Emotional Fortitude: The Hidden Story of Caregiving with Caitlin Dwyer

Join us on a journey to Sweden, where we met with our expert guest from Paris. When chronic illness burdens a family, where do they find strength and guidance? Caitlin Dwyer, drawing from her professional experience at the Children's Hospital of Philadelphia and her personal battle with her parent's cancer, joins us to explore the intricate world of caregiving. Her stories illuminate the resilience within caregivers and those enduring chronic illness.

In this episode, we delve into the challenging realities of caring for a child with a relentless illness, making difficult decisions for terminally ill parents, and the often-unseen struggles of caregivers themselves. Caitlin's personal narrative, intertwined with her professional insights, emphasizes the critical need for caregiver support. She underscores the importance of self-compassion, coping skills, and robust support systems, shedding light on the emotional journey often overshadowed by the physical demands of caregiving.

Our heartfelt conversation concludes with valuable lessons on setting boundaries and self-care strategies to prevent caregiver burnout. Caitlin's transition from therapist to coach empowers women balancing careers and caregiving responsibilities, offering strategies for achieving a balanced life. This episode is a powerful reminder: within the shared wisdom of our experiences, we find solace and strength, knowing we are never alone.
Don't miss this episode—it's a beacon of hope and practical advice for anyone touched by the caregiving journey.

Caitlin Dwyer Coaching | Coaching for Caregivers

Homepage - Caitlin Dwyer Therapy

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Transcript

Speaker 1: 0:05

Picture this You're standing at a crossroads, faced with unexpected challenges that reshape your life's journey. Whether you've experienced it firsthand or not, the path of living with chronic illness or becoming a caregiver for someone is a transformative one, filled with moments of profound resilience and heart-wrenching vulnerability. Let's just say this personal experience isn't on your life bingo card. If it isn't, why should you tune in? Well, because the lessons learned from the journey through chronic illness and caregiving touch on the core of human experience, revealing deep truths about resilience, empathy and the indomitable human spirit. Caregiver, someone affected by chronic illness or simply a curious listener. This episode promises to offer valuable insights and a deeper understanding of the human condition. In today's episode, we invite you to walk this path with us, as we uncover the hidden stories and powerful lessons from those who navigate these challenging landscapes daily. Join us for an enlightening conversation with Caitlin Dwyer, clinical social worker, a seasoned therapist and a visionary coach in the realm of chronic illness and caregiving. Caitlin's journey began in the bustling emergency room of the world-renowned Children's Hospital of Philadelphia, where she provided crisis intervention and support in the emergency room and nephrology unit for children awaiting life-saving organ transplants, often receiving dialysis within the first few months months of life. Her career has been a tapestry woven with threads of empathy, strength and profound insight, particularly as she's faced personal losses and the global upheaval of COVID-19.

Speaker 1: 2:09

In addition to her professional journey, keelan brings a deeply personal understanding of caregiving to our discussion. Having navigated multiple bouts of cancer within her own family, she intimately understands the emotional and logistical challenges that accompany caregiving for loved ones with chronic illnesses. This firsthand experience has imbued her with a profound sense of empathy, resilience and wisdom, enriching her ability to support others on their own caregiving journeys. Caitlin will share her unique insights on essential skill sets for navigating the challenges of living with chronic illness and those that do the caregiving. So tread carefully with us as we explore these profound experiences, recognize the strength and vulnerability and discover that, while the journey is unique for everyone, the destination of well-being is a shared horizon Well before we get started.

Speaker 1: 3:04

This episode is still being brought to you by the Recovery Collective in Annapolis, maryland. However, we are recording in Stockholm, sweden, well, caitlin, we have been listened to by 60 plus different countries, and Sweden being one of them, and we come from Annapolis and, caitlin, you come from Paris. So we are traveling from afar and we're glad to do so. So thanks for so much for joining us in Sweden.

Speaker 2: 3:31

Thank you so much for having me.

Speaker 1: 3:33

And certainly part of our purpose and our drive is to provide a collective solution to health and wellness, and I've realized that Sweden is doing that for its residents. So I'll give you and some of the listeners some stats that Sweden was named the best country for mental health in 2023 and in 2024 retains that top spot. So here's some of the statistics, since we're a podcast about health and wellness. The percentage of people in the country who work long hours is less than 1%. Wow, that's not very American, is it?

Speaker 2: 4:10

That is not very American at all.

Speaker 1: 4:12

What's considered long hours? 50 hours plus. So less than 1% of population works less than 50 hours. Another statistic that they say, man, it's great for mental health. The average number of hours people have in the day to devote to sleep, leisure and personal time is over 15 hours every day.

Speaker 2: 4:31

Wow.

Speaker 1: 4:32

Yeah, that's incredible. So it's not the eight, eight and eight.

Speaker 2: 4:36

I guess yeah.

Speaker 1: 4:38

That's ideal, and maybe they actually hit that ideal. I don't know, wow yeah, actually hit that ideal. I don't know, wow yeah, and I think we've been here a couple of days now and just noticing we're here during the week and the work week and just people outside, and whether it's the lunch hour or taking walks and enjoying the granted, it's a beautiful spring here in Sweden. It's been gorgeous, lovely and not humid, and I think the birds are happier too.

Speaker 2: 5:03

They sound happier. And you can't forget Fika.

Speaker 1: 5:05

Fika. So Fika here is, I guess, a cultural term, where you take time throughout the day, often before lunch or in the afternoon before dinner, where you sit down, enjoy a warm drink, some tasty pastries and just socialize with your coworkers or neighbors. Yeah, I've loved Fika.

Speaker 2: 5:25

It's incredible and it's so normalized, like it doesn't feel out of place in this culture, like they incorporate that so naturally and it helps it, of course, contributes to their mental health.

Speaker 1: 5:37

Oh, my goodness, are we talking to a teacher? Here in Sweden and they have a built-in time slot for the teachers to take FICA, usually around 10 am, and it's not to do the lesson planning, but no, they actually get together and have a warm drink and people bring homemade pastries and apple pies at 10 am. That's wonderful and they've done it on Tuesdays and they did FICA Friday and I want to bring that back.

Speaker 2: 6:04

How hard do you think that would?

Speaker 1: 6:05

be to do in America. It's worth a try. Hey, we like change the culture in a good way.

