According to a study commissioned by The Elizabeth Dole Foundation, there are 2.5 million children, teens, and young adults in the U.S. taking on significant responsibilities for wounded, ill or aging veterans within their own families. These “hidden helpers” are supporting their wounded parent, grandparent, sibling or other family member with activities of daily living (dressing, bathing, toileting, etc.), administering medications, assisting with physical therapy, caring for siblings, managing finances, and even navigating the healthcare system. They grow up fast by necessity, often facing unique challenges to their own health and wellness journeys as they help their wounded warrior.
In this episode, we share stories of two wounded warriors, and how they shaped a curriculum developed by Nemours Children’s Health. These free, publicly available online courses are helping educate healthcare providers, and the wider public, about the unique health issues these children face.
Guests:
Kylie Briest, NICU Nurse and Hidden Helper
Megan Powell, Military Spouse, and parent of a Hidden Helper
Allison Gertel-Rosenberg, MS, Vice President, Chief Policy and Prevention Officer, Nemours Children’s Health
Take the FREE online course “Caring for Children and Teens in Military Families.”
Host/Producer: Carol Vassar
EPISODE 71 TRANSCRIPT
Carol Vassar, podcast host/producer:
Welcome to Well Beyond Medicine, the Nemours Children’s Health Podcast. Each week, we’ll explore anything and everything related to the 80% of child health impacts that occur outside the doctor’s office. I’m your host, Carol Vassar, and now that you’re here, let’s go.
Music:
Let’s Go. Well Beyond Medicine.
Kylie Briest, Hidden Helper:
I can often get overlooked just because I’m the child in this family, so they’re not going to ask me any questions because I’m just the kid
Carol Vassar, podcast host/producer:
That’s Kylie Briest talking about her experience as not just a kid but as a young caregiver to her Wounded Warrior father, Corey. According to an in-depth study by the Elizabeth Dole Foundation, Hidden Helpers like Kylie number around 2.5 million. That’s 2.5 million children, teens, and young adults in the US taking on significant responsibilities for Wounded Warriors within the family unit, such as helping a warrior perform activities of daily living, administering medications, assisting with physical therapy, caring for siblings, managing finances, and even navigating the healthcare system.
As the entire family sacrifices to care for these well-deserving wounded heroes, who looks out for the Hidden Helpers? As heard in the first of this two-part series, it’s the Hidden Helpers Coalition led by the Elizabeth Dole Foundation. The coalition is a public-private endeavor involving more than 50 organizations and thousands of individuals who have committed time, money, and effort to raise awareness of Hidden Helpers and give them the support and resources they need to grow up strong and healthy.
In this episode, we hear Kylie’s first-hand story along with that of Megan Powell and her army officer husband, Jesse. After four deployments to Afghanistan, Jesse was diagnosed with post-traumatic stress disorder, PTSD, and traumatic brain injury, TBI, affecting not just Jesse but Megan and the seven-year-old Hidden Helper, their raising.
A bit later, we’ll be joined by Allison Gertel-Rosenberg, Vice President and Chief Policy and Prevention Officer for Nemours Children’s Health, to learn more about a free publicly available online course created by Nemours, to educate healthcare providers and the wider public about the unique issues faced by Hidden Helpers. It’s of course created with input from both Kylie and Megan and features their personal Hidden Helper stories. Speaking of personal stories, here’s Kylie Briest on how being a Hidden Helper has shaped her entire life.
Kylie Briest, Hidden Helper:
My dad, Cory, was injured in Iraq on December 4th, 2005. I was only three years old at the time. His injury, I’ve grown up like that my entire life. It’s my normal life. He has a traumatic brain injury, which results in him not being able to walk on his own, needing assistance with everyday activities such as eating, bathing, dressing. He was also left completely blind, so being in the child role of that, it’s just learning how to adapt and overcome how to help my mom. My mom actually had to quit her full-time job as a teacher in order to provide the 24/7 care that my dad needs and the whole hands-on help. My role, I have always been, even when I was three. I was in the hospital helping him stretch out and trying to help my nurses feed him and give him meds, and so that ultimately led to me becoming a nurse for my career.
But even to this day, I’m the first one to be like, Dad, let’s stretch out today. Let me help you get your meds. If my dad is having maybe a bad day or just being a little hard on himself, I’m the first one he can call or talk to and just get that smile right back on his face and calm him down a little bit.
Carol Vassar, podcast host/producer:
It sounds like this has been your life since you were three years old. You really haven’t known anything different. At what point did you realize that maybe things were a little different in your household because of the care that you’re given to your dad?
