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No Barriers Podcast Episode 123: Caregiver Advocate and Alchemist: Colleen Rose



Hosts Jeff and Erik speak with our resilient guest, Colleen Rose, about her role as a military caregiver, as a care recipient herself, and her incredible work with the Dole Foundation. Special thanks to Prudential for sponsoring this episode.

Colleen Rose is a military caregiver for her husband, John, an active duty Marine. While on his 2nd tour in Afghanistan, John was wounded by an IED blast sustaining vision loss and extensive injuries.

Colleen acted as his caregiver, and then, in 2016, the roles were reversed when Colleen was diagnosed with breast cancer. Several years later, Colleen has helped her husband retain his active duty status, and Colleen is cancer-free and in remission, and they are proud parents to their baby, Declan.

Colleen now serves as a Dole Caregiver Fellow, placing her in a great position to advocate and provide encouragement for all caregivers, sharing her experiences as a caregiver and care recipient.

Thank you to our sponsor, Prudential, for sponsoring this episode and more featuring alchemists like Colleen.

Resources:

For Military and Veteran Caregiver resources as part of the Elizabeth Dole Foundation: https://hiddenheroes.org/

Elizabeth Dole Foundation FB group: https://www.facebook.com/ElizabethDoleFoundation/

Watch more about Colleen: https://www.youtube.com/watch?v=D546jZFsCVE

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Episode Transcript

Jeff:

We are honored that Prudential's sponsoring today's podcast. Highlighting people who are true alchemists.

Coleen Rose:

I was for sure scared, I knew that it was going to be an uphill battle. But I feel like I did have confidence from all of the things that we had overcome in the past. Of course, that brings some baggage and some hardships for sure, but I think the fact that we had come through each one stronger. For sure, helped give me that confidence that we were going to tackle this yet again, trauma, in a way where we would be okay.

Erik Weihenmayer:

It's easy to talk about the successes, but what doesn't get talked about enough is the struggle. My name is Erik Weihenmayer. I've gotten the chance to ascend Mount Everest, to climb the tallest mountain in every continent, to kayak the Grand Canyon, and I happen to be blind. It's been a struggle to live what I call a no barriers life, to define it, to push the parameters of what it means.

Erik Weihenmayer:

And part of the equation is diving into the learning process, and trying to illuminate the universal elements that exist along the way. And that unexplored terrain between those dark places we find ourselves in in the summit, exists a map, that map, that way forward, is what we call no barriers.

Jeff:

Coleen rose is a military caregiver for her husband John, an Active-duty Marine. While on his second tour in Afghanistan, John was wounded by an IED blast, sustaining vision loss and extensive injuries. Coleen acted as his caregiver, and then in 2016, the roles are reversed, when Colleen was diagnosed with breast cancer. Several years later, Coleen has helped her husband and retain his active-duty status.

Jeff:

And Coleen is cancer free and in remission. And they're proud parents to their baby Declan. Colleen serves as Adult Caregiver fellow, placing her in a great position to advocate, and provide encouragement for all caregivers. Sharing her experiences not only as a caregiver, but as a care recipient.

Erik Weihenmayer:

Welcome everyone to the No Barriers Podcast. Thanks, Jeff, for joining me, hosting today. You've been away for a little while busy with your family and stuff. But good to have you back. And Coleen, it's totally awesome to have you on the podcast too. And thanks to Prudential today for sponsoring the episode. Well, let me just dive right in, and Coleen, and I ask you, so you guys are new parents, right? Declan is your son? How old is he now?

Coleen Rose:

Yes. He's just about 15 months old. Oh, my God.

Erik Weihenmayer:

That's exciting. So what's that like being a new mom? And what's the co-parenting relationship, or dynamic between you and your husband? How does that work with Declan?

Coleen Rose:

Yeah. I think we've been through some trials and tribulations in our life, and this is a new, exciting phase of our life, but it's still a transition. So we're trying to figure out how we navigate as parents now. My husband has a disability, I've been through cancer as well.

Coleen Rose:

So we have a lot of our own baggage and own things that we've gone through. So now we're trying to navigate, taking care of each other, taking care of this human, keeping him alive, and also continuing to take care of ourselves. So it's been it's been tricky, but it's the best.

Erik Weihenmayer:

I noticed that you said in the bio that, John has trouble with his vision, so it's hard for him to cut little toenails and things like that. I could never do that either, I would have cut a toe off.

Coleen Rose:

Yeah. Exactly. Yeah. He's-

Erik Weihenmayer:

I was restricted from that role. Yeah. All my kids have all their fingers and toes.