Speaker 2: 6:11

Absolutely.

Speaker 1: 6:12

So another thing the total area of designated green spaces within the country is so very high and even in the city there's so many just gardens and walking paths and bicyclists and places to sit down outside to eat your lunch and enjoy the outside, and we've certainly enjoyed that absolutely, and we were talking earlier just about how clean the air feels and smells, and just even for a city, absolutely, it's so wild it's, yeah, not the norm us. They're very big on their reducing emissions and things like that, and Sweden even has over 95,700 lakes.

Speaker 1: 6:52

Oh my gosh, I didn't know it was that lake heavy, but Stockholm is a city of lakes, isn't it it really? Is Little islands and lakes. Yeah, it's been awesome. And lastly, the percentage of government health care expenditure dedicated to mental health is one of the highest shares of government spending in all the world. So they're not just reactive to mental health, but they're trying to prevent the onset of mental health disorders as well, and includes investing heavily in resources and services for people. It's pretty cool.

Speaker 2: 7:23

It's really cool. It's certainly a model we should all be looking to.

Speaker 1: 7:26

Absolutely, from Paris to the States, come to Sweden. Thanks for traveling here and meeting us.

Speaker 2: 7:33

Absolutely. Again, thanks for having me. Well, let's jump into it.

Speaker 1: 7:37

Let's talk about your early history working at CHOP.

Speaker 2: 7:40

And CHOP stands for. So CHOP stands for Children's Hospital of Philadelphia. So I actually started at CHOP as an intern and I worked in the emergency room and shortly after my graduation I was hired and worked in the emergency room and then I also joined the nephrology department. So between those two experiences I was really exposed to so many different stories of illness, both acute and chronic, and not just the patient's experience but also how that experience is shared with the family. Yeah, so CHOP stands for Children's Hospital of Philadelphia and it is a renowned research and clinical center which specializes in so many unique chronic illnesses, really innovative in their care. And working in the nephrology department, which nephrology is all about taking care of the kidneys, it was really exciting to see how we were able to help kids with really serious, really serious chronic illness.

Speaker 1: 10:02

So you're working with kids that, like I said, with just a few months old, that need kidney transplants and or on dialysis. So, as a social worker, I'm sure your role involved a lot of worried and stressful caregivers and family members and parents. And tell us a little bit about that.

Speaker 2: 10:25

I do have my social work license and my role as a medical social worker initially was far less therapy focused A social worker in the medical setting, particularly in pediatrics. There's case management, there is psychosocial assessments and providing kind of like on-the-spot therapy, because the age range of our patients could be as young as newborns all the way up to older adolescents. I built rapport with the children, I built rapport with the family and tried to help support them navigating this really life-disrupting experience.

Speaker 1: 11:04

You say life-disrupting. I often call it the parent's nightmare.

Speaker 2: 11:08

Yeah, and I had plenty of parents use that word many, many times. It was so jarring, so truly life-changing, so much grief associated with with some of these diagnoses. There was certainly a spectrum of acuity. There were many kids who I would eventually see in my particular role. I worked in the dialysis unit. Primarily these are children who no longer have working kidneys and need to have a machine do the job of the kidneys.

Speaker 2: 11:42

There's a couple different types of dialysis. There's a type that you do at home every day. There is a type that you have to come to CHOP and do three to four times a week and this is all. While you wait for a kidney transplant, you have to keep doing dialysis until that kidney transplant occurs. And so you can imagine if you're doing dialysis at home every night, the parents are doing that. Your home becomes a medical center. Rooms are transformed, they're filled with equipment, supplies. Overnight, your child's attached to a machine where alarms are going off, where there could be emergencies. If you're doing it in center, your parents who are trying to get their kid to a hospital that could be up to two to three hours away, because pediatric dialysis is super duper rare. Not just every hospital has that, so the toll of this caregiving was pretty substantial.

Speaker 1: 12:41

Talk more about, and you said the word grief. If you're not going through this, I wonder if that gets lost in some people that can't empathize or relate to that. What do you mean by this grief experience for the caregivers?

Speaker 2: 12:54

Yeah, you know, it's really heartbreaking when, especially as a parent, you have this beautiful child. You have all of these hopes and dreams. You're imagining what it's going to be like growing up, or seeing your child grow up, and then you get a diagnosis like this and all of a sudden, those hopes and dreams change. They could be completely obliterated. And dreams change, they could be completely obliterated. And so there is this grief about a loss of normalcy, a grief around what your child will be able to do, not be able to do, perhaps grief around even life expectancy. Sure.

Speaker 1: 13:36

Yeah at minimal, having what we thought would be normal and going into a new normalcy the way you explained that. That's a grief period.

Speaker 2: 13:45

It's absolutely a grief period and that was something that I really encouraged and I have to say our entire medical team was really good at doing this, really encouraging parents to process that, like we really did all recognize.

Speaker 2: 14:00

We know this is not what you thought this was gonna be, In fact we know that this isn't how it should be, but this is what it is. This is really awful. Let's try to work through this. And our hospital, I think, was exceptional at providing that psychosocial facet of care to help honor just the intensity and significance of that toll.

Speaker 1: 14:28

Yeah, and we as clinical social workers know how important that is for change and transition and coping with that new change. Yeah, that's big. That sounded like a stressful work environment you were in.

Speaker 2: 14:44

It's a very stressful work environment.

Speaker 1: 14:46

You should see her face.

Speaker 2: 14:48

There's a reason I'm not in that environment anymore.

Speaker 1: 14:51

So you did quite the service work, social work. For how many years were you at CHOP? So I was a medical?

Speaker 2: 14:58

yeah, I was a medical social worker, Gosh. I was a medical social worker at CHOP for about 10 years and during that time, about five, six years into my time there, I got my license, my clinical license. So I became a licensed clinical social worker, which, in Pennsylvania, that gave me the opportunity to open a private practice and I began to see clients in a private practice therapeutic setting, which was a bit of crisis management education. How else would you explain?

Speaker 1: 15:33

those very viable skills that you were helping caregivers with.

