Childhood Interrupted: The Realities of Caregiving for Youth

This week, we explore the compelling story of Dr. Feylyn Lewis, who assumed the role of caregiver for her mother at the age of 11. Following an unsuccessful spinal surgery that resulted in her mother's severe disability, Feylyn found herself taking on the responsibilities of a youth caregiver, assisting with her mother's daily needs and medication regimen.

Despite facing significant challenges, Feylyn balanced her caregiving duties with her education and personal life. Her story serves as a testament to the strength and determination of young caregivers, who often bear burdens beyond their years. Through her advocacy and research, Feylyn has become a leading figure in supporting and empowering these unseen heroes, striving to ensure that no child experiences the isolation and fear she encountered as a young caregiver.

Feylyn candidly reflects on her caregiving journey and shares insights into the unique challenges and needs of youth caregivers. Her narrative reminds us of the importance of recognizing and supporting these unsung heroes and underscores the profound impact that even the youngest individuals can have on the lives of their loved ones.

About:

A native of Nashville, Tennessee and a Vanderbilt University alumna, Dr. Lewis grew up as a youth caregiver for her disabled mother. Her experience with caregiving, disability, and living life on the margins led her on a path of global research and advocacy. She has a Master’s degree in Clinical Mental Health Counseling and a PhD in Social Work. Her research focuses on mental health and resiliency in youth and young adult caregivers, and she conducts research in the US, Europe, UK, and Australia. Dr. Lewis currently works as the Assistant Dean of Student Affairs at Vanderbilt University School of Nursing, where she is responsible for providing vision, leadership and strategic planning for student affairs programming that delivers holistic wellness formal support services, student life and community engagement.

Outside of work, she serves as the Vice-President of Diversity, Equity, Inclusion, and Belonging in the Junior League of Nashville and co-chairs the Congressionally appointed PCORI Healthcare Delivery and Disparities Research Advisory Panel, and she sits on numerous other international advisory boards. She currently resides in Nashville where she continues to provide care for her mother.

Transcript

Natalie: 0:03

Hey guys, it's your favorite. Sisters here with the Confessions of a reluctant caregiver. Podcast. On the show, you'll hear caregivers confessing the good, the bad and the completely unexpected. You're guaranteed to relate, be inspired. Lead with helpful tips and resources and of course, laugh. Today's episode is part of our special series, caregiving youth hidden in plain sight. We're partnering with my care friends to spotlight the millions of children and teenagers worldwide who are providing care for a parent, sibling, family member or loved one. Before we start, I want to remind you to go to our website, confessions, ever reluctant caregiver.com, and sign up for our newsletter and connect with us on your favorite social media platform. Now let's jump right in to today's youth confession.

Unknown: 1:01

Oh my gosh, we are already off the rails, and it's because, it's

Natalie: 1:07

because Jay we're recording now. This is the caregiving youth special series hidden in bright side, and we are totally off the rails because we're recording at noon. Normally we're early birds, and we're doing a noon recording with our the most amazing guest. She's automatically been informed that she is a forever sister, no free will, I know.

Unknown: 1:28

So Jay, would you like to talk?

JJ: 1:30

I would love to, I mean, but you really jumped in there yesterday. Last recording, I said something goofy, so we kind of shut me down. Remember that? I said, Top of the morning the last podcast, oh, that

Unknown: 1:40

was awkward. Yeah. He

Natalie: 1:43

looks at her, like, Are you an idiot?

JJ: 1:45

Yeah, well, he's from the UK. I thought that was, you know, he was like, That's Irish. I don't even think the Irish say that, you know, at 1600s

Unknown: 1:54

not from the 1500s

JJ: 1:58

so I'm keeping it, I'm gonna keep it I'm going to keep it really straight laced, but I am going to tell everybody who we have on today. Are you ready? Do it okay? Our okay today, we do have a powerhouse. We are honored, and truly honored to have Dr faylon Lewis with us. She started caregiving for her mother at the age of 11, and that was as of a result, goodness gracious, as a result of a botched spinal surgery. Her mother had a stroke early in the covid 19 pandemic that required failing to move back to the US from England to live with her and provide care. But failing I read, you've got some amazing articles out there, and I read an article from a couple years ago that you published in Metro, and you said, as a young carer, I frequently worried that my mother might die, and my life seemed very different to that of my peers. I was mature for my age, but wanted to feel normal and carefree. That tension increased my feelings of isolation, and I know there are lots of other kids out there, so I'm so glad you're here and so open about everything. Thank you for joining us. Thank

Dr. Lewis: 3:03

you for having me.

Natalie: 3:06

You know, and failing is like, like, she's somebody to look up to because you've done a TED talk I have, yeah, that's really cool. Scary,

Dr. Lewis: 3:16

absolutely scary. I think I just wanted gray hair from memorizing. My own family story and script, but I have so much respect for actors and actresses now after that. But, yeah,

Natalie: 3:29

we all love like trying to wing it, and I don't think it works. No winging Well, we always start with, you know, let's talk about your caregiving experience. You know, start from the beginning, when you were born, but skip that part. So let's talk about, let's give some background and some color to it. About, let's talk about your family, and let's talk about growing up, and then really, where you as you know a little bit about your family, and then where you started caring. Because you again, cared as a pup. You were a puppy.

Dr. Lewis: 3:59

I love that. I'm gonna use that phrase now, the child as a puppy.

