKER_02 40:30

Well, and I and that to me is the biggest cog in the wheel because there's, I think there's a a couple of things that are happening there. It is safe, first of all. So I want to acknowledge that that if you know, if if somebody is feeling like there is hesitancy to feel like a care partner, I think it's because it's it doesn't feel safe yet. It can feel really scary, it can feel, you know, for a long time, you know, scared that my husband's going to pass away, or you know, and and and can be scared to get close to that. Yeah. And all of that's normal. But the biggest challenge I have with that is it's normal, but nobody talks about it. We're told, which right, finances in the medical world, very important. We can talk and then again, all of these are just other I get, I get so passionate about all of this because it changes your life. But the part where I think a lot of these things get stuck is that we get stuck in this loop of the grief, the the identity, not only of the survivor, but of the care partner, and get get stuck in this holding pattern, which makes figuring out the finances harder, which makes figuring out how to get the best um um therapist harder. All of these things that should be boxes to check or you know, less emotional activities get impacted because of the huge dynamic shift that occurred in the household. And I don't think this is with just spouses. I think this can even be like a parent child or whatever. I can only speak to it, I can speak to it the best because it's my spouse and it does, it changes everything. And and it is really, really subtle. There's not uh it's it's in the system that's built right now, there's not room for it, and there's not time for it in the system that's built.

SPEAKER_00 42:25

That's such a good point.

SPEAKER_02 42:26

Yeah. But it's in my opinion, if you take care of that, the other pieces they don't fall into place, but it makes it easier. You have more bandwidth to handle the other thing. That this this accepting of all of it is what is makes it so, so, so sticky. And it's the hardest thing to navigate, also, but it's it's not being dealt with at all. We don't have time. We have to call the insurance department. We don't have time, we have to you know.

SPEAKER_00 42:56

Right. Oh man, no, it's it's so true. Hey, this is Dr. Phil. If you're a stroke survivor and you want to regain motor function, improve mobility, and build real confidence in your recovery, then I want you to check out one of my Stroke Survivor Bootcamp training sessions. These are intensive, hands-on experiences designed to push performance, improve function, and help you get back to doing more of what matters in your life. Go to www.stroke survivorbootcamp.com and let's get you back on track one step at a time. I wanted to try out something different this this time. And I'm really excited about this because uh Jamie and I have not shared with each other um our list. Now, the the thing that I wanted to you know to to transition into, which I mean, Jamie and I can, you know, if you can't tell, like we love, we love to. Talking about all this and each one of these things that we've talked about, uh, like you said, could really be its own episode, just and just expanding on that. But I wanted you guys to first and foremost just get a uh an idea for who Jamie is. And you know, the the type of um the type of mind that she has and also the experience that she has and the passion. If if you can't, I don't know how you couldn't, but like this this woman has so much passion and and and fire towards, you know, I don't know if it's like protection, if it's if it's um there's there's probably a lot of different things, protection or just you know wanting some not wanting somebody else to have to go through as much of the struggle without really being guided by this. And you know, and you find out that you're pretty alone when you are when you're a a spouse. You in fact, almost everything is designated and designed to basically say, hey, everything is your husband. Your your husband is the one that got sick, your husband is the one that now can't speak, your husband is the one that's gonna need all these things, and your job is to help make sure that your husband gets where he needs to be. Now, there's some there's there's truth to that. Yes, because nobody else is gonna step in, right? It it is it is you. But then the part that we don't really get to talk about is the fact that you have something that's impacted, you have something that is you know, like your life, and we've been talking about that, and and we'll we'll definitely go into this in uh in this next part as we transition to transition to this, because if you didn't have it as one of your top top five, I definitely had it as one of my top five. And so um, so you know, I just I just wanted to, I just really wanted you guys to to get this opportunity to to see um you know that the the power, I think that's a good way to say it, the power that Jamie brings to the conversation and to the recovery process. And and you know, as I I'm constantly looking for people that are powerful themselves and stand up in their area, I just I think that you, Jamie, are somebody that is is fits that bill, fits that, fits that that um that place and and that just this conversation, just again, every single time we talk, I just go, okay. Like I just, I just we need to just record every conversation that we have, and we'll just throw that out there, you know, because it's like it just there's always these cool things is we just if you guys can't tell, we just keep going from one thing to the next and it just keeps building. And and so um, so I just I'm I just wanted to make sure that I gave you guys who are listening this opportunity to to see, you know, why I actually truly care about what her top five are. And now you're probably wondering, what top five are we talking about? So I asked Jamie to come up with her top five uh things that every care partner should know, right? What what every care partner should should should know. And then I told her to rank them from you know, number one is like the number one most important thing that you need if if anything, know this one thing and all the way down to five. Now, if now tell me if if you're the same. I found myself like I had way more than five.

SPEAKER_02 47:40

Oh, way more than five. And then when I got my five, then deciding which one was more important than the other.

