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Fill To Capacity (Where Heart, Grit and Irreverent Humor Collide)
Podcast for people too stubborn to quit and too creative not to make a difference!Join visual artist Pat Benincasa in conversation with a riveting roster of guests to uncover extraordinary stories of everyday people. Listen as they share their quirky wisdom, unlikely adventures, and poignant life lessons! Fasten your emotional seatbelt for this journey of heart, humor and grit!
Fill To Capacity (Where Heart, Grit and Irreverent Humor Collide)
Legacy In Action: Rosalynn Carter and the Power of Care
Who cares for the caregiver?
In this powerful and tender conversation, Mandy Barr—President Carter’s great-niece and Engagement Specialist at the Rosalynn Carter Institute for Caregivers—opens a door into the heart of caregiving in America today.
With raw honesty and lived experience—as a caregiver, military spouse, and mother of a medically complex child—Mandy Barr brings depth, resilience, and grace to a role millions carry but few see.
She also brings us something rare: a loving, behind-the-scenes portrait of Rosalynn Carter—her fierce compassion, unwavering presence, and the quiet power that shaped lives and policy.
This is more than a podcast episode—it’s an oral history, a tribute, and a reminder that care is strength, legacy is action, and the human experience begins with being seen.
Links:
The Rosalynn Carter Institute For Caregivers
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Please Note: The views expressed by our guests do not necessarily reflect the views of the podcaster.
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Pat:
Fill To Capacity where heart grit and irreverent humor collide. A podcast for people too stubborn to quit and too creative not to make a difference.
Pat:
Hi, I am Pat Benincasa and welcome to Fill To Capacity. For months, one question kept coming back to me. Who cares for the caregivers? I wanted to know? So I started digging online looking at social media caregiver sites and the stories people were sharing quietly and urgently. And that search led me to a truly remarkable place, the Rosalynn Carter Institute for Caregivers and they call it RCI. And that brings me to today's guest, Mandy Barr, president Jimmy Carter's great-niece, and the engagement specialist at RCI, the Rosalyn Carter Institute for Caregivers. So today, Episode 101, "Legacy in Action: Rosalynn Carter and the Power of Care." Mandy Barr, welcome. It's so nice to have you here.
Mandy:
Thank you so much. I'm quite honored to be here today and I knew it was gonna be a fun, fun podcast and fun session. I'm just eager to share, I'm an open book today,
Pat:
That's great 'cause I have been really, really looking forward to our conversation. So, Mandy, before we start being the great-niece of President Carter and First Lady Rosalynn Carter, you grew up around a powerful legacy of service. What has it meant to you personally to carry that forward in your own work?
Mandy:
Well, that's a great question and it's actually a question I get asked more than I would ever have thought as an adult now. But growing up in a family as a whole that made the conscientious effort of conscientious act and effort put into caring for others was a whole way of life or living for them. And they were the model growing up. I saw that, but, and my mother and her siblings, my grandfather was Billy Carter. And he cared deeply for others as well. Buying gifts for people, taking people in under his wing, mentoring them. I saw this modeled in so many ways from early on as a child and growing up. And one strong memory that that stands out for me and something that has been kinda like a foundation for me, not just growing up, but as an adult, I look back on it and see how that shaped who I wanted to be as an adult was going to church and Maranatha Baptist Church as a child.
Mandy:
And there are things that you think are just normal in your childhood until you, you get older and you realize they're not quite so normal for everybody else. But I grew up with people coming from all over the world to that church. And so I grew up in this rich, multi-ethnic, multicultural environment as a child. And I just absorbed that like a sponge. I was so utterly fascinated by where people were coming from, the way they dressed, the way that they spoke, how they lived their lives, and seeing them, people from all over the world come to that environment as a child. And not just in church, but we had visitors quite often in planes. There were visitors at my grandmother's house and my mother and grandfather would entertain people. And I just saw that Uncle Jimmy and Aunt Rosalynn especially, they treated everyone, and I mean everyone with the same respect, with a dignity.
Mandy:
They had this empathy that just surpassed, I think that cultural barrier that could have existed. Yeah, the empathy and compassion they had for others. They made the effort to shake hands, to touch someone on the shoulder to say kind words to everyone to make them feel like they were the only person in the room. And they were very much that way with me as well. And then later with my children and growing up as an adult, they always asked how the family was doing, what the children were doing and Uncle Jimmy especially, which uh, some people may be aware of this, but he had near like a near eidetic memory, absolutely brilliant person. And he would just remember, it's like he could just pick up from a conversation you had months before and, and just pick right up from there and carry on. But he could do that with anybody. And it was just amazing to me. But that effort that they put into that alone asking how the family was, what could they do to help wanting to know what I was doing with my work, just generally interested. They really could make people feel like they were the only person in the room with them. How special. Wow.