Speaker 2: 15:47

Yeah, I would say in um at CHOP, it was a lot of education, a lot of crisis management, a lot of immediate problem solving, a lot of solution focused work like, okay, you can't access these medications, you can't access this medical care, you can't access these supports how can we figure out a way of getting that? A lot of liaising between the hospital or the medical team in schools, with children and youth services li Liaising was a big part as well.

Speaker 1: 16:20

And with this example, you're showing how this type of chronic illness is life-changing, not just for the client experiencing this chronic illness, but the caregivers.

Speaker 2: 16:34

Yes, yes, tremendously life-changing. I recall some parents having to make really hard decisions should one of the parents end up resigning from their job because someone was going to have to bring their child go to a medical treatment by themselves. Certainly, many parents had to allow their child to come to treatments by themselves because maybe they weren't in a position where they could not work anymore. Yeah, so there was a toll on caregiving from a logistical standpoint, in terms of jobs, in terms of transportation costs, in terms of jobs in terms of transportation costs. A really distressing challenge for these caregivers were also that for many of these families, the patient, the child who was getting dialysis, was not their only child. Yes, and so we don't talk too much about how the siblings Are affected. Yeah, and we talk about it within pediatric healthcare, which is great. I mean we have this isn't just at CHOP, but in other pediatric hospitals. We have incredible professionals called child life specialists and at CHOP did great things. They partnered with social work a lot and doing like sibling supports to help offer a place for siblings.

Speaker 2: 18:03

But back to challenges for the caregivers. Think about being a parent having to feel like you're choosing between which child is getting your attention. I recall one situation where there was a family and a family with a coupled parent, with coupled parents, multiple children and one of the siblings of the patient won a tournament or was going to a tournament. That was out of state, but the patient needed dialysis, and I mentioned earlier that pediatric dialysis is not something you can just find anywhere, so we have to figure that out. So that was something I would often do, trying to coordinate dialysis care for our patients out of state, and where this tournament for the sibling was, there was no pediatric dialysis available, and so what ended up happening was one of the parents had to decide not to watch their other child at this tournament.

Speaker 1: 19:02

Yeah, I think Jennifer and I, we often see those clients. They are the sibling of someone with, whether it be special needs or chronic illness, and there's no such thing as balance when it comes to being a full-time caregiver.

Speaker 2: 19:20

Yeah.

Speaker 1: 19:21

So the 50-50 balance? I mean it's hard to get that in any aspect of life, let alone the bonding patterns or role as a caregiver and parent. And sometimes, what would you say, the children often get or feel lost because of the triage or priority.

Speaker 2: 19:40

Absolutely and also guilt because, a lot of siblings are aware of why their sick sibling is getting all the attention they're able to cognitively recognize or just like logically recognize, like well, of course my parents need to help my sibling Look at how sick they are. But they're going to naturally feel frustrated, maybe minimized, maybe hurt, disappointed. But then they feel guilty because they're like well, shouldn't they be with my?

Speaker 1: 20:06

sibling.

Speaker 2: 20:07

Why am I feeling this way? So yeah, I imagine that when you talk about your clients, there are so many layers, so many complex.

Speaker 1: 20:17

you know teasing apart desires, so many complex, you know, teasing aparts and you kind of explained that internal dialogue, trying to determine what is healthy, what's empowering the guilt, like you said, and then becoming that wise or healthy part of self now where they're at now is going to be a challenge in relationships or in work. It just transforms yeah.

Speaker 2: 20:35

And it really is like a study in how to hold multiple hard things at the same time, like where you're able to say, yes, I understand that my parent couldn't come to my tournament because somebody needed to stay with my sibling to get them to the treatments that was only available back home. It's okay to hold that while also holding. I'm really sad about that. I'm really hurt about that. I really wish that that was not the case. I imagine that's a lot of the work that you and Jen do, yeah.

Speaker 1: 21:03

And when our daughter was our youngest was diagnosed with a condition, a rare condition. One of the things that we asked the doctors well, what are some services? That you can have for our other child. You'll laugh at this there's. Maybe you should start a support group. You'll laugh at this there's. Maybe you should start a support group.

Speaker 2: 21:27

Give me 10, 20, 30 years, Right, let me, let me be a, let me be a someone that needs help. That sounds like so, like tone deaf, um, like good intention.

Speaker 1: 21:32

I'm sure Cause so many of the best luckily we laughed about that in the elevator but like but I'm glad to hear that chop that this is a specialty with conditions and illnesses that focuses on that family dynamic and it's so important for caregivers, whether it's a parent or whether it's the other children, you name it that this affects the family dynamics.

Speaker 2: 21:56

It absolutely affects the family dynamics. It can't be ignored.

Speaker 1: 21:59

Yeah, I interned. There was a program for my internship and my master's called the REM program, which stands for rare and expensive case management. So it was a program where whatever the state of Maryland considered rare and expensive so it was everything from cystic fibrosis to spina bifida to things that you know the average person would never hear or dream about. And it was very telling to me as a an intern and we would go into the homes or where they work to help with services and the effect that it had on marriages yes, because, because the hat that the parent had to be as primary breadwinner or the worker or someone often took the lead as the caregiver and that certainly can affect the role as husband and wife or marriage, whatever that bonding pattern is. So it was very telling to me much earlier in my career. Ooh, there's a lot at play here.

Speaker 2: 23:00

So much at play. I think it's so important. You mentioned that role piece.

Speaker 1: 23:04

So I think this is one thing that Caitlin and I are mentioning, Whether it's for yourself as the caregiver, whether it's for your children get support services.

Speaker 2: 23:14

Absolutely, and talk to your medical team and hopefully they won't say, hey, maybe you can start something.

Speaker 1: 23:21

They wisely sent us to the case manager and social worker. Yes, that's what you want to do.

Speaker 2: 23:26

You certainly want to ask your medical team if case management or social workers available. Look for services.

Speaker 1: 23:33

Essential, but how many years at CHOP?

Speaker 2: 23:36

I was at CHOP for about 10 years.

Speaker 1: 23:38

That is a career in that field.

Speaker 2: 23:40

It is a career.

Speaker 1: 23:43

Thanks for helping so many. Oh, that's sweet Thank you Tell us about the transition from working there to your next chapter.