Natalie: 4:02

That's what I think about. A lot of the 20 year olds that come into work like, Oh, they're puppies. They just graduated

Dr. Lewis: 4:11

from college. So, yeah, so you're right. I did start as a young pup. I was thrown into caregiving at a very young age, as JJ mentioned at age 11, I would say my family was a typical southern middle class family, and my mom worked as a registered nurse, and as you probably heard from my TED talk, she was one. She liked to run marathons, and was really pretty healthy, but she was diagnosed with degenerative disc disease, and she had what was really a routine surgery for that condition, but unfortunately, the surgeon took out bones from her neck that he shouldn't have, and did not add in the fusion that he was meant to do. And that meant that when my mom woke up from that surgery, she couldn't walk, and it was completely botched, and that was catastrophic. Our family. So you go from thinking she's just going to be in that hospital for a weekend, my brother came home from college thinking the same thing, but because that surgery went horribly wrong, that changed everything for our family, and she had weeks and weeks and weeks rehab trying to relearn walking, and as a result, my brother dropped out of college so that he could come home and start caregiving as a younger pup at for him, 19, you know, he took on our mortgage, all of our household bills. And then for me, as a child, I became known as what we call youth caregivers in the US and then the UK and elsewhere, young carer. And that meant that I helped my mom with her medications, bathing, showering, helping her walk, anything that you could think of in terms of long term care, was something that I did as a child. And as JJ mentioned, I didn't know anybody else who was a youth caregiver. I thought me and my family were the only ones, and really felt very isolated. And definitely as you know, JJ mentioned that I was very scared. You know, at 11, she had something. My mother had something so catastrophic, really happened to her body, and I lived in fear that she would die. And now that I'm an adult like older pup, I know that that was irrational, but back then, I did not know that. And so every night, I would go to bed praying like, Lord, take away her pain, give it to me, and I would wake up, you know, the next day, and my mom was still the same, and I just went through that day in, day out, every day as a child. And you can fast forward a couple of years, and I went on to college, and went on and got a master's degree in counseling, and I knew then that I wanted to do more to support other children, other young people who had experiences like me and like my brother, and so that's how I got involved in doing research. I went to the UK, studied for about eight years, so I studied, and then started working there, leading research projects of other youth caregivers around the UK and in Europe, but then also back here in the US, back in my home, because that was always the goal. It was always the goal to take all that I could learn from over there being overseas, in which they are miles ahead of us in terms of supportive resources and research and policy for youth caregivers. I wanted to take what they were doing there and bring it back here, but coming back to home to Nashville, that was something that I was not anticipating doing what I did. So I always knew I was going to come back home, but I came back for not a very good reason. My mom, yet again, had a medical incident where she was in the hospital. She went into the ER because her blood pressure was high, and unfortunately she was dropped too fast. So if you give medication to bring down blood pressure, you have to do it slowly and not too quickly, because if you do, you can give someone a stroke. And that's what happened to her. She had a stroke. And yet again, I was thrust back into caregiving, and this was in the middle of the pandemic, actually, more towards the early days of the pandemic, actually, so I came home like got on my next flight out from London so that I could be at her bedside, and that started caregiving all over again. So I still take care of my mother to this day. We live together, me and my husband, and we provide care for her. So my caregiving journey is one that started young, and then has continued along to this very day. Wow.

JJ: 8:42

Now, because you were 11, I'm assuming your mom is still young.

Dr. Lewis: 8:47

That's right, she is, yes, exactly.

JJ: 8:50

How old is she now?

Dr. Lewis: 8:51

So she is, we think how old I am? I'm at the age where you forget hold your

Natalie: 8:55

JJ, has been forgetting for

Dr. Lewis: 8:58

you. Hold am I? So she is 66 Yeah,

JJ: 9:03

same thing that's young, that's young for

Dr. Lewis: 9:08

us. So yes, yes,

Natalie: 9:10

your mom looking for a roommate. No, sorry, our mom. Our mom would be like, do you want to live together. Our mom's always doing that. I want to go back, though, like you got a ton of stuff, like you unpacked a ton of stuff, and so I want to go back to the beginning, if that's okay, and we're just gonna Then mosey our way back. So it was you, your mom, your brother, right? So the three of you, like the three musketeers, I do love that, and they're from Tennessee. That's why she doesn't know a stranger. You can tell she's like and so your brother was in school, and so this was that would have probably been a pretty big change for him as well as you. So we talked, we talked about, with a lot of our youth, about, did you like you have this? Pretty dastardly thing happened. You're this failed surgery, and that is, everyone's nightmare. Is something's going to go wrong. And did you have a lot of extended family? Like, I have all the things like, was it extended family? Like, what was your village like, and that helped you? And how much, like, how many hours do you think that you know, if you look back on to it, because you, as you aged, you probably took on more roles and responsibilities because you're learning more, because it sounds like your brother took on the financial piece of going and getting a job to pay the bills and that sort of thing, and you're taking care of like home. He's like community, and you're like home and so. So tell me about the village and how your your family, or was it tight?

Dr. Lewis: 10:45

Yeah. So that's such a great question. So I will say definitely, in those early days, we are so blessed to have a supportive church family, an extended family. But as you can imagine, just for like, if someone passes away in a family, when something that's going on for months and months and months, you know, eventually everybody has to get back to their day to day lives, and that's completely understandable. So when I think about day to day care, that really fell to me and to my older brother, we didn't have, like, home health aides coming in, nurses, and so it really did fall to the young adult, and then the child in the home. And I think that's very common with other youth caregivers around our country, which is, you know, obviously, even with us, who have a village and have a community, you still doing the primary care day in and day out in the home. It's still falling to the child, the people that live there in the UNC, for example, for me, the pain that my mother was in. So, yeah, so again, I don't want to, you know, don't want to not, not give gratitude and thanks to those who are around in the early days. But it did really, truly fall to me, my brother. And

Natalie: 11:52

so you, Oh, I totally interrupted. You. Jay, yeah, you're

JJ: 11:54

interrupting.

