Growing Up Caring: A Young Carer's Story of Resilience

Rebekah Dowhy started caregiving young when her mother was diagnosed with multiple sclerosis at her birth. Over time, she became a primary caregiver, handling tasks like feeding, medications, and wound care. It was emotionally challenging as she dealt with her mother's terminal illness and felt isolated in her caregiving role.

Despite challenges, Rebekah maintained a strong bond with her mother, finding joy in their shared moments. Following her mother's passing in 2017, Rebekah grappled with loss but discovered purpose in nonprofit work. At 27, she founded the Caregiving Support Network to address caregivers' isolation and provide practical assistance through services like home care and emotional support.

Rebekah's caregiving journey from childhood through founding CSN shows remarkable strength and resilience. By turning her hardships into help for others, she is making a difference for caregivers nationwide. Her work honors the care she provided for her mother and ensures no one feels alone in their caregiving role.

About Rebekah:

Rebekah is the founder and President of the Caregiving Support Network, a ministry dedicated to giving hope and practical relief to unpaid family caregivers.

Rebekah understands the relief respite care brings to caregivers. Her mother was diagnosed with MS the year she was born. Rebekah's caregiving started with simple tasks like brushing her mother's hair, but expanded to managing complex medical needs as her mother's illness advanced.

In 2015, the Caregiving Support Network idea was born while caring for my mother. I knew other caregivers shared the same challenges and joys. In 2022, that idea became reality.

Social Media:

Website: https://www.caregivingsupportnetwork.org/ 

Facebook: https://www.facebook.com/caregivingsupportnetwork 

Instagram: https://www.instagram.com/caregivingnetwork/?hl=en 

Email: info@caregivingsupportnetwork.org

The sisters proudly partner with the Caregiver Action Network. CAN's Caregiver Help Desk offers free support to family caregivers via phone, chat, or email Monday through Friday, 8:00 am - 7:00 pm Eastern. Get answers, resources, support group info, or a listening ear. Visit www.caregiveraction.org/helpdesk/ or call 855-277-3640.




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Transcript

Unknown: 0:00

Kristen daukas, Hey, everyone,

Natalie: 0:03

welcome to the confessions of our reluctant caregiver podcast. We're happy you're here on the podcast. We're certain that you'll relate to the caregiver stories and find comfort with your honorary sisters. Now before we start, I want to remind you to go to our website, Confessions of a reluctant caregiver.com. And sign up for our newsletter. It's full of useful information that you can immediately use. Now, let's learn more about today's gift.

Unknown: 0:34

Good morning. Jay, good morning, Matt,

Natalie: 0:37

how are you doing? You know, I

JJ: 0:39

am just fantastic this morning. You know, I

Natalie: 0:42

almost felt like singing us in Oh,

JJ: 0:44

no, no, not this morning. You

Natalie: 0:46

don't want me to sing Good morning. Good morning. No. Well, you talk about like hitting it big, because we've got Becca Dowie and I said her last name, right? Because we had a conversation before we started about how to say our last name, because we're all from Tennessee, and we just enunciate however we feel like it. But Jay, without further ado, it's not about us and Becca's last name. Let's talk about Becca, because she is like a rock star.

JJ: 1:15

So Becca Dowie is the founder and president of the caregiving support network. Now that's a ministry dedicated to giving hope and practical relief. Let's talk about relief, folks to unpaid family caregivers. Becca knows first hand how relieving respite care is to a caregiver. Her mother was diagnosed with MS the same year she was born. Becca's earliest caregiving memories include brushing and braiding her mother's hair. Those caregiving duties grew to administering medications, managing feeding tubes and complicated medical equipment as her mother's illness progressed. But Becca says although she had a relationship with God and she loved her mom, at times, she felt so alone and hopeless and tired, relief only came when neighbors and friends would give a few hours of their time to sit with her mom and 2015 the idea of the caregiving support network was placed on her heart when she was still caring for her mom, because she knew other caregivers had to be facing the same hardships and joys, And when you get something laid on your heart. Becca, you know that you got to follow through. She felt compelled to tell caregivers they were not alone. And in 2022 the idea of the caregiving sport network became a reality. Becca, we are so happy today because the fact that your caregiving story really began the first year you were born. That's really a unique path. You grew into caregiving.

Natalie: 2:50

She grew up caring. Yeah,

JJ: 2:52

she did well.

Unknown: 2:53

Thank you both so much for having me on the podcast. We've already had so much fun, already talking before we got started, and you two are just the best.

Natalie: 3:02

Oh, thanks.

Unknown: 3:03

We'll take it.

Natalie: 3:07

So, so tell us, like, this is so interesting, because I asked you. I mean, I'm going to tell you right now you should watch YouTube this. This young lady, she has, does not have any wrinkles. We're like, oh my gosh, she's She looks like a puppy. You are a puppy. You're 27 and and so, JJ, I was listening this one time. Remember that one time I listened? So eight years ago, you thought of this. You were 17 when you originally thought of, I should do something that's amazing, that's amazing. And then to bring that into fruition, into reality, just in 2022 because your thought, don't worry about a pandemic. No big deal. We should do this. So, oh yeah. So let's start. I always like to say it's this is really a true one. You were born and then what happened? And literally, you were born into caring

Unknown: 4:02

and what happened? Yeah, yeah.