Speaker 2: 23:52

Yeah. So, like I mentioned, about six, seven years ago, I started working in private practice doing psychotherapy and I was so fortunate that I was able to start off very slow, and so the first few years I was only seeing a handful of clients and I was slowly building up my caseload and it was really just such an incredible, incredible experience. Then, come 2020, so many big things happened For the world, for the entire world, but personally for me, there were a lot of well, there were two really big losses that forced that, really forced. It forced me to take a closer look at my career, my life, all of that good stuff. And in early 2021, I decided to leave my job at CHOP so bringing to a close about 10 years there, and I decided to focus entirely on my psychotherapy practice.

Speaker 1: 24:55

Your family dynamics. Did that play a role with leaving CHOP?

Speaker 2: 25:00

Yeah, it absolutely did. So long story short, cancer has just kind of helped itself to our family.

Speaker 1: 25:13

It weaseled its way in.

Speaker 2: 25:15

Yeah, so like cancer really wheeled its way into my family, as so many families have been affected, cancer really has a way of doing that. My mom was diagnosed for the third time in 2016. And unfortunately, she passed away in January of 2020.

Speaker 1: 25:34

Tell me more about your mom's cancer, if you don't mind.

Speaker 2: 25:38

Sure, yeah. So my mom had breast cancer three times. She was first diagnosed in her early 40s. I was nine years old when she was diagnosed the first time, and then we suspect that it recurred a second time when I was in grad school and then she had it a third time. She was diagnosed for a third time. Again, we believe it was a recurrence and she was actually doing really well for a long time. She was diagnosed in, I believe, 2016, 2017. And then, in 2018, my father was diagnosed with cancer.

Speaker 1: 26:16

He was diagnosed with esophageal cancer and he had elected to not pursue treatment. Now, just because of I'm trying to understand the timing and, to me, the emotional powerhouse I must have on their children. You, your mom, was diagnosed with breast cancer for her third time while you found out, your dad.

Speaker 2: 26:35

Mm-hmm.

Speaker 1: 26:35

Ooh, okay.

Speaker 2: 26:37

Yeah, and at the time we heard about dad, we mom was getting treated. At that point we knew that the cancer was never going to go away from my mom, but we had thought that it was something that she was going to be able to maintain with, with ongoing treatment, chronic treatment and then with my dad being diagnosed with esophageal cancer. For anybody who's had the experience of esophageal cancer, it's a pretty brutal treatment regimen with not the best outcomes, and so for my dad, he made the decision that it was not worth experiencing.

Speaker 1: 27:16

And I imagine being a husband and at some points a caretaker to his wife, your mom. I wonder if that played a role in the whole thing too. Just with understanding.

Speaker 2: 27:30

Absolutely, that's a lot, absolutely so by mid to late 2018, you know the whole family it's myself, my sister, my brother-in-law we were all aware that both my parents had cancer dad terminally due to his lack of treatment, and then, going into 2019, both of their, the quality of their health was really declining. Quality of their health was really declining and for a large part of 2019, both my sister and I were really tag teaming. My parents were still autonomous enough to like they were living on their own. Dad was taking mom to her oncology appointments, but it was getting to the point where it was getting to be too much. And so I recall, like by mid 2019, taking some time off of work to help with things, um, going to appointments, mom ended up having to go into rehab for um, um, well, mom ended up being hospitalized a few times, then needed rehab to help recovery, and dad, it was noticeably declining.

Speaker 1: 28:38

Shall I say another version of a nightmare.

Speaker 2: 28:41

It was absolutely a nightmare, and it was a tricky part. What was tricky about that nightmare, though, is that you don't really know it's a nightmare as it's happening, because you're in it.

Speaker 1: 28:52

Yeah.

Speaker 2: 28:53

And there were still so many periods of them being autonomous that I don't think my sister and I I don't mean to speak for my sister, but I don't think we realized how serious it was. I have to give so much credit to my sister because she was a teacher in Delaware at the time.

Speaker 2: 29:07

She was able to come up for huge chunks of time during the summer over breaks where she really she really took the brunt of it in terms of helping them out, and so it just kind of continued to go that way until mom got sick for the last time and needed to be hospitalized end of December of 2019. And she passed away in the beginning of January and I just think back to that period, despite dad being so sick he would actually drive down to the hospital every single day.

Speaker 2: 29:45

Mom, was in the hospital for about a week before she passed and dad would drive down. It was a hospital, a specialized hospital, that was an hour and a half away. Drive down every morning, spend the day with her and then drive back home at night. Um, my sister, my brother-in-law and I we, we attempted so many times, we tried so hard to get him to let us step in, you know, and he was like no, I need to be there with her again, despite him being so sick himself.

Speaker 1: 30:17

And to me that's the difference between no, that's my role as husband.

Speaker 2: 30:22

Yeah.

Speaker 1: 30:23

And the love of my life, yes, which is a very good role to look finally at right.

Speaker 2: 30:29

Yeah, no, I think it was really special and he was very firm about us not seeing mom like that. He's like your mom would not want you to see her like this, because unfortunately, mom was just not in her right mind. She was very disoriented, unconscious a lot.

Speaker 1: 30:49

Illness is an illness, right.

Speaker 2: 30:51

Yep, it's an illness, yeah, and so after mom passed away, I mean, anyone who's lost somebody knows how disorienting it is Like your world is completely.

Speaker 1: 31:08

It's surreal.

Speaker 2: 31:09

It's so surreal and I consider myself really, really lucky that our family was super close. So my parents were friends. They were the people I went to when I was running into really good things, really hard things. I loved getting their advice on stuff. Um. So, to lose mom was just um, there was an implosion, there was an absolute implosion, and then COVID came two months later and then everyone's world imploded. Everyone's world imploded.

Speaker 1: 31:49

Dare I say the only grace is that you're not working at a residential hospital at this time. Is there any like at this horrible grief ridden just emotion filled time? At least you're not in a trying to figure that out.

Speaker 2: 32:10

Yeah, yeah, absolutely yeah. But again I think, speaking for I think I can speak on behalf of most healthcare workers when I say that was also probably one of the most surreal, disorienting times- how stress or how chaotic or just getting through the day-to-day routine, like it's especially in a.

Speaker 1: 32:43

You know it's yeah, it's bringing back memories.