SPEAKER_00 47:48

Yes, so hard. I like moved them around and and I I finally rested on on what I'm gonna share. Um, and so I did I I'd like to try it this way. So I'm gonna reveal my number five and then and you know, and give you some reasons why, right? You know, what it means, why, and then I'm interested to hear your thoughts on that, right? If you first and foremost, do you think it is something that is is uh, you know, yes, a care care partner should know this, you know, or you know, you just just give your your first honest raw thought.

SPEAKER_02 48:25

You you may with some of these you may go, huh, that's a total therapist thing to say, but that's from a care partner thing is because I don't know the more you the more you know. And I think this will be really helpful for somebody. If there's a care partner listening to this, I'm not 100% sure you know exactly who your audience is, but if there's a care partner listening to this, I get to get into the side inside the mind of a therapist and like, oh, well, that's what they're thinking because that's all what I am thinking.

SPEAKER_00 48:52

And I think it's that's why I'm so excited. Yeah, yeah, and then and then on the flip side, I get the opportunity to hear yours and to go, really? Like that's the one that you are thinking is like number one or number five. Like, okay, you know, and and it's I'm just excited. I'm excited to go on. So here is here's my number five. So um again, I had to, I had to, I had so many that I came up with. But number five is that the mission has changed, but the team has stayed the same.

SPEAKER_02 49:26

Oh, that is good.

SPEAKER_00 49:28

So, what I mean by that is that the having the stroke has, man, I'm gonna tear up. That's already number five. But like having having a stroke has now thrown a wrench. But you two are still the same. It's still you're still two people that have that are are going in this journey and yours going through this together. But what you had as your mission that you guys were trying to accomplish together, that has now changed. But if you can look at yourselves as a team, and I'm all I you know, I come from a big sports background, so I always like you know, sports related, it just makes sense to me. But that the team has stayed the same. It's just that your goals now have to have to adjust. And I think that is so important. You know, some of the pieces that I put into this is, you know, really that I think the number one thing is that you as the care partner and you as the survivor need to ask this question. And it's what does being a team look like now?

SPEAKER_02 50:36

Yeah.

SPEAKER_00 50:37

So what are your thoughts on that as even just as one of these? Like, what what do you think?

SPEAKER_02 50:42

Yeah, so amazing. Now I'm looking at my top five. No, that that's 100% the case. I would also add in there is that absolutely, especially in the in the very beginning, is uh you don't have to give up what you had, but be open to it looking different. So I think there's a time in your recovery in which you can still have the same dreams and goals, but but not putting a timeline on them. Like if I don't get back to that in six months, it's over. But I think you're right, the the the team is the same, is the big part. We are on the same side of the table. We are on the same side of the line, and it's so important to remember that. Uh because as a care partner, I guess that's what I'll make sure I'm doing here is speaking from a care partner perspective. I have to remember that I am going through my own changes. And especially with my husband in particular, he doesn't have physical deficits any longer. And it can be uh challenging for people, you know. Sometimes I even catch myself. I have to realize that even if he's not exhibit exhibiting anything in particular, he is going through maybe fatigue, um, cognitive changes, changes that stroke or any sort of illness can bring along that I am not aware of. And remembering that if uh something happens, he's coming off on a certain way or something isn't going quite right, that no, this is my this is my teammate, this is my partner, and uh we are we're both uh going in the same direction. I think that is huge. I did not write that down.

SPEAKER_00 52:21

Hey, does then this is doing what it's supposed to. So what's what's your number five?

SPEAKER_02 52:26

My number five, and so I touched on part of it earlier, is that is that your support system might not be your support system. Um knowing that your that even if it's yeah, I'm gonna even say this, even if it's um your parents or whoever, maybe it's an aunt, an uncle, someone very close to you says, I'm gonna do XYZ, do not hold them to it. Um I welcome it if it comes.

SPEAKER_00 52:51

That's so big.

SPEAKER_02 52:53

Because I think one of the big things everybody tells you is um round everybody up and delegate everything to everyone. I'm gonna tell you right now, it doesn't work like that. It didn't work like that for me. And I think it's definitely worth it. Um, but it can be really easy to feel defeated if it doesn't. So be open to outside resources.

SPEAKER_00 53:12

And just one thing that I'll add to that, um, which I love, I love that. And I think that what you, you know, I think that's a good number five. One thing that I would add to it is that I think a huge part of it depends on your culture. So some of the individuals that I've worked with, um, like I can remember multiple uh individuals that uh were were Samoan. And now I'm not I'm not putting everybody that's Samoan into this category, but one thing that I that I saw time and time again was that I mean I I there was a there was an individual who who's a grandson. We're talking about a grandson beautiful who who got a position or a role on Broadway, left that opportunity to come home to help take care of his grandma.

SPEAKER_01 54:05

Wow.

SPEAKER_00 54:06

During a during a certain amount of time. It just there are certain sometimes there are cultures that that is just that is just what is is designated. But I'm thinking about if I put myself in that situation, I would probably find myself in a very similar situation as as you know you, where you know it's like they they'll they'll give, but then there's there's there's only so much in I'm gonna be lives. Yeah, yeah, and I can't I can't bank on it. And so I I do love that. I think that's a huge piece that people need to, you know, that care partners need to understand that yes, they may they may come, and that's that whole wave. It may come really quickly, but don't get used to that big wave being what's going to stay.