Natalie: 4:03

So tell us a little bit about your family, that backstory, like, you know, siblings and your mom and your dad. Tell us a little

Unknown: 4:09

bit about that. Yes. So I'm the youngest of five. So I'm the baby. She's the baby. I was born six years after the fourth. So siblings were older than, much older than me, I like to say, and they hate but I have to give them a hard time. It's my job as the youngest. That's exactly right. And my mom was diagnosed the year I was born, with relapse remitting multiple sclerosis, which is a degenerative disease. And so my earliest memories of my mom are her struggling to do things that we take totally for granted, so things like walking up the steps were hard for her. You know, she started using a cane in my earliest memories, and so I didn't know anything else, except for that beginning of caregiving, and then I later became one of her primary caregivers at. 17 and maybe a little before that, as well as my siblings, you know, grew up and moved out of the house, her care increased exponentially. And so, you know, 10 years old, it started to become my job to brush and braid her hair and do things like that. Because my family, even though we were fortunate to have really great family and friends around us. We could not afford regular home care. That's the case for so so so many caregivers, I would say, even the majority of caregivers. Oh, it was us, you know, it was my dad and I, and we rallied together. And doctors used to joke that we were, we were team beaten, which was, you know, that's my maiden name, and we teamed up and took care of my mom. Yeah,

Natalie: 5:46

wow. So it's interesting. I think you think about, you know, society of, you know, 250,000 years ago. This is how people learned their kind of responsibilities in tribes, if you think about it, and children learned from their elders, and rather, you learn from your siblings, and you rather, you see your parents about what to do. And it sounds like caring was just built into the growing up process, like I'm assuming you you observed your siblings, and then you eventually took over their roles and responsibilities as, as I would like they they aged out in the sense of, they turned 18, they either went to college or went on to adulthood. And so what was that like, kind of, growing up and seeing that, what was the dynamics like? Tell me that breakdown of your siblings like, how many boys? How many girls?

Unknown: 6:39

Two girls, two boys, okay? So 1550, yes, oldest, oldest siblings are twin sisters, twin girls. And then my two brothers are 18 months apart, and so they were all very tight knit. We were all tight knit, right? But there came a time where they grew up, needed to go do their own things, and it just made sense for me still living at home, to become that person. And I love, I love the title of your podcast, by the way, Confessions of a reluctant caregiver. Because nobody goes into life thinking I can't wait to be a caregiver for my loved one and watch them go down that path and eventually pass away. That is not anybody's number one desire. On the flip side of that, I felt, honestly, quite privileged to be the one that got to be at home with my mom the longest and be able to walk through those, you know, hard, hard, hard days with her. We were best friends. You know, we talk about how caregiving is so isolating, but I got to hang out with my mom, you know, every day, doing the day to day. I mean, when I ate something, she ate something, and I fed her breakfast, you know, I fed her lunch, fed her dinner sometimes. And so that is, you know, there's a lot of joy also with caregiving that I love to bring out as well, even even though it is very hard, and we obviously recognize how hard it is, which is why we have the caregiving support network. But there's also joys as well that could work with that. You I

JJ: 8:09

know that your dad worked because, you know, most people do need to work and support the caregiving effort, the mission. So your dad works, your siblings have kind of moved on. So tell me about you, because you're younger. So what about your education, socialization with kids your age? Because I'm thinking, Okay, you're in the house. You're making sure your mom's got meals. Are you outside playing? Or what is your childhood like,

Natalie: 8:33

having slumber parties, doing church, you know, lock ins.

Unknown: 8:38

There you go. That's how I know you're from Tennessee,

Natalie: 8:42

we lock our Christians in,

Unknown: 8:46

yeah, those all night prayer meetings, right? Um, it was definitely a different childhood than most, and I was blessed to have at least some friends who understood some of my closest friends growing up, had a sister with special needs, and so they kind of got it more than some some others did, but as far as you know, your regular childhood teenager activities that was somewhat non existent. My friends learned that I couldn't go out during the week. They would only invite me out to things on weekends when my dad was going to be home with my mom. So I remember one day it had just been a rough day. And I think I was about 12 or 13, and I remember just looking out at the Creek near my house and just thinking to myself, I wish I could just go play, you know, like, I wish I could just be free to run around. And I had days like that, don't get me wrong, yeah, but it was definitely one of those things where you almost feel and I've heard so many caregivers say this and and they feel guilty saying this, so I just want to say it for them and be there. Sometimes there's that feeling of being trapped, even though love your loved one. I wouldn't have traded what I got to. To to do for my mom, for the world, I really wouldn't even looking back. But there are still those moments where you just feel like I have to be here. You feel like you're boxed in, and there's no relief, there's no outlet. And I remember praying during those moments saying, God, I just need a break, or else I feel like I'm going to snap. And this is, this is as young as, you know, 12 and 13, like, I feel like, if I don't get a regular day just to go out and not worry about stuff, and just even an hour, I just want to go play outside. And you know, the next week, we'd have a neighbor drop by and say, Hey, I'm going to sit with your mom. Why don't you go outside for a couple hours? And it's something that you take for granted unless you're caregiving. And so, you know, at the caregiving support network, we're talking to caregivers every day who are facing a similar feeling of being alone that nobody understands. You know, I often felt like my peers don't really know what my day to day is. Like they kind of know, like they have they might have their own experience with their grandmother or their kid sister or whatever, but they don't really understand that my day to day is so different from theirs. You know, my day was totally geared around my mom. So wake up in the morning, feed her breakfast at 10, she has her first round of medications at noon. You know, you blend up her meal for her feeding tube. You do the catheter. You do, you know, it's, I could go through the whole list. And that, in another sense, was also very stressful, because you're a kid, and even when you're not a kid, dealing with all these complicated medical procedures could be scary. Did you homeschool? I did. Yeah, okay, was there hidden college online as well so I could stay home with her? Yeah, wow.

