Compassion in Action: Donna’s Path from Caregiver to Changemaker

With a lifelong passion for nursing, Donna Steigleder’s journey began in her childhood and evolved into a career in healthcare, where she gained a wealth of experience across various medical settings. Her personal caregiving story started early, as she recognized and advocated for her daughter’s mental health needs at a time when such issues were often dismissed. Despite resistance from family and medical professionals, Donna’s persistence ensured her daughter received the care she needed, ultimately enabling her to thrive as an adult and nurse herself.

Donna’s caregiving responsibilities expanded over the years, encompassing her first husband, who struggled with denial about his MS diagnosis, and later her mother, who battled cancer. Balancing full-time work, Donna managed complex medical care at home, often feeling isolated and emotionally compartmentalized to cope with the relentless demands. Her experience as a director of employee relations gave her unique insight into the challenges working caregivers face, and she advocated for flexibility and support within her organization.

Recognizing the lack of accessible resources for caregivers, Donna created the “Healthcare to Home Care” website, a comprehensive hub for practical information and community connections. She also launched the “Compassion Mission” initiative, encouraging churches to support caregivers and those in need within their congregations. Donna’s story is not only one of personal sacrifice and strength but also of transforming her experiences into resources and advocacy to uplift others navigating the caregiving journey.

About Donna:

Donna Steigleder, a native of Henry, Virginia, began her career with a passion for writing and leadership, graduating in the top 1% of her high school class. After earning her nursing diploma, she obtained her Bachelor of Science in Nursing. Her first job as a nurse clinician provided a broad range of experience, leading to her promotion to Director of Human Resources. After a divorce, she became a single mother and took on a second job to support her family. Following her marriage to Lynn Steigleder in 1997, she transitioned to working from home to care for him while continuing her HR duties until her retirement in 2018. Now retired, Donna has combined her personal caregiving experience with her professional healthcare background to create Healthcare to Homecare, a website offering resources for family caregivers. She is also an advocate for churches to provide support to the sick and needy in their communities.

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Transcript

Natalie: 0:03

Hey guys, it's your favorite sisters with the Confessions of a reluctant caregiver. Podcast. On the show, you'll hear caregivers confessing the good, the bad and the completely unexpected. You're guaranteed to relate, be inspired. Lead with helpful tips and resources, and, of course, laugh. Now let's get to today's confession. Hey, Jay,

Unknown: 0:30

hi, Natalie, how are you doing this morning? I'm delightful. And how are you I'm just

Natalie: 0:37

swimming right along. I am here with my bestie, who I've met, and who actually came to the caregivers playbook series that we have, and that's how we became best friends, not in an airport, not randomly on the street, came to a training that we did, and shared a lot of our experience. And she has resources. And so this is going to be jam packed, and Donna has been my best friend for months.

Unknown: 1:03

I just, I need to say this something, Donna, if, if you could just tell her she's not your best friend, but if you could be best friends with me, because she steals all my friends, all of them she says they're my best

Natalie: 1:14

friends. And today's her birthday, Donna, so JJ, has no friends, my best friend.

Unknown: 1:21

JJ, my birthday is on Thursday.

Natalie: 1:27

She's an August baby, yes, oh, thank you. You're gonna have to read the newsletter, because the August newsletter. JJ, wrote, which was great. I mean, even though I harass her, she's really great writer. And so we are family, our family, our extended family, is a month of August, babies and so and so. There's photos of the merry go round and the and it was the Merida bread truck merry go round. And we were riding horses when we were little. And but we've got birthdays on 5689, 1115, it's crazy. Two on 15.

Unknown: 2:09

Yeah, August is our month. I'm going to tell you a little bit about Donna so we can get started on the snack. Because, like you said, She's do what you want, of resources. Back off. Is my birthday. Okay? Give me some candles. All right, guys, today we have with us Donna stag letter and guys, she has a long history in the medical field and human resources, but her caregiving history, I feel like right now that has that's taken her down a completely different path in life, and she's got a lot of stuff to share with us. She's cared for her first child, Sarah, a spouse her mother and currently her father. And she is an amazing advocate, and she's on a mission to change the caregiving landscape. She's got a website that has all kinds of resources, and she's also got, she's got to focus on, I think, faith and how the church should come in and really help people that are ailing and are in need of care. So Donna, we are so happy to have you here with us today. Yay. Thank you very much.

Natalie: 3:11

Well, and it's so funny because I was telling Donna Jay when we started. And so for our listeners out there, I was telling Donna that, you know, normally I start with start from the beginning, but the reality is, is Donna has so much care. I even said, and Donna, spoiler alert, is a registered nurse, so she's an RN, she's worked in the healthcare field, and so I use the word episodic. She's had very numerous episodes of caregiving. And I really want to make sure that we have that time to talk about those experiences, what she learned from it, and build on it. So I'm going to start a little bit different. I'm going to ask Donna to tell us, give us some background around your give us your background. And then let's talk about where care really started entering because care entered your world early on, and you've been caring for people, both as a paid and unpaid family caregiver, feels like your whole life. So why don't you give us some backstory?