SPEAKER_02 54:53

Yes, a hundred percent.

SPEAKER_00 54:55

So I I I like that.

SPEAKER_02 54:57

Oh, this is I this is turning out better than I thought it would that your number five really got me though. I'm I love that.

SPEAKER_00 55:04

Okay, you ready? I'm ready. Now this is this is uh this is something I am very passionate about, and I think you might, I don't know, maybe we'll we'll see what you think. Don't protect a therapist's feelings over your partner's future.

SPEAKER_02 55:21

I I have Gabe's sales bell still in that corner, and I really want to ring it. Yes.

SPEAKER_00 55:27

Okay, so tell me I had a really tough time with putting this one at four because I actually originally had it at um at two, and it which kind of goes to show what these other, you know, what I think of these other ones, but you are allowed to fire your therapist. Yes. And and I truly mean that, not in a not in a mean way, not in a but like you are allowed to tell your therapist, sorry, this isn't working out. Because here's the reality. Your therapist only has a finite number of times that they are going to get to work with you. And guess what's going to happen? As soon as that time is up, that therapist doesn't have to think about you again.

SPEAKER_02 56:14

Yeah.

SPEAKER_00 56:15

And so, if you know, the way I usually, you know, the example I usually give is that if you bought an iPhone, right? If you bought an iPhone and all I did was text, you would return that iPhone in two seconds. Because you'd be like, no, it's supposed to surf the internet, it's supposed to have apps, it's supposed to call, it's supposed to do FaceTime, right? Supposed to be able to do voice messages. And you would return it in a heartbeat. Yeah. But yet for some reason in the therapy world, it's kind of like you don't want to hurt their feelings, but you have to realize as the care partner, oftentimes it's gonna be you. It's gonna be you that has to be the one that chooses to fire because it doesn't matter if Sally is the nicest person in the entire world, if Sally is not getting your spouse up and moving and doing, then it's time to get somebody else who will.

SPEAKER_02 57:09

Do you think that is also because care partners have lack of knowledge? So since they're unfamiliar, they just let it go.

SPEAKER_00 57:18

Yeah, they don't know what to expect.

SPEAKER_02 57:20

Yeah.

SPEAKER_00 57:21

So they they trust that the therapist is gonna know what's what's happening. But I do think, I think that every care partner has this, has some version of common sense or some version of like almost like a you know, spidey sense, you know, it's that piece of you're just like, oh, this is moving so slowly, this is not getting there fast enough. This is and you have that piece that's in the back of your mind that you're just like, okay, something isn't making sense. Yes. If you have that thought, then you need to approach it with your therapist, and you need to actually consider finding a different one.

SPEAKER_02 58:00

100%.

SPEAKER_00 58:02

That's my number four.

SPEAKER_02 58:04

My number four is the same. Is it really? Is it's it is it is rehab, hiring your therapist, and home application.

SPEAKER_03 58:14

Let's go.

SPEAKER_02 58:15

It's that I'm with you. I'm telling you, I want to ring, I want to ring that. That's so cool. This is Gabe's old office that I we've had to we had to change around our house so that he can sleep and things like that. So I'm half me, half him in here, which is kind of funny. But yes, mine is the same. And for the record, I have fired a therapist. I fired another therapist, and um have gotten more uncotten more comfortable doing that because at the end of the day, some people just don't mesh, and they're maybe that therapist is absolutely wonderful, but they just don't mesh with uh a personality type. My husband is a driver. Um, he he is not gonna go slow. And I think it's I've had to get a really self-educated on different types of therapists and their different modalities and the way that they like to provide therapy, and have had to do some self-education on interview questions for a therapist and then also sitting in on those therapy appointments, um, especially if your survivor doesn't just have physical deficits, if they have um, you know, a speech deficit as well, really spending that time to break it down. And because all of course it's the financial piece, but it's it's the time piece, it's the frustration piece, it's the I just want the best for my husband. And if I leave that feeling like I can do that at home, um that's a problem. That I want to learn when I'm with that therapist that I can do at home on our home therapy days, and I think there's a time and place for that, but I want that therapist to be using their knowledge, their expertise to do the things that I don't understand. And if there is a gap there, that is the wrong person. If there is a gap there that I'm seeing where um there's too much, I'm gonna call it rapport building. I want you to say hi, how are you? I care that you care that my husband likes baseball. Like I I care about that, but I don't care about that more than you uh uh helping him get better. And that should be used as a basis to build trust. And if we want to be able to trust you and we want to respect your knowledge and expertise, we can go to lunch with somebody else. Right, right, we'll get close enough with Gabe's favorite therapist. She is absolutely amazing. I love her to death. I Gabe and her went to lunch together. That comes off after the relationship that they built and the and the trust and support, and that makes me emotional because she she she cares, but and she cares about Gabe's feelings, my husband's feelings. Yeah, not so much that she'll spare him um to make him feel like he's doing a better job that particular day than he is. It is a really finite, very delicate balance. And if you've been to enough therapists, you can spot it pretty quick. But I think it takes a lot. We've we've had a lot of therapists because Gabe has gone to multiple therapy programs. Anyway, I just went off on the table. I apologize.