Natalie: 11:49

So was the homeschool intentional by your parents as a like, and this is like, No, this is like, judgment free. I mean, you do what you got to do. I mean, we're from a family in East Tennessee, and we didn't have tons of money and and our family, this is, I feel like that. That's a little bit of Tennessee. But I think our friends in West Virginia and our rural areas will say especially, and this why I have a love of rural area. I did a rural social work for my masters, is because rural areas take care of each other differently, especially faithful individual, faithful communities where we've got, you know, you throw a stone, there's a church there. It's natural, it's, it's, of course, you're going to take care of one another. But was it intentional by your parents to say we're going to homeschool because we've got to

Unknown: 12:41

so my parents were all in on the homeschooling before mom got sick. Okay, so I joked She practiced on my siblings, and by the time she was an expert. I loved it. I always loved learning. I'm very much a I love diving in and learning things on my own, so it really worked with my personality and my learning style. So moving into a college degree and earning that online felt very seamless for me. Wow. Wow. I would, you know, prop mom up in bed behind me, and do my homework, do my classes, and that's how we did it. Wow.

Natalie: 13:18

You know, I think there's people out there be like, that doesn't seem fair. And do you ever feel like? Do you ever feel like, and this, I just don't know the answer to this. Do you ever feel like, well, that's not fair. I wanted to go and have that, you know, on campus experience. I missed that. Or I missed, you know, because I know our neighbor where we live, before, they homeschool their daughters, and they're perfectly I mean, they played volleyball, and they did all the normal homeschooling stuff, and they had their own puppy schools, and they had sports and stuff like that, and they were able to engage the community, engaged with each other, you know what I mean. And so did you ever feel like, and maybe I don't want to put words in your mouth, did you ever feel like I wish I had had had the opportunity to go to public school so I could be bullied. I mean, I'm sorry.

Unknown: 14:05

I mean, I loved being homeschooled. I really, I think where sometimes I would have those feelings of, maybe this isn't fair, and this is, by the way, not a reflection on my parents at all, like we were all this together, right? But sometimes I felt like, like, where I said my peers didn't quite understand what I was going through. It felt like, I feel like I'm the only kid, like the only person going through this, and later as a young adult, like no one understands my day to day. And yeah, I've been fair sometimes, just being completely raw, you know? And I feel like it's important to be unfiltered when it comes to that kind of thing. Like, it would be easy for me to say that every day I woke up with a great attitude, and every day I'm like, I love, you know? I love doing this and

Natalie: 14:51

great. I love this dumpster fire.

Unknown: 14:53

This is super fun, exactly, you know, I love this feeling of burnout. It's great. Yeah. But, you know, I think it's just important to share those raw feelings, which is another reason I love your podcast, because so many caregivers feel like they have no voice to say that. Right? Absolutely. And you know, we started looking into the stats before, before we actually started this nonprofit. And it was very mind blowing to me, because, like I said, I figured there were other caregivers out there. I knew there had to be, because my friends were, you know, dealing with their sister and things like that and caring for her. But at the same time, you you feel so isolated. You feel like you're the only one in the entire world going through this. And my dad would say the same thing as an older adult caregiver. And so we looked at the stats, and one in five Americans are caring for someone, and it's like, Wait, there's a lot of us. If you know 10 people, you probably know two caregivers, and that's just mind blowing. It's such a hidden community, but it's such a large community at the same time. And so, you know, we've been blessed to connect with caregivers all over the country, and while their stories are unique as far as to who they're caring for and what their special set of circumstances, there's also a lot that we all have in common, and it's a lot of times people have caregiving plopped in their lap. You know, we have one, one woman named Bonnie, who her parents passed and she had to leave her life completely, her job, her career, her house, just leave it and move all the way across states to care for her brother, and she had no caregiving experience. Oh, you didn't know what to do, and all of a sudden you're taking care of someone with complicated medical issues, and so I feel blessed in a lot of ways that I got to grow up into it, and so I got to learn as I go, but that's a luxury that a lot don't even have absolutely.