Unknown: 4:10

Well, I would say I have been caring for people all my life. As a child, I wanted to be a nurse, and my cousins even started using me to be a nurse, but before I was ever trained, so I started well rose, raised in southwest Virginia, close to run it, close to where you guys are, and a little place called Henry, Virginia, Franklin County, moonshine, capital of the world. Had two brothers and my parents and the whole community was all related to one another, so we all knew one another. I went to school, nursing school at it was Carilion hospital. Now it was Roanoke Memorial Hospital. Then got my diploma, then moved on to MCV hospital, then, which is now VCU health system. Now one. I graduated from there, I went into a small hospital called Metropolitan Hospital, and that place taught me everything. One of those jobs where I was the jack of all trades, learned background in all types of nursing care, and I believe going through that process, being exposed to all of those types of nursing. God had a pathway for me to create a way of learning a lot of different being exposed to a lot of different nursing types of ways in preparing me for what was to come in my life. Through that process, I also became an EMT working for a rescue squad, and that's where I met my first husband. He was looking for a wife, called in, looking for someone to marry. Turned out we were on the same Rescue Squad,

Natalie: 5:53

and terribly convenient, I'm going to tell you right now. That's terribly convenient.

Unknown: 5:56

It was terribly convenient. Also, I don't believe in coincidences, I married him. Had my first child, Sarah. Sarah had a let's say she had a medical condition that I recognized. But those days, children did not be were not recognized as having mental health problems. But because of my nursing degree, because my nursing background, I saw that she had mental health problems. The family did not want me to see that, and so therefore refused to have care for her. But I knew, I knew about it, I recognized it, and so I treated her throughout her life for the medical condition she had. It was very difficult, very challenging, but I gave her the resources through me that she needed, and got her the help that she needed, and even anyone go ahead?

Natalie: 6:43

No, I'm totally an Interrupting cow, and I apologize for that. You know, I know that you I'm looking at some of my notes. I know that you taught that she was identified as a failure to thrive. And we talked a little bit about this beforehand, because so many people don't see one. Don't see parents as with children with special needs or different abilities as caregivers and working that dual role. And so that's, I think that's really important. But additionally, in addition, you mentioned her mental health issues, and a lot of people don't think about caregivers as being providing care to someone with a serious mental illness or someone with a substance use disorder. Most people think about caregiving related to aging, disabled, chronic illness, complex illness, like cancer, Alzheimer's, you know, that sort of thing. I'm really glad that you mentioned that, because your care started early with her,

Unknown: 7:43

it did at three years old. At three years old, yes, at three years old, she developed her mental health condition more so than the failure to thrive. She was never actually diagnosed with failure to thrive, but I recognize that that was a part of her problem. She had other medical conditions that were there that we never got diagnosed, but contributed to mental health problems. But at three years old, she developed the signs that she had she ended up with a mental health condition of obsessive compulsive disorder, a primary phobia and a pseudo maturity problem that from three years old on through her rest of her life, she's had to cope with, and it was only because I helped her identify that and help get her treatment that she managed to grow and develop. She's now a registered nurse. Has she? She got through nursing school, she now she had to leave nursing because of her own two children who are now autistic. She is at home. She is raising them herself. At home, special needs children, teaching them herself. She is awesome and has developed some own additional medical problems, but she is thriving and able to manage on her own. And again, she's just been phenomenal,

Natalie: 9:04

yeah, you know. And I think this is so important, Donna, because I think when people think of a mental health diagnosis, especially something like an obsessive compulsive disorder, I know that she had some anxiety. She was very you mentioned that she was anxious, she was had sleep issues, and you think about how those chronic, persistent types of symptoms can have a negative impact on your medical your overall physical health, as well as your mental health, you know, for her to be able to thrive and do well, really is a testament to your commitment to working with her, but you also mentioned that your husband, at the time, was not supportive of seeking out care for her in that in that type of care, because I want to be very clear, he wasn't saying she didn't deserve medical care. But there's a lot of stigma around mental health, absolutely, and I can imagine. And so what that was like for you? Yeah, he

Unknown: 10:02

did not want her to be labeled as having a mental health problem. Yeah, he was very concerned that she would get a label and would be, you know, the labels that came with the terms of mental health at that point, that's one day, when she was eight, she pulled a knife out of a drawer and put it to her wrist. This, I don't really like this anymore. And at that point I said, I don't care what you do. I don't care if you leave me or what you're going to do. She's going into treatment, yeah, and that's when, that's when I saw a counselor and got her on medication, because at that point, it didn't matter what she got labeled or not to me,

Natalie: 10:37

yeah, I think that's so important for people to remember and and because at the same time that you're trying to manage a child that is really high needs, and a spouse and any other individuals in your life that may have disagreed with your course of treatment, you're you're working And you're and you're trying to juggle lots of balls, like very like so many caregivers, I can only imagine that being really stressful.

Unknown: 11:08

It was extremely stressful because her school would call me every day she was crawling under the table, hiding and afraid to come out, and the school nurse would call me and say, Please talk her out. Oh yeah, it was terrible for her. She had a terrible, terrible time trying to cope, until I was able to get her to do some treatment

Natalie: 11:31

well and and, you know, I know that that you said that in your also that you, you ultimately got divorced from him, from him. Was it? Do you think it was that misalignment of not that that led to strife and really kind of led you down a different path? Because it's not uncommon.

Unknown: 11:50

A lot of it did. It wasn't just that. It was other things, but right for a long time, he believed that she was faking it, and did not really believe that she had these the severity of her condition that she had, and she felt that I was coddling her a lot of the things that she was saying that she had as problems. She didn't that. She was just looking for attention, but her condition created a lot of dysfunction in our family, and our son did not get the attention he needed, because I had to spend so much time with her. So we had a lot of dysfunction as a result of it. It was very difficult because he really didn't support didn't support us, and so it was and our pediatrician did not support us. He did not believe that she had a problem. He felt that I needed to be more strict in making her face her phobia and didn't go along with the issues that she had, because, again, children did not have mental health problems in that in that era of time.