Speaker 2: 32:45

Yeah, yeah, it's absolutely awful. It was. It was absolutely awful, and I'm sure that is something that you could do an entire podcast on, just in and of itself. And so I'm working at the hospital. I didn't have to go in too often, but I was going in person to assist on the COVID hotline in Philadelphia and so I was no longer able to see my dad, because my dad was obviously very sick with cancer. So, not wanting to add further complication, I wasn't able to see him.

Speaker 1: 33:16

Starting two months after my mom died, I wasn't able to see him, starting two months after my mom died. So you bring up another something that jumps out at me when the caregiver wants to care, give but whether it's the hospital or the situation or the pandemic where the work or the financial situation that the caregiver does not have the control, the ability to support the way they want to, and that's a whole kind of processing therapeutic and reason to go to therapy right there in itself, especially when you're in the middle of that phase or chapter of that caregiving.

Speaker 2: 33:52

Yeah, absolutely, and I think you know I might.

Speaker 1: 33:55

I, you know that makes me think of folks who might live across the country from their family, who might need help, not being able to provide care or be a support in person going to appointments, and then another family member is overseas, or whatever it might be, that has their own stress and frustration, or the one that's doing the caregiving, and then there's a family member that they feel that is barking orders at them. Yeah oh my gosh.

Speaker 2: 34:27

So many dynamics. It could be so many dynamics.

Speaker 1: 34:30

Yeah.

Speaker 2: 34:31

So many dynamics.

Speaker 1: 34:33

So it's COVID.

Speaker 2: 34:34

It's COVID, yeah. So again, just to tie it up, dad went on hospice in the end of 2020 and passed away in December of 2020. And again, having to give so much credit all the credit really, to my sister and my brother-in-law they actually, the summer of 2020, decided to move from Delaware up to Pennsylvania, which is where my dad was living, and they moved in with him and they were, you know, boots to the ground frontline all the way to the end. And you know, you mentioned earlier that you know people who want to be caregivers, but can't necessarily I don't think I necessarily conceptualize it as that, but can't necessarily. I don't think I necessarily conceptualize it as that.

Speaker 2: 35:20

I was certainly very aware of the privilege and the benefit of knowing that my sister and brother-in-law were with my dad, but there was that sense well, I'm not there, how much should I be there? There was a questioning of I don't want to get in the way of maybe established, you know, just like the groove of what they're doing. But once he was on hospice, I think a lot of those concerns just went completely out the window and I was able to go back home to my dad's house for like days at a time where I could kind of alleviate a little bit what my sister and brother-in-law were doing.

Speaker 1: 35:57

And that's such a powerful reality-based thought pattern Questioning, worrying, doubting. Maybe it's a level of guilt and shame for some people. Am I doing the right thing? Am I not? Do I personally feel that? Do my person that I'm caretaking for feel that? Do my family members potentially feel that and those are all things that I'll say is is normal for to come up for a caregivers or family members, that that that happens?

Speaker 2: 36:28

And there's no right way of doing this. Right, I mean it's and this is something, the more I'm I'm working with caregivers really emphasizing like there's no right way of doing this. Not a cookie cutter thing for this. Not at all. You weren't prepped for this.

Speaker 1: 37:09

And utilizing support whether it's coaching, whether it's friends, family therapy to help you explore and figure out how showing up as a caregiver looks for you. Yeah, I often help people identify a lot of forms of therapy. What is my healthier version of this?

Speaker 1: 37:17

Yeah forms of therapy. What is my healthier version of this? Yeah, yeah, and sometimes there's a lot of context and variables, that that can get murky and muddy and we don't always know what that is. But helping people identify what is my healthy, next right choice, what is my healthy thing that I can do where I feel relatively good with this being healthy, whether it's normal or not, whether it's good, this is healthy. Is this healthy for me and the one I'm doing it for? It's often a good parameter for people.

Speaker 2: 37:44

Yes, I really like that.

Speaker 1: 37:46

Yeah, it's a good one so how did this family experience, grief, covid, pandemic, history of working with infants and babies with chronic illnesses lead to where you're at today?

Speaker 2: 38:04

So both of my parents passed away in 2020. And after navigating that um, both as a unspeakable, horrific loss, but also as something that had consumed so much of my time, Professionally and personally. Yeah, yeah, absolutely.

Speaker 1: 38:24

So how did these personal experiences in addition to your working with infants and babies and adolescents with chronic illnesses how did it transition from grief and loss and to where you're at today, to helping people as a coach for for those with chronic illnesses and helping caregivers and I know you often work and specialize with women caregivers- After going through these experiences, After going through these experiences, I've realized that there is a particular type of, dare I say, stress, pressure, disorientation for folks who are caregivers in their jobs.

Speaker 1: 39:24

So I would have considered myself as a caregiver, as a, a social worker, sure, professional caregiver, a professional caregiver, but not a professional codependent. That's different.

Speaker 2: 39:29

That's a joke, it's not real. Go ahead as a professional caregiver. I would use that term to define folks who work in education, who work in advocacy who work in service.

Speaker 2: 39:40

Yeah, absolutely. You do get used to a certain level of need and you get used to showing up and trying to problem solve that need you. Your brain is wired to look for potential problems, how to solve those problems. You exhaust your empathy capacity for the people you're working with. But then, when something big happens at home, all of a sudden you realize you're taking so many of these skills you use professionally and now you're using those skills personally with people that you have established relationships with, people you love, people who have perhaps been your caregivers through life, and it's really disorienting. It's really disorienting. So there's that disorientation piece. There is also, frankly, a burnout piece. There's such burnout when we're talking about caregivers. They're already burnout. We're already burnout as caregivers.

Speaker 1: 40:50

There's only so much energy that you can give people and as as service oriented professional field, you literally are giving a lot, whether it's whether it's tangible, or time, or present, or emotion, or empathy or actual physical actions. It depletes you, oh my gosh.

Speaker 2: 41:04

Like all of these systems again, whether we're talking healthcare, education, service, advocacy, the systems and the other people in the systems just relentlessly demand.

Speaker 1: 41:14

Yeah.

Speaker 2: 41:15

And we try to show up yeah, and oftentimes we don't show up as well as we wish we could, because we're burnt out, we have nothing left.

Speaker 1: 41:24

And we're talking about the pandemic how many medical professionals died by suicide? Yes, yeah, I mean burnout.