Natalie: 16:55

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, Natalie, 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 month's 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: 17:58

Let me ask you this so as you've grown into the nonprofit, but even before then, with friends, I know you said you have one set of friends who has a sibling that has a differing abilities. Has it given you a different perspective? When somebody comes in and says, Oh my gosh, I didn't get tickets to this concert. I really wanted her, Oh my gosh, they were out of this at the store, they didn't get my pants or something. They didn't. What perspective does that give you? Because we had a guest on that. It was Jordan peace this past year, and I know he said, you know, his mom had cancer. And he said he would have friends, he go to school, and they something, they complain about something. And he, like, my mom has cancer,

Natalie: 18:38

you know, he and he zip it like you have, you know, worries. So

Unknown: 18:41

what kind of perspective

JJ: 18:42

has that given you in life? Like, do you kind of call out people, or do you just think, okay, they

Unknown: 18:48

just, I want to set up. I remember, yeah, I would go out. I would have, you know, I'd have to schedule out when I would go with my friends. So we'd have to either have my dad home, or I'd have to set up something with a neighbor or a friend from church to come sit with her. And I remember one time I went to Nashville with my college friends, and I'm walking through Nashville looking around all these buildings, and that's how, you know, I'm from a small town, like, wow, don't

Natalie: 19:16

worry, we do too.

Unknown: 19:18

And I just I realized they're all, you know, they're just chatting about their favorite coffee or, you know, whatever, some sort of inconvenience in their life. And I just think they have no idea that this day, these few hours, are my vacation. This is like a vacation to me, and it just it put everything into perspective, and sometimes it would be frustrating, and that's where the disconnect with my friends would come in, or my peers of that age, of any age, really, if you think about it, of like they have, I felt like they had no idea what really matters in life is not that silly stuff. Yeah, when you're taking care of a loved one who is dying. Or who's suffering intensely? It, it does put things into perspective really quickly. Yeah, yeah.

JJ: 20:07

So I know that your mom, she passed in 2017 but 2017 Is that correct? Yeah, Becca, so I know that she she passed, but at what age was there a discussion where it was, you realize that this was a terminal illness, basically. Was there a discussion there that you're a kid, but you know your mom is ultimately, she's going to pass sooner than a lot of people think their mom is going to pass.

Unknown: 20:33

Yeah, I would say that hit me pretty young. Around 10 or 11, I started realizing that, you know, this isn't going away. It's actually getting a lot worse. I think there was a lot of hope in the beginning that, and even up towards the end, that maybe, maybe we'll find something that helps reverse this, or maybe they'll develop a cure. You know, there's all these thoughts going through your head, yeah, but I remember just getting in the shower so no one in the house could hear me, and just crying one time I woke up from a dream, I think I was 15 or 16, and I just woke up crying because I dreamed that mom had died. And so that's that's another thing that I'm happy you brought up, because the anticipatory grief of caregiving is part of that emotional drain on a caregiver. It's not just taking care of someone who's sick, it's taking care of someone who you know, ultimately will likely pass away, either sooner or at some point. You know, and that is really hard to wrap your head around, while caring, you know, for a loved one

Natalie: 21:38

you know, Jay, you would think that Becca was like, I'm glad I said said your age, because I'm going to tell you that you're speaking like someone who is exceptionally seasoned in life, somebody who is probably very insightful, who might be in their 50s and 60s. You have such wisdom that have have you've absorbed. But there's a lot of there's a lot of adult emotions that you're feeling as a child, that the the goal of probably all the adults is for you not to have to experience that. And I think about, you know, I just, I'm just hearing you, because I work with children. And I think, Gosh, you're talking about things that are so complex that as adults, we have a hard time managing those thoughts and feelings and emotions, and based on our past life experience, is how we respond to that, right? And you've got, like, single digit life experience, and the first five, I don't even count. You're just, you know, figuring out, you know, the world is around me and coloring and passing kindergarten, basically, I just, I think about, like, there is this goes back to like, you know, Heather zakali. He talks about brutally beautiful. This is a brutally beautiful story. It's not fair that you had to experience this as a child, but look at what this experience has taught you, and the resilience that you have built and the insight that you're helping people you know you experience thoughts and feelings that I did, and I was 45 years old, and I struggled with it, and I had 45 years of experience and two degrees and working with you know all that, it's so impressive. I just, I have to say that like you are such a like a like, she's truly a powerhouse. I mean, she was a powerhouse, but dang. And so I just have to, I feel like I need to say that because you know, if your list, if, for our listeners out there, you can't see how young she is in the sense and thinking about all the adult themes, they are like you're not supposed to be watching PG 13 movies and you're doing dealing with some PG 13 and, you know, 17 and older stuff. So I think that's really important that, you know, we acknowledge, because there is a National Association for child caregivers. And I was, you know, when I first heard about that, Becca, I actually thought somebody called CPS and so because, you know, I'm like, children shouldn't be caring for their parents like that. But then I reflect back on how we supported our grandmother, Jay, when, when our grandmother lost her husband and she couldn't stay by herself, we all rotated in staying with her, and it was just as right as rain. Yeah, very normal

Unknown: 24:30

too. You know, I'm not saying every child should have as much weight of responsibility, you know, I wouldn't wish that on a child, right? But at the same time, and my husband, the reason he does this with me, is he helped care for his grandparents, his Nan and pop. And you know, our board, the people on our board, all have caregiving experience, and all the staff, all the volunteers, we all have caregiving experience. And I think, and a lot of us as children, and I think that there is something beautiful about caring for a loved one. In your home, if you can, and including the entire family, because you see life in a different way. You understand what is important about life. You understand this is going to sound weird, but the beauty of disability and what people with disabilities have to offer and to teach us that sometimes, when we ignore that and push that away and avoid that because it's painful and it's sometimes, usually not fun to deal with, we are missing out, and that's one reason we named caregiving support network. What we did with network in the name is we want to bring in faith communities, bring in businesses and bring in individuals, and all surround caregivers and lift them up. And you know, we like to call our caregivers hidden heroes, but we don't want them to be hidden anymore. You know, we want to elevate them in society and say we have done a terrible job of supporting these people, and they need better. And that happens practically.