Natalie: 11:55

I feel like, move, yeah. I'm thinking about school. So your mom is home during the day, correct? Because she's not working and your brother's working. Who was there with your mom during the day because you're going to school? Or did you have an adjustment in school like homeschool? So

Dr. Lewis: 12:12

thankfully, I didn't, and that's why I have to give praise to my brother, because I think my story is unique, and that my brother really shielded me from what we know from the research that we do, where we know that young youth caregivers, they do miss school, they're the child that is frequently absent or tardy or all of that. And thankfully, that was not my story, but that's really because of my brother. He took on so much at 19 to make sure that I could stay in school, that education is incredibly important to our family. That's how we've kind of lifted ourselves up. And I know that that value, I know that's why my brother really, really shielded me from, I think, the burden of some of the care that would be necessary. But at home during the day, my mother was by herself, because, again, we didn't have any home health aides or help or anything like that coming in. So it's just her,

JJ: 13:03

did, did the people? Did your teachers know? Did anyone at school know, like, who was aware of this in your circle, your did your friends have? Yeah,

Dr. Lewis: 13:12

so our school definitely knew. But I think you know, you got to think that's what two decades ago, and even still, our Yes, our discourse on youth caregiving has really just not advanced enough to where we have a language for where we're talking about it in our school system for social workers. So So again, I don't want to fault our school, but unfortunately, they just really didn't know. They don't know what we know now, or what we're trying to let everyone know now, I

Natalie: 13:39

would agree with that Dr because I think, you know, I work with in the public schools, with on the mental health side, as social worker. So FYI, she's got her PhD in Social Work. Sorry to all my counselors out there, but she she chose social work ethic. And so you know how the social work and the counselors love to get at each other. That's why she's laughing. JJ is like, I don't get that. It's okay. She's from finance, but I know, right, somebody's got to pay the bills. And so, you know, I think that it's not as if we have a hard time identifying ourselves as caregivers. It's even harder for the educators. And you think about social workers, guidance counselors, school personnel, that was really, that's really that, that question, and so did, was it that your mom? Did your mom go in and have a conversation with the teachers? Did you have that conversation just say, like, hey, my mom's ill, and not maybe have the right words, like, I have to be your caregiver, but hey, I'm responsible for helping out at home. That's typically the normal people words that definitely did

Dr. Lewis: 14:39

not ever happen for me. I imagine my mom probably would have told them, This is what happened. This is why you're not seeing her show up as she normally would have. But other than that, that was it. There weren't any checks. There weren't any what's going on at home questions. It honestly was not until I got to college, until I was. My junior year. So how many years ago later that I actually ever had a professor pull me aside and say, Are you okay? What's going on? You don't seem like yourself. So I didn't have an educator in my life who asked questions about what was going on at home. And again, I don't want to knock our educators and professors and all you know, all of them, because they're burdened of time too. They are already full and maxed out to capacity, so that it also sheds light on what could be going on within a classroom. What's going on for alternative the way they present themselves in a classroom, I think as well. I think what we see with a lot of youth caregivers is you have sometimes that label of the problem child. So they are the one that's absent, they are the one that's tardy. They are the one who doesn't complete their homework. But then you have the other ones that are the overachiever so the ones that you may not actually see the effects of caregiving, what's going all the challenges that are going on at home, with their home life, and I think I probably would have fall into that category, which is, I was a great student, you know, didn't cause any issues at school, but I was a very lonely, sad, scared child, and certainly, when I look back now, I wish I had had someone to intervene and to help support me as a child.

Natalie: 16:16

I don't know about you, but my inbox is always cluttered with useless emails, but there's one I always open the Confessions of a reluctant caregiver newsletter. You may say,

JJ: 16:28

Natalie,

Natalie: 16:29

what makes yours so special? Well, I'm biased, but don't just take my word for it. Here's what our subscribers say they love. First, it comes once per month, and you can read it in under five minutes Next, you'll find amazing tips and resources to use in your everyday life. And who doesn't love a recommendation these sisters do, which is why we share sister approved products and discount links to save you time and money. And of course, your first to know about the upcoming months confessions, just like our show, you're guaranteed to relate, be inspired. Leave with helpful tips and resources and, of course, laugh. Go to our website, Confessions of a reluctant caregiver.com. To sign up for our newsletter today.