Pat:
Yes, yes.
Mandy:
That is a quality that just doesn't exist. Like you don't see it as much in this day and time. Yeah, they focused on that person, whoever they were speaking with and just made them feel special.
Pat:
I think as someone growing up in this country and from his presidency onto his work with Habitat and the visibility of Rosalynn Carter for the country, their example of compassion and service, no one could miss that they had a healing presence. They really did. Very much so. Now that brings me to what drew you to The Rosalynn Carter Institute for Caregivers?
Mandy:
Well, I see, I think I'll start on a very personal level. I said I'm, I'm pretty much an open book when I share my “why” behind what I, what I enjoy doing and what drew me to the institute to have a job here. I started out as a coach years ago, right before my first child was born many years ago. I'll kind of backtrack a little bit. I was a part-time caregiver along with my father and my mother to my grandfather, my father's father who had, was diagnosed with dementia and then Alzheimer's. And he was in kind like an assisted living situation. My father, he was the baby of three children and the older siblings didn't, did not live close by. So, he became the primary caregiver and was also trying to run his own business, operate his own small business. And we helped however we could because back then my brother was doing travel baseball and my parents would go away and I would fill in what I, where I could. But back then, I think one thing that really just shook me to my core and made me realize what caregiving was truly about was the day when I went to visit my parents at their house. And I just found my father sitting alone at the kitchen table just quietly sipping his cup of Maxwell Coffee. And I sat down with him and he just said he didn't know who I was today. And as a daddy's girl, sorry, it always makes me a little emotional.
Pat:
Yeah,
Mandy:
My father was my hero. He's, well, he still is today one of your heroes. And as very much a daddy's girl, like that just shook me to my accord that day because I just saw him. I really saw him and the burden, like the toll that this role had taken on him. Yeah, he just, I could see every wrinkle like, and it was just, I could see how utterly exhausted he was and just the emotional impact of that day. I remember that day we just sat there and quiet 'cause we're a lot alike. We just sat there and drank coffee and that's all he needed was just a presence. Yeah, he was processing and I saw that there was truly a need for extra support for people like my father. He was a male caregiver and my mother, she did so much for my grandfather as well.
Mandy:
But my father had reversed that role. My grandfather was a retired major in the army and my father was an army brat. And just that role reversal, I saw that it took a toll on him. Yeah. And then later in life, once I found my husband and married my husband, he is a veteran as well and he served two tours in Iraq and his last tour, a sniper unfortunately got him through the left lung from behind. And my husband has about half of a left lung as a result. He has a lot of other physical limitations due to his service and just from his tours alone and just wear and tear on his body. But he also has post-traumatic stress disorder. So we have what we call some of our sunny days and some of our cloudy days. And when we first started courting as they say and falling in love, I saw the symptoms that were present.
Mandy:
And that also became part of my “why” in joining the Rosalyn Carter Institute. At the time, there was an opening for a caregiver coach to work with military families in the operation family caregiver program. And I would go into the home, and I would work in problem-solving approach with caregivers that were dealing with symptoms of traumatic brain injury and post-traumatic stress disorder, trying to work together to figure out what resources can we pull for you? How can we work through some of these challenges that come with these symptoms in the home? How can we help the children that are in the home, the minors in the home as well? So, it was a very holistic approach, but very much a problem solving approach that we take Yeah. On our evidence-based programming. And that was a large part of my why. And even after that program, that was the pilot back then, it ended up taking off all over the United States.
Mandy:
And I was very happy to see that. But I went back to working with students for a while here on the campus of Georgia Southwestern State University, but that why was still there. And then we had three children, our daughter Riley, our daughter Emily, and then Cuyler, who has an ultra-rare neurological disorder called Allan Herndon Dudley Syndrome (AHDS) or MCT8 Deficiency. That's a mouthful. He also has Lennox Gastaut Syndrome (LGS), which is a, a rare epilepsy disorder from that developmental delay. And we pretty much do everything for Kyler. He does not walk on his own. He is too fed, very expressive, but textbook nonverbal. He is just our surprise, blessing and just a joy in our lives. But there are a lot of challenges with having a medically complex child. And that was a large part of my why, to come back to the institute too and see how else can I advocate for caregivers?