JJ: 26:04

You know, Becca, I love when you wrote your your background, and then you also just you said it a little earlier that you and your mom are best friends, that you all had a really special relationship. I know at one point that she was nonverbal, but you could still you still laughed. You watched TVs, things like that together. Did you all talk about the disability, about what was coming in that stage of anti anticipatory grief. What did you all like? What did she share with you? Like? What were those times?

Unknown: 26:32

I love that question that's making me think. I don't know that we ever really had a let's sit down and talk about what's going to happen. I think it was so understood, just because the level of care that continued to increase until the end, our family was very hyper aware that that is what was happening. I would say the effect it had on my mom and I is we seized the day. You know, every single day like this could be our last day. So we're going to make this the best day that we possibly can. And same with birthdays and mother's days and Christmases, it's like this could be our last holiday together. So let's go all out. And that perspective on life has probably been one of the most precious things I've taken from caregiving. I don't think we ever truly had that kind of conversation. I think those conversations definitely happened between my dad and I a little more as the caregiving team. We would when we were alone. We would talk about, you know, how Mom's going to pass and, yeah, commiserate and grief together. We really were, you know, a team. And I joke that we have this trauma bond, you know, like my dad will always be, so we'll always be very close because of that. And so, yeah, it was, it was something we were always very aware of, but it's also something that made us focus on the little things and trying to find joy in those little moments, whether that's making our favorite dessert on a Monday, or, you know, watching a really funny old comedy and just laughing and kind of letting go of all the stress you have to find, find the joy where you can when you're going through something like that. Yeah,

JJ: 28:16

absolutely, absolutely.

Natalie: 28:19

I just so many things in my head. Let me ask you this, when you talked about doing some pretty complicated stuff, right in the sense of related to your mom's care, and so whether it's feeding tubes or having the responsibility of feeding and caring, and whether it's various kind of activities of daily living that she needed support, because as her illness progressed, she needed additional support. And so did you have any medical people who came in and taught you how to do that?

Unknown: 28:55

So yes and no, we were primarily self taught. My dad and I, we did a lot of googling.

Natalie: 29:03

Thank God for the internet. Thank God for you being the youngest, because your older siblings are like we didn't really have the internet like that. Thank you. YouTube, exactly.

Unknown: 29:15

Well. For instance, one thing that we were taught she had, at 1.4 stage four, pressure sores, otherwise known as bud sores. And my dad took over the bandaging of those, and was taught by a surgeon in our town. It was a small town, so he said, Dad, I'm bringing you in and I'm going to teach you how to do this. And at the end of you know, her going in there regularly, he said, you know, just as much as my nurses on how to bandage these wounds. And so the year that she passed, she passed in December, and I think it was January or February of that year, she had her Poland twisted, and we had to go into the ICU at Vanderbilt, and the nurses came over, and her care at that point was as complicated as it got. And they said, Well, who, who bandages these bed sores? And Dad said, Well, you know, I do like, well, who? Who cares for her feeding? You know, do you buy her food? Who does all that? And he said, Well, my daughter and I do that. And that was just question after question, well, who showers her? And he's like, Well, I do, you know, who does this? We're like, we do. And the nurse started crying because she was not used to seeing that, you know, the family just taking on that kind of intense care. So, yeah, we, we did it all, almost all of it ourselves, and we were lucky enough to have great doctors and a great team that taught us how to do those things in the hospital, that we could carry that knowledge home.

JJ: 30:40

You know that that hurts my heart to a certain extent, though, because I listened to you, and I know when we've had to do things for mom, especially Emily, our youngest sister, who was there 24/7 she would get exhausted, and she was so tired, but She also, at times, would lose that daughter since and she lost so many times. She would lose the relationship, there would be days, and she said she felt like she was telling mom what to do, like Mom, you can't do that. Do you ever feel like there there were moments because your your situation is different, you were always brought up in that role. But do you feel like there were days when you were more of the mom than the daughter? I

Unknown: 31:25

think towards the end, a little more than anything, just as her she became more nonverbal, and I did have to do some more of those things, yeah, but because I grew up into it, that was mom. That was our daughter. Mother relationship was me caring for her in a lot of ways. And I think she probably grieved that even more than I did, because I remember she would ask me to, you know, do something with her leg bag or her catheter or something like that. And she just hated asking me. She just hated that I had to do that. Whereas I'm like, Mom, it's fine. I don't care. I'm used to this at this point, so I think that was something she grieved. And you know, that's one reason why, when we built the caregiving support network, we decided to include covering the cost of home care in our program of support, because so many caregivers feel that way, or they they don't have the education that they need on doing some sort of complicated procedure or even medication levels, you know? Oh yeah, the doctor says, Use this at your discretion. Well, that's terrifying for someone who's doesn't come from a medical background, and so that's something that my dad and I wish we had had, is help from medical professionals in our home, and that's and that's something that we want to offer to other caregivers who need it. 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