Natalie: 12:54

That goes back to a behavioral model for those social workers and people who've worked in the field. It's a behavioral mindset versus trauma informed kind of mindset? Yeah, Jay,

Unknown: 13:06

but I just think it's, it's so interesting to see, even back then, you know, how ever many years it was ago, Donna, when caregivers are actually having to fight, yeah, for care, yeah. And without you advocating, you know, you're advocating then, and probably not even recognizing it yourself. You know that that was even the word, yeah, oh, I knew I was fighting, I've been fighting health care since the beginning.

Natalie: 13:31

Well, and it's, and, you know? And I think, you know, I think if we're just honest about it, it's also, you're a woman, but you're, but you're an educated woman at the time. If we think back to probably, How old's your daughter now, I'm going to date

Unknown: 13:45

you a little bit. She is almost 40. Yeah.

Natalie: 13:49

So if you think about 40 years ago, and you think about, you know, the voices and women having more voice in care, I mean, we already struggle enough, already when we go to the physicians. We did a DR Meital, and I did a training on caregivers as part of the medical team at an A post conference. And it was interesting, because we talk about the wallpaper phenomenon and about how caregivers can end up being like the wallpaper in the room, and they're not, they don't come to the forefront. And so don I'm sure that you've experienced that a number of times, and you're in the medical profession, so I think that's really important.

Unknown: 14:31

Absolutely, sometimes I try to make me be the wallpaper, but I learned how not to be.

Natalie: 14:37

Yeah, you're like, I'm not getting sticky today. People, I'm not getting sticky. You know what? This is a perfect break, because we're going to jump into the next caregiving. This is I'm telling you, people, she has got JAM PACKED care, but I'm going to take a break real quick so our sponsors don't get mad at us, and we'll be right back

Unknown: 14:53

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Natalie: 16:25

I feel like I need to start singing if you like pina coladas. I mean, I know what that one's about, and it's not the same. But I'm gonna tell you met my first husband on Hotmail. When they have checks. I'm gonna tell you the personals on Hotmail that tells you how old I am, Donna, I'm telling you,

Unknown: 16:42

well, I met mine for a Style magazine. Oh, I love it. Okay, that's how we met and started dating, got married, okay? And so first eight years, didn't really notice anything, but he had told me that his father had died of ms, so I knew he had a background, a medical background, that could lead to multiple sclerosis. Eventually, he said he is a total denial. Person wears per red, you know, the rose colored glasses. Everything's always good and magical thinking. He never noticed that he had any MS symptoms. I noticed he had MS symptoms shortly after we got married, and I identified that to him, and I said, you know, have you talked to your doctor about the fact that you've got foot drop? Have you talked to your doctor about the fact that you stumble a lot? Oh, no, no, that's not anything related to Ms. I don't have, MS, he had. Ms, surely, I knew he did, but he was in total denial. That point, Sarah had also graduated from nursing school, and she said to me one afternoon, because she was still living up, Mom, you know that? You know that Lynn's got MS, and yes, oh, he absolutely does, but there's no way that he's he's ready to recognize that yet, and so we're just going to have to wait until he's ready. Well, one night, I walked into the bedroom and he had his two finger two hands pointed at each other, and he was wiggling both sets of fingers, except one set of fingers was going much slower than the other. And so what's that? What are you doing? And he said, Well, I was just testing my hands. I said, well, one set of fingers are significantly slower than the other. And he said, I said, What's that about? I said, How long has that been going on? He said, I've been Yeah, let's go on for a while. I said, Well, you've got a problem, and we need to talk about it. And he said, Oh well, no, we don't. I said, Oh yes, we do. And I said, when's your next doctor's appointment? And he said, Well, I said, we're going to the cardiologist tomorrow. I said, before we're there, we need to talk about that. I said, you I knew I couldn't mention anything about Ms. I said you got slipped disc somewhere, and it's affecting the upper part of your body. We need to go talk to somebody about the slip disc.

Natalie: 19:10

Okay, that's nice. I like that little it's not a white lie, because it still could be a true statement.

Unknown: 19:18

It's a neuro something somewhere, but it's not Ms, go talk to the cardiologist tomorrow. While we're there, we'll mention it and see what what he might think. Okay. He always had me go with him to his cardiology appointments because he had a mitral valve prolapse, and he's scared to death of his heart problems. So I always went with that. It was okay with that. So while we were there at the cardiologist appointment at the end of it being I worked at MCV. Been working there for many years. I had friends everywhere there, right? But I was in a high position at MCV, and I knew everybody. So how's there? Finished the cardiology appointment, and Dr V said, Everything okay? I said, everything's fine. With his heart, but he has this problem going on with his hands. He needs to see a neurosurgeon, because he might have a slipped disc, and he did not know. Need a Kristen neurosurgeon. I needed to get him into neurology somewhere. I said, Can you get an important move with Dr so? And said, he said, Oh, yeah. And Lynn sitting there, going, What? What? What are you doing? And he said, I don't need to say, Yeah, either. And I told that today the symptoms, I would say, Oh yeah, you need to go see so. And so he picked up a phone call and got an appointment for the next day. And when we walked out there, he says, What did you just do? I said, you need to see someone about the fingers, and we're going to take care of it now.

Natalie: 20:43

People just hit the time Donna, oh, he

Unknown: 20:46

was probably, at that point, he was probably his 40s.

Natalie: 20:51

Yeah, a friend of mine has MS, and she, she firmly believes she got first symptoms were in her 20s. Yeah, and, and, and it's interesting how you had to really kind of insert yourself to say it's time, because you've been watching this for eight years. You've been watching this kind of go on. And I can imagine, because I know how I feel with my husband, and I'm sure JJ feels with her husband the majority of her time is you just want to kill him a little bit. And like, I'm watching you do things that you're either not responding to your taking care of your medical needs. And I, I know I get frustrated when I can't like, when I'm like, You're not going to take care of this, but I don't like, I told my husband, you can't complain about aches and pains and do nothing about it. Yeah, like, I know that sounds really mean, but I'm really kind of a bootstrap social worker, so I don't know about how you felt about that.

