The Loving Struggle of Caregiving While Parenting: Stories of Hope with Jill

Have you ever wondered what it's like to care for a loved one with dementia while raising you kids? Join us as Jill Pietroburgo shares her heartwarming journey of caring for her mother and raising her children. Jill, an early childhood special education and co-founder of Eagles Wings Ministry, gracefully and lovingly navigates the complexities of dementia caregiving. She offers a unique perspective on the challenges and successes of this journey. 

Jill's story takes us from the onset of her mother's illness, through the difficulties of finding suitable care, and ultimately, her mother's passing. She shares emotional moments, like helping her mother say goodbye to her older sister, and talks about the different, sometimes surprising, aspects of caregiving. But it's not all challenges and heartache; Jill explores how caregiving can serve as an expression of Christ's love, and the importance of teaching children to love and respect their aging grandparents.

Beyond just sharing her personal experiences, Jill provides guidance and hope for fellow caregivers. She shares about her first children's book- a tool for parents helping their young children understand dementia and her contribution to Content Magazine's autumn 2023 edition. Whether you are a caregiver or know someone who is, this episode provides valuable insights for navigating the challenging, yet fulfilling journey of caring for someone with dementia. 

Chapters

• 0:03 Caring for a Loved One With Dementia
• 10:59 Caregiving Had to Change
• 19:18 God Showed Himself Through Other's Support
• 22:10 Interactions With Aging Loved Ones
• 27:55 Caregiver Stories and Encouragement

Transcript

 [00:00:00] Rayna Neises: This is Rayna Neises with the Season of Caring Podcast, where we share Stories of hope for living content, loving well, and caring without regrets. We like to share stories of hope to help you break through the busy-ness and loneliness of caregiving to find God, even in the midst of this season. Today's interview is with a new friend named Jill. And since our interview Jill's mom has passed away. So I wanted to take a moment to just honor her mom and to let Jill know that we're thinking about her and praying for her. As she enters this new season of life. Thank you, Jill, for sharing a little bit about your mom with us, and we just pray that you and your family are doing well. 

So let me introduce you to Jill Pietro burgo Jill is the adopted daughter of Bonnie Sullivan who has been diagnosed with dementia. Jill and her husband Phil, have three grown children. Jesse, who is married to Maddie , Grace who is married to Malachi and Sam, who is currently crazy about [00:01:00] coyote hunting 

 Jill has spent her career working with people with disabilities from infants to adults. She currently works as an early childhood special education teacher in West Plains, Missouri. Jill and her husband Co-founded a nonprofit called Eagles Wings Ministry. Eagles Wings provides a short-term rental home for pastors and missionaries to have an affordable place to stay for rest and renewal. Recently, Jill published her first children's book called, sometimes Grandma Calls Me Jean. This book was written for parents to begin to start the conversation about dementia with their young children. The book also includes tips for parents to support children who have loved ones with dementia. Welcome, Jill. I'm so glad to have you here today. 

Jill Pietroburgo: Thank you, Rayna. Thanks for having me. 

Rayna Neises: I'd like to start off and have you introduce your loved one to the audience. So tell us a little bit about your mom and what caregiving looks like for you at this point. 

Jill Pietroburgo: My mom is currently, she's about to have a birthday. October [00:02:00] 21st actually is her birthday, and she's going to be 92. 

Rayna Neises: Wow. 

Jill Pietroburgo: Our caregiving actually really started with my father and my family lived in St. Louis, Missouri at the time where my husband's family lives. 

But my parents are older and , my dad was starting to decline and we knew we needed to get back closer to my parents. So we kind of had to make that decision. And it wasn't easy, like my husband actually was, a principal and so it's kind of hard to break into a territory where people don't, you know, I grew up here so people knew me in West Plains, but still, you would think, oh, like a city boy, but schools can be kind of protective. So it, it literally took us a couple of years to actually . get back, which is now home um, down here. So we got here in 2009 and help, take care of my dad with my [00:03:00] mom. And even then my dad would say things about my mom, like, oh, she can't remember this, or She can't do this, or I'm so frustrated. 