JJ: 17:20

Hey everybody. We are back here with Dr failan Lewis. She is part of our caregiving youth series, and that is my turn to ask a question. So, I mean, I stalked you on social media. I have to tell you that. I just need you to know that. And so I did read

Natalie: 17:34

restraining orders,

JJ: 17:37

your articles. I just, and again, I was, I was just, there's so much out there, but you talked about and you just mentioned the professor your junior year, and what that meant to you. Can you tell us a little more about that? Because you said no one had really ever asked you how you were doing. No, no,

Dr. Lewis: 17:56

I am so grateful for that professor. I always say when I give talks, and people ask me, What's the one thing we can do, especially for an educator, and I say, stop and ask for the one what? Notice what's going on. Observe. Because you know you're you know the children in your classroom, you know the for me, I was a college student, so you know the young adults that are there notice and observe, and then just take the time to ask. She did not know all that was going on. And so when she asked that simple question of, are you okay? You don't seem like yourself in class, it came out pouring all that was going on, which is, my mother was in the hospital right next door. So after class, I was going over there to sit at her bedside. Would sleep over there at the hospital, studying, doing my assignments in the hospital. Our grandmother had recently died. It was the time of the recession, so we just lost our home. So there was so much going on, and so I wasn't myself. There was no way I could have been myself. That I'm really grateful that once I had all my word vomit. This is what's happening to my professor, who cared and stopped and took the time to ask. She said, You need to get connected with University Counseling like that's what you need. And that was the first time, totally interrupting time. Absolutely the first time, right? I know you were doing counseling exactly. I am shocked

Natalie: 19:14

by that, because you were an overachiever. You were truly no but let's think about it. You were hidden in plain sight. Typically think about who are the people that your educators see. They see the they see behavior problems, children that are struggling academically, and then they go and they have conversations with their parents. They have conversations with youth. But you like Kaylin and Aditya, they're overachievers. It's so interesting. I'm glad that you pointed out some of our youth caregivers are overachievers, and some are the ones that really struggle, and that are educators. And we know, we know we can give grace to the schools, but it is what it is. Let's just call it for what it is. That's interesting.

Dr. Lewis: 19:54

Yeah, interesting, absolutely. So being able to have that dedicated therapist that I would. See, every other week was so beneficial to me, it made a world of a difference. I finally had someone who was a trained professional that I can unload all that was going on with my mom, all my concerns, my worries, and feel validated that I was not weird or strange or irrational for having the fears that I did, and it was so helpful to me. So that's what I always say, is not only for us, educators, stop and ask the questions of, are you okay for the children and young people in our care, but also for all of us, you know, we have that responsibility to do and then especially for us, who are professionals, counseling is such a benefit to youth caregivers, having that person who's not their family where they can talk about the good, the bad, the ugly, the guilt that they may experience that's also critical and really should be shared with someone who's trusted and is trained as well in mental health services. So

JJ: 20:52

let's pop back to guilt and feelings as you're growing up. So you are there. You have a brother who has almost, I mean, he's kind of leading the household, because your mom, I mean, he's kind of, you know, there's that. But then you're growing up, you're in school, what are your feelings during this time? Are you upset because you're missing out on this stuff? You're

Dr. Lewis: 21:15

Tell me about that, how you're feeling as you grow Yeah, so I wouldn't say that I missed out on anything, and that's really a testament to my brother and to my mother's savings, she was a good save, and I'm grateful for that. But I would say that, first of all, my family really tried to shield me, and I know that's not the experience of every other youth caregiver. But I'd also say in terms of guilt, I always knew, though, that I needed to do well in school, I needed to get as far, get as many degrees, and be successful as I could, so that I could, in a sense, pay back what my brother sacrificed. You know, he really interrupted his trajectory in terms of his educational aspirations and his career path for me, and that is something that, that weight is something that I carry to this day. And I am so incredibly grateful to my brother for what he did. And first of all, he shouldn't have had to, let's we should start there. He shouldn't have had to, yeah, and we need more of a social care system in place so that he didn't have to that girl, yeah, right. But in that, you know, I definitely want, and there's that's pressure, but it's definitely all self imposed. That pressure doesn't come from my brother, that does not come from my mother, and that it's definitely for me. Seeing this is what this person gave up for me, and I know that I'm now responsible for my mother's care since, again, because of her stroke, you know, we're back into caregiving, and it's my time now, really, to be that person in her life, because my brother did that at his age, and he needs to have that time to live his life. He's also married now. He went back to school, thankfully, about a decade ago, and finished his degree and is hoping to start a family too. So he deserves that time. So definitely, I think, in terms of guilt, it's the someone else's sacrifice so much for me as my older sibling, and you can't, you can't give those years back.

Natalie: 23:05

Let me ask you this. This is interesting, because, did you talk to your friends about your caregiving? Like, did you have a tight circle? Did you have a larger circle? Like, you know, I think about like, normal childhood development, and when you get into that high school age, especially, and doing all the fun things and that sort of thing, did you, how did you talk about this with your friends? Or did you just kind of, like, I only told like, a couple of people,

Dr. Lewis: 23:30

oh, I absolutely did not tell people at all. No, no. And in fact, it wasn't until I was in college that I did try to tell one of my closest friends and again, no fault to her, but she's, you know, 1819, 20. You know, all that was going on with me, offloading onto her is too much. And that's when I quickly realized, like, oh, wait a minute, my life is too messy. What's going on of caregiving at home and my mom being ill and losing the whole all this stuff. Oh, that's too much. So I'm gonna keep that to myself, because I learned my lesson now, and that's something that I really had to unlearn as I've gotten to be older, is that, no, actually, we with your friends and all, it's healthy, you know, boundaries. Of course, it is healthy to share and be vulnerable, and that's something that I'm still learning to this day to be able to,

Natalie: 24:23

you know, it's funny, Jay, we have a partner picks health that's that's going to be on the educational organization, and they're combating the epidemic of isolation, and they do suicide prevention, but really that that epidemic of loneliness, and I think as adults, I mean, now that You're an adult, because you're you now you've grown up to be a big girl. And think about the time that you know the thoughts, feelings, actions that you had when you were younger, and now you've been kind of put back into the caregiving situation because you had a break for a. Window of time, right? And so did that younger self teach that older self how to manage a lot better?