Unknown: 21:50

Well, I knew his dad died when he was 49 and I knew he was in total denial and he wasn't going to do anything about it. And it was ridiculous. So we went to see the guy, the neurosurgeon guy. He listened to him, talked to him. He says, You got a mess. He said, Okay. I said. He says, it's just some pictures, I'm pretty sure, but let's do some pictures to confirm it. Set him up for the MRI. He said, You really need neurology. You don't need me. He said, I don't think this is a disc, but we'll look, we'll roll it out. Let's do the MS. He picked up right away on the denial piece, and he I'm looking at him, going, Yeah,

Natalie: 22:34

Dawn is winking for our listeners. I'm

Unknown: 22:36

saying behind. I'm saying behind. Glenn, going, Yeah, thumbs up and stuff. You know what's going on here? So we're setting up MRI. He put him over to the neurology called it happens to be down the hallway called in. The neurologist says, Hey, let me introduce you to Lynn. This is friend of Donna's. You know he's her husband, blah, blah, blah again, because I know everybody pull them in. Let's get it going. Thank God I work there and so. And in fact, I'm sure God set this all up, pull him in, set it all up, got the MRI going. And Dr the neurologist, set him up for a lumbar, a lumbar puncture. So we had it all set up. And Liz again, looking at me like he could shoot nails at me. So we set it up, got the MRI set up, got the lumbar puncture set up, and was right at the time of our annual anniversary trip. Got it all set up, and we had the lumbar puncture done, had the MRI done, went on our annual anniversary trip, on the annual anniversary trip. I mean, gosh, it was no way he could keep denying it. I don't you know, it was one of those elephant in the room trips, you know, yeah, who would go fishing by the end of the day, he was walking bent over at a 90 degree angle. He was so bad. I mean, he it is just no way in my mind you should deny it. And it was definitely he had to have known the results coming in. And I would say, you want to talk about it. You want to talk about what the results are going to be.

Natalie: 24:14

Nope. That's tough, though, because if you see your own parent pass late 40s, you feel like you have this, this thing in your body that is ultimately a death sentence. Yet I say this respectfully, we're all gonna die at some point. But the problem with chronic illness like MS, ALS, that sort of thing, Parkinson's even, is is there is no there's no cure. It's so much more real than I think in general,

Unknown: 24:45

he had such fear. His father went from a robust Carpenter, man who could do anything, play guitar like a like a Angel, to a man who became totally disabled and. Able to do anything at all, so depressed that he couldn't, didn't want to live and die of a urinary tract infection in front of him. Lynn could not even go say goodbye to him when he died.

Natalie: 25:14

Yeah, you know, that's part of it too, though, if you think about it, Donna, it's so many unresolved things and so and if you, and really, if you think about it, and this is, you know, I spoke to a friend of mine last night whose husband's been on hospice. He's had cancer for 15 years in his and her has, he's been on hospice for a year, and it's just there feels to be this similar, like, I don't want to acknowledge it. I don't want to do this. And as a caregiver, I'm just going to come back to you, I mean, because we were talking about how he's feeling, but I want to talk about how you're feeling during this time.

Unknown: 25:48

I knew it was coming. I knew he was going to get the news, and knew he was not going to accept it. I knew his philosophy was, if I accept that, I have MS, then I'm going to go be like my dad. And so I knew he was going to deny it, because for him, that would be a death sentence, yeah, and I knew he was not going to accept it, and I knew that once he got the news, it was all going to be on me, and I was angry that it was going to be that way, and I was hurt because he didn't trust me. So I had all those emotions, and it hurt because I knew what was going to happen too. I knew he was probably going to progress pretty quickly if he did have disease like his father. I was hopeful that they wouldn't have the same kind of MS his dad had, and that there might be a chance he might not go that bad, but I knew that chances are he was going to be like his dad. So had all these emotions going through, and I wanted to talk to him about it. I needed to talk to him about it. But Lynn was someone who withheld himself from me. He was so protective. He had been burned by his first wife a lot, and he didn't really trust he didn't really open up. He kept everything inside. So I really didn't have the ability to talk to him at all, and I was angry and hurt and had all those emotions going on inside. So I really felt totally alone when and knew I was going to be handling this by myself. Wow. And then Jamie, and while we were driving home, he had, MS,

Natalie: 27:34

wow, I'm going to take a break real quick, because I think this is the right spot for it. And then we're going to come back because at the same time, and I want to ask you about the kind of this similar timeframe, you get more care comes knocking at your door again, so we'll be right back.

Unknown: 27:53

Care forward is a technology platform that connects volunteers with seniors, the disabled and those with chronic or complex health conditions, offering support, like transportation, home visits and more details online@careforward.io All right, everybody, we are back here with Donna stag letter. There's a lot of care that is come upon you. Excuse me. And so we're at this point your husband, Lynn, has been diagnosed with MS that comes in when you're on your way back from your anniversary trip. You're still working full time, right? And Natalie said you have during this time as well. You've got another care that comes in for you, another care at layer. Episode, tell us a little bit about that. What's going on something several years after Liv was diagnosed. He had already developed quadriplegic. By that point, he was unable to do anything for himself. He was had neurogenic bowel bladder. He couldn't even move his hand to position in bed. So I was still working full time. He I had a person who came in to take care of him during the day, go into work during the day. Well, my mother developed cancer. I was talking to her one day on the phone, and she happened to casually mention that some symptoms that she was having and she was had seen the doctor and that she was expecting to get results back from a CT scan. And I said, You got what you your CT scan. I mean, you had what done. And as she was describing what was going on, I said, Send me that CT scan results that you were just telling me about. And I read it, and I said, I called the boys, my two brothers, and I said, Mom's going in to hear these results on Monday. She's got cancer. And I said, it's going to be bad news. And Larry, you need to be there with mom and dad when they