Mandy:
Because becoming a full-time caregiver on top of being a parent, on top of trying to work, I saw it's just there were so many layers or like onions in a way. There's just so many layers to those needs. And being able to work with caregivers and meet them where they're at and extend that empathy, extend that compassion, because we have been in that place ourselves when before we had a diagnosis, his disorder was still so rare and new that there weren't all these resources that could just be thrown our way. Like here, go here and go here. We joined an online community and I don't know what I do without them. People that understand and get it, like know where you're coming from. And I want to be able to do that for caregivers no matter whether it's in the professional realm or advocating on my own, especially for the rare disease community. That's really important to me.
Pat:
The fact that you've lived different versions of caregiving, it's such a compassionate way of being that, as you say, when you talk to people in that situation, you're not coming from a college degree or things that you've researched, you're living it. And I imagine that creates quite a bond between you and whoever you're talking to.
Mandy:
Yes, I'll say very much so. One thing I, I guess I would say I enjoy, and I always like, we, I've cried with caregivers , much like I used to cry with students I work with, but you cry with caregivers, you do form this bond. I've became friends with a few like after the fact because you just, sometimes you surpass that position as coach and once you know you're done with the program and whatnot, I, I'm pretty transparent with my caregivers myself because I feel like I need to be that way. I show them I'm a coach, but that doesn't mean I have my act together all the time. Like I still need support. There are days when like I was like, I'll have sometimes a caregiver say, I'm sorry, I just, I'm such a mess. Like I apologize for the way I look. I'm like, girl, you made it like you made it to the session. I'm so proud of you for getting out of bed because there are weeks when I did not want to get out of bed. Yeah. And those weeks still come, it's just to say, Hey, I'm a coach, but I feel you. We know Mandy, we get through it together.
Pat:
It's authentic. We're not on all 24/ 7. There are some days that catch up with us and you don't wanna get outta bed, you don't wanna face the day. But then you find your feet hitting the floor, you get up and you do what you need to do. Now Rosalynn Carter was ahead of her time in recognizing caregivers as the invisible frontline of our healthcare system. How does her legacy shape the work at RCI today?
Mandy:
I would say as far as shaping the work of RCI today, I think what's always been special about us, I'll too our own horn here for a second because we like to be humble, but we also like to say, kind of lift up what we're proud of. At the same time, what's been special I think to us at, for us as an institute is that many of us are caregivers here at the institute. We've all had a special bond with Aunt Roselynn. I've seen, and it's been such a joy for me to see like what's been happening when I've not been working here, like from afar, but getting to know staff and the people that I work with. And we form a special bond and we support each other as caregivers. And I think that means a lot for us as an Institute to say we're not just an institute-we’re like you.
Mandy:
Like you mentioned before, it's not just those college degrees coming out. It's not just our skill sets or expertise is that lived experience and also the personal touch that Aunt Rosalynn has had on this institute. She, up until her decline began with her health and whatnot, unfortunately she was very present. Very present. I mean, my hat was truly off to her. There are days, especially with when Uncle Jimmy was alive, when I would grumble about my week and how busy I was, and then they would talk about what they were doing and I was like, I just need to be quiet. I would get humbled very quickly. I'm like, I just need to be quiet and count my blessings here. Because she was so in involved and she always wanted to know like how, again, it's that personal touch of like, how are their kids doing?
Mandy:
How is your family doing? And having that personal bond and connection I think speaks volumes. She was not an absent founder. She was not that I wanna be several degrees separated from what's here, here's the baton, here's the torch, here's to the CEO. Like this is, it's all yours. That's not that relationship that she had with the foundation and her legacy of caring from since she was a child. Going on the road with Uncle Jimmy, campaigning for governor and then for president. She was a boots on the ground, pun intended, <laugh> literally boots on the ground knocking door to door. Very personal. When it came to advocating for her husband and for the needs of caregivers, she saw that need going door to door. Not everyone knows that story, some people do. But that's where she first saw that need. She saw people with disabilities within the home and the caregiver, usually the parent or family member that were just, they were just exhausted.