Kylie Briest, Hidden Helper:
So you definitely realize it growing up, you’re a little bit different than your peers and your friends at school, especially being from rural South Dakota. You don’t see much of this, but I think different is what makes my family kind of cool. So it’s little things as like you have a football/basketball game for my brother, thinking, can my dad get there? Whereas the other kids, you take that for granted because it’s something you don’t have to think about. Going to college, being in activities there, I was like, how can I get my dad here for parents’ weekend?
Maturity-wise, you’re forced to grow up a little bit. You see things that normal kids don’t see every day, and so it’s a balancing game on how you can relate to your peers.
Carol Vassar, podcast host/producer:
Megan, I’m going to turn to you. Share a little bit of your story. You’re the mom of at least one Hidden Helper that I’m aware of, but you’re also the wife, the spouse of a veteran, an injured veteran. Tell us about that.
Megan Powell, Military Spouse:
I am. My husband was 14 years in before he was medically retired. I did all the military wife things, followed him around for 12 years, and he did four tours to Afghanistan. He has the invisible wounds, PTSD and TBI. So we did not realize… You don’t realize what four deployments does until long-term. So, in 2019, he came to me and said, “I think I have PTSD,” and that was the day that kind of changed everything for us. We had a three-year-old in the house, and we had… Immediately, it was, let’s fix this, and there is no fixing it. So we started the road to medical retirement, and we are now…
He’s been retired for, I guess, almost two years now. It’s hard to believe that it goes fast. We have a 7-year-old who has just been diagnosed with autism, so we are working our way through that along with Dad’s injuries. He, like Kylie, knows literally nothing but being a Hidden Helper.
The day he was born, there were issues. Then it didn’t take long. His introduction to it, thankfully was through Sesame Street and their tools. So he was able to learn what a stormy day is. At three and a half, you could look at him and say, “It’s a stormy day,” and he knew that meant that he needed to be on good behavior and he needed to be there for dad.
And now, at seven, it’s still a stormy day, and it’s still the same thing that it was. He goes through a lot of days where it’s, “Hey, buddy, come on. I know you want to play, but Daddy has got a headache, and I need you to be quiet.” So we do it a little bit different. If you look at my husband, you think nothing’s wrong, but anytime that we’re out, we’re always paying attention to it is too much. Do we have a problem? Do we need to leave? What do we need to adjust? All those things.
Carol Vassar, podcast host/producer:
Describe the family life and particularly the effects that being a Hidden Helper has had on your son.
Megan Powell, Military Spouse:
I always say anxiety is contagious, and he was born into a family of anxiety. I have fought anxiety my whole life, and then you add my husband’s issues. There’s not much way to avoid it; you’re going to see it. All of our moods are affected by dad’s days, so a lot of times, it’s as simple as, “Hey, just back off a little bit, and Dad can’t do this today,” or things like that. And there are. There are days when Dad doesn’t go with us to stuff because there’s a decision to be made of is. Is this going to be too much? And rather than take the chance, then he’s not there.
Those days, thankfully for us, are pretty rare, but they do show up. So he gets the different side of being the Hidden Helper, because when his friends look at him, they don’t see anything wrong with dad and they don’t realize what it looks like, sometimes at home of just quiet or whatever we need on a given day.
But he’s been in the middle of it. He didn’t have an option. I mean, there is no option for these kids because you are a family unit, so there’s no option, and you just kind of figure it out.
Carol Vassar, podcast host/producer:
Allison, I want to turn to you at this point. Nemours’ commitment as a clinical leader was to create a course that would educate mainly healthcare providers. As I mentioned earlier, I took the course and found it very interesting and very helpful. How did this commitment by Nemours play out? What exactly did you create, and what did the process include?
Allison Gertel-Rosenberg Nemours Children’s Health:
Sure. Thanks so much, Carol. I think the fact that you took the course is really indicative of the fact that, well, it sits on a continuing medical education platform. It really is meant to be available widely and freely. Dr. Moss and Steve talked about Nemours’ commitment to not just educate Nemours physicians and providers about this really important topic but to educate people nationally.
And so while the push is around medical professionals, we certainly welcome anyone to take the course and to learn about Hidden Helpers and the really heroic value that they bring to this country. So we worked with our colleagues to create this course, and most importantly, we really relied on the expertise and knowledge of folks like Kylie and Megan to really tell us what’s needed, what they want to know.
How can we make sure that providers know what they want them to know? And we talked to about 200 spouses or partners of military caregivers through surveys and focus groups and used those responses to really dictate what’s in the course. We use those responses to them, pull on the experts at Nemours to tell us what does that mean, to translate that into actionable steps that other providers can use.