Natalie: 29:48

get it. So were you a long distance? So where'd your mom and dad live? And dad lived in Franklin County, so, and you were up in Richmond at the time, in

Unknown: 29:57

Richmond, and I was at least, it's. It takes me about four hours to get down there. Yeah, my brother, my brother, was the only person that was in 30 minutes close to him. You need to be with them, and I need to be on the phone when they get the results, because they're not going to understand what this is about. And I need to be able to be there to talk when they get it, because I'm the only ones going to understand what's going on. And you guys, this is what's going to happen, and this is what they're going to say. So but see the point? I got that information in the before they got to the doctor's office. I got on the phone to call master cancer. I knew the person who was in charge there the clinics, and I set up an appointment here with an oncologist, and got everything set up because I was bringing her here, they had totally missed the diagnosis. Her doctor down there. So I got someone set up here to see her, and got plans for her to come here. So when they got on the phone, he gave her the diagnosis and said, I'm sorry I missed it. I said, I thought to myself, yeah, you darn well did, and you should Wow, a long time ago, he totally, he totally blew it. And he was saying, well, we'll get something set up at Roanoke for you to go see somebody. And I popped in. I said, Nope. I said, y'all coming to me. I said, You need somebody who's going to help with the diagnosis and the interpretation and the care. I said, y'all are moving in with me.

Natalie: 31:24

So you didn't give your parents a choice. You were like, it was two for one too, because it was your mom and your dad. Like, you're coming to live with me. No questions asked. Good, try. That's it.

Unknown: 31:34

Yep. And Lynn is you're working full time. Let's go here. And Lynn is completely immobile. You're okay, yep, just catching everybody up here that we got a lot going on. Okay, yep, he's in the bed next door, and I have a spare room across the hall. Well, how is work going? Are your supervisors? Is everybody really understanding? Oh, Donna's having a hard time. Let's give her a break. Well, no, they just go along with it. I just keep going and they I just don't tell them, Okay, yeah, I tell my supervisor, hey, this is going on. I might be a little bit more out, but I'll get it. I'll get my work done.

Natalie: 32:14

Did you take intermittent FMLA by chance? I did. Yeah, because you work, and you worked. It's important. You worked in HR, yes, related to from a training, like you were a trainer?

Unknown: 32:26

No, well, I was the director of employee relations. I wrote, yeah, policy,

Natalie: 32:31

exactly. So I think this is important to understand. She knows the policies.

Unknown: 32:36

Yeah, I knew how it worked. I was willing to resolve the conflicts and did the complaints when they came in. I knew it, yeah, so I knew what rights I had.

Natalie: 32:47

Yeah. Do you think at the time, though, and this is not because this the realities doesn't matter. It could be VCU could be it's any employer in America, respectfully, because I think the employers that have caregiver benefits are typically by exception. At this point, they are not common. And would you say that the hospital system had a good caregiver or a robust caregiver benefit, or an environment or culture that allowed for people to be able to freely share that with flexibility and that sort of thing. No, I

Unknown: 33:23

was an exception. I was only allowed to do that because I did it. Yeah, it was only because I was a director and I knew how to manage it. Yeah, and no other employees would have been allowed to do that. Yeah, no, they were not open to a regular employee would never been allowed to do what I did.

Natalie: 33:44

Yeah, and I think that's important to Donna, because I feel the same way about myself and my position. Any other employee at the company I'd worked for would not have had that flexibility, because we just didn't have it built baked we didn't have it baked in and Jay was only Jay was fortunate, because she owned her own business, and so her being the boss now sometimes she had conflict with herself.

Unknown: 34:10

Yeah, we were a healthcare facility. It was for everybody to be on work at the time. They needed to be there. They didn't have that flexibility. They didn't have the staffing available for people to do what I did, only management level people could have that flexibility so regular staff wouldn't be able to do it only PR you, they would have had to have gone PRN and been flexible to be able to do something like that. Now we made accommodations for some to be able to do that flexibility. I helped people whenever I could. That was a one of my other caregiver attachment roles. I was very active in helping employees, whenever I could, to make accommodations with family issues. I was very active and my staff was very active in doing that.

Natalie: 34:58

I want to come back to that. I. I want to come back to that because I have a I want to when we do our sister questions, Jay, I want to come back to ask a question around advice that you would give employees to speaking to their employer because you were, because you were director of employee relations. And here's the thing, most people would think, Oh, you're in the healthcare field. Of course, they would be much more accommodating, because we understand we care. And the answer is, is no, do not assume. And so actually, I feel like at times we're worse. And so because, because we are trying to care for everybody except ourselves,

Unknown: 35:31

right? Absolutely, yeah. And plus, there's such a need to be there all the time, yeah.