Jeff:

Really long fingernails and toenails at this point.

Erik Weihenmayer:

Yeah. When I told my wife that I couldn't change diapers, and she's like, "Whatever dude, you climbed Everest, so get in there." And I know this is really gross, but I had my daughter on the changing table and a little ball of poop somehow, rolled off the table and bounced across the carpet. And so that's one of my, I guess, fond memories, on my hands and knees crawling across the room looking for this little pebble that had bounced into the corner somewhere.

Coleen Rose:

How did finding a go did it?

Erik Weihenmayer:

I found it. Oh, yeah, I found it. I'm Pretty capable.

Jeff:

Yeah. And you're lying there for dropping poop on the floor.

Erik Weihenmayer:

Yeah. She's 21 now, so I don't know if she's going to appreciate this story.

Coleen Rose:

I was just going to say, I bet she loves hearing that story.

Erik Weihenmayer:

No. Yeah. But so, I bet your husband's had a few of those situations too, right? A few mishaps, or a few big learning episodes in the parenting category?

Coleen Rose:

Yeah.

Erik Weihenmayer:

It's very different, carrying is pretty opposite of being a Marine, right? Although they do have to take care of each other of course?

Coleen Rose:

Yeah. That's that's exactly true. They adapt and overcome, for sure. But when you're a big, strong Marine, and you have this little baby that melts your heart, I think life changes a lot. And I think it's hard, and not like clipping baby toenails is anybody's favorite. The first time I clipped the baby's nail, I of course, cut him and he was bleeding, and I totally freaked out. My husband is like, "It's fine. It's way better than if I was going to do it. So he'll be okay."

Erik Weihenmayer:

Yeah.

Jeff:

Well, you already had this wheelbarrow of collection of challenges that you were managing just the two of you. And so, yeah, why not just throw this other huge learning opportunity, set of challenges in life, raising a newborn kid, I guess.

Coleen Rose:

Yeah. And it was during the pandemic too. So we're lucky that we have a great village that supports us, our family, our friends, people that we've met along the way. But we couldn't really tap into any of that in the beginning, because he was born in April 2020. So nobody could go to the hospital.

Erik Weihenmayer:

Oh, right in the beginning?

Coleen Rose:

Yeah. Right in the beginning. We were just so thankful that John could be there with me. Because at that time, there were some hospitals that weren't even allowing caregivers to be there with somebody who was giving birth. So we were thankful for that. But our family didn't meet him until he was four months old. So it was a lot. We were hoping to tap into that village, but we just weren't able to in the beginning.

Jeff:

You live in the DC area, is that right?

Coleen Rose:

Yeah. We live in Northern Virginia. Yep.

Jeff:

Did you live there prior to John's military commitment, when he joined, or was this post, for rehabilitation purposes and therapies and so forth, like that?

Coleen Rose:

So yeah. So when John was injured, I was living in New Jersey, and he was living in North Carolina, in Camp Lejeune. So since his injuries, we've moved a few times. So John's military career brought us here to Northern Virginia.

Erik Weihenmayer:

How'd you guys meet?

Coleen Rose:

So it's funny. I'm from New Jersey, and he's from Alabama. And we met in North Carolina, of all places, pretty much right in the middle. So I had run into a childhood friend over winter break, and she wanted to visit her fiance before he deployed to Iraq. So I said, "Sure. I'll get in a car and drive down to North Carolina with you, so you can see your fiance." And John was friends with her fiance, and we met at that weekend.

Jeff:

So John had a fiance too down here?

Erik Weihenmayer:

Yeah. Right.

Coleen Rose:

I know. And then we spent about a weekend together, and then he deployed to Iraq. So the timing was interesting.

Erik Weihenmayer:

That was his first deployment?

Coleen Rose:

Yeah. His combat deployment, yeah, that was in 2005.

Erik Weihenmayer:

Mm-hmm (affirmative).

Coleen Rose:

And he would call me, and email me, and I'm like, "Dude, aren't you in the middle of a war? You want to talk to me?" And he's like, "Yeah. I like you." And I'm like, "Okay."

Erik Weihenmayer:

Were you nervous to get involved with a Marine, knowing that he'd be away a lot, and so forth, that's a hard life you sign up for?

Coleen Rose:

I think I was a very naive 21 year old, who really just kind of fell for this super charming, handsome man. And I wasn't really thinking about all that would come with being a military spouse. I think that's how they trick you, those Marines, so hands up for me.