And what we realized from the beginning is that there are a lot of excellent resources out there, and we didn’t want to recreate the wheel. And so thinking about things like trauma-informed care, for example, or PTSD. So, we deliberately created this course to serve as a gateway or a 1-0-1, if you will, for care providers with little knowledge of military families or culture and little to no experience working with these families. And we supplemented the training with resource documents that link to additional resources for the deep dives.
So we’re not trying to be everything to everybody, really a gateway to this important knowledge and information. And ultimately, we created this three-part course, which is housed on the continuing education platform of Nemours Children’s Health. It’s publicly available at no cost, and participants can earn 1.75 continuing education credits via the Accreditation Council for Continuing Medical Education.
Carol Vassar, podcast host/producer:
Now, when you did these surveys and when you’ve talked to healthcare providers, what do you think they could be doing better in their interactions with patients from military families? How do they even identify that they’re from military families, especially where there’s a parent who’s injured as a result of military service?
Allison Gertel-Rosenberg Nemours Children’s Health:
Sure, and I think that is an important part of the conversation even… How do you start the conversation? How do you even begin to identify that this is an issue? And so when I think about what we learned from the experts in the field about how best to broach that, one of the things we learned is that every family is different.
And I think we were hearing that even in Kylie and Megan’s stories. They’re different in when and how and if they want to talk about it, who they want in the room when they talk about it, and how they’re injured or ill family members status and the impact that that has on their family, how that’s brought into the room.
And really the age of the caregiver, the Hidden Helper themselves can really start to dictate the conversation, how it’s had, but really recognizing that the role that the child or team plays in supporting the parent can look different, can feel different, and needs to be broached differently, depending on who’s there and what they want to talk about.
It’s really a clear takeaway that acknowledging the situation is even a first step. It’s not a good or a bad situation. It’s a situation and acknowledging that and bringing it into the room and asking, what are your preferences, and how can I follow your lead in this interaction to make you comfortable as a caregiver and as a patient?
And I think another important theme that we saw come out of this was the ability to be heard. Everyone wants to be heard in your interaction with your providers. It’s not different than any other type of interaction, but it really is an opportunity to develop positive, trusting relationships between the provider and the family. And we heard that the simple act of recognizing that a patient is part of a military caregiving family and asking about their stressors and needs without making assumptions about the good or the bad part of that is a really important part of the interaction.
We also heard that the importance of healthcare providers and understanding the basics of things like PTSD. For example, and how families manage things when a loved one gets triggered. Megan, I loved your example of stormy days from Sesame Street. Understanding how a family talks about it so that language can be used and replicated in conversations with the provider is really important because we don’t want to have uninformed reactions or assumptions that could poison the relationships moving forward.
And then, finally, we heard that it’s really easy for military families to feel othered and that they aren’t understood, or that the need to fend for in the relationship and to fight for what they need becomes yet another stressor on the relationship.
So as much as we can end that or advocate for ensuring that the questions are brought into the room in a really transparent and helpful way in order to get to resolution, is a really important component of what is part of the modules.
Carol Vassar, podcast host/producer:
I’m curious. I’m going to go to Megan first and then Kylie. What Allison just summarized, does that resonate with you? Anything you want to add, Megan?
Megan Powell, Military Spouse:
It does. We don’t live close to a military installation, so every provider that we touch more than likely does not have a military background. And when you walk in a room, and you start to talk about these things, the eyes can kind of… It never ceases to amaze me that providers today don’t understand PTSD and especially TBI, more so because we know so little about it.
You can see. You can see in the moment of when you’re telling them, this is what our family situation is, you get this feeling of either closure from them or almost judgment because PTSD looks different in every house. TBI looks different in every house. So if I’m coming to you and I’m giving you this information, I’m giving it to you for a reason. That doesn’t mean that it looks like something you’ve seen before.
So to know that there are tools out there that providers can use, because especially if you’re near a military installation, you expect to have military families, but we’re an hour from the nearest base, so for us, it’s different. And so when you’re still going to run across those people though, because there’s retirees and veterans everywhere. So to know that there’s training out there that when I walk in and say, “This is our family situation,” it’s one less step and one less stressor, as Allison said for me, because you get it.
Kylie Briest, Hidden Helper:
So, like Allison and Megan both said, every day is different. My dad could have a physically good day one day, but then the next day not be able to get out of bed as well. Or maybe mentally he’s okay one day, but then next day he’s very upset and very agitated. It’s just figuring out what the day-to-day looks like.
And then even looking into the families, the way each family processes it, each family member processes it, is different. So yes, my family is all supporting my dad, but me and my brother are only three years apart, but the way that we handle things is so extremely different. I’m very vocal and like to share my emotions and kind of get that out there. I don’t have as much of weight on my shoulders, whereas my brother is a very much holds it all in and bottles it up. And so I think figuring out how each family members handles it different is huge.