Natalie: 33:39

and I'm just gonna, I don't know if you know the answer to this or not, but, you know, let's talk insurance. I mean, how much of did your because I know your dad worked, which is why a lot of that caregiving during the day kind of landed on on your shoulders, but there was no benefit that your dad had. I'm assuming he had commercial insurance. Was your mom on disability, if you don't mind me asking, she

Unknown: 34:00

was not, and this is the case with a lot of caregivers, so I'm glad you brought this up. We made just enough to not qualify for disability. And it was so ironic because, and I don't know the percentages on this, my dad will tell you better, but I would say probably half sometimes, if his paycheck was going to medical related expenses. So you have your bed, pads, your, you know, just the whole gamut wound care supplies, which is very expensive, and special food, and all of these things add up so quickly, and it's so much more expensive than your normal personal upkeep might be. And that's just not how the government looked at things. And so, you know, that's another reason caregiving support network was born, because we felt like a nonprofit, a ministry was the answer to that gap that comes from state funding. No one knows caregivers. You know better than other caregivers.

Natalie: 34:57

Now that's the facts. I'm not going to lie to you. So I do think it's the government's responsibility, because we

JJ: 35:04

pay taxes. Yeah, that is that's a fire for us. For us, for sure. There's so many things that is a big fire for us. There are programs out there, or there are answers out there, but the the way that you have to dig, and if you don't ask the right question, well, you won't get the answer. It's not it's not freely given. And when people have to choose, it's so hard for me to believe that people have to choose, okay, I'm gonna choose food, or I'm, you know, do I choose food or do I choose you know depends or not even that, but you know incontinence items or medication, overpaying my light bill, and you're like, how? How

Unknown: 35:48

do you make that decision? And so many caregivers, I would say, all the caregivers I've met through caregiving support network, they choose their loved one and sacrifice things absolutely 100%

Natalie: 36:00

or their own health, their absolutely so, you know. And here's the thing. Number one, I think it's amazing that you're doing nonprofit, like, I'm like, hello, donate. You can donate to caregiving support network, because all the things that you're doing, but I think that the it's also and, and there should be more that we do, that we should care for one another. Because, right, there's, you know, I'm again, I'm a mental health background for 25 years and working that. I do believe in take care and our neighbor. I do believe we were raised that way. The church is way, raised that way. Rather, you go to church not doesn't matter, because we should be kind towards others. And I think, you know, when we we care for strangers. They they really are neighbors. And so that's

Unknown: 36:43

Samaritan story. Who's your neighbor? It's the guy on the side of the road that needs your help.

Natalie: 36:48

So I totally agree with that. Yeah. So

JJ: 36:52

Becca, there's, there's so many people that we talk to that are either in the throes of caregiving or they're not quite ready to talk about life after caring, where you go to after you care. And I know you've started your nonprofit, and we've done that. We're going to talk about that in just a little bit, but tell me about what happened when your mom passed. What happened to you personally, like, what happens? What what does your body do? What does your mind do? Where do you go? Right?

Unknown: 37:27

Great question I want. I wondered that myself the first year, like, where am I? Who am I? What am I supposed to do? Because when your life is centered around your loved one, and this was the case for me, who grew up in it, obviously, but also my dad, who had taken on her care for so long, he picked jobs based on mom. He picked, you know, he didn't have a social life either. You know, I think that's important to bring out. It wasn't just me as my dad too, and when mom passed, we kind of looked at each other and our our daily routine was centered around mom and so all of a sudden, obviously your normal grief, right? You missed your loved one, but then your daily routine is gone, your really your sense of purpose is gone, because you felt like your entire life purpose, which it was for a while, was to make sure your loved one was okay, was just jerked out from under me, and so I looking back, was definitely in shock, definitely went into shock for a bit. I graduated college the month she passed, and then two months later, I moved to DC for a job, which is where I learned fundraising and all the skills that prepared me eventually to lead this nonprofit. And it was, it was terrifying. It was terrifying. I had to refigure out, like, who, who am I? And what am I doing with my life every day? Where do I go from here? And that was, that was really scary. It was really scary. I was blessed to, you know, have good dad and good friends and family who rallied around me during that time and held my hand through that process. I wouldn't probably be here without them so,

Natalie: 39:13

and it's so interesting. So you said you graduated you moved to DC, because that's not, I mean, that's basically just the same as your town, and,

Unknown: 39:25

like, no more stoplights

Natalie: 39:29

and so and you go to this, you take this really giant, dramatic change. I mean, let's, like, really be real about this. You didn't move to Nashville and hop, skip and jump. You moved. You moved a good distance from life as you knew it, and it almost feels like you're right about finding yourself and determining who do I want to be. And yet, what you do every day is centered around caring for others now it is, yeah, yeah. And. So that's interesting,

Unknown: 40:01

yeah, well, and when I was going into college, I was thinking about, what do I want to do? What do I want to do? And at the time, I was like, Well, I wouldn't want to fundraise. That doesn't

Natalie: 40:11

sell me something. It's not sexy.