Erik Weihenmayer:

It sounds like climbing. It's better not to know what you're about to get involved in. Right? It's like lack of knowledge, is actually can be a good thing for you, or you'd never sign up for it. Coleen, and maybe me you feel to talk to my wife and probably commiserate a little bit. When she first met me, she was like, "Oh, my gosh, this is so great. Such an adventurous mountaineer.

Erik Weihenmayer:

It's going to be dope." Oh, my gosh, this dashing marine is adventurous, and he's brave and courageous. And then fast forward a few years, and she's like, "Yo, dude, you need to be home a little bit more. Maybe you could go places that probably aren't going to try to kill you." That is what she said.

Coleen Rose:

Great.

Erik Weihenmayer:

Yeah.

Coleen Rose:

Right. Like, "Maybe prioritize your health." Yeah. So I think we would get along very splendidly.

Erik Weihenmayer:

So you guys get married, long story short, you get married, fall in love, get married. And then he goes off for a second to combat deployment to Iraq, if I believe, right? And 11 months into the marriage, you're just like newlyweds. He gets injured bad.

Coleen Rose:

Yeah.

Erik Weihenmayer:

And so would you mind telling us about that? I know that's the question that everyone asks, but still it's important for people to understand what that was like for him.

Coleen Rose:

Yeah. So John, it was Afghanistan, actually.

Erik Weihenmayer:

Excuse me.

Coleen Rose:

Yeah. So it was 11 months after we got married. And I think it was just a few months into his deployment. He was injured by an improvised explosive device. He was on a convoy, and one of the vehicles got hit by one of those IEDs. So he jumped out of his vehicle to help guide a record truck in to help that first vehicle, and then another explosion went off. And that was the one he was injured by. So it took him three days to get back to the United States.

Coleen Rose:

He went to Bagram Airfield, then he went to Germany, and then he came to the San Antonio Military Medical Center, because they specialize in burns. So John was labeled seriously injured, and he had pretty extensive injuries. He has burns on 20% of his face. He lost vision in one of his eyes, he broke his hip, he shattered his hand, his rest, his forearm. He lost half of his teeth, he fractured his jaw bone, he perforated his ear drums. It's a pretty nice, long, extensive little list of injuries that had happened.

Erik Weihenmayer:

Mm-hmm (affirmative). Yeah.

Jeff:

I think some people get thrown into that situation, perhaps just even say, "I can't do this, it's too much. I don't have the bandwidth for it." And some people just go towards it, and gravitate towards it. And so where do you think you fall in that spectrum?

Coleen Rose:

I think I grew up in a very loving and caring home. I think both of my parents are very giving of themselves. My mom had taken in our relatives to live with us, my great grandmother, my grandmother lived with us. And she was caring for them as they aged. My dad was a firefighter for 35 years, and is also in a bagpipe band. So as a kid, I even remember going to fundraisers for family members of guys that he worked with, or people that have just come on hard time.

Coleen Rose:

So I think that I was very much raised in a family that service was really important. But I do think that the hard skills of being a caregiver I wasn't really prepared for. I was young, and I had graduated, I was about a year out of grad school. So I had just started working as an occupational therapist, but I was very absent minded.

Coleen Rose:

I was the girl that locked the keys inside of her car, probably like six times in a year. And just very forgetful, and kind of the absent minded professor. Well, I had it in my heart, for sure. I think those hard skills were definitely lacking, at least in the beginning.

Erik Weihenmayer:

It must have been... Again, I think your question, Jeff, is a really good one. Because no matter whether you had, that loving spirit within you, you sign up for a marriage, and then 11 months later, a lot changes. It must have been a massive shock. The game changes suddenly, like a blink of an eye.

Jeff:

Unlike your relationship, Erik, Ellie knew what she's getting, she's getting a blind spouse, right? I know I'm going to have to be a certain type of spouse. Coleen, married a man who then would have this immediate hard stop. And then you're forced into something else.

Erik Weihenmayer:

And probably supporting him in ways that you never envisioned, supporting your husband, you know what I mean? Especially in the beginning, when he was probably really messed up.

Coleen Rose:

Yeah. And we had never even lived in the same state as each other, let alone lived in the same house, in the same room. So our first couple of nights together... We had gotten married, and then he deployed. So our first nights together as a married couple, were really in the hospital. And then when he was released, we had stayed in a hotel that was on base.

Coleen Rose:

And I had to bathe him, and do wound care, which was excruciating for him. But he does always say that the scariest thing was probably when I shaved his head. He said, that would be the first and the last time that that would ever happen, because that was not fun for him either.