SPEAKER_00 1:01:33

No, I you you made me. I'm I'm a big believer, a huge believer, that a therapist, and we call this therapeutic use of self and occupational therapy. That's that's the term that we use, where you basically use part of your experience, your your uh personality as a way to help somebody go through the struggle of the recovery process. It is oftentimes interpreted as I'm showing empathy. And that's not true. That is not what therapeutic use of self is.

SPEAKER_02 1:02:07

Okay.

SPEAKER_00 1:02:08

I am a massive believer that relationships and trust come when both of you actually go through the struggle together, and that the person then gains trust in you because what you have done is you have gone through something difficult at that moment together. And as you do that, the trust goes like crazy. I like the first time I work with somebody, I I mean, this sound may sound bad, but I very rarely will ask them about what it is that they love to do. Like, I do care that I know who this person was. Sure. Because I need to know how I should interact, but I don't want to have a conversation about your your you know, your your favorite sports team.

SPEAKER_02 1:02:59

For an hour, because you have a 29% of time.

SPEAKER_00 1:03:03

I I there's like very few moments that I'll even say something. And if I am, it's when we're struggling going up 114 stairs together, up and down 114 stairs, or we're you know, we're we're dragging 120 pounds, or you know, like I've strapped 30 pounds on your leg, you know, and you're struggling to do it, and I'll be like, hey, so the Spurs won last night, you know, as you're going, like, sure, like something along those lines, like if that is the case, but very rarely will I do that. And you know what? I have the I have, I feel like, I feel like I have really good relationships with the survivors that I've worked with. And I don't know everything about them, but I don't have to because that's not my job. My job isn't to be your best friend, my job is to make it so that there are results. And you know what? If you come to me, that is what we're going to do, is we are going to create results. And that is gonna be my number one priority. And in the meantime, I will learn you because I'm gonna find out that when I push you in this particular way, that actually comes across as very rude. Right. Oh, oh, sorry, okay, then I have to adjust and change, but that is the process. I don't want to sit there and worry that I'm gonna offend somebody because you know what? In the end, if you have a neurosurgeon who is the biggest jerk, has the worst bedside manner, but you know what? He can come in and can remove a tumor out of your head, take it out. Take it out. You will be just fine with that person because he is going to give you results. And I think that piece is lost in a lot of therapy. And so good.

SPEAKER_02 1:04:46

Yes.

SPEAKER_00 1:04:47

I just I just love I love that that was our number one that or that was our one together.

SPEAKER_02 1:04:52

Like I'm telling you, but we that should go on because I'd love to hear sometime what you know, in what ways do you know, you know, to to push and build rapport or to back off and and and you know, my thoughts on that as well, because we've seen, I think Gabe's had like eight or nine therapists just from going to different ICAP programs across uh the country and things like that. And it's really cool to see how different people show up in their profession. Really is. But but I think the best ones always have something in common that is identifiable pretty quick once you start seeing.

SPEAKER_00 1:05:29

It's within the first like five minutes, you can tell.

SPEAKER_02 1:05:32

Yeah, yeah.

SPEAKER_00 1:05:33

First five minutes. I I have so many stories, but I want to make sure we get through these. So I I put that down as a note of something that we can talk about another time because that I I love that. Okay. My uh number three is don't let recovery replace living. Let living drive recovery. So, what I mean by that is it's this thing of where we go it personally, when it comes to stroke survivors, they There is enough evidence out there now that we should know that if I just focus on increasing somebody's capacity, it's really not going to show up in their life very often. And so the and then the other piece is that if I give you a home exercise program, there is a finite number of individuals that are actually going to take it and do it.

SPEAKER_02 1:06:22

Oh, yes.

SPEAKER_00 1:06:23

So instead of saying 10 reps of this, 15 reps of this, 20 minutes of this, you know what? The question I've started to ask my survivors that I've been working with, and I love it. And I think it needs to be just a constant, consistent change. It's how are you going to live more today? Because there's this piece that I hear when you know stroke survivors talk. And it's that there's this like, um, oh, I got to get my exercise in today. And I'm sitting there thinking, like, and this is from the therapist standpoint. So I I mean, I totally get this. But I'm sitting there thinking, like, well, what do you call walking to the bathroom every single time? What do you call like going up and getting your own drink instead of asking your spouse to go get you a drink? What do you call, you know, what do you call going outside, you know, and going to get the mail? Like it's, you know, I kind of want to move away from it being called therapy, and I want it to be looked at as you're just living.

SPEAKER_02 1:07:25

Yeah.

SPEAKER_00 1:07:26

Like, and and and as you do that, you're going to experience that it's going to suck. But you know what? You're also going to experience as you do it consistently and you show up to see how you can live more, it becomes easier.