Mandy:
And she started these conversations and she saw this need, she made that effort. It's all about that effort I feel. And she established relationships with people. And that alone I think is a huge part of how her legacy affects us. It seeing her as a model alone in the way that she had that personal touch. She was involved in our lives. She was like a, the best way I can explain it was just this radiance, this light. That entered a room. She really was, I'm not saying that to just because she's my aunt, but I've, to watch her in action. She was what we call a "still magnolia." Very much so. So she was a gorgeous woman. She was very petite, she was very gracious, very kindhearted, compassionate, but do not underestimate her. She had this fierceness about like this, like I said, that radiance.
Mandy:
But she could be fierce. And you knew when she meant business at the same time. Like she could call a room to order with a look, but she had that at the same time. She could flip it and just have that compassion and that that grace that just exuded from her presence. I mean, you just felt her in the room. And we know, and the joke is amongst family. And that's like when you saw her and Uncle Jimmy in action, like, or together working with a crowd, you saw who called the shots. Very much so. I mean, I've seen her literally, well Jimmy, when he was ready to go, he was ready to go. And he's like, I'm ready to go back to the car. Let's call the secret service, you know, to get rid. Let's going on the road. She said, one time I watched this, I'm not done talking Jimmy. And he just mumbles like, okay. It was just that like you saw that it was just that respect they had for each other too. Her as a model alone has had such a huge impact on this. And I thought, by God, if she's still out there doing it, if she's still out there boots on the ground, going to conferences, doing to speaking engagements, I don't have much of an excuse not to get my together and get out. That reason. What
Pat:
You're highlighting is the preciousness of someone being seen. Someone being listened to and being acknowledged. Right. And it seems like a lot of the world is transactional that so many things are, what can I get from this person? And you're talking about that just direct connection, talking to someone and listening to them about their life, who they're caring for. And boy, that's the meaning of life right there.
Mandy:
That's the human experience. Yeah. And that's something I like to tell people. It's when I imagine the human experience and what it's about, that's it. It's surpassing these cultural barriers. Yes. It's surpassing our limitations in the boxes that we tend to put around each other. And I think I've mentioned you before, before this pod, before the recording, I we're talking about how her legacy of caring involves all of us. That's her greatest achievement. Doesn't end with the institute no matter where it goes. It doesn't end with our policy work or how much we fought to try to get an office of caregiver health into the White House. It's, it resides in all of us. She wants everyone to see their potential. And I would throw, I'm bringing Uncle Jimmy into the mix too. Like he wants everybody to see their potential for service, their potential to have empathy and compassion and to care for other people. That's the human experience. Yes.
Pat:
It's you
Mandy:
Almost outta the job. Like how cool would that be to be out of a job , because everyone feels so supported and seeing. Yeah. I think that's just ideal.
Pat:
Yes, it is. It is. I'd like to talk about caregivers for a moment. Caregiving looks different for everybody, whether it's an aging parent, a disabled child, or a spouse at the end of life. What are the biggest emotional and physical tolls caregivers face?
Mandy:
Gosh, there's so many things I could throw out on a very personal level, but from, I'll go from our research, but because we are, everything is so rooted in our research. But from our research, I would definitely say touch on that isolation. Many caregivers feeling like they are a one woman or one-man island. And that comes from their cultural sensitivities that we take into place there too. That some of them feel like I, I have to keep this to myself. I don't wanna burden other people. And some people are quite literally isolated, and some military families often feel that way. They are literally away from their family. They're stationed somewhere or they don't have any family nearby. They don't have that extra support system. So, we have to work on establishing a support system. We work with caregivers, really thinking outside of the box and getting creative with some of these solutions to that isolation or that feeling of isolation as we know.
Mandy:
Sometimes we may not be actually alone, but we feel very much alone. And I know in the rare disease community, especially I, I can't touch on that enough, how even in a rural south Georgia for example, we are, it's kind of a, I hate to use these terms, but with a child that's medically complex, it can feel very much like a sucks to be you situation because we just don't have adequate resources here. We're getting better. Things have changed over the years, but starting out, my husband and I, we felt very isolated because even fam we didn't expect them to understand. But family didn't quite get it. Yeah. They don't see the daily struggle, the tears, the staying up at night. I would say also the physical, mental and emotional. And for some like the spiritual burnout and neglecting one’s own needs, we see caregivers that are passing away, that are dying before the care recipients.
Mandy:
We see caregivers that have been diagnosed with cancer, with a chronic illness who have, they're like say type two diabetes for one for one or chronic kidney disease and aren't able to take care of themselves or they can't find a way to take care of themselves. And that's just it. It breaks my heart to see the caregiver passing away before the care recipient. Yeah. And then I'll tie on and also with the what's to come of this future with the care recipient. Like what if something happens to me? It's the stress and worry. We feel that with our son in many ways too. It's what if something happens to us, how is our son going to be taken care of? How are we gonna prepare for that future? It's very easy to spiral out into that dark abyss, for lack of better words, I would say financial burden, especially food insecurity is still very real.