Erik Weihenmayer:

Mm-hmm (affirmative). Has he drastically improved, in terms of health and stuff today?

Coleen Rose:

Oh, yeah. John is still in the Marine Corps. He plays a very active role. He's had three promotions since his injury, he is independent as can be physically. He still is visually impaired, and has lots of back, and knee, and hand, and a lot of orthopedic pain that he kind of still deals with. But he's pretty independent. I still provide him some care, but it is pretty minimal compared to what it was when he was first. injured.

Jeff:

Okay. So what year was his injury?

Coleen Rose:

2010.

Jeff:

  1. Okay. So we spend the next year or two slash in perpetuity, where we're clearing, we're getting John back up on his feet literally and figuratively. Okay. We're reclaiming everything and then bam, right out of no where, here it comes, 2016, What happened then?

Coleen Rose:

Yeah. So in 2016, I was diagnosed with stage two breast cancer.

Jeff:

On just a standard annual mammogram or something?

Coleen Rose:

Yeah. So I found a lump in my breast. And I thought, "Oh okay, this is probably nothing, but I'll get it checked out." And my doctor, thankfully, listened to me and thought, "I don't think this is anything, you don't have a family history. Let's just go get it checked out." And then when I went to get the mammogram, they said, "Oh, we're going to do an ultrasound. Oh, no, we're going to do a biopsy. This is a little more serious." And then in October of 2016, I found out I had cancer.

Jeff:

Mm-hmm (affirmative). Oh, and you're like, "Party, here we go."

Coleen Rose:

Oh, yeah. This is great. But we did at least feel like, "You know what? Hey, this isn't our first rodeo. We've been through something before. This is something else we can kind of tackle." But it was also like, "Okay, sure. Why not? Sure. Of course, I have cancer." Right?

Erik Weihenmayer:

Well, okay. So his injury, huge, your breast cancer, huge, right? But in the middle, there's also another event, which is that you're in a parade, I guess celebrating in San Antonio, and a train hits your parade vehicle? Come on.

Coleen Rose:

Yeah. We were invited. This was right before-

Erik Weihenmayer:

Are you Irish or something?

Coleen Rose:

Yeah. With the name like Coleen, yeah, a little bit.

Erik Weihenmayer:

Yeah.

Coleen Rose:

Yeah. A few months before we were slated to leave Texas actually, and John was going to get back to more active role in the Marine Corps. We were invited on a week long respite kind of celebration for wounded warriors and their spouses. And part of that was participating in a Veterans Day Parade, which started as something really beautiful. The town was honoring and thanking us for all of our sacrifices. And then the parade float that we were on was hit by a train.

Erik Weihenmayer:

And it broke your collarbone? You're injured pretty badly.

Coleen Rose:

Yeah. We were incredibly lucky, because four people died that day, for wounded warriors, for heroes that served their country were killed when the train hit the parade float. So we count our blessings, that was just such a horrific accident. But yeah. I was injured, my collarbone was snapped, the bottom of my spine was fractured, my sacrum, and then my elbow was also fractured.

Erik Weihenmayer:

I'm not shamelessly promoting my last book, but in my last book I wrote about these things that happen to people. And I was being a little flippant, I guess, but I compared it to the old Monty... You're probably are too young for this, but there was this old show called Monty Python's Flying Circus. And it started with this village, they'd be all happy, everyone's smiling.

Erik Weihenmayer:

And then this foot comes out of the sky and just squishes the whole village, a giant foot. I call it the cosmic foot. That's why it's so existential. You're on a parade, you're celebrating life, and recovery, and rehabilitation, and getting back to life. And then four people die, and your lives are thrown into chaos again.

Coleen Rose:

Yeah. I tend to be a little bit of an anxious person, but I think that it really ramped up after that. Because it's like, I worry about, maybe getting hit by a car, maybe falling in a manhole when I'm talking on my phone. But to be hit by a train during a parade is something I would have never even thought could happen.

Jeff:

Yeah. That's not normal schedule. But now you're a new mom, so your level of anxiety is probably like, "Oh, it's for real."

Coleen Rose:

And you know what? It's funny, I think he's kind of mellowed me out-

Jeff:

Good.

Coleen Rose:

... which I was not expecting.

Jeff:

Yeah. This would be the other way around, right? That mama bear thing, it's like, "No. Everything stay away, I'm protecting herd, my group."

Coleen Rose:

Yeah.

Jeff:

So I'm not going to shamelessly promote my book.