Speaker 2: 41:35

So these caregivers are now also looking at providing care to someone they love at home, whether it's for me in my coaching business, I focus specifically on professional caregiving women, and they're exhausted, they're burnt out. For me, I see so many unique dynamics there that we don't talk about, that aren't normalized, that aren't supported.

Speaker 1: 42:03

So let's do it. Let's dive a little bit deeper into that and tell us more about the needs or services that you often help when it comes to these caretakers.

Speaker 2: 42:15

So I think when we're talking about caregiving you mentioned roles earlier Roles are huge. Roles are how we are defined or understand ourselves in relationships. If you're in a partnership and all of a sudden your partner gets chronically or terminally ill, that partnership completely shifts because it's not fully a partnership anymore. There is an element of imbalance where you are now the person supporting the other and that results in, I think, a lot of identity questioning. Big part of what I do is help get curious with my clients around identity, around those roles, around those relationships, how they have shown up in those relationships, how they're now having to show up in those relationships, how they want to be able to show up in those relationships.

Speaker 1: 43:06

And often with a dramatic change and shift to your point. A lot of times in couples work I can help couples identify. You know the whole balance thing again. Well, I'm only about 80% today. Or I'm only at 30% today. Well, I'm at 30% too. Oh, good to acknowledge that. But when it comes to caregiving, whether it's with illnesses or whatever the condition might be, one of these partners may never be at that 100% again and that's a hard shift and a grief period.

Speaker 2: 43:38

And to grieve that and realize that and work through that is oh, my goodness, it's so hard, and I think that's like the first big thing to acknowledge. This is hard and this isn't how it was supposed to be.

Speaker 1: 43:51

Yes.

Speaker 2: 43:53

It's just not how it was supposed to be, and it's really awful that it is.

Speaker 1: 43:58

And you can be angry and pissed.

Speaker 2: 44:00

Oh my gosh, you should be angry and pissed.

Speaker 1: 44:04

And that'd be okay, not filled with guilt and shame.

Speaker 2: 44:06

No no no no, but it's good that you say that, because that's probably one of the bigger struggles I see in my clients. The bigger struggles. I see in my clients is the guilt and shame that comes with how they feel now that those roles have shifted. There's resentment, there's fatigue, there's anger and there's I mean I've had clients say I hate this. You know all of that is normal.

Speaker 1: 44:36

Isn't that real?

Speaker 2: 44:37

There's nothing wrong with that.

Speaker 1: 44:39

Let's use the word healthy.

Speaker 2: 44:40

It's healthy because, again, this isn't how it was supposed to be. That's a really big part of just validating.

Speaker 1: 44:47

Yeah, and what we do with that anchor.

Speaker 2: 44:50

Yes, yes.

Speaker 1: 44:51

And grieve. And where do we put that? Anger is part of the process?

Speaker 2: 44:56

Yeah, and that looks different with every client.

Speaker 1: 44:59

Yep.

Speaker 2: 45:00

With every person. Another thing that comes up a lot in my work with caregivers is also figuring out how to still take care of themselves.

Speaker 1: 45:10

Oh good one and. What I have time to focus on myself. I didn't do that when I had especially mothers right With children.

Speaker 2: 45:20

I didn't, you know, prioritize it, it's, it's it's a huge one physician when I worked with parents in that position at CHOP. There are so many unique nuances to that and for that reason I do not focus on them in my coaching business because that is so specialized in my, in my very humble opinion. I think that that's really particular.

Speaker 1: 45:53

You're very experienced in that world, thank you. Yeah, so I think parents who are caregivers of children who are chronically or terminally ill is a very particular type of caregiving which I do not focus on.

Speaker 2: 46:09

It's a whole other level of intensive, isn't it?

Speaker 1: 46:10

It is yeah.

Speaker 2: 46:12

It is, but I think that the notion of taking care of oneself is already pretty foreign to most professional caregivers, I'd go so far to say for most adults. I think we struggle with that, at least in the society I know which is really in America, and even now, when we talk about taking care of ourselves and our society, it's very consumer driven, it's very commercialized. We talk about self-care as being like get these products, use these services, which is, I think, so problematic Quick fix.

Speaker 1: 46:53

Yeah, how do I fill up my energy tank really quick?

Speaker 2: 46:56

Yeah, which is just so not healthy. So when I talk about this with my clients, it's more about First taking a look at how they actually spend their time. And I say this both as a professional and as someone who has been in the caregiving role that, again, when you're in it, you don't really realize that you are spreading yourself super thin. You're adrenaline fueled, you're racing around, you're just trying to check things off a list, make sure things are in place. You don't realize you're burning out even more than you've been burned out. And so, honestly, even just coming to work with a therapist or a coach is the first step in acknowledging that maybe there's a better way of doing this, maybe there's a more intentional way of doing this.

Speaker 1: 47:49

It's the adaptation to what has to get done.

Speaker 2: 47:54

Yeah.

Speaker 1: 47:54

And then it's almost like the blinders for people as caregivers. And then it's our ability to adapt to um our lifestyle and I always say everybody copes. We're going to find a way to cope in a healthier and unhealthy way, or survive or get through the daily life. And we adapt and a large part of our audience understands the addiction adaptation Caitlin's doing. You're doing a wonderful job of bringing the, the awareness and the reality, at any level or severity of caregiving, that in some ways necessity can ultimately shift into kind of like cruise control where it can be an adaptation of just like I just gotta, I gotta go, I gotta go, I gotta go, and then just our energy tanker just goes and goes.

Speaker 2: 48:53

Yeah, and I mean the majority of caregivers and I can certainly say all of my clients are clearly doing it right Like they're surviving, they're getting it done, but they're realizing this is not working.

Speaker 1: 49:08

It's not sustainable.

Speaker 2: 49:09

It's not. Working Like this is sustainable. It's not sustainable. And so, working with folks to figure out well, what does taking care of yourself, what could that look like while you are also a caregiver? Is there a way that we can hold both of those things at the same time? And again, that looks different for every person, but I think it's essential.

Speaker 1: 49:33

Yeah, yeah, and I am very upset I've been almost 50 minutes in and Zal the co-host, our co-host, could not come to Sweden with us. I should put this at the beginning of the episode.