SPEAKER_02 1:07:41

Your top five are better than mine. I don't think so. I'm just kidding, I love it. They're just different. Because where we're at is we consider one of the coolest things, brief story that I saw with my husband, one of the biggest leaps in his recovery came when he decided he was going to start um pulling people on, like making these phone calls. He would pick up the phone. I'm going to let you know, my husband started out not even being able to make a sound. Um, he couldn't, if you said make the sound, wasn't gonna happen. If you said make the b sound for B, wasn't gonna happen. He started from zero. So for him to say, I'm gonna pick up a phone and I'm gonna make a phone call, and you know what he would do? He would pick up that phone, that phone would ring, the person on the other end would answer, and then he would hang up the phone. And then he would do it again. And there was, and here's why, and I'm, you know, you could speak again more to this, right? But those neural pathways are being built so fast. One thing that's really important that I've learned is um a term that was new to me called saliency, which means you learn things faster when you do something that you care about. So uh my husband, though those are when those things come in. You know, what do you like? Things like that, right? Why does the baseball stadium matter? But let's not talk about the the baseball stadium, let's do the baseball stadium.

SPEAKER_03 1:09:00

Correct.

SPEAKER_02 1:09:01

Let's talk about my that's how much my husband loves to talk to people, is that he was picking up the phone to find somebody.

SPEAKER_00 1:09:07

I love it. He was not But that's when you that's when you saw most change.

SPEAKER_02 1:09:11

But well, and more change than hey babe, like let's role play these phone calls. That is not it. We can recreate it as much as possible, but that is not the same thing to your point as living. He's just gonna do it and fail. And as a byproduct, I am telling the one of the biggest leaps. And guess what? That was actually during a break in his therapy.

SPEAKER_00 1:09:33

Which is interesting to me, which is where which is where this is coming from. And I had a really tough time only placing this at three because I think foundationally, as the care partner, if you can understand this, what it will do is it will stop you having to try and get your care partner, your spouse, to just do 15 minutes of therapy today. Instead, it's like, no, like you what are you gonna do to get up and live? Because that is that is going to be the one thing that's going to change everything, is that you actually get out and live. So I yeah, this one was a huge one for me. What was your number three?

SPEAKER_02 1:10:16

I wonder if this so are like are you are you enabling your survivor or are you helping them?

SPEAKER_00 1:10:24

That's your number three. I love that.

SPEAKER_02 1:10:27

Are you enabling your survivor? Are you helping them? How much and that there and it's dude, let's not confuse this with care partner, caregiver, because I think that's different. But are how much of it is hey, it's okay, don't worry about it today? And I think it can go back to rehab, having the right therapist that you partner with. Yeah, again, here's the word partner again. Like I am hiring the therapist, but that that therapist, in my opinion, should be a partner in Gabe's recovery and not my husband's recovery, but a partner with me because I am going to be the one that hopefully in that structure is helping facilitate that recovery. Because if you've been through therapy, you know that however much your insurance is giving you is not enough. So if you're getting therapy once a week, I always think about it like going to the gym. I am not gonna make any change going to the gym once a week or eating healthy once a week. And so for me enabling or am I helping, am I creating conscious opportunities? And again, this is gonna sound this is not more work, I promise. The more that you do it and and it gets integrated as a byproduct, it seems like, well, it's easier for me to just do it for them. And it does very much feel like that at first until I start implementing the well, so for instance, just real quick, let's let's say your survivor takes medication. Mine does because he has chronic tonics and a slew of other, you know, lovely things that along with this story. But for a long time, I was like, I'm going to put your medication in the right spots. I was hyper controlling because I didn't want anything messed up. Well, now we have worked out a system in which he does it and I double check it. And guess what? 99% of the time now, it's correct. Was it like before? No. But do I always check it? Yes. And and it's those little things, it builds their autonomy.

SPEAKER_00 1:12:26

I love that. That switch.

SPEAKER_02 1:12:32

And as a byproduct, that I think increases the relationship. Less care partner survivor or caregiver survivor dynamic. More partner, more relationship, a lot of things that go into that. So not it can be so easy to swoop in and save the day, but you are going to burn out and your relationship dynamic changes a lot.

SPEAKER_00 1:12:57

See, I love this because like I'm I'm just I'm just sitting here and I'm just thinking about like I would love to even just have like, okay, let's do an uh, let's let's have another conversation where we are talking about the like, okay, here is something, you know, like making breakfast or going to the bathroom or you know, making a bed, or you know, doing laundry, getting dressed, and all those pieces. And I am really, I would be really interested in how you would look at it and go, like, oh, well, if you just change it this way, right, then then it actually is easier for you as the care partner. Because if you think about it, if you don't have to spend all that time, like if you know, putting them all on these pieces, at the beginning, like you said, it's gonna be a little bit difficult.

SPEAKER_02 1:13:54

But well, and it can improve a lot of things. Well, if you think about it, actually, for instance, my husband doing that, it also works on his fine. It it's really weird how many it's so to your point, therapy versus living. Yes, living, and as a byproduct, he is having to pay attention, he's needing to read a label, he is needing to do, and so it is actually instrumental. You could go to occupational therapy, and occupational therapy is going to work on some, and not saying that uh therapy in a certain setting doesn't happen as it certainly does. That's not what I'm saying, but oftentimes he would get similar assignments to come home. Yes, so and instead of making recreating those, we just do them in life, so yeah.