Erik Weihenmayer:

Oh, Jeff has a book too, sorry Coleen.

Jeff:

Yeah. From my last book-

Coleen Rose:

I was almost doubting, you don't have.

Erik Weihenmayer:

Go ahead Jeff. You're not shamelessly promoting either. I know, go ahead. Tell us about it.

Jeff:

So I've talked about, a lot of the book was structured around adversity. And I talked about these metaphorical calluses. And I think about metaphorical calluses that we create and how beneficial they are. And it's just like in a physical manifestation, I believe if you lose the calluses on your hand, the aging process accelerates, it always works. Keep your hands' callus.

Jeff:

And then I think that really metaphorically works to our souls too. It's just some of us are provided more opportunities to develop calluses, metaphorical calluses, than others. And Coleen, you and John have had plenty of opportunities to develop those. And I feel like probably, I don't know if you agree or not, but maybe through all these, really hard theaters, the challenge.

Jeff:

You've been given the opportunity to grow, and develop, and be stronger. So that the next time that happens, almost like you said, with breast cancer, and you're like, "Of course, I do. But here we go, we're squared away. We've done these kinds of things before, and we will go forward." What do you think about that?

Coleen Rose:

Yeah. I feel like... I've been doing some reflecting on my life, and that really not fun things that have happened. And I feel like, when I've come up against a trauma, I really just go into that survival mode. And I feel like it's really about just putting one foot in front of the other. And I think that processing all of the things that have happened, typically for me, come later, when things have kind of quieted down, and quote, unquote, regular life kind of gets back to it.

Coleen Rose:

But I think that... Even when I was diagnosed, I kind of just had a very quiet confidence that I was going to be okay. I was for sure scared, and knew that it was going to be an uphill battle. But I feel like I did have confidence from all of the things that we had to overcome in the past. Of course, that brings some baggage and some hardships for sure. But I think the fact that we had come through each one stronger, for sure, help give me that confidence that we were going to tackle this yet again, trauma, in a way where we would be okay.

Erik Weihenmayer:

But Coleen, as you develop those calluses, as Jeff mentioned, it must have been really dark, lonely, frustrating moments where you doubted the future of it. Again, I'm not putting words in your mouth, but I'm just putting myself in that situation.

Coleen Rose:

Yeah. It's not all rainbows and butterflies. Yeah. I feel like those are the parts that get me to the point where I can say that I have a confidence. Because I've been through all of those really hard times. I think that when you become a caregiver, especially when you're so young, I think I was 25, none of my friends had ever been through anything like that. I moved to a state where I did not know a soul, and I was very isolated. And I feel like the isolation is really hard to deal with. Especially when you're dealing with really scary and heavy things.

Coleen Rose:

When John first came to the States, we didn't know what his cognition was going to be. We didn't know what his functioning was going to be like, would he be able to see? Would he be able to move around? There were so many unknowns. And I think that survival mode kind of saved me for that. But for me, all of the emotional processing, always came afterwards. So after John's injuries, after the train accident, when we moved to North Carolina, and our lives, quote, unquote, kind of got back on track, that's when I started to have panic attacks. And that's when I started to have some depression.

Coleen Rose:

Because I feel like my body was pushing away all of the feelings, because I truly just could not deal with it at the time. Because I had to complete paperwork, and I had to go to physical therapy, and I had to get better. But then when things kind of got back to status quo, that was when my brain and my body were like, "Oh, no. You did not get away from this scot free. Here's everything else that you now have to deal with all at once."

Jeff:

Yeah. You were forced to acknowledge the fact that now there's more empty space for all that stuff to occupy.

Erik Weihenmayer:

What do you do to fill your cup? What do you do to be good to yourself, when you need to take those breaks?

Coleen Rose:

Yeah. So for me, moving my body is really helpful, exercising is a big deal for me. I'm not as consistent with it as I would like to be, but on the days when I'm consistent with it, I feel better, and I meditate, which I think is helpful. And I've also done a lot with the Elizabeth Dole Foundation, which has been really a great way to fill my cup in a very fulfilling and new way for myself.

Erik Weihenmayer:

Tell us about that. So you're adult fellow, and you work with other families and caregivers to spread information and be a support system for that community. Right?

Coleen Rose:

Yeah. So the Elizabeth Dole Foundation is just, I think it stepped into my life at a time where I was really looking for some other type of fulfillment. I had just moved to Virginia, in a state where I didn't know anybody, I was starting a new job, I was recently out of cancer treatment. And I had met up with a few friends of mine, and they were Dole fellows, and they were talking about how great the program was. So kind of on a whim, I applied, and then when I was accepted, I feel like my world just kind of opened up.