Natalie: 35:37

So your mom and dad move into your home you are working and carrying your butt

Unknown: 35:45

off. Yep, yeah, my dad actually took care of my mom and I oversaw their care together. So whenever she'd have chemo, I would drive them downtown, because of course, he wouldn't know how to maneuver to get downtown, and I did all the interpretation. I would go to all the doctor's appointments with them, and I would be the medical person. I spoke medicine. Nobody else speaks medicine, so someone had to be there to interpret and decide what was going to be done. And so if her port a cath needed to be accessed, I would do the port de calf excess, you know, I would do the wound care stuff, so the big stuff I took care of, and otherwise, my dad did stuff, and we handled it that way. Until she had surgery. Everything was good. Cancer was good. She went home for a period of time, and then when she came back for her follow up. Cancer was back and did chemo for one one time, it knocked the heck out of her, and we all decided before she went back to the doctor's appointment for the second round of chemo, it was time to stop. And so we told the doctor at that point we weren't going to do any more. The doctor had come in to say, I don't want to do anymore. So we were all in agreement for her to go home on hospice. Wow, so that's what happened. She went home on hospice. Lynn was in the hospital. I had called to talk to her about how she was doing. I could tell by the phone call she was about to enter that stage where the cancer was going to block her intestine. And I called rest of the family and said, if y'all want to have one last hoorah with mom before she gets bad, do it this weekend, because she's about to have blockage. And they did. They got all together, had a picnic. Mom was doing good. Sarah had told me, she said mom had a really bad leg. When we were down there. It was really dark. Looks really bad. And I'm assuming she was getting a blockage in whatever one of her blood vessels at that time, because the next couple of days later, she fell, and when she did, she never woke up from that fall. I think she threw a clot at that point, and within 24 hours, she was dead.

Natalie: 38:08

Wow. And you're, you know, you've, you cared for your husband and all this going on with your your mom, and, you know, sometimes I think having knowledge can be a blessing and it can also be a curse. And I can imagine because you knew what was coming. I mean, you You even saw it, but you've, you almost have, like, a little foresight, kind of, in the sense of, like you just because of your education, and you're like, yeah, and you're, let me ask you this, you're a nurse, and you're used to dealing, and I know that you know you were in administration for many years, many moons, but you still were direct. You seem very even kill. Do you think Did you ever have moments where you were just like, I am not going to be able to take this. I'm just going to walk out, I'm just going to go out and dissociate for a while living my best Happy Land.

Unknown: 39:04

I totally disassociated most of my life. That's God gave me a gift early on, and it was disassociation. I had the ability the whole time I was taking care of Lynn, I went into a box. My emotions just went into a box, and it was the only way I managed. But most of the time I took care of Lynn, my emotions were in a box, and I didn't feel most of the time, because the whole time I was taking care of him, he could have died at any minute. Most of the time he was so sick, I ran an ICU out of my house. He had pulmonary problems where he would throw clot, pulmonary clots, and I would have to suction him immediately, or he would stop breathing. His pressure was such he had, you know, he was a quad so. His blood pressure go up to 220 over 110 and I'd have it was this reflection, and have stuff here where I had to bring his blood pressure down, or he would have his blood pressure drop so low, 60, over 40, and I had to bring it back up. So he would, you know, I had I see you here well.

Natalie: 40:20

And here's a question, though, Donna, I'm gonna let JJ talks in a second, because she tried to get in. It was super cute. Did you feel like a wife, at like a daughter? Because I hear you very medically. The terminology and the description is so clinical. Do you feel like you just went into your you put on your nursing caregiver hat with them, and that's why those emotions go into a box. If you really think about it, isn't that trained. It's almost like firefighters are trained not to run away from fire.

Unknown: 40:50

I became a first responder more than a wife. Yeah, yeah. There was very little time that became a wife once he became so sick, there was one time at night that I was a wife and when I would feed him dinner, then I was a wife, because they would watch TV together. And I got emotional with this, because after he died, I started bringing back my emotions and working on bringing back on my emotions, but we watched TV together every night, and he had to learn to watch Hallmark movies with me.

Natalie: 41:24

I love that.

Unknown: 41:28

Watch Hallmark movies, and he got to learn to like them, and I feed him dinner. And we spent an hour spent watching the Hallmark movies together. And that's that was our time

Natalie: 41:39

together. Oh, that's like, the precious time, yeah,

Unknown: 41:43

that was our time together, and that's the only time we had as husband and wife, because, yeah, yeah, he couldn't hug me. He couldn't we couldn't do anything, because he couldn't touch you know, and he was pretty isolated. We could talk, we could talk, but most of the time I was busy. I worked from seven o'clock in the morning to 2am every day, I was only gonna count constantly and and when, you know when I was sleeping, it was light sleep, because I was always listening for what for him to need something.

Natalie: 42:20

I already have the feeling I can already tell what JJ is about to ask.

Unknown: 42:24

I'm still, I'm listening. I'm like, No, my question got answered.

Natalie: 42:28

So well, no, but I'm thinking about Jay. I'm thinking about she's like, not sleeping, working 7am to 2am basically working all hours. Yeah, you taking care of yourself?

Unknown: 42:42

Donna, no, never, yeah. I told my doctor. My doctor told me I had to quit working in 2018 or I was going to kill myself. Wow, yeah. Did you quit? Yeah? Okay, making sure I was like, Yes, that was, that was the year, yeah, I retired in 2018 Wow.

Natalie: 43:01

And you know, but the reality is, is that you didn't retire. You stopped one job and you went whole hog more into the next,

Unknown: 43:12

because covid hit, and I had no caregiver said, yeah, there was nobody to hire,

Natalie: 43:19

yeah. And that's, I think you know. We know how covid affected the healthcare industry and all the workers that you know mandated that to stay and had to do all kinds of things. But we also know that so many people became caregivers and started self identify as caregivers during covid, and because people needed care, and that's when care, the word itself, in my opinion, really got popular, need for care. How do we care for one another and different, using technology differently. And so there was the silver lining of the of the pandemic that allowed us to really start seeing the roles of family caregivers.