SPEAKER_00 1:14:45

See, and this is a thing that I think that it you could almost make an argument for um if I'm using a home exercise program and it's about exercise, I am supporting an enabling environment because I'm separating caregiving and care partner and living versus what is the next thing that you are going to do to live today? Like that that changes just enough that it's no longer enabling. Now I'm here to support you, but what is it that you are going to do today? And I I sent a message to this survivor, his name is Chuck. And you know, I was like, What did you what are you doing to live today? And he goes, it was so simple, but I loved it. And he goes, I carried my own cup of coffee from the coffee machine to my chair, which was like five to ten feet away without spilling. That was that was that was one of the things he reported to me that he did to live, which is important because he would always roll himself over there. Now, I didn't tell him that that's what he needed to do. It's just a decision that he made. Yep. And and again, like those are the things that are gonna make the biggest difference. Okay, now we guys, we are going a long time, but we have so much to say. But let's just let's go through these, these, these final two.

SPEAKER_05 1:16:17

Okay.

SPEAKER_00 1:16:18

So, number two for me is don't disappear on their recovery because your struggle isn't smaller than theirs, it's different. So the biggest thing is that so often, and this kind of goes to what we'd already talked about, you as the care partner, it's easy to get lost in their own recovery and just kind of push yours aside. It's like you sweep it under the rug. Problem is that you sweep it under the rug, it's just gonna be a lump, and eventually that lump is gonna get too big that you're gonna trip on it. So instead, just recognize just a just simple of you can say this is hard for me too. And don't sit there and go, like, yeah, but it's not as hard as my husband's. Bull crap. It's just as hard, just in a different way. And so be okay with that and give yourself that permission. Now, you and I have talked about this that it's that that is a process, it's not just something that's just like make a decision and you're done, but working towards that can be so valuable.

SPEAKER_02 1:17:23

Yeah, it it I have the exact same one. It's I it's but it's well what say the title of yours one more time.

SPEAKER_00 1:17:35

Basically, it's don't disappear in their recovery because you're because your struggle isn't smaller than theirs.

SPEAKER_02 1:17:43

So it's different. Similar but different. So I don't have mine, is just grief and ambiguous loss. Yeah, okay. So not in what I mean by mine is so no, they are different. But I think, yeah, so not getting stuck in in their recovery and understanding that you have your own journey, that is a challenging. I I think that's really important, is that it can this is a title and but it encompasses, in my opinion, probably the biggest part of this transition in life, is that in what you're saying, all of that are two people with two brand new identities and a brand new world, which is why you go back to I think it was your number five, is remembering it that you're on the same team. But it can, but I think that that's so important that you say that because again, it might seem like I don't have time for my own recovery and my own grief and my own this, my own that, because they are the ones that need the help. Because here's why they are the ones that are physically going to the appointment. So it can seem like all eyes are on them, and it's true that there are, but it will work in the temporary. But I have not personally met anyone in which it worked long term. There that could happen, I do not know. But from what I've seen in my personal experience, and then in talking to so many other different care partners over the years, is that there comes a point when when they say, I'm gonna fight, fight, fight, fight, fight, and then they just can't hack it anymore. And because there is no time for the recovery.

SPEAKER_00 1:19:30

And I think ours are pretty similar though.

SPEAKER_02 1:19:33

That's why when I read mine, grief and ambiguous loss to me feels similar because we're not care partners stuff that down, they stuff the grief and the ambiguous loss down, and they ignore that part and they focus on the tangible recovery. It's it's the same.

SPEAKER_00 1:19:54

You just what what you just did was you actually put a label to what the recovery is.

SPEAKER_02 1:20:00

Yeah, it felt the same. And I was thinking, I'm like, this feels yeah.

SPEAKER_00 1:20:04

So I mean that that's it's cool that I mean that both of us, from the therapist and from the care partner side, that we both put that as really high up there.

SPEAKER_02 1:20:15

And do you feel like when you're meeting those survivors, I mean, you're taking this into account. You are you seeing this? Do you are you seeing this in care partners, or over the years have you started to identify this when you meet a survivor and then as a byproduct, meet the the partner?

SPEAKER_00 1:20:31

I have I have talked to care partners about this, and I've and I've brought it up. Um, but I don't believe that's the norm. And usually it's a you just need to give yourself an opportunity, go cry somewhere, that's okay. Like go somewhere, that's okay. But like because I'm only billing, and I think this is wrong, but I am only able to bill for my time with the survivor. And and and insurances, they they don't they don't recognize, they don't recognize that the that the spouse also has has something that is is going on and that they're going through this journey.

SPEAKER_02 1:21:14

It's so gap. I think that's a huge gap is if you if the care partner has the opportunity to get to to go through all of this as a byproduct, they actually create a better environment for the stroke survivor to thrive.

SPEAKER_00 1:21:29

Yeah, yeah.

SPEAKER_02 1:21:31

I can that's a lifetime in and of itself.