Mandy:
We have a lot of calls, emails that come in about financial assistance and we don't offer that directly, but I am one that sit, we we're not in a capacity to offer that directly, but I'm gathering these resources for you in your area. Let me know where you live so I can narrow down these resources for you and assist you in finding some connections for that that exist in military families exist with dementia caregivers all across. And then sometimes what happens is that recipient passes away and then that there's just this whole struggle with identity. There is a struggle with financial capacity. They have to take care of an estate all of a sudden as sometimes things aren't taken care of ahead of time. And that's something that we worked through when we had our dementia workshops is work through like trying to get these things taken care of. We have consistent fatigue from just navigating challenges. Yeah. Every week is something new for people. It's a new challenge, especially with dementia. Everybody progresses at their own rate with a care recipient. And so, the challenges are very similar across caregiving roles, but also very unique. And I explain this as like caregivers are like snowflakes, but in a good way. It's, we're all very similar but very unique at the same time.
Pat:
That's a nice way of putting it.
Mandy:
And the seasons that come and go, some people may start experiencing sundowning earlier than this other person and they can give some advice. So we try to encourage them, like seek out those support groups, seek out that support so you can get that advice that you need from someone who's been there and done that.
Pat:
What does "sundowning" mean?
Mandy:
Oh, the dementia disorder where it's like the confusion that comes with a dementia patient. A dusk as the sun is setting. Got it. Sometimes it creates this of a confusion. Sometimes a little bit of belligerence from the care recipient. Sometimes it creates even more of like the memory issues may be more present. That's that sundowning effect. Okay. That can happen. But also finding respite and respite care I think is a big one too. Respite, respite care can make all of the above, sometimes even a little bit better when they have time to seek resources and they can have time to have seek comfort in in person or virtually
Pat:
What you're really talking about is what's called the forgotten workforce. And I was so surprised to learn there are 105 million caregivers In the United States. And yet it's your outlining and highlighting support systems seem fragmented. Would you agree that it's causing caregivers to kind of remain invisible?
Mandy:
I would say in some way yes. Because support systems are fragmented. And I would say that it's very much a state-by-state thing too. Some supports that are offered in one state are not offered in, like I have friends that they mentioned some supports to me, for example, sometimes I have to explain we don't have that in Georgia. Yeah. So it can be state by state what your state is offering, your local agencies are offering. It's also regional. You have your more rural areas and that's something we're very passionate about as well. And that Roselynn was very passionate about was really getting to those rural caregivers that really do feel more isolated, that do not have the same support systems as other people or those go-to resources right at their fingertips necessarily.
Pat:
Really what you're talking about, what people should be aware of when it comes to accessing resources and support, what you're saying is it helps to look and see what's available, what, whether it's state, federal, or citywide, whatever the situation is. But Mandy, I have the impression that caregivers often are just trying to keep their nose above the waterline. They don't have time to get on the phone. Your call is important to us and they don't have 20 or 30 minutes to sit on the phone. Exhausting. So they're in a loop. They should be looking for support and accessing resources, but they're just trying to get from one minute to the next with the person they're caring for.
Mandy:
I completely agree. And I said on a professional and personal level, been there and done that ourselves. Yeah. And there are weeks when I, I have to literally try to carve out time just to research one particular thing for my son. Yeah. It's always something. It's always something. And I get it. I completely get it. So, when we have requests that come in or calls emails from caregivers, last thing I want to do is send them on a wild goose chase because they've been there, they've done that. Many caregivers are desperate by the time they, they reach out to us. And so one support that I really like to put out there right away for caregivers, one of my go-tos personally, especially for dementia caregivers, for those that have a disabled person in the home or with unique needs in the home or an aging adult, is look to your local area agency for aging or on aging or sometimes it might be called a Council on Aging.