Speaker 1: 49:46

You're going to have to redo the intro but what he's so huge one as a a life coach and a meditation coach. It doesn't have to be an hour, it can be five minutes of sitting with yourself and connecting to your body through breath work or body work, and the thing that he always hit me with years ago, as my very american self. He just looked at me and he says I find time to brush my teeth every day.

Speaker 1: 50:17

Oh, he didn't mean it as a jab, but it was like, oh yes, I can, literally, before I go to bed, I can put down my phone and do some inhale and exhale to slow my mind and allow my body to relax for that very moment when I'm just so like running like a chicken with my head chopped off because I am caregiving or whatever it might be, and that's just something that can be so valuable and I imagine you help people identify what that is for them to yeah, in this process, yeah, I mean again, there's some.

Speaker 2: 50:48

There are so many differences depending on who the person is, what the situation is, but I would say there's some universal things that show up. Like I mentioned, there's the piece of trying to manage the caregiver's own emotional response to the situation, trying to manage their grief, their sadness. That's pretty universal.

Speaker 1: 51:15

And I want to highlight that oh, what am I actually feeling?

Speaker 2: 51:18

Yeah.

Speaker 1: 51:19

I'm a. My role is caregiver and being there for them. Can I allow myself to identify and feel what I'm feeling, even if it is anger or just fear, whatever it might be a good.

Speaker 2: 51:29

I like that and feel what I'm feeling even if it is anger or just fear, whatever it might be Good. I like that. Yes, Give myself permission Absolutely. Then there's also the logistical piece. Again, that's pretty universal with my clients. The question is like how do I fit this all in one day? How do I get all of my obligations at work done?

Speaker 1: 51:50

How do I?

Speaker 2: 51:51

show up for the person I'm caregiving, which could probably include a lot of the same things that you're doing at work, from phone calls to coordination to physical showing up. That's pretty universal, and so those are like two of the big areas that I focus on in my work with my clients and trying to figure out practical solutions to both of those things, and it could look like, as you mentioned earlier, like I'm actually going to brush my teeth and just notice brushing my teeth and being practicing some embodiment there, practicing some mindfulness. It could also look like I'm going to make a list of the healthier options at these fast food restaurants that are near my house, so I don't need to worry about cooking, I don't need to worry about grocery shopping. I just know I can grab this at Chipotle and not feel awful. It could be deciding to invest some money, which I recognize is a privileged thing, but choosing to funnel some money, some income, into having someone clean your house having, you know, like outsourcing, I guess, is to get your time back, yeah.

Speaker 2: 52:59

Yeah.

Speaker 1: 53:00

What about the people that may take the healthy part of caregiving and compound it with the codependency or the lack of boundaries? Or maybe they don't have to care. Give as much as they do.

Speaker 2: 53:18

That's such a good question. That's also something that's so common and, I would say, also really normal, because, again, we don't know how to do this.

Speaker 1: 53:30

We're very much Turn that off, yeah.

Speaker 2: 53:33

This is all on the job training, and I think most of us and I speak personally here go into it with no boundaries. I think that's part of the adrenaline rush. I think that's part of the that's part of the adrenaline rush. I think that's part of the burnout, because for most of us who have experienced burnout, who are chronically running high with adrenaline cortisol, everything's a crisis, everything's urgent, we're reacting, we're not responding, and so we're just showing up however we can and then thinking about it later. So I think that lack of boundary is super normal.

Speaker 2: 54:15

That takes some work, that takes some intention.

Speaker 1: 54:18

And I think the things that you mentioned, first the what am I actually feeling, how do I prioritize? Then there can be some mental capacity to identify how do I set healthier boundaries with, whether it be family, whether it be the person that I'm caretaking or caregiving for, whether it be work and that is, I think, a big thing for a lot of, like you said, caregivers that, oh, how do I do this in the healthiest way possible?

Speaker 2: 54:47

And there's something new every day for a lot of people, yeah, and so I wish there was some magical formula that everyone could follow in terms of setting those healthy boundaries in general, but also in caregiving. I don't know if there is one, I don't know of one. So that takes some collaboration in my work with my clients, and it's taking small steps. It's asking little questions like is this really your job? Is this really your responsibility? Do you have control over this? Is there someone else who could do this? Is there someone else who should be doing this?

Speaker 1: 55:25

And I like all those questions and one of the things that I often relate those things to for people that care give some of my clients that might be abusing substances. I work with family members it's a lot of times and tell me if you agree. It's often fear-based yes right, it's the fear of. I wish I remembered any of those questions that you just said. It's like is is this my job, right? Is this a healthy priority? Is this, yeah, is? Is this in?

Speaker 2: 56:03

my control? Do I have control over this? Is this my responsibility? Do I have ownership over this?

Speaker 1: 56:09

Why do I want?

Speaker 2: 56:09

control over this, yeah, but I absolutely agree with you. I think it's fear-based, I think it's rooted in anxiety, I think it's rooted in, just obviously, also desire for the best for the other person.

Speaker 2: 56:21

And love and love and we think we have control over it. But yeah, I think it's really rooted in that fear and that anxiety, and so it, when we talk about setting boundaries, it's it's trying to figure out how can we be kind with ourselves, be gentle with ourselves, and confronting that fear and anxiety, maybe poking around there a little bit and figuring out. Well, okay, if I know this about myself, if I know that this is my, my fear, and let's also honor the fact that there's some legitimate fear and anxiety going on here and that's why we need to be really gentle with ourselves, because, especially when we're talking about chronic and terminal illness, there's a lot of legitimacy, absolutely.

Speaker 1: 57:09

And I think you, as a coach, and support groups and therapists, help us identify that. When we don't, I'll speak for myself. Don't realize this is fear. I don't realize this is anxiety. I don't realize this is oh, I've got a reason to feel depressed, right, yes, Like of course, so of course.

Speaker 1: 57:29

I'm going to cope with, feel depressed, right? Yes, like of course. So of course I'm going to cope with my fear, my anxiety, my depression, the unknown, and I don't always do it in the healthiest ways. So having a coach, having a therapist, having a support group, can help with that. So, clearly, we've talked about a lot of what you do in your profession and what you did at CHOP as a therapist, and we're talking to you, the things that you provide your clients as a coach. When did that transition actually happen for you? From during COVID, I guess, and having your private practice, and we're talking about some of the skills you give these caregivers or family members, about your coaching practice.