SPEAKER_00 1:21:35

I mean, we can so basically basically what you're saying is that if you as the care partner can allow yourself the and and figure out how to take care of your grief or to experience the grief and to go through a version of recovery, uh like I'm trying to find the right words, but that that opens up more space within you to show up, to be there, to to actually help. So it kind of ends up allowing you to experience more with your care partner, with the survivor.

SPEAKER_02 1:22:18

Because and again, we're running out of time, but I but it's um it's like being stuck in in like quicksand. Yeah, and it just is in you know if you've been down there at the bottom, and the only thing that you're focused on, or a care partners, all things things that we can be focused on is do, do, do, do, do. The more I do, the better it'll get. If I check these boxes off, um, we'll we'll get through the finance box and the rehab box and this box. And as time goes on, things will get better. And I think there is an element of truth to that, but there is not uh healing going on things being skipped, and what we don't see is is how much that we can still be drowning in that quicksand, but still be having, you know, we you can still be running, but you're at a much slow, it's heavy. It is heavy. We're doing the do, the thing, but it is labored, it is not um it's it's kind of like if you're running, you're running a marathon and you forget to take the salt pellets or the salt salt pills, yeah.

SPEAKER_00 1:23:29

And so by mile 19, you start having cramps in your calf.

SPEAKER_02 1:23:34

Yeah, that that's how it is, and you can't, but and then people would say, So to your point though, people would say, Well, I don't have time to do this. But I think the challenge is is that there's a misconception that it has to be done to an hour a day.

SPEAKER_03 1:23:49

Correct.

SPEAKER_02 1:23:50

And there can be small shifts that will build up over time. It's a again, same thing as enabling or holding back your survivor. There's you're not telling your survivor to do all of this, these things in one day. You're saying, hey, let's work on for a while, you know, filling up that pill container and I'll take a look at it. And with these small changes, everything will become lighter over time. And part of that though is acknowledging that there has been loss.

SPEAKER_03 1:24:16

Yes.

SPEAKER_02 1:24:16

And that above all things, that's like a multi, that's a multi-series, right there.

SPEAKER_00 1:24:22

Oh yeah, so many things. Okay, now we get to go to the you know, guys. Thanks for for being with us through this. And seriously, like this is I I've just loved this conversation. So this has been so much fun for me. My number one, my the thing that I think is the most important thing for a care partner to understand. Now, and you'll see why I think this, and it it's there's no question because I'm the therapist, but recovery or progression or change requires risk and progressive challenge.

SPEAKER_02 1:25:03

So we more than that, yeah.

SPEAKER_00 1:25:05

So what usually happens is that there's this idea that I have to let my brain heal and then things will come back. Now there is a truth to that, but plateau is not a term that actually really exists unless you, as the individual survivor, stop being challenged enough to make it so that the brain has to adapt and change. And so that but the only way that there comes a point where the only way that you can keep progressively being challenged is that you have to allow for some risk. So, for example, you have to allow for your husband to sort the pills. Yeah, there's some version of risk there. Now, obviously, you come back around and double check it, but even then, what if it's to go walk from you know, go to the bathroom by himself to empty his own urinal? Like something along those lines. It's going to, there's a potential for mistake. And there has to be that if you want to keep progressing. And I think that is one of the hardest, but most, I think it is the most valuable piece, at least from my end, that if you ever want to have it be where there is no such thing as a plateau, you have to understand that you're gonna have to take a risk, and that you're gonna have to have it continually be challenged. And that's hard.

SPEAKER_02 1:26:51

Yeah, that's that is huge. That is that is the premise of recovery, and I think that's where so many people get stuck, yeah. I is that I have another goal set in front of me, and I'm gonna go chase it, and it's not and it's and it's gonna probably be a little clunky until it's not, and being able to look back at the old things and and I think about that. Once my my husband was once making those phone calls and hanging up, and then he would start calling to fill his own prescriptions and I would listen and I'd be whipped to swoop in at any moment, but knowing like there's risk there, right? He can walk, he can turn around and walk out, right? Or or you know, he can hang up the phone, or if that person, you know, or setting up an environment where if somebody's gonna fall, can they do it in a con you know in a safe way or or calculated risk taking is huge? I think that's imposters belief and like you said, hope. I can do it. Maybe I'm not gonna do it perfect the first time, but I can with enough tries because and just neuroplasticity, which is another fancy.

SPEAKER_00 1:28:00

I know, right? Well, it's it's the same as like, when is it enough for you to actually let go of your king? And the reality is, is there never is enough. There's going to have to be at least a ditch that you're gonna have to jump over in order to get rid of the king.

SPEAKER_02 1:28:22

It is, it's a leap of it's a leap of faith. And what is is it is a true barrier? Because there are true limitations and true barriers, and maybe we're not there yet, but there's a lot of the mental for sure. Yeah.

SPEAKER_00 1:28:36

So what what was your number one, and then we'll wrap it up.

SPEAKER_02 1:28:39

Yeah. So mine is um identity shift. So similar to that point, so as a care partner, but I also think that applies to a survivor, having having the identity shift of the belief surrounding it, or even the belief of right, so if we're talking about this, the belief of my survivor, my survivor is not somebody who can go to the bathroom on their own anymore. I have chosen that identity for them.