Unknown: 43:57

Now for us, it didn't change life much. We were already isolated. We already ordered everything online. I had my back of my house was a warehouse. It was I had a room that was dedicated to supplies, because I couldn't run out. So I had a room full of supplies, catheter supplies, women's supplies. I had respiratory supplies. I had a warehouse. The delivery people came here almost every other day. So I had a house full of supplies. I had medical equipment for everything, you know. So, you know, when Lynn died, I got rid of $18,000 worth of supplies and equipment, wow.

Natalie: 44:38

And, you know, it's so common, it's that that caregivers have these items that can't be returned back. I mean, that's one of the reasons we started care forward, is to really be able to connect people who have items that are perfectly fine, gently used, that, you know, chucks. I always say, why are we throwing chucks away? You just washing on people. All you're going to do is pee on them. Everyday people. I know we're at at the end of our time. I didn't even bother with Sister questions, because, I mean, there's so much here. But here's the thing, I mean, we're going to go a little bit longer. I want to say, though, in 2022 you talked about how, you know, your dad moved in, and he, he had, he started developing congestive heart failure, and he's and he's 92 and he's and he lives with you. You're still caring for him because your mom has passed your you, your daughter, your daughter has as an RN, but she has special needs children, and I'm sure you probably help out a little here and there, and because why wouldn't you? You're you have a, really, a heart to care and so life now is different. And you're right. He's mobile and he's active, but he has, oh yeah,

Unknown: 45:51

yeah, I like that. He's a

Natalie: 45:52

spry 92 year old. He

Unknown: 45:54

is very like, this past week he was in the hospital, yeah, because he had a little episode of congestive heart failure. So you have to go take care of. But, yeah, I have caregivers to help me with him.

Natalie: 46:06

Yeah, yeah.

Unknown: 46:07

So my question, I guess, is, you've Lynn, passed, and at what point, where have you? At what point have you emotionally? You know, I know you've been this box where, what has happened with you, Donna. I mean, have you what are the ramifications that have occurred because of caregiving, like, where is Donna? For the last two years, since he's passed, Donna's been trying to come out. I've saw a counselor because I had to work on it. I had to learn how to come out of the box. I had a lot of anger, because the last place where he was a patient essentially killed him because they didn't buy the right care for him, and they ignored everything I had to say about him, and did not provide him the adequate care he should have had. So they caused his death early, and I've got them before the board, and so it's not totally over yet, but I needed, I needed a lot to deal with. So I've taken a course in post traumatic stress syndrome. It's called reboot, and they helped me a lot. I've taken grief share. I needed that. I'm taking it again, because I still need to do it twice, because that's helping me to bring out some grief that I still need to deal with. I've got a counselor I'm taking I have a hired a personal trainer to help me deal with a lot of physical things that I've got going on. You weren't exercising when all this was going on. I didn't have any time. I know absolutely and having a lot of medical appointments, because I got a lot of medical conditions that are going on, I wasn't eating right, and because I wasn't eating right, had a lot of food sensitivities. I no longer have any digestive enzymes at all in my body. Wow. And I'm happy to help rebuild those suggestive enzymes. Wow, starting from scratch. So I've had a lot of medical problems created as a result of the time I devoted to taking care of him instead of taking care of me.

Natalie: 48:16

Yeah, I think, you know, it's, it's like both things can be true, and I think that's the hardest things for caregivers. I can tell from my own personal experience. I'm sure Jay would say, would echo and raise her hand, is that you get so focused on the other person, we really don't think about ourselves. And people are like, Oh, you're just saying you're selfless. And I'm like, No, it's not about being selfless. It is like when your brain only has so much space to think about all the things that need to be done. You do not typically come to the forefront. And honestly, even peeing becomes gets pushed back. You're like, oh, because women are notorious, and this is why we get UTIs. Is that we pee too fast. We don't wait to get it all out, as it are. And you know this, we don't eliminate the bladder all the way. Welcome to a UTI, ladies, but we don't pee when we need to pee.

Unknown: 49:06

I mean, Lynn could not move, and he would have times where he could not breathe, yeah? So you hold it, yeah, you wait, yeah, you put it off, yeah.

Natalie: 49:16

You know Donna. I know there are so many, and we're going to put these in the show notes, because Donna has a lot of resources and comments on like, breathe, be prepared to conduct research. You know, doctors don't know everything like and this is true, guys, I'm going to tell you, there's a reason we went for a second opinion. Had we not gone for a second opinion and made our way to New York, our life would be very, very different. So second opinions are your friend and you're right, yes and you're right, yes. You know Donna, I'm gonna tell me about and again. So many good nuggets in here. She's like, I mean, I'm gonna tell you right now. There's at least 10 that she gave us. Tell me about health care to home. Care. Tell me about the website.

Unknown: 50:02

Yes, I created a website, and it's it's an awesome resource. I really encourage people to look at it. One of my problems when I first, Linda, first got diagnosed, was trying to find resources, trying to figure out what to do. You would think I would know I'm an RN, but you don't. There's 1000s of things. The questions that you need to find out health care to Home Care is a website full of links to different resources. It's a way to link to different government resources, different community resources, just places that you go to find answers other things, but it's not just leaks. It's also, what do you do when you go home from the point of discharge? How do you think about getting in the front door? How do you figure out what to do? What materials do you do need to do? To do wound care? Because when home health comes to your house, they don't tell you what to do anymore. They've got paperwork to fill out. So they don't teach you anything anymore. Yeah, they do nothing for you anymore. So it's how to do things and links to show you on YouTube how to get it done, because they you can find anything on YouTube anymore if you know what the words are, but you don't know what words are anymore.