Dr. Lewis: 25:09

Oh, that's good. Oh, definitely, I would say in terms of maturity and perspective, I think those were all gifts from my youth caregiving experience. And definitely, I think caregiving at a young age marks you we are. In fact, I can't even take, I can't say that's language from my own if my research with adolescents, that's a language, that's a word that they would say is we're marked like we're different than our peers. And I can definitely relate to that, you know, I I can see now that my friends are now that we're in our mid to late 30s, uh, weird. They're only now getting a taste of what it's like to worry about a parent. Um, they're not even yet. They have not even yet touched into the caregiving yet. They're just now getting, oh, wait, their parent might die one day. You know, that's just now starting to become a realization for them. Words, and I had that back at 11. And so those are things that I process and still process, or therapy to this day. So I've had, I guess I could say I've had a jump in terms of development of peers, but, yeah, but, you know, and I look back, I wish to my younger self, you know, I wish I could have said things like to be more open and to share what was going on, rather than keeping it all to myself. But I can also understand why I did. I remember rationalizing, even as a young, as a child, like there's so much going on at home, I'm not adding anything else to it. And I see now as an adult that I even as a child, was worthy of having support and attention, and I should have been more open about my own feelings about what's going on with my family, but I know that now, and that's something that I can help other young other young people have the tools to be able to process and do because there is, there's so much processing that has to happen when you're in a youth caregiving experience, so many fear, so many anxieties, and as you mentioned, the loneliness, yeah,

JJ: 27:09

so let me ask you, you know you're 11 years old, your brother's in college, your mom's a runner, she's active, she's a nurse, and you have that day, that trigger, and this is What happens when you stepped into that role, did you to a certain extent? Did you lose your childhood? Do you still have the mom daughter relationship, or did that switch? Did you watch that change over the years? Good

Unknown: 27:32

question. Thanks.

Dr. Lewis: 27:35

That is a good question. I would say that I still maintained that mother daughter relationship. I think if you had my brother in this seat, I think you'd probably say something different. But then again, I think him being the head of the household in that respect, paying the bills, you know, getting the full time job to do that, I think that changed for him. So I think he would say not. I think he would say he felt like the second parent and the home. I think that's probably valid and accurate, whereas, and again, I think I was shielded where I think I still felt that those that healthy boundary and dynamics of child and parent were still there. You know, certainly, I think what I can tell if differences with my peers is that I certainly am more feel more accountable to the things going on with my mother in terms of care, coordination and planning, future planning with her, that I can tell my peers who have not yet had to think about caregiving, are in that space yet. I think that's definitely true that, and I would say, you know, from the research that I do with other young people that that's also different, because my mother had a physical disability. So cognitively, she's all, she's the same. She's all there, everything's functioning well, it's just physically, her body, then had that horrible, you know, those horrible incidents happen to her. But that's different. If we were talking to a youth caregiver who who had a parent or grandparent with a cognitive, you know, disorder or a mental health issue or substance abuse. I think that conversation would be very, very different in terms of the role reversal, yeah,

Natalie: 29:08

yeah. I would completely agree with that. That's something that we're I think a lot of people so caregiving, a lot of people will think of it as, you know, longevity or aging population, chronic, complex and disability. But one of the things that we are kind of diving in more is going to be serious mental illness and individuals in substance use disorder. We know what's going on with the opioid epidemic, and we know that that is shifting, and we see a lot of those kids in foster care who take on the caregiving role and as social workers, sorry, Jay, we're gonna go off her side for a sec. Okay, we're not really trained to talk. I don't think we were trained well, or that we train our foster parents well about how to help those caregiving youth to be teens. Because we're like, okay, we removed you. From this situation, because not, and let me make it clear, just because, like, failing didn't need to come into custody, let's be real clear, failing didn't need to come into custody. But the children who do come into custody, a good number of them, have been in the caregiving role for either their siblings, on behalf of their parents or for their parents, and so it's hard for foster parents to transition over and to say, Okay, well, now you can go be a kid, and they don't have a clue what being the kid looks like. And so I think that's where we want to make sure that that voice is also heard. I don't know how much you work the foster youth population,

Dr. Lewis: 30:39

so not in my day to day role, but definitely everything you're saying, oh my goodness, thank you. Thank you. Thank you for that. I definitely think that's valid. You know, I was just listening. I was just thinking, even to this day, like when I do try to take breaks and I do take a vacation, it is so difficult to have that time where I'm not thinking about my mother, and Is she okay? Does she need something? Let me check in. And that definitely is a product of how many years of caregiving, and even to this day, still being a caregiver, that you can't really turn that off, that even when I'm meant to have that self care moment, you're still thinking about what's going on at home. And so I know that's true for other children, because if it's true for me as a almost middle aged adult, then I know it's definitely true for children as well. You just can't turn that

Natalie: 31:26

off. That's the truth. Yeah,

JJ: 31:32

if you like confessions, we have another podcast. We'd love to recommend the happy, healthy caregiver podcast with Elizabeth Miller as a fellow Whole Care Network podcaster, we love how Elizabeth chats it up with family caregivers and dives into their caregiving and self care strategies, just like us. Elizabeth believes that family caregivers are the experts in caregiving. Beyond the informative conversations, Elizabeth reveals the tried and true resources and practical self care tips that empower caregivers to prioritize their health and happiness. You can find the happy healthy caregiver podcast wherever you download your favorite podcast or go to the website at Happy Healthy caregiver.com Hey, everybody. We are back here with Dr faylon Lewis, and we're talking about caregiving youth and how sometimes you can't step away from it, even when you need respite or you go on vacation. As you grow, you're always thinking about that care responsibility. And I completely agree with that. We are. I think blessed is probably the word I would use, because we kind of pass it around. There's three of us, and when we go on vacation, it's a call, because our mom's in skilled nursing to say, don't call JJ, she is. And I still worry, and I still text, you know, Natalie, okay? Is everything okay? And I'm like, Yeah, I'm

Unknown: 32:59

in charge. I terrible in charge.