SPEAKER_00 1:29:09

Correct.

SPEAKER_02 1:29:10

And I am not seeing them, I I so and I I even avoid using the word disabled. I believe in it, and I'm not here to be like, you know, uh uh the term police or whatnot, but I speak over my husband as somebody who is constantly evolving. So something we say in our house is I get better and better every day. We put things up on the mirror, we we understand that things are not perfect today, but we have the opportunity to become better and better every day. Um, it can be really easy for myself as a care partner to get stuck in um and that's also that's that terminology. I'm a caregiver for my husband, nothing more. And this is it now, and this is my life now. There is no getting out of that. And out of that, I stifled for a period of time hope and possibility for what was possible for myself, and that's why I speak so strongly about the association between myself as a care partner and my survivor. Um, is that when I lost that for myself as a byproduct, I accidentally imposed that onto that person who, in my opinion, is in a little bit more of a vulnerable state because not only are they going through their identity shift, but they likely have a uh a limitation to themselves that I do not have. I have two arms and two legs and two feet, and I can talk as fast as I want. And I did go through loss, but my husband also went through that loss and the loss of all of these different things. So, anyway, to identity, if if I am choosing, then I am choosing to sit down in the middle of my race.

SPEAKER_03 1:30:47

Yes.

SPEAKER_02 1:30:47

I've chosen to sit there. I am somebody that doesn't finish races, I can be that all day long, and so I think it's important to to to know. Um, I think that's why grief and ambiguous loss that comes before. But as you work through that, you can know that you don't when we grieve, we grieve, but we don't we don't grieve 24 hours a day, seven days a week. Grief is something that we experience, it is not who I am.

SPEAKER_00 1:31:16

I love that. And I I think in a in another way, at least what I'm understanding, is that don't choose your identity based on what it is right now in the moment.

SPEAKER_02 1:31:32

Yes, and that can be really touchy because especially I I think that this is also something to take care with because and I'll add this in that your association is really important. So if you're if you're a baby, if you're a baby care partner or a baby survivor, like you're six months, you're fresh, there this is new, that everything is different. Maybe this isn't where we're at yet. Um, but I talk about it because I think it's important, and I think it's important to have a good association because if two people get together that are six months, let's say six months post-stroke, um, it can be really easy to share the bad experiences that are going on. But if we're able to associate with people that have walked the walk, if you will, for a little bit longer of a time and they've been able to maybe they found a good therapist, maybe they had a great experience, maybe they um weren't able to walk from here to there, but now they can. We're able to see that those things are possible, and so I think it's important to associate ourselves with with people that are choosing to do all of these things that we're talking about because part of it is very real and tangible loss that we can is not fair, not what I expected. Life wasn't supposed to go this way. I 1,000% understand that. Um but then you know, also saying, Well, how are you how did you guys get through this? You guys are five years in. How did you how did you do that? Because somebody at six months in isn't gonna be able to give me a very good blueprint or even show me that it's possible. And so it can be really impactful to be around people like that.

SPEAKER_00 1:33:16

And that's not your therapist.

SPEAKER_02 1:33:19

Yes, that's not your therapist.

SPEAKER_00 1:33:21

That's to be somebody that's actually going through it. You and I both are very, very in in agreement with this because it allows for so many pieces to come together. Man, I I loved I I I I see value in all of the ones that that we came up with. And I love seeing that there were some similarities and then some that were just a little bit different. And I think that's I think that's really important. Um, and it's it's kind of eye-opening, you know, for me as the therapist to see what you know you you think are you know the most important things for a care partner to experience. Um I just want to say thank you for being on and for being a part of this and and having this conversation with me. Um, you know, I this is not the this isn't gonna be the the final and last conversation, you know, that we have. And um I just this this is this has been really, really good. And so thank you for being on here.

SPEAKER_02 1:34:23

Thank you for having me. This is amazing, and I I look forward to it, and um I really appreciate it. And yeah, I love what you're doing. I think this is great.

SPEAKER_00 1:34:32

Well, thank you. And uh for those of you that have been listening and are interested in um either getting in touch with Jamie or you'd like to uh participate in a Stroke Survivor Boot Camp, um you can go to uh reach out to me through www.stroke survivorbootcamp.com and you can fill out a request form and and I uh will help get you in touch with you know uh the right people, whether it's me or Jamie or anybody else. And so I am really appreciative of you guys listening, and I love what I get to do. We have so many things that are in the works that are happening right now, and so just keep coming along for the ride and seeing what we are about to accomplish for the stroke community, and I just appreciate you being a uh a part of it, and uh so have a good good uh good rest of your day or evening, whatever time it is when you're listening to this. I'm Dr. Phil, and this is Stroke Survivor Bootcamp.

SPEAKER_07 1:35:37

Breathe in, count it out. Every scar is around. Floor is cold, heart is loud, hands are shaking, but you stand your ground, every stomach still step you on, sweat on your face means you still just like it.