Speaker 2: 58:06

After I decided to leave my position at up top, I focused full-time on my private practice as a therapist and that practice has grown to focus primarily on chronic illness, where I work with lots of folks in therapy who have chronic or terminal diagnoses, and also caregivers or other people affected, because, as we were saying earlier, many people are affected with chronic illness, not just the patient, and in my work I began to realize and gain further insight that there is an element of caregiving that doesn't necessarily need the clinical therapeutic support that I provide in a therapeutic context as a therapist context.

Speaker 2: 58:53

As a therapist, there are practical, solution-driven approaches to caregiving that could be met subclinically, and so I decided to expand my practice to also include coaching, and in my coaching practice I focus exclusively on professional women who are caregivers professionally, who are now caring for loved ones at home, and so that coaching business has been evolving slowly over the last two years.

Speaker 1: 59:20

Yeah, that's really powerful work and I think the coaching aspect that you bring. This is such a phase of their lives where energy is finite and it sounds like your coaching practice helps the implementation at such a stage that it's so important to to apply and not just realize, but apply these things that you're giving them.

Speaker 2: 59:48

Yeah, and I appreciate that from a coaching standpoint. Again, we're not talking about therapeutic level intervention. We're talking about really goal-based problem solving intervention packaged. Really, you know, it's not a long-term investment in terms of exploration, like therapy is.

Speaker 1: 1:00:09

Talk more in your coaching practice just balancing the caregiving responsibilities with personal wellbeing. We've certainly been touching upon this, but talk a little bit more about that, because I think that's the crux for everyone that can relate to this.

Speaker 2: 1:00:27

In my coaching practice I really like to partner with my clients in getting clear on what they're missing, where they realize things aren't working. I guess that's really the simple way. By the time clients are coming to me, they're coming to me because they know something isn't working.

Speaker 1: 1:00:45

One thing that we haven't mentioned yet is because of your decade-long career in the medical world with caregiving and chronic illness, I think you really bring a strength and a skill set that maybe some other coaches might not have. Where my mind goes, the challenges with unresponsive or inadequate medical support that can be so hard to navigate as a caregiver, and whereas a therapist you might have to be I don't know what word I'm looking for but as a coach you can really provide some skill sets to them in this world of really stressful care when it comes to the medical field for a lot of people. Touch on that a little bit.

Speaker 2: 1:01:37

Yeah, absolutely. I think when you're working in a coaching capacity or at least when I'm working in a coaching capacity I feel like there's a lot more permission to actually give some advice. Um, coming from my background, it's it's a bit more intuitive for me to say, hey, have you explored this? Have you asked these questions? Have you considered approaching it this way? Have you asked about these services? So that can be really useful. I mean, I know that a lot of those things aren't necessarily possible for many people, and so then that's a different discussion. But yes, it's been very helpful being able to pull from my experience and using that insight to encourage self-advocacy, asking questions, digging a little deeper and accessing services.

Speaker 1: 1:02:27

Yeah, and a lot of times in a caregiver role. It often feels like reacting.

Speaker 2: 1:02:34

Yes.

Speaker 1: 1:02:35

And I think the example that you're giving is being able to help people sometimes be proactive or feel a little bit more grounded in certain medical situations and hospital situations where people can feel a little bit more prepared for the unknown.

Speaker 2: 1:02:53

Absolutely, and I frequently distinguish between being reactive versus being responsive. And again we're talking about people who are really charged, really burnout.

Speaker 1: 1:03:05

Stressed, fearful.

Speaker 2: 1:03:05

Super stressed, fearful. So reactivity is the default, and so figuring out how can we shift from being reactive to being responsive and being giving ourselves permission, even if it's just a few extra seconds, of taking some deep breaths before we choose our response to something, can be so empowering, and it can be a way of accessing our agency. It can be a way of reminding ourselves like we do have some semblance of control, even if it's a small little bit.

Speaker 1: 1:03:39

I mean ideally as the caretaker or caregiver we want to come from, this wise part of self. Yeah, that's a good place to come from.

Speaker 2: 1:03:48

Yeah.

Speaker 1: 1:03:49

Well, thanks so much, Caitlin, for joining us today in Sweden.

Speaker 2: 1:03:52

Well, Luke, thank you so much for having me.

Speaker 1: 1:03:55

This was great. Is there anything else that you want to say as we wrap up this episode?

Speaker 2: 1:04:03

I would certainly encourage your listeners to give themselves permission to ask themselves if it's possible to do things differently, if it's possible to be more kind to themselves through this process, if there are people or resources, whether informal or formal, that they can access to help them navigate this so they don't feel alone while they're doing it, that sense of isolation. So that would be my last little bit of advice.

Speaker 1: 1:04:38

Yeah, you're not alone in this process and, clarity's sake, caitlin comes from Paris via Pennsylvania. Yes, through her coaching practice, even though she spends most of her time in Paris, she has the ability to work with any of you worldwide.

Speaker 2: 1:04:56

That is very true, I do.

Speaker 1: 1:04:58

So I'll put her information in the episode notes and in closing. Caitlin Dwyer illuminated the landscape of chronic illness and caregiving with her knowledgeable insights and personal experiences. Through our discussion, we've explored the emotional and practical challenges faced by caregivers in those navigating chronic illness, shedding light on the universal truths of healthy change, resilience, compassion and the human spirit. As we wrap up this episode, remember that you don't have to navigate these challenges alone. Support groups, resources, professionals like Caitlin or even working with Coach Caitlin are available to provide guidance and understanding along the way. Whether you're seeking connection, practical advice or simply a listening ear, know that help is within reach.

Speaker 1: 1:05:44

Reflect on the lessons learned and stories shared and, if you resonate with our conversation, consider sharing this episode with others who may benefit from this wisdom. Your support helps us continue to amplify important conversations and provide viable resources to our audience. If you haven't yet and chance you haven't give us a rating on the platform you listen to and review, if able, it helps us reach more potential listeners. Together, let's foster a community of understanding and support where no one has to feel alone in their journey. Thank you for joining us on this journey of exploration and discovery. Until next time, take care and be well, thanks, thank you.