Unknown: 40:15

But I did know I wanted to work in the nonprofit space. And I thought, how cool would it be if there was a nonprofit for caregivers and their loved ones with disabilities. But again, I thought to myself, well, I don't want to do I'm not going to do that. You know, first of all, I'm 17. I don't know what I'm doing. And there's other people who could do that. And you know, I'm caregiving now. I'm putting in my caregiving time, right? And and here's where the reluctant part really comes in. I went to college for organizational leadership, so fancy name nonprofit management, went to DC, took kind of a different path. Wasn't not the nonprofit space, but did learn fundraising. Found out I loved it because it's all it's just about connecting someone's passion with a mission, right? You know, people have funds to give, and it's all it's connecting them with really amazing work and giving them the vehicle to do that. So I fell in love with that, and could not get this pesky idea of a nonprofit out of my head. And it just stayed there that whole time. You know, I couldn't run away from it. And I met my husband, and in 2020 we were sitting there talking, and I said, you know, when I'm when I'm in my 40s or so, I'm planning to start this nonprofit about caregivers, and I would love to do that. And he said, Why? Why are you waiting? You know, why would you wait? Why not do it now? You know you're qualified based on your experience and our work experience. Let's do it. And so the rest is history. And I wouldn't have it any other way. I really wouldn't. I mean, we've met the most incredible caregivers through this nonprofit, the most incredible donors and sponsors, and it's just it's incredible. It's such fulfilling work, and it's so fulfilling to see what both the caregivers and our sponsors get out of that relationship. And we say it's a relationship stronger than burnout, and that's where our sponsorship program came about. But oh,

Natalie: 42:18

I just so I know I'm we're pushing up against our time. So I do want to ask you a question. I want to ask you about your relationship with your siblings, because you've talked a lot about your your you and your dad were in the thick of this together. Yeah. Where were they during this time, where, what and how is your relationship now? I mean, because there's, there's an age gap,

Unknown: 42:41

we have gotten closer and closer as I feel like almost the age gap lessons the older I get, and so, you know, they they were also dealing with it in their own way. I think in some ways, they might not have realized what the day to day was like. My sisters definitely did help as much as they possibly could, um, considering what they had going on in their lives as well. And so we were a close family. I remember one time my brother Luke, and my brothers Luke and Andrew drove up and had to lift mom when my dad hurt his back. And so they were there when we needed them. It was definitely, you know, at 17, I sometimes thought, Well, my sister's moving away, and I'm going to be here, you know, with all of this, that I had to come to terms with that. But looking back, you know, they were, they were dealing with their own struggles and trials in life. And so I, I, like I said, I feel privileged that I got to hang out with mom as much as I did and spend that time with her, and I think we've really been united by our grief of mom and our separate relationships with her and how we grieve that, but it's still all just missing our mom at the end of the

Natalie: 43:56

day. Yeah, man, it's interesting, because it would be easy to be resentful. I mean, seriously, there are a lot of siblings that, and we've talked to folks, there are a lot of siblings where one takes the lead, or the others back off completely because they can't handle it. And, you know, I think it takes and JJ and Emily and I have gotten into it. We talk about it. We've got a the end of year kind of reflections and resolutions and caregiving for us. You know, we go on and we we're thick as thieves, but we get on each other's nerves at times. JJ is clearly, you can tell JJ is in charge. She has that look up, in charge. Yes.

JJ: 44:39

JJ is my voice.

Natalie: 44:41

She does that. I that is like a beacon. I can hear that from China. Do you want

JJ: 44:47

me to say your name? I say, don't say it. Natalie, oh,

Natalie: 44:51

what she says, tone to it, and I hate it. And they're like, don't talk to me like that. And it's just talk to me like that. Um. And those eyebrows. But, you know, I think, I think that it's given each other grace and space. It's great.

Unknown: 45:08

And, you know, I was, I was blessed to have siblings who who love mom and and wanted to help where they could, whereas we talked to caregivers of caregiving sport network, who they either don't have siblings, or their siblings don't understand, and so they've left it all on one that happens more common than not, that's more common than not, and that's why we come in. And I'm not saying we take the place of their family, but we certainly become a family to them, because, you know, often they'll say, You're to me, you're the only person I can talk to about this. My siblings don't want to hear it, because they either feel guilty or they just think that you're complaining. And we don't have anyone, you know. We don't have anyone to lift this burden off of us. It's just sometimes it's just them. We talk to a lot of caregivers who it's just them. And I think about that, and I can't imagine, because I had my dad, you know, I didn't, you know, have to do it all by myself, whereas a lot of these, you know, people, it's just them and No, no family support, no often their faith community doesn't even know they exist, because they can't go physically to church. That's right, we have to bring that to them, which is, we actually recently launched sponsor a caregiver where you can choose a caregiver profile on our website, and then they learn your first name. They know that you're praying for them. You can send them notes of encouragement. And we really do become a second family to them.