JJ: 33:05

You know, I do the question. So I know your mom cognitive, cognitively, is everything, she's fine, but I know that she probably went to the doctor a lot when you were younger. So were there ever times that that you wanted to communicate things that were going on, and you felt like the doctors, the professionals, completely disregarded you, like you don't know anything. You're a kid, and you're thinking, I'm doing everything at the house I got you, I know, and that's the same thing with you and your brother. Do you ever feel like they dismiss you? And how should that be changed? Oh

Dr. Lewis: 33:34

my goodness, the doctors growing up definitely didn't even acknowledge me the room, which goes against all that we say now, from our good practice, from research, recognize the children are the experts in that person's care, because they're part of the care team. But yeah, no, I love that thought that they would even consider me. But we

Natalie: 33:55

don't worry. They don't consider the adults. They don't even consider the adults. Don't worry. We just push our way in. Now, I mean, think about it, even with your mom. Now, do you get a different well now, because you're a fierce advocate, I'm going to tell you that right now you are absolute fierceness. And so as you're going even today, have you taken this, what have you taken from those experiences and applied to your caregiving? Now, because you've shifted your mom's living with you in your home. Do you anticipate your mom's gonna live with you forever? Kind of

Dr. Lewis: 34:26

i i do? Yes, yes. Um, what I think about most is, how do I make this sustainable? Because burnout is something that I've definitely experienced, especially right around the time of her stroke. This was completely different world for me. She uses a wheelchair, so I was thrust into finding accessible housing for us, which was incredibly difficult to do. I called dozens of senior citizen housing communities, and they would not take us because me, I'm too young. Like, yeah. So. So it was really difficult to even find housing. And so when you start adding in, she had physical therapists, her speech therapist, occupational therapist, all of it was a revolving door of care. And plus me trying to work my full time jobs, and I was burnt out, and that is something that I still have to work on for myself, is because I do foresee that she'll live with me the rest of her life, God willing. And I do intend to take care of her. I have to make it sustainable so that I'm in a good place to do that, and I'm a healthy place to do that, and I hope one day to have my own family. So how will I balance caring for my mother with my role as a wife, and then also, then as a mother. Those are things that I debate about. I'm not sure how I'm gonna do it. Tabs,

JJ: 35:48

not yet.

Natalie: 35:48

I have dogs,

JJ: 35:53

because you have and we've spoken with so many younger adults who've said, No, I know that this is what I'm going to do. I know that this is part of my future. So you're married, and was this a discussion that, as you got in to relationships, you started dating, and you made that decision? Did you say, Hey, I got some stuff. We're going to talk about it now. We're not going to get into this until you know we're not going to get into a relationship, until you understand this is really important in my life. Yeah, well,

Dr. Lewis: 36:23

it's really funny. So I have to out my husband, and he's also a caregiver. So his mother, his mother, I'm used to telling my story. His sister also has a physical disability and also very severe mental health problems as well. So this was something that I think we definitely bonded. Was at Trauma bonding, but we could relate to and I also have to say, I'm living out my own research. It is very common for youth caregivers and young adult caregivers to find themselves in relationships with other caregivers. Why? Because they understand they get absolutely so. So yeah, I'm not unusual in that way that yeah, of course my husband would end up being someone who also gets set and who understands, yeah, but he also knew that I needed to be with my mother. There was no one else really that could provide the care that she could, that she needed. So that was even a sacrifice for him. I'm not sure if you know, but my husband is British. I met him during my time living over and the UK

Natalie: 37:27

Top of the morning. Do you see

Dr. Lewis: 37:30

in our house, though we do that.

Natalie: 37:35

So you met when you were you met when you were abroad? Yeah, we did. That's really sweet. I love that. I feel like, now we're going to need a husband wife photo, and I'm like, I'm gonna have to stalk you more. And I mean, I mean, follow you more. Yeah, I do that to Bruce Perry, though. Oh, sure, I'm not stalking. So that's really interesting. And so he's a caregiver, and I mean, he lives with you, and so did his sister. That he cares. Does he still care for his sister? Is that? Is that a caregiving ended and there's just kind of oversight or love and support? So

Dr. Lewis: 38:10

what I would describe for my husband is that he cares at a distance, so he's still in touch. Great, yeah, he doesn't love a Fifth Sister, but he is still in very close contact, I'd say, every day with the sister in terms of how she's doing, especially with her mental health, well being, and checking in and being that person that she can rely on for that. So even him making that choice to move to the US, for me, that was that was hard. Oh yes, yeah, ancestor sacrifice, of course, for everyone to be able to do that, but yes, so I would still say he's also a caregiver, but at a distance. And yeah, that that's our that's our life. You're living our research. You know,

Natalie: 38:51

they always say lived experience is so important. And you're like, I know for real, I got it. That's really funny, you know, Jay, I can't believe it, like it's time for Sister questions. But the reality is, is that it's just more questions. And it's true, because this is great. Yeah, I have a question, because we're not going to do just the two questions. She

JJ: 39:12

jumped ahead of me.