Coleen Rose:

And one of the great things about the fellowship, is that they understand that we are caregivers, so that is our main priority. So they give us the freedom to do or not do as much as we can and want to do. So one of the parts of that is, we can talk to our legislative officials about things that are difficult for us, that are impacting our life. And one of the really exciting things that had happened, was I spoke to a congressman in my state, and he listened.

Coleen Rose:

And he recently introduced a bill, that was partially my idea about including caregivers in the public service, Loan Forgiveness Program. So it's been just a really exciting time to be involved with such a great organization, to feel heard, to be able to advocate for other people that are like me and struggling like me. It's been great.

Erik Weihenmayer:

Explain that bill again one more time, so I understand. Including caregivers, and what capacity?

Coleen Rose:

Yeah. So there's a lot of help out there for veterans, caregivers, the help is starting to come a little bit more now. So for caregivers that want to go back to school after their loved one is hurt, there's lots of help for them, they can use the GI Bill. If my husband had student loans, they could be forgiven. But for caregivers that are like me, that have pre existing student loan debt, there really isn't any help.

Coleen Rose:

And the idea that I have is including caregivers in a pre existing Loan Forgiveness Program. So teachers, first responders, volunteers can apply for student loan forgiveness after 10 years of on time payments. And my thought was, why shouldn't military and veteran caregivers be included in this bill, I feel like what we're doing is a public service?

Coleen Rose:

It's saving the country literally billions of dollars keeping veterans in their homes and healthy, and being cared for by the people that love them the most. So this bill would do just that, it would include veteran caregivers who are providing at least 25 hours of care to their loved one, they could apply for public service loan forgiveness. So after 10 years, the rest of their loans would be forgiven.

Erik Weihenmayer:

Mm-hmm (affirmative). Do you think it'll pass?

Coleen Rose:

I hope so, it has bipartisan support, which I think is great. So my representative is a Democrat, Representative Gerry Connolly, and he got Representative Mike Turner, who is a Republican on board. So hopefully that will help, they respond.

Erik Weihenmayer:

Yeah. Sounds nonpartisan idea. So that's really cool, I hope it goes through. Because law-

Coleen Rose:

Yeah. You hope. Veteran issues are supposed to be nonpartisan issues. So you would think that veteran caregiver issues would be nonpartisan too. So fingers crossed.

Jeff:

And now you're all these things, and now you're politically active.

Coleen Rose:

The sky's the limit.

Jeff:

Yeah. I've always thought that medical personnel, I'm a physician assistant, I've always thought that docs, PAs, even physical therapists, nurses should all... And at some point will be a patient, to understand how to advocate, how to treat how to, how to manage, and how to be a human being.

Jeff:

And so here you are advocating for caregivers, but you have this whole other shade of being a care recipient. So do you feel like obviously, that gives you just another tool in your quiver to be able to use as you advocate from this perspective?

Erik Weihenmayer:

Yeah. Because when you got breast cancer, you're now having to be supported by John, so it's like role reversal. Yeah. I'm really fascinated by that too, that must have been pretty wild.

Coleen Rose:

Yeah. And I think that was really difficult for both of us. And I think a big takeaway of that is that, we both prefer very different types of care. Like my husband did not really want me helping him, he wanted to struggle to do the hard stuff. He wanted the time to really figure it out and do it on his own. And I wanted to be coddled like a little baby most of the time.

Coleen Rose:

And I wanted to talk about my feelings, and have him do things for me. But that wasn't the care that either of us were really giving to each other, because we were giving the care that we would want. So it definitely led to some frustration of him saying like, "Please let me do this." And then me saying like, "Please give me more."

Erik Weihenmayer:

Right? Wow, that's really helpful for people, that you're cared for in different ways, there's not one uniform.

Coleen Rose:

Yeah. And I and I also think that it's helped me. So I'm an occupational therapist, and I work with children and families. And I think that it also helped me in my practice there as well, because I've been on every side of the therapy dynamic. Now, as somebody who's gone to physical therapy, I'm not a physical therapist, but I've experienced that, I have provided occupational therapy.

Coleen Rose:

I've been a caregiver to somebody who's provided occupational therapy. So I feel like it really gives me a better understanding. Well, of course, I don't know everybody's situation, but it helps me get it a little bit more about how difficult it is to schedule these things amongst everything else that has to happen.