Mandy:
Okay. a local area Agency on Aging can sometimes be that go-to for Meals on Wheels to be able to tell you these are what services are provided in this area. This is what is not provided, this is what you could qualify for. If you have Medicaid, Medicare, this is what you don't qualify for. So that is one go-to even in rural areas that I promote also like your county extension offices and we like to come around here like your four H office people often call 'em here, your 4H office, these agricultural rural areas. But your county extension office. It amazes me sometimes what some states are doing in some areas in connection with providing workshops for people that may have an aging adult in the home or caregiving workshops. We have had county extension offices pick up the dealing with dementia program that we offered and because they understood the need in that community. Yeah. Yeah. So check out your local extension offices and look at your state website. I would say look at the state, the human services website to see what you could potentially be eligible for. Especially when it comes to food insecurity, financial assistance. Those are some of my go-tos. Also, the Caregiving Action Network is a great help desk as well to help narrow down. And the Caregiving alliance, there's so many. And I'm gonna send you a resource sheet that you can also share <laugh>,
Pat:
If you would. I will post it on the show notes.
Mandy:
That would be awesome. Okay. I'll definitely send that to you. I could rattle on, but the first go-tos that I usually use with caregivers are those the local area Agency on Aging, the human services site for that state or the county as well because they, they should have a site that specifically shows the resources available in that county or in that state. That Caregiver Action Network is a great help desk and us reach out because I'm still seen as a caregiver coach, I'm still viewed as like a point of contact and a consultant. I'm gonna meet you where you're at and say, can you gimme a little bit more information about, I'm not trying to be nosy, but I'm just trying to gather more information about your particular situation because I, I don't wanna give you the runaround. Yeah. If that's what you've already done. That's the last thing I wanna do. So I'm a digger, I'm a researcher. I love it. I love to dig.
Pat:
That brings me to RCI partners with the crisis text line to provide 24 7 emotional support to caregivers. And here's how it works. The person will text Tough T-O-U-G-H to 7 4 1 7 4 1. Now, how has this service impacted caregivers who are struggling?
Mandy:
We have seen, according to the numbers that we've received and the data analysis on the quantitative end, we have seen an uptick in those numbers over the past couple of years. We've seen an uptick in those numbers of caregivers that have utilized that crisis line. And that to us makes us feel good regardless. We're seeing that it's become a beneficial resource for caregivers that we have more and more as it's advertised that more and more caregivers are utilizing that code and they're utilizing that crisis line and those people are trained to meet the caregiver where they're at. Again, I like to also put out there, I know that it says crisis line, but when I've worked with caregivers and I give them this information, it's something I carry in my wallet if I can pass that information along to other caregivers. Because you don't always have to be in full blown crisis mode or like in emergency mode.
Mandy:
If you are having, for example, it is hard sometimes for a caregiver to think what constitutes like a call to these people. I don't wanna burden these people. And it's always, it hurts my heart to hear. Like, once again, I don't wanna burden someone if I'm not in actual crisis. And I say, no dear. Like, no, that's . If you are having a panic attack, like an anxiety, if you, if your heart is racing, if you're just feeling this dread, like that elephant on your chest, you just wake up feeling like overwhelmed. Like that is every reason to call and be able to sort through what you're experiencing with someone. Don't wait. It doesn't have to be like a full blown crisis situation. If you are feeling overwhelmed period that day and you just have this complex, just this range of emotions that you just, it's just hard to process and you just feel hopeless.
Mandy:
Call, don't think too hard on it. Let me put it that way. Don't over, 'cause I'm one of those, I'll throw myself under that bus. I'm an over analyzer. I will overthink. I do not want to burden people. And I tell I'm very transparent about that. I'm very private. I don't wanna burden anybody. I had to get over that. I had to get over myself and get over that to know if you are experiencing a, what feels like the beginnings of that anxiety or like a panic attack, you know, by all means call. Because I would much rather a caregiver call not knowing exactly if they even should be calling and get that help and get a comforting voice on the other end.
Pat:
Oh yeah, yeah.
Mandy:
It can change your day. It can change the outlook.
Pat:
Rosalynn Carter was visionary. She once proposed the idea of an office of caregiver health at a federal level. Now, in a perfect world, I'm gonna phrase that again. In a perfect ideal world where something like that could exist, what kind of impact could it have on caregivers?
Mandy:
I think some of us would like to be out of a job in a good way when it comes to having all caregivers feeling seen, heard, and supported. But having an office of caregiver health was one of her ultimate goals. We've put so much work into having that earmarked. We've had people on staff that have worked tireless, just tirelessly in their efforts to have a wealth of experience in policy and working as constituents lobby. We group together people who are lobbyists, people who advocated for caregivers. We gathered letters of support from caregiving communities across the board, organizations across the board in support of this office of caregiver health and our hope. And her ultimate goal would be to make sure that every state on a national level, this awareness was in place. Yeah. So that we wanted to work from the top down, ideally get to the systemic level.