Natalie: 51:22

That's and that's true, Donna, yeah, it's knowing the right words. And we always say, I'm like, for caregivers. When you're searching for resources, put the word caregiver in there, and you will be shocked at what's comes up. But it's really hard, because, you know, Donna, there's so many things out there, and it's hard to know what to is a reliable resource. And I will tell you, when Donna and I met on the caregivers playbook, I went to her website, and Donna's website is on our resource list, so healthcare to home care, or home care.com is on our on our resource list, on our website, along with others. But I grabbed so many great resources from her website to even add into our Resource Guide. And that's the thing is, what are reliable, reputable sites that give you good information to help you be successful?

Unknown: 52:15

And I've also added something new to it recently. We just upgraded, we just opened it back up this past week is a a mission called compassion mission, yeah, and that is to, I'm going to be sending it out to churches in the area. Health care is now sending everybody home, yeah, sending everybody out before they're ready to heal. Churches usually know who those people are, and so I'm sending it out to churches and encouraging them to start compassion missions within their their churches. And what it is is to teach them how to learn how to connect to people in their churches, to help them find resources within their church, to help people, to help them identify who needs a ride to doctor's appointments. How to connect them to just checking in on their congregation, to see Are you okay? Are you doing all right? To even divorce families dads. Do you need to learn how to cook? Because you now are broken? I have broken family or caregivers? Do you need a caregiver support group? And here's where you can find one. And how to set up those little congregational things that you need within your own church. And I've set up different little programs for them to follow. Here's how you set up these programs in your church. Because you are the you're the new community. There are no communities anymore. There are single units now in families, and they're they don't have extended people to come help them. There are single family units, their grandmas and grandpas and houses by themselves, and the kids have gone off somewhere. Kids today don't feel unified. To come back to the families to take care of them. They've been taught to create boundaries and separate themselves from the families, to have boundaries, to take care of their own children, their own careers, and they don't owe anything back to their grandparents or their parents. They don't come to take care of them.

Natalie: 54:19

And I'll say this, and I am like, Girl, we could get on this we could get on this train all day, all day. Yes, we could. I will say this, that's one of the reasons, like I said, we started care forward, is it really is strangers become neighbors, weaving kindness into the fabric of our community. There is nothing in our society that says you are required to care for your parents, or you're required to care for your spouse, and you know, divorce rates are high and people who have complex and chronic illnesses, you know, you have people who are who siblings that don't want to care for, you know, a parent and that they've got a primary that does it all. And I think that's really important, that together. Takes the village, and we always like to say, in the village next door, to care for our community. And so I think, you know, I'm going to direct people. Go to the website. Go to confessions of reluctant caregiver. Pull our resource guide, because it's got lots of good stuff. Go to Donna. Go to healthcare, to homecare.com take a look at her resources as well. Because here's the thing, you can never have too many No. And we're all about cooperation. We cooperate with all kinds of people, Donna and so no issue with saying we are not the sole source of every all the knowledge, but we try really hard to give you as much as we can figure out, because connections,

Unknown: 55:39

connection Absolutely.

Natalie: 55:41

So you know what, Donna, I'm going to do, the last question, Jay, I'm going to let you take my last question since, oh my goodness, I'm so excited, you can take the last question,

Unknown: 55:51

Donna, what is your favorite guilty pleasure? The one thing that you do just for yourself, audio books.

Natalie: 56:03

Oh, audio books. Oh. I like those, any particular genre.

Unknown: 56:10

Yeah, Christian mysteries.

Natalie: 56:12

Ooh, unexpected. I was expecting Hallmark and a little bit of Julia Quinn.

Unknown: 56:22

I like mysteries. I like the who done it.

Natalie: 56:25

Oh, so you must like the hot Wait. Do you like the Hallmark mystery channel? Hallmark? You can sponsor us because, you know, hallmark is for caregivers. But Donna, do you like that? Do you subscribe? Because Hallmark, Hallmark mysteries is a special subscription, like I was joking that in you know, when MTV 40 years

Unknown: 56:40

ago, watch television anymore, because I don't sit down, but I believe

Natalie: 56:44

that, yeah, and hence the audio book. Yeah,

Unknown: 56:47

exactly. I can use the audio book while I'm doing other things. And I always have my phone on for audio books. And that's, that's what I used to do with Lynn. You know, while I was busy doing things for him, always listen to audio books, and it would take me away those mysteries. And so a lot of times the Christian mysteries would have a little bit of the romance stuff into them too. And so it always just kind of fit that kind of combination. And so I just really love that, you know, I'd really get into some kind of good story and try to figure out who was it that killed that person. I always have. I've always really liked a little bit of that police piece to things. I used to work a lot with the police department in my job, because I did a lot of investigative work when I was working, I can really miss doing that investigative, investigative piece.

Natalie: 57:44

You know, it makes perfect sense, because if you think about it, medicine is a mystery. And when you're trying to figure out what's wrong with people you are, you are ruling out and ruling in, but

Unknown: 57:54

in foreign relations, I did all the investigations.

Natalie: 57:58

Oh, so you are a mystery. Girl at heart. I think Donna's got an un like her next chapter. Literally, she's getting into mystery writing. I can totally feel it. This was so much fun, Donna, I we could talk. We're going to be besties forever, and it's okay if you don't want to be JJ, best friend, I get it. There's only enough room for me. I take up a lot of space. But since it's J J's birthday, I'll let her close us out for this one time out of 100 and some episodes, it's your birthday, Jay, and so you might as well thank everyone and close us out

Unknown: 58:33

all right. Well, thanks everyone for listening to this episode with John a stag letter, and until we confess again, we'll see you next time. Bye, bye, bye.

Natalie: 58:46

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 a 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. Bye. Kristen, 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 called. Copyrighted and no part can be reproduced without the express written consent of the sisterhood of care LLC, thank you for listening to the confessions of our reluctant caregiver podcast.