Natalie: 39:14

Yeah, normally, I'll still have the last question. You'll know when. All right, last question, but I would like, let's talk about tips and tricks. I mean, you're a you are a well seasoned professional, both having lived experience. You are a subject matter expert in caregiving, by your own experience, but also by research and by and the work you do every day. So what would be things? What would be some advice that you would give to educators, and what would be advice? Because we're going to put these as clips to make sure people see them. What would be the advice that you give to educators, and then what would be advice that you give to human service professionals, social workers, clinicians, etc,

Dr. Lewis: 39:54

I would say, actually, my advice can fit for both. So I'll hit birds are from stay. Right? I would say I'd go back to that. Use your observational skills and lead with empathy. Take notice. We know that for many of us, we're still in a covid, 19 pandemic. So when I think about long covid, think about the new crop. We say a new army of youth caregivers have emerged in this country because of that. So think of the children that are that are at home because of covid. Think about that. Think about those who maybe can't do after school clubs or sports. Maybe why? Because they have to rush home to take care of the person that's at home. Think about the team that has to get a job. Maybe it's not just so they can have extra, you know, money on on the side for themselves, but actually it might be going to their family, just think more broadly in terms of what a child or an adolescent might be going through, and stop and ask questions. You know that professor, all they asked was, are you okay? You don't seem like you're yourself, those open ended questions, those skills that we all know had to do as professionals. You lean on that, and once you do, because we always say, once you do identify a youth caregiver, then you don't want to leave them without support, so you don't want to open up the well of okay, now they've told me all this, what do I What do I do with that? How do I hold it? Make sure that you get them support. Definitely refer them on to a counseling service to social workers. We also have the American Association of caregiving youth, which is based in Boca Raton, Florida, that is our nation's only truly dedicated organization, a nonprofit for youth caregivers. So there's so many resources for both educators, professionals, practitioners, even us who would consider themselves lay people. There's so much information that fits all of us, wherever you find yourself, on their website, so do make sure you educate yourself, so that you can continue to educate others. But then, other than that, to just be aware, yeah, that's what I think would have helped me the most, is that people would have recognized that this is something that's going on, and that we're actually not unusual. In that regard, there's actually no ends of other children that were like me, and to recognize that we're there. And then I love that you pointed out Natalie early in her talk, that, for example, I did not need to leave the home. It was not an abuse situation. It wasn't neglect, because that fear of if I tell from a child's perspective, if I say what's going on at home? Am I going to get taken out of the home? That's so real, exactly, and we see that in the research that we do, and that also helps to keep that that pattern of silence that goes on in families. So, so being able to know that, okay, there are differences, it's very distinct with Child Youth caregiving in the home, versus abuse and neglect, so being very clear as professionals what that looks like and getting nuanced understandings into what that looks like in family practices.

JJ: 42:48

So yeah, yeah,

Dr. Lewis: 42:52

we already are.

JJ: 42:55

She's coming to Thanksgiving.

Natalie: 42:58

Oh my god, just right down the road, although there's time difference, and that's okay, Jay, what question do you have

JJ: 43:07

so our audience is we want it to be those that are under 21 it is those. Is our caregiving youth, and those are the ones I really want you to talk to right now. And what advice would you give them when you have a doctor not recognizing you, or when you're just not being heard or you want to be seen? What are the words of wisdom that you would share with our kids today, with our youth today?

Dr. Lewis: 43:33

I would say that I think if you feel that you're not being heard, it's so easy for us to feel powerless and to feel that our voice doesn't matter. You can feel very easily invalidated when you have the person in the white coat, the expert in the room who either ignores you or plays or minimizes your experience. And I want to tell you that your experience is completely valid. You are the expert and you're family members care. You know what's going on day in and day out, and you're doing it, and the contributions that you make to our your family are invaluable. They're important and they're critical. That's life saving work that goes on every day by you, by child. I'd also say, though, and I wish I had said this to myself as a child, is you also need to protect your own peace and find out how that what that means for you really look out for your own mental health and well being, because for many of us, this is a long journey. This is not something that we only do for a year or two and then be done. This may be something you do for even to your young adult and adult life. So find ways to adapt, to find your own peace and to protect your mental health, and that that may mean find a hobby, that may mean a walk in the park, that may mean playing video games, whatever you like to do, do that, make sure that you stick to that, because you deserve that, and it's important.

JJ: 44:58

Oh,

Natalie: 44:58

I love that. Thank you. I've got one. More other comment, because I want to make sure I'm going to give you an opportunity to talk about somebody else. So we have, I know you mentioned the American Association of caregiving youth, and they are partner. We have our friends in the UK, cares trust. We have our friends in Australia, little dreamers. We have our friends in Canada, which is with hospice Toronto, young cares program and Ami Quebec, young cares program, but we also have some other folks, like Kasim. There's groups that do camps, kids kicking cancer. I'm throwing out a bunch of names here, our military kids. Elizabeth Dole Foundation does hidden helpers. I'm like a commercial right now, but there's and I'm going to go with and Lorenzo's house. Those the groups that I talked about, there are some very specific, because they work with caregiving youth around specific diagnoses and and then some broader ones. But there's a group that we haven't and that I looked at and I was like, Oh, good job failing. There's another group that I want to make sure we talk because we talked about foster care, we've talked about military, we talked about we talked about a lot of different we haven't talked about our LGBTQI group, and I want to make sure we're as inclusive as possible. And you mentioned in your notes The Trevor Project, so I want to make sure they're seen too. Tell us a little bit about the Trevor Project, because I know you've worked with