Erik Weihenmayer:

I'm completely stereotyping, but I'm picturing him my head like John, like, "Come on a woman, tough it out. Come on, get up, we'll do some calisthenics, that would help you."

Coleen Rose:

Exactly. So after the accident, I had this walker, which was pretty intense, because I was non weight bearing. And he totally pimped it out, like the kids say. He covered it in duct tape and lights, and he put a little fake deer head on it. So I'm carting around Texas in this walker, and it was in the backseat. And we get home, and he gets out of the car, and he goes inside. And I'm sitting in the passenger seat, like, "Are you going to get this Walker for me? Are you going to help me out?" And then I called him, and he's like, "You'll figure it out. It's okay."

Coleen Rose:

So meanwhile, I can't put any way through one of my legs, I can't really use my arm because my collarbone is broken. And I figured it out, but this was like the Marines caregiving style, this would not have been the caregiving style that I would have chosen. I'm sure he can give you stories of me asking him 5,000 questions that drove him crazy, "Can I get to this? Would you like this? Can I move this pillow? Can I do this? Can I do that?"

Erik Weihenmayer:

Right. But in his mind, he's doing what he would want to be done to him?

Coleen Rose:

Exactly.

Erik Weihenmayer:

So yeah. That makes sense.

Coleen Rose:

Yeah. And he's thinking, "Well, you know what? She's going to be more independent, she's going to get stronger, she's going to figure out." And it's not incorrect, it was just not what I was expecting at that time.

Erik Weihenmayer:

And it sounds like that's one of those things that in retrospect, now, you're more retrospective, or you get it now, but maybe at the time, you didn't get it?

Coleen Rose:

No, not at all. No. I was furious. I'm like, "I'm staying here broken, and you're inside, this is not okay." And I think our caregiving styles, because we still take care of each other. Because as our bodies get older, they don't get better. So we're still taking care of each other in different ways now, and I think it's still a learning process. I think we're still figuring out how best to gently encourage each other in different ways.

Jeff:

Mm-hmm (affirmative).

Erik Weihenmayer:

Awesome.

Jeff:

Well, you know the 32 flavor Baskin-Robbins deal is just like us as humans, right? So there isn't an absolute recipe, I think to be able to reach someone on their level. And the onus is on the caregiver to reach them where they need to be reached, right? It's not, "I learned this in school," or, "This is how it works for me. This is me asking questions, and then listening, and then creating an input."

Jeff:

And then, "What do you need? What can I do to make you better?" Because yeah. All the spectrum of people in front of you are not going to require the same thing. So I think the relationship you have with John, and both of your processes has really illustrated that, right? Like, "Oh, this is about me, because I'm your caregiver. This is about you, so let's figure this out."

Coleen Rose:

And I think it's just a lot of trial and error too. And I think it's like, "Well, let me try to be rude. Okay. That didn't work. All right. Try to be funny. Okay. That kind of works. Let me try to be nice." I think it's just throwing a bunch of stuff at the wall and kind of seeing what sticks, which takes a lot of time.

Jeff:

Yeah. It's a good point.

Erik Weihenmayer:

So John wanted to stay in active military, and he has achieved that, right? So that's pretty awesome. And tell us, again, what he's doing now. And I think he works with Wounded Warriors as a liaison with them?

Coleen Rose:

Yeah. John, loves the Marine Corps. And he's, in my opinion, such a asset because, the service and the organization are just his top priority. So who better? So right now, John works at the Wounded Warrior Regiment, and he is really working on that higher level to help people like himself. And as somebody who's gone through that process, he really intimately understands it. And he is not a shy man.

Coleen Rose:

So he is the first one to speak up and say, "Excuse me, that is not correct." Or, "You know what?" This is working great, let's keep doing this," or, "Hey, let's fix this." So again, I feel like the battles that he has fought outside of the war zone have been huge. And I feel like he's in a place now where he can better the organization that he loves, and has given so much for.

Jeff:

You both must be so proud of each other. You must be so proud of him to have gone through this, and then now he's an advocate, now he's a caregiver. And then he's watched you go through all these events with him. And you haven't just laid down, you both stood stood up. And I can just imagine how proud each of you are of the other, it's a really cool thing to have relationship.

Coleen Rose:

Yeah. I say this about him at, but it is the truth, he makes the impossible possible. He just sees something, and he has a very clear vision of what he wants to do, and he finds a way to do it. And people will say, "Well, that hasn't been done before," or, "You can do that." And he's like, "Okay. Sure. Perfect. Great. I'm going to do it." And it just amazes me time and time again, the things that this man does. And he just does it, which is amazing.