Mandy:
So having an office of caregiver health would, I think ideally mean that when it comes to the healthcare system at the systemic level, that this change will start happening. Yeah. Because there will be supports for medical staff, they're gonna be supports for medical professionals. There are gonna be supports out there at every state level. Oh, well this state offers this and this state. Like we don't it where there's just these void, these lacks. We're trying to get into all of these different pockets of caregiving. And I said rural caregiving especially. But ideally what we would like to see are all these underserved areas, especially being brought to the light and saying, Hey, we haven't forgotten about you. We see you. Yeah. And these are supports that are available, but because there is a, an office of caregiver health in place that basically can help create that change national level and down into the systemic level into the healthcare system in insurance. You know? Yeah. It just trickles out and snow. It's gonna snowball out in a good way. Yeah. I think that's, like I said, I would just to be out of a job and have a, have to shift careers because like I, I'm just not needed in that capacity. <laugh>, not a little sad, but it's, I would be re just overjoyed to know Yeah. That the state, every state is providing support.
Pat:
Mandy, this conversation really creates a shift. Historically, caregiving support was always tied to the patient's diagnosis, the needs of the patient. And the focus was always on the patient and not the person caring for them. And this whole conversation, you're saying to caregivers, you know what? It's okay for you to get support. It's okay for you to be cared about. It's okay. And not only is it okay, it's vital, it's for you. And so I think that's one of the most remarkable things coming out of this. Because as you say, a lot of people will say, no, no, I'm okay. No, no, I don't need that help. No, I don't need dinner tonight. I gotta focus on this. No, I gotta take them to that appointment. No, no. I don't need anything. And I understand that. But then this beautiful voice of RCI and your voice saying, wait a minute, it's okay to be cared for. And that's what I, I love about what you're talking about.
Mandy:
I think it's especially I, the words that come to mind first from a dear friend of mine whose child also had a very rare disorder and she had other children with the same rare disorder that she has and they have since passed away. But her mission too was to make people feel like they mattered. And the two words that come to mind are, you matter. Yeah.
Mandy:
You matter. Uh, I, many caregivers I talk to, and I'll throw myself into that mix too, is that, you know, there are some days that we feel, what is my worth? Like do I even matter? Yeah. And we were seeing that on our assessments. We'd have pre-assessments and post-assessments in our programming and we would see that a decline in that lack of self worth and do I matter? Yeah. And that is just something that has been become deeply ingrained, whether it's from external pressures or from even your own family members to be, it is just somehow, even if it's unintentionally, this person has been made to feel in some way that, do I even matter? Yes. And they feel very much like they've fallen through the cracks. And in the healthcare system especially. Yes. The conversation was so historically centered around the care recipient. And what we're trying to do is change that conversation and put the caregiver also in the center. So who do you think is taking care of this <laugh>?
Pat:
Yeah. Yeah. So
Mandy:
Just bring them to their appointments. Who is keeping this person alive? Yes. Quite literally some days. And that mental, physical toll that it takes on that caregiver, it needs to come front and center. It needs to be the focus, it needs to be a center of attention. And we are trying to address those cultural barriers too. Language barriers. When you have a, especially a language barrier in place. For example, some people don't understand their rights. Some people are afraid to speak up for themselves. Some people don't believe that they have that voice or they don't believe that, oh well whatever the doctor tells me, that's just it. Uh, no, but that's, it's not you.
Pat:
That's a good point.
Mandy:
Advocate for yourself. Yeah. It's hard to self-advocate when you're not aware of your rights. You're not aware. And that's what we're trying to bring to light as well, is you matter. You have rights that you need to voice and you can advocate for your care recipient, but also yourself. Yeah. Because one of examples, in some military families, we may have a veteran or a military member go to their psychiatric appointments, for example. And many caregivers, often spouses are left out of that loop. They're not allowed to be at those appointments. They don't receive any information from that, from those appointments. And what happens is, and my husband has agreed with this, is that depending on what treatment that they're undergoing, when they go to these sessions, the bandaid is ripped off and then they go home and the caregiver's not given appropriate supports. The family's not given appropriate supports. And it's like you're bleeding out into your family. You know, it's, they don't know how to deal with the aftermath of that. What that session on that treatment.
Pat:
Yeah.