Dr. Lewis: 46:15

them, sure. So the most important thing I want to name out for the youth that are listening today with the travel project is that they have a 24/7, hotline. So if you find yourself it's the midnight hour, you are stressed, you are feeling isolated, you feel like you have no one to talk to you, please call their hotline. Please reach out to them that is a group that understands the nuances of what it's like to be the LGBTQ child and young adult youth today, they get the societal pressures that is a group that you can have access to, 24/7, 365, days a week. So Do not struggle on your own. And I definitely say that when I think about we know from research that that group of young and youth caregivers are particularly even more marginalized, because as they are juggling caregiver responsibilities, they're also debating things like coming out or their own safety and belonging and their gender identity, so many other aspects of who they are, their sense of self, are also things that they're considering, all along with caregiving and school and money and all the things that happen As you are a child and you're growing up. So definitely would say the Trevor Project is that 24/7 resource for when you are feeling your absolute lowest, you have someone in your corner.

Natalie: 47:32

That is such a good point. I was remiss. I would be remiss if I didn't talk about the caregiver Action Network. They also have a 24/7 number. We're going to make sure that all of these folks. And then, of course, our friends who are policy folks at the National Alliance for Caregiving, love Jason and them. We love Marvel. We love all these people. You know, the best part about doing a series like this failing is we get to learn new resources. We get to meet amazing people like you, and that's what we really want. We want younger you to know that we're out there and we want to support you. The adults really do want to help. And I think that's so important. And there's there, as we talked with our little bud, Aditya. And representation matters. Yes, it's just not everybody. We all have come in different shades, and so you need to see yourself in these roles. And so, you know, one of the things he had mentioned that it was so funny, he goes, Yeah. He goes, Uh, he's Indian. And he goes, Yeah. He goes, I walked around, I saw a bunch of old white men, and I was like, and that's why you're a future leader, my son, you are a future leader because representation matters. I love that. So thank you. You know, thank you for coming and, gosh, sharing your wisdom. Jay, do you have any other questions? I want to be fair. No, I'm

JJ: 48:42

ready for ready for you to hit yours, because I got to know what what the answer is. Oh, that's

Natalie: 48:46

right, almost forgot best one. Okay, all right, fail him. Okay. I think the most important question that was, what is your favorite guilty pleasure? What is the thing that you do just for yourself? Oh,

Dr. Lewis: 48:59

okay, that's okay. For guilty pleasure, I am learning how to play tennis, which I'm so bad at it. I'm terrible, really bad, like, my like, over the court, like, out of the court. But I love it, because I get out of my head. It's like, that one hour that's like, all about me, and I get to move. And it just, it just really helps relieve any of the stress I feel, and gets me out of, like, just my own head, just because I love that. Oh, 10, this is my time getting

Natalie: 49:31

ready to learn pickleball. It's gonna be recorded on our show. We've got a series that we're doing, take care. It's about to be ridiculous, because I'm probably more concerned about my outfit and about about my skill, and now I've got insurance, so that's I'm good with that. But I mean, Bailey, is it important for you to have the right outfit to feel like you're the Venus of. Love the tennis world. That's what you're going for. Oh, what's the young girl who's 15?

Dr. Lewis: 50:05

Are you thinking of Coco? Gaul, yes, yeah, Coco.

Natalie: 50:09

Oh, you

JJ: 50:09

guys are falling apart now talking clothes.

Natalie: 50:12

Oh no, but Coco is no. But Coco is a young tennis player, and she's like a phenom like Venus and Serena and Serena and so those ladies were fantastic. So anyway, you know, the outfit really helps,

Dr. Lewis: 50:26

it is get you inside.

Natalie: 50:28

So guys,

Dr. Lewis: 50:29

play good. I'd rather look good. So

Natalie: 50:33

that is the truth. Well, guys, thank you so much. Faylon, thank you so for coming with us. We have had such a good time. We're gonna we're gonna have, I'd love to have you and your brother back sometime, and have you both come together and because it would be fun, because I'm gonna tell you I know that we're I'm not worried about running over, but, um, I will say this. JJ, was absolutely my caregiver and Emily's caregiver. Our parents were young, and she took on so much responsibility because we didn't have a lot and we had a lot of family members. And I hear you talk about your brother with so much love and respect, and I think I looked at JJ and I thought, I have the same level of love and respect. It makes me very tearful. She still takes care of me today. Phelan, she is such a great for those of you who don't know. JJ does take care of us. She keeps me under wraps, but she takes care of so many people, and she is the epitope caregiver. So that's beautiful. Yeah. So guys, thanks. Thank you for listening to caregiving youth hidden in plain sight. This has been I hope you were blessed, because Lord knows we were. We'll see you next time when we confess again. Well, friends, that's a wrap for today's episode. Thank you for listening to our special series, caregiving youth hidden in plain sight. And don't forget to visit our website to sign up for our monthly newsletter, sign up for the free sisterhood advantage discount club, and of course, connect with us on Facebook, Instagram, LinkedIn, Tiktok, Twitter and Pinterest. You'll also find the video recording of all our episodes on the confessions website and our YouTube Channel. We'll see you next time when we confess again. You.