Erik Weihenmayer:

Despite your struggles, you guys are a success story in so many ways, but some people aren't, right? Obviously, people struggle, they're in their basements eating ramen noodles, they're injured, they don't have the support system. Is there any recipe, anything that you've learned along the way that's so essential to this journey, whether it be support from the military, or the community, or from your family? Because you see so many people failing, and struggling, and just not living up to that can do attitude that John exhibits?

Coleen Rose:

Yeah. And for me, anyway, I think it's not just one thing. I think I have times where I'm eating that ramen in the basement, and there's some times when I'm on top of the world. But for me-

Jeff:

Let's not go ramen under the basement.

Coleen Rose:

I eat that, not in the basement as well, I'll leave that in the regular kitchen that with a fancy spoon too. But I think that for us, our community has been huge. And I think that when we've found our people, the more that we've gotten involved, the more that we've met people that are like us. The people that just kind of get it, the better we felt.

Coleen Rose:

And I think that, for me, that's helped me crawl out of my home more than a few times. Is knowing that, I'm not alone, I'm not the only person experiencing this. And then seeing those stories of hope, talking to caregivers who are further down the line, and who figured it out, and know what to do. And then learning and listening to them. I feel like for us, that's that's been huge.

Erik Weihenmayer:

Mm-hmm (affirmative). Awesome. Well, Coleen, thank you so much. It's been really valuable to hear your story, and the relationship between you and John. I know it's going to help a ton of people, not only just folks who are caregiving for military folks, but civilians as well, right? It's like a whole world of support out there that we need to sort of dissect and figure out, and see if we can make life just a little bit easier for people, right?

Coleen Rose:

Yeah. And I feel like all of us at one point in our lives are going to be a caregiver, whether it be to a child, whether our spouse has a knee surgery, whether it's to our aging parents. I think most of us will find ourselves in this situation. So having a community and having some help, and knowing that there are people who are further along than you, that have done it successfully, that are people that are in the same place as you and feeling the same things. I think that it's really powerful.

Erik Weihenmayer:

Mm-hmm (affirmative). And if you could give advice, not advice, but where do people go? Do you know what I mean? Somebody who's listening to this podcast, they're like, "I'm struggling with this. I haven't figured out the answers. It's so fresh." Where do they go? Where do you recommend?

Coleen Rose:

Yeah. If you're a military or veteran caregiver, you can go to hiddenheroes.org, and get connected to Elizabeth Dole Foundation. One of the great things about them, is that they're very inclusive. It's hard to distinguish a caregiver through Veterans Affairs, but the Elizabeth Dole Foundation is not like that. If you are caring for a loved one who is in the military or is a veteran, you are welcome.

Coleen Rose:

And if you are in that situation, I feel like that's a great way to open the door to many other organizations and other people. They have a Facebook group, which is in the palm of your hand, you have people that you can connect with. And then they can send you on to places that can enrich your lives even more. So that would be my first stop for sure.

Erik Weihenmayer:

All right. Well, thank you so much.

Jeff:

You really taught us so much just in a short period of time. What it means to be what it means to be a caregiver as well as a care recipient. And I think that you're the complete package when it comes to that. So I really appreciate you sharing your experience with us because you taught us what that looks like. And keep fighting the good fight with your political advocacy, and with raising little Declan along.

Coleen Rose:

Our biggest challenge, yeah, for sure.

Erik Weihenmayer:

Yeah. Be careful with those toes and fingers.

Coleen Rose:

Yes.

Erik Weihenmayer:

They're little, they're soft. Like my hands.

Coleen Rose:

They're pointy. Yes. No calluses yet.

Erik Weihenmayer:

All right. Thank you, Coleen. All right. Thanks, Jeff.

Jeff:

Thanks, Coleen.

Erik Weihenmayer:

Okay. No barriers to everyone.

Jeff:

See you next time. Thanks again to Prudential for supporting our podcast today, and for allowing us to elevate these unique and diverse voices.

Speaker 5:

The production team behind this podcast includes senior producer Pauline Schaefer, sound design, editing and mixing by Tyler Cockman, and marketing support by Heather or colleagues, Stevie Dinardo, Erica Gui and Alex Schaffer. Special things to the Dan Ryan Band for our intro song, Guidance. And thanks to all of you for listening. If you enjoyed this podcast, we encourage you to subscribe to it, share it and give us a review. Show notes can be found at nobarrierspodcast.com. (singing).

 



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