JJ: 46:42

So I want to ask you a couple questions about because I know listeners are like, Okay, tell me a little more about this, because I know they can go to your website, but just tell me where your services are offered and what someone can do. Like, I'm a caregiver. I'm losing my mind. Let's say that's my scenario. I mean, I'm always losing my mind back. Yeah, you

Natalie: 47:02

lost it a long time ago. A caregiver,

JJ: 47:06

and they really need some help. They're like you. They just needed a walk, or they just needed to go play in the creek if you are taking care of your mom, for example. What can that caregiver do? What does caregiving support network offer them? Yeah,

Unknown: 47:18

so they can go to the websites caregiving support network.org, and there's a big button at the top. This is need help, and we made the process as easy as possible, you know, while still doing our due diligence with, you know, vetting properly so that we can answer to our sponsors. But it's a simple form with their info. I set up a video call with them, someone on our team interviews them and learns about their biggest area of need, and then our program is customizable, but the things that we offer are covering the cost of a home care someone to come in and give them a couple of hours, you know, just just some time off where they can trust that their loved one is with someone with medical, you know, background, meals delivered to their door. That's another thing we hear a lot, is that I am sick of making 3456, meals a day for myself, my loved one, my kids, whatever. You know, it's a lot. And then a house cleaning, which is another big area, caregivers have a lot more cleaning on their plate with the sheets and the the laundry, there's just a lot, lot more that they have to do absolutely and the reason we made this so practical is that way we can lift some of the everyday burden off and give them time to go do something else, whether that's their own doctor's appointment, which happens quite a bit, whether that's running an errand for their loved one. You know, we have a caregiver who uses that to go pick up her brother's medication because she can't leave him alone. And so however they use it is fine, but it's usually for something else that's practical. And then we also offer emotional and spiritual support. So we have prayer partners that call caregivers every other week, and we just give them a space to vent talk. We connect them with local resources. We help take that burden of research off their shoulders. Maybe they don't have time to sit there and and look things up for three hours at a time, and we can find, Hey, did you know that there's this program in your town that does this and this? And usually they haven't heard of that before, and so that's that's the holistic package. That's the the multi, multi way approach we do to that. And we all work through local businesses and churches as well to start building up that local community for them, because that's our ultimate goal. Is to build them up such a great local support system that we can, you know, move on to the next, the next caregiver that needs us most.

JJ: 49:42

I love and how can we help? How can a listener help?

Unknown: 49:46

Listeners can sponsor a caregiver. It is the most powerful. I think it's one of the most powerful ways to donate out there. You can sign up. You can pick a caregivers profile that speaks to you. Sponsor, you know their name right now. We have Ann who's been waiting over 200 days, and it's a monthly donation, and that gives us the ability to give them those things, like, you know, the home care, the meals, the things like that. And then they'll know your first name. So they would know, you know, JJ, and get to we'd get to send you personal updates on them, and then you could send them a note if you feel felt led to do so. The level of involvement is really up to the donor, but it is truly, truly powerful thing, and we've seen how transforming that can be. Even just a phone call saying, Hey, someone is thinking about you, someone's praying for you. I've just, I've seen the change in their mental health and and in their lives. It affects every area

Natalie: 50:49

I love, this gosh man and our, you know, so sad, because right now, like, I didn't stop us because we were having too much fun, but our time is, is, like, at our end, and I'm like, you come back. So have to come back because you love her, and she is an honorary younger sister. And, oh yeah, girl, you are totally I

JJ: 51:09

need to break it to you like I would have been. I could have been 23 she could conceivably be my daughter. Oh, that's

Unknown: 51:16

awkward. That's awkward. Just a number

Natalie: 51:20

words of wisdom from our younger folks. And now she is a sister. Now I'm putting her in my will. Yeah, she's in your will for sure. Jay, okay. Becca, here is the last favorite question of the sisters. Okay, because JJ, did ask a good one. What is your favorite guilty pleasure? What is the thing that you love to do, just for yourself.

Unknown: 51:41

Wow, that's such a good one. I think probably is listening to music. Ooh, it is in chocolate. We can throw that one in there. All that good stuff. I have a huge sweet tooth. I got that from my mom. He Adi together and we'd make it through half the bag.

Natalie: 52:01

I support you. Do you

JJ: 52:02

dance? When you listen to the music, you can dance by yourself. It's okay. Do you do the dance or do you but yeah,

Natalie: 52:08

there is no requirement for dancing. Oh,

Unknown: 52:12

not see that on this video.

Natalie: 52:16

But yeah, this has been such a wonderful time that we've had with you. I can't believe already done. You see, do you see why we go longer? Because we just sit here? I should check that. And so well, we will definitely have you back. We are going to have all of Becca's contact information along with the caregiving support network so that you can donate and or you can sponsor a caregiver and Becca. Thank you so much for blessing us this morning. This has been so good, so good.

Unknown: 52:46

Thank you for having me on.

Natalie: 52:47

This was so much fun. Oh, awesome. All right, guys, until we confess again, we'll see you next time. Thanks. Bye, bye. Well, friends, that's a wrap on this week's confession again. Thank you so much for listening. But before you go, please take a moment to leave us a review and tell your friends about the confessions podcast. Don't forget to visit our website to sign up for our newsletter. You'll also find the video recording of all of our episodes on the confessions website and our YouTube channel. Don't worry, all the details are included in the show notes below. We'll see you next Tuesday when we come together to confess again. Till then, take care of you. Okay, let's talk disclaimers. You may be surprised to find out, but we are not medical professionals and are not providing any medical advice. If you have any medical questions, we recommend that you talk with a medical professional of your choice. As always, my sisters and I, at Confessions of a reluctant caregiver, have taken care in selecting speakers, but the opinions of our speakers are theirs alone. The views and opinions stated in this podcast are solely those of the contributors and not necessarily those of our distributors or hosting company. This podcast is copyrighted and no part can be reproduced without the expressed written consent of the sisterhood of care LLC. Thank you for listening to the confessions of our reluctant caregiver podcast.