So even back then, there was things going on and he was very concerned because he had congestive heart failure which is what he died from. But he was very concerned about like, make sure you know you're gonna take care of mom. 'cause he knew .But his illness kind of over, when you have two at one time, really. And she wasn't . So far along that we needed to give her so much attention, but I think we didn't see everything because we were paying so much attention to him. So I think we were missing things as well. 

 When we moved back, we built them a little house, right? We actually took over their house because they said it was too big, but it, it is not a big house. It's like a little 30 bedroom ranch. But, you know, to two people, I guess they felt like it was too big. And so we literally had a little cottage that we built, [00:04:00] one bedroom, bath, and it's right next door. And we just thought we would just have this perfect way of taking care of our parents. 

That's not how the story ends up, but that was the dream. That's what we wanted. And so after my dad's death, my mom, you know, when you've been with somebody that long and it's just natural, you're gonna get depressed 

Rayna Neises: Mm-Hmm. 

Jill Pietroburgo: lonely. Even though we were there, my kids were there, and I forgot to mention, so in the beginning, they were like seven, 10, and 12 were their ages. So they've kind of grown up like as care, care children in this whole thing 

Rayna Neises: Yeah. 

Jill Pietroburgo: long time. 

Rayna Neises: It's been a part of their life. Mm-Hmm. 

Jill Pietroburgo: I was just thinking about that the other day when I wrote down the age. I was like, wow. Like that is a really long time to be a part of that. Even in that, here's the kids here, you would think, why would you be lonely? But what we noticed was she . She was in these women's groups, she was [00:05:00] in church, she was doing all these things. And then she kind of stopped doing them. And, and then in later years she began, what really began to kind of come forth was her hallucinations. And it kind of started with odd behavior like, she would call these men and wanna go over to their homes, or she began to think she was getting married and she would get a suitcase out and pack her bag almost every day. And this kind of happened after my daughter got married and she would put on her on the dress she wore at my daughter's wedding and she would pack her suitcase and she would kind of scurry around the house getting things and she'd say, he's coming to get me, he's coming to get me. And of course he wasn't coming to get her. And so then we had to like figure out how is this gonna, you know, like we gonna pretend he calls and, sorry, he can't [00:06:00] make it like, . but then it just kind of other things like she would see Superman flying outside or spaceships in the sky and, she began to run out of the house, which I know lots of people kind of can have those problems. And we had to think of ways to keep her, constantly keep her safe because she 

Rayna Neises: Yeah. 

Jill Pietroburgo: um, kind of mentally, able to have stability and we took her to the neurologist. We did all the, the things that you do. And the, one of the problems was that you don't know exactly what to do, but we ended up having to take her to not in our town, but in a, a neighboring town. They have a geriatric psychiatric hospital. 

That's really what kind of helped her the most. And what they did was keep her for extended period of time where they could kind of watch her, watch her behavior, see her aggression, see the things she was doing, and then [00:07:00] kind of stabilize her on the best medicines that they, they could get for her. 

 And so from there we just knew we could not . Like, keep her safe any longer. It was out, out, of our hands. Like we just , we, this is not what I wanted. 'cause I just told you we built this beautiful, a we, you know, we thought this is gonna be the perfect thing, but sometimes it doesn't. 

The 

Rayna Neises: Yep. You just never know. 

Jill Pietroburgo: way you think, you know? 

And, and so we felt like actually the most loving thing we could do was to give her better care , because under our watch, she thought we were poisoning her so she wouldn't 

eat. She wouldn't, we couldn't hardly give her medicines, so just, it wasn't working. so from the hospital, we were able to kind of say, the doctors need you to go, so it wasn't like we were sending, 

Rayna Neises: That makes it a lot easier. Mm-Hmm. 

Jill Pietroburgo: Yeah, so she's [00:08:00] been, um, that was in 2019, so right before the, you know, what the covid, 

Rayna Neises: Mm. 

Yeah. 

Jill Pietroburgo: so it, it looked like this beautiful thing because before Covid, because I, I had said to myself, I didn't wanna make that decision. I mean, nobody wants to necessarily have to do that. But I told God that, I can't do this, you know, on my own with even with my husband and my children, 

Rayna Neises: Sure. 

Yeah. 