Mandy:
They need those supports. They need to know how to advocate for the recipient, but also themselves and say, Hey, we've got a problem here. This person has been triggered and it, they came home with all of this unload. Everything's unloading. And we don't know. We don't know what to do with all of this.
Pat:
So, Mandy, people listening who are caregivers or love someone who is, what's one thing they can do today to get support or feel less alone?
Mandy:
One of the very first things that comes to mind is first, and when I say these things, I'm most definitely not saying. This is just so easy because I know, I know, it's not easy. I have to make the effort every week to do some of these things. But one of the first things that comes to mind is try to find a support group. Whether locally in person or online. I don't know what I would do without my online support. There are people across the world with my son's condition that are dealing with the same condition. I'll never meet them in person. But do I consider them family at this point? Yes. Yeah. Very much so. I don't know. I'm so grateful to have these people in my life. People from across the world, it doesn't matter. It just, all these barriers melt away when you are coming together to, to help each other.
Mandy:
So whether it's online or in person, see if there are any local support groups. Sometimes you'll find them at your local, in your faith-based community. Reach out, look into some of the adult daycare or respite because your respite is important. You need some independence, you deserve it. It's not just a, you deserve it very much. So you need that independence. You need to have those moments where you can reclaim your sanity. Yeah. You can do something that's just for you. And sometimes it can be even the small things like committing to a cup of coffee with a friend. You don't always have to go out. Some people I know with, especially with dementia care recipients in the home, finding just 15 minutes is, can be very difficult. I have caregivers that can't hardly even take a shower. Yeah. So that respite care is crucial. It is vital.
Mandy:
So reach out into your faith-based community. So many people that want to help. I find, and I, I had to learn this myself to get over telling people no and say yes to people who have offered to come and just sit with my son for a minute or two. Friends that practically have had to kidnap me outta my office and take me to coffee. 30 minutes sitting down with someone for coffee. Just, I don't know, it's just something about it. Just having a new cup of coffee <laugh> and being able to talk and just kind of vent for a little while. We all need that. Yeah. Not thing has to be about problem solving. You know, sometimes you just, you need to vent. Like you've gotta get out, you've gotta get it out. And I'm all for that. And I would say like the, I said the local support, looking into the adult daycare options in your area, look at what you qualify for potentially with your insurance.
Mandy:
Rely on that faith-based community. If someone has been offering an offering to come and sit with your care recipient, what is some minor training that you can do? Just have that caregiver notebook or something handy so they can have a go-to list your recipient's favorite things to do or activities so you can get out for a walk. Even if you can't join a friend for a walk. Walking has been proven to just, it lowers your heart rate, it lowers your blood pressure. If you're able get out, even if it's for a slow walk for a couple of blocks, half a mile. Set yourself a little goal. You know, you don't have to be a speedster, just get out there <laugh> and just a little walk can provide so many benefits of your body. It just kind of helps you reset for a minute. For me, it's walking in the woods.
Mandy:
Yeah. I'm a big nature person. Being outside, I, I went for a walk in the woods this morning. Just a brief walk. I love na. I, I just resets me. I love it. It's my sanctuary. I've been that way since I was a child. But just getting out, talking to my plants, <laugh>, we have animals at home and so just a simple routine of talking to my chickens, talking to my pigs, talking to my dogs and my cats. Five minutes, it just sets the right tone. Yeah. Yeah. Love more if I wake up stressed or had an issue with my son or my kids or one of my girls is being really sassy in the morning, <laugh> my son. But I have two very opinionated daughters as well. Um, which I strongly encourage, but some mornings it's just woo <laugh>. You need to decompress for a minute and you need that time. You deserve it. You're worth it. You're worth every second. You know that you can get. Yes.
Pat:
Well Mandy, as we hit the top of the hour, this conversation cuts deep in that caregiving isn't a side issue, it's not an afterthought, it's a human one. And what you and the Rosalyn Carter Institute for Caregivers are doing reflects the best of who we can be grounded in compassion, dignity, and a deep respect for the truth of people's lives. You know the saying rest in power and I can't help but think that's exactly what Jimmy and Rosalyn Carter are doing, knowing their work continues and voices like yours. Thank you for lifting up the invisible and reminding us that care is strength. Thank you so much for coming on.
Mandy:
Thank you. And most definitely. And I just like to remind people too and leave them with this thought that it's an all of us. It really is. Those legacies are an all of us.
Pat:
Yeah. Well thank you and thank you listeners for joining us today and take care. Bye. Thank.