Carol Vassar, podcast host/producer:
Kylie, I’m going to stick with you for this question. And Megan, I’m going to ask you this as well. I want you to think back on working with the health providers that you work with, either your own or those involved with your father’s care. Are the things you wish they understood better or ways you think that they could better engage you and your family?
Kylie Briest, Hidden Helper:
Yeah. So, I really like what Allison said is that it’s not a good or bad experience. It’s an experience. It’s our experience. It’s our normal. We don’t know anything different. So it’s easy to overlook the families when you’re caring solely for the patient who is that veteran, or retiree, or active duty even. So I think it’s just looking at the entire family. How do they work together?
Like I said, how do they each process something? This is likely a lifetime diagnosis. They’re not just going to magically be better the next day. So, even a personal example is just from how I was treated when my dad first got hurt at the age of three. It is going to be extremely different now that I’m 22.
So going into doctor’s appointments with my dad, trying to help my mom, I can often get overlooked, just because I’m the child in this family, so they’re not going to ask me any questions because I’m just the kid. So I think it’s just really seeing how each family member plays that role and can be a help to each other.
Carol Vassar, podcast host/producer:
Megan, you’re nodding. What’s been your experience with doctors and either talking with you or what you wish they understood better as you’ve been going through this?
Megan Powell, Military Spouse:
I think the biggest thing is understanding of mental health and understanding that the issues that I carry in, whether it’s an appointment for me or whether it’s the appointment for my husband, is what does it actually mean when you say PTSD?
What does it mean when you say TBI? We had a nurse at the VA that I had to explain the difference to her between suicidal ideation versus actually taking action because she had triggered my husband because she just kept pushing and kept pushing and kept pushing at him to the point that she basically said he was lying. And that’s when I stepped in, and I was like, “Look, there’s a difference, and what he’s telling you is the truth because you’re not talking about ideations.”
So I think it’s so important to understand the mental health aspect of what PTSD or TBI, what they actually mean. I want to be able to talk and not have to tell you everything. You’re the medical professional, I should not have to be filling in blanks for you.
Carol Vassar, podcast host/producer:
Now, both of you participated in the creation of this course. Megan, you narrated the first portion. Kylie, you are interviewed in the first portion. I’m curious as to why you wanted to do this. What influenced you to really be a part of this, to step up and educate providers? Megan.
Megan Powell, Military Spouse:
It’s actually a funny story how I got to be a part of this. There was another caregiver who was supposed to… She’s actually a friend of mine. She was supposed to narrate it and at the last minute, EDF came to me and said, “Hey, she’s got some things going on. Would you be willing to step in?” And I always jump at any ability, any opportunity to tell our story, and that’s how we look at it. It’s our story because, as Kylie has said multiple times, this is our family, and this is our story.
So I jumped at the opportunity, because one of the things that I love about Hidden Helpers is we have a generation like Kylie who have walked through this for their entire lives, and they have been willing to stand up and share their stories, and what they’ve been through to try to make it easier for mine.
And so any opportunity that I can have to share anything, especially when it comes to our son, because I want his experience to look different and to hopefully be better, because if we don’t make changes, then we’re getting nowhere.
Carol Vassar, podcast host/producer:
Kylie.
Kylie Briest, Hidden Helper:
It’s really just sharing our story, getting our story, our version out. Like I said previously, being in rural South Dakota, you don’t see a lot of it. It’s not highlighted in the news. It seems like you should be embarrassed of it. It seems like you should be hidden, but you shouldn’t. You should get your story out. You should be sharing this. My part is always if I can share my story and at least help one person, or at least have that one kid sitting in the back of the classroom relate to me and be like, “Yes, they’re going through the exact same thing. They’re just maybe a little bit further away from me, so I haven’t met them yet.”
And so I think it’s just finding that one person who you can help and make their life just a little bit easier, because we’ve already gone through it. We just want to help.
Carol Vassar, podcast host/producer:
Kylie, I’m curious if we had another Hidden Helper in this conversation who maybe was struggling with what’s happening in their household, what advice would you give them?
Kylie Briest, Hidden Helper:
Oh, gosh. Take it day by day. Every day is different. Reach out when you need that help. I’ve met with other Hidden Helpers, and I met with some kid from California halfway across the nation, and the things that we could bond on and be like, “We can’t go to the grocery store quick because we don’t know what’s going to happen.” We have to do all these extra steps and jump through all these extra hoops.
And so being able to find someone who was that half a nation away from me who’s going through the same thing, you just need to find someone who can help you.
Carol Vassar, podcast host/producer:
You’re not alone. You may be hidden, but you’re not alone.
Kylie Briest, Hidden Helper:
Yes.
Carol Vassar, podcast host/producer:
Allison, I’m curious, what do you hope that the coursework will spark? What will it lead to in your estimation, and how do you define success with this project?
Allison Gertel-Rosenberg Nemours Children’s Health:
So I’m struck by the conversation that’s happening right now, and my hope is threefold. The first is that it’s not only for providers who care for the wounded veterans and service people, but for providers who care for Kylie and for Megan, so that they can figure out what kinds of questions to ask in their appointments, whether it’s about sleep or social activity, or what do you need to support your own health because your own health is so important in supporting your loved ones.
How do we make sure that you’re centered as part of this as well? I think is one thing. Obviously, success is getting the word out, so that we can make people aware that the course exists and that the conversations need to happen, and for them to hear the stories of Kylie and Megan and others that are shared in these modules, so that they can start to think about what that means for their own practice and how they interact with their patients.
Obviously, we want people to complete the course as part of that and then really sparking interest among other healthcare entities. Dr. Moss talked a lot about how, as a health system, we want to think about how do we keep kids healthy who might never walk through our doors, and certainly, mental health is a huge component of that. So, how do we ensure that providers and others are thinking about what we can all be doing to support those who serve and support our country in so many different ways?
Carol Vassar, podcast host/producer:
Megan, Kylie, similar question. How would you define success when it comes to this project? Megan.
Megan Powell, Military Spouse:
I’m going to go big picture here, and then I’ll tone it down. Knowing I can walk in a provider’s office and be understood without having to say 18,000 things, number one. And then I think recognition of our Hidden Helpers and that they… Number one, they are caregivers. Number two, they must be recognized as caregivers, because they need the help, just like those of us who are adults are doing it.
And so to be able to have a tool to share with our providers that hopefully share it with other providers that say, “This is what life resembles for us,” is huge, and that success is as if it’s easier for one family. Kylie said it earlier, that’s always been our motto. If we can make it easier on just one family, then we’re successful. And this is just another tool to be able to do that.
Kylie Briest, Hidden Helper:
So I hope these courses create that awareness so that military families can be seen as a team almost. You need all of them involved. Some people who aren’t military families aren’t going to see the success in this project. They’re not going to care. They’re not going to want to promote it because they’re not the ones going through it. I think it’s going to be like Megan said: when you can walk in that office and know you are seen, it will be a feeling. It will feel completely different.
The whole family should be checked on because, even from the child’s point of view, you care about your loved one more than anything. You’re going to put them first. You’re going to put them before your own needs. My mom, for example, hasn’t gone to the doctor in, I don’t know, five years, and then she just realized, oh, I should probably do just a routine physical, but she hasn’t done that, because she’s putting my dad’s needs first. So I think it really is checking up on that whole family of, what do they need? Are they checking in on themselves rather than just their loved ones?
Carol Vassar, podcast host/producer:
Hidden Helper Kylie Briest is a NICU nurse at Avera McKennan Hospital and University Health Center in Sioux Falls, South Dakota. We also heard from military spouse and Hidden Helper mom Megan Powell and Allison Gertel-Rosenberg from Nemours Children’s Health.
Music:
Well Beyond Medicine.
Carol Vassar, podcast host/producer:
The online course created by Nemours with input from Hidden Helpers like Kylie and Megan aims to educate medical providers and the general public about the unique health needs of Hidden Helpers. It’s available to anyone, anywhere, anytime, at no cost. We’ll put the link to that course in our show notes for this episode. And if you’re a provider, CME credits are available.
Are you a hidden helper? What’s your experience caring for your Wounded Warrior? Leave us a voicemail on our website, nemourswellbeyond.org. There, you may also find all of our previous podcast episodes. Subscribe to the podcast and leave a review. That’s nemourswellbeyond.org. Thanks to Kylie, Megan, and Allison for sharing their stories and expertise on this episode. And thanks to you for listening.
Thanks also to our production team for this episode: Che Parker, Cheryl Munn, Allison Gertel-Rosenberg, Kate Blackburn, Susan Masucci, Lauren Teta, and from the Elizabeth Dole Foundation, Lisell Perez-Rogers, Tessa Miller, and Brandon Hofacker. ‘m Carol Vassar. Join us next time as we learn how two different healthcare start-ups are helping clinicians “prescribe” information directly to you through your electronic health record. Until then, remember, we can change children’s health for good, Well Beyond Medicine.
Music:
Let’s go. Well Beyond Medicine.