Jill Pietroburgo: we can't keep doing this. 

But I'm also like, I'm not using this as a dumping ground. I'm still gonna be there every day and I'm gonna take her home every day. there's times I can't, but that's . What I did, i, and so during it, it just looked like it was working beautifully because she, you know, I'd be at work then I'd pick her up and then she'd come home [00:09:00] and we'd have dinner and she could sit outside. 

I mean, all these things, she can't, you know, she doesn't, isn't mobile anymore. But at the time, like, she could even, back then, I even took her to her own house 'cause there was no one in there. So 

Rayna Neises: Mm-Hmm. 

Jill Pietroburgo: Hang out at her house. And that was kind of scary in the beginning. 'cause you didn't know, like, is she gonna, like, I'm not leaving or, 

Rayna Neises: Right. 

Jill Pietroburgo: food or, but she never did. And I don't, I don't really know why, but I was like, okay, yes, I'll take it. 

Rayna Neises: Yay. 

Jill Pietroburgo: did, you know? 'cause I was like, gosh, I don't wanna not bring her. 

Rayna Neises: Mm-Hmm. 

Jill Pietroburgo: So, but then Covid came and then it was like talking in the window, 

Rayna Neises: mm. 

Jill Pietroburgo: But you can see that image in my book. That's one of the pictures. And I don't necessarily say it's COVID, but it just, I almost like get so sad when I see that picture. 

Rayna Neises: Mm-Hmm. 

Jill Pietroburgo: so real. I mean, 

Rayna Neises: Yeah. 

Jill Pietroburgo: that experience, and I know your listeners, there's [00:10:00] gonna be a lot of people who have walked through that and there's your person trapped in a room, you know? They don't understand. 

Like I definitely saw her, we see our loved one decline and we can't, we don't know what to do, you know, to 

Rayna Neises: Yeah. 

Jill Pietroburgo: help with that. But, but anyway, she's, she's still there and I shared what, she's still there with COVID today. She, 

I shared with you that she, just today she got a COVID diagnosis and they're checking her for some pneumonia. But, so that's where I was this afternoon, but, so that's kind of our, a 

Rayna Neises: That's hard. That's so, so many levels to it all. It's, it's such a difficult thing. It just made me think to myself, I think one thing we need to hear is just because it's hard doesn't mean we're doing it wrong. 

Jill Pietroburgo: Yeah. 

Rayna Neises: 'cause sometimes we do feel like that, but it is hard. And so thank you for sharing. [00:11:00] I think it's beautiful that you're able to, to build the house and that they were there for a season and so many times we think, okay, this is it. And it's not forever. It's just this is it for now and then there's time for it next season. 

Jill Pietroburgo: Yeah. 

Rayna Neises: so do you have a favorite story that you'd like to share about caregiving? 

Jill Pietroburgo: Well it's kind of a sad story in some ways, well, in a lot of ways, but, so I'm now at my season of having lost all my aunts and 

uncles and makes me, sorry. Makes me tear up to think about it because, I was fortunate to have just a beautiful aunts and uncles and, you have those memories of like fourth of Julys and eating the watermelon and making homemade ice cream and, you know, just being the kid. 

And, that's all gone. Like, it's, you know, I can't see them anymore. We will one day, you know, they're 

all saved. Christians. And so we will one day see them [00:12:00] again. But, um, so my mom's middle sister, Jean, which is in why my book is called Sometimes Grandma Calls me Jean and Jean Is Her, because when my mom would get mad at me, she would call me Jean, she'd yell Jean instead of Jill. So I just thought that would be cute to, to use that. Then her and so she didn't get to go to that funeral because she just wasn't able and it was in Kansas City and there's just no way that she was gonna be able to go. Well then just like a month ago, her oldest sister passed away and she was like, I wanna say 96 if I'm remember remembering right, but 

And both very sweet, loving sisters. And so I took, I did take my mom to that [00:13:00] funeral and that day she just was very alert and aware and people were coming up to her and saying, hi, Ms. Bonnie, how are you? And she would say their name, and I was just like, 

Rayna Neises: Wow. 

Jill Pietroburgo: And so then at the funeral, you know how you have to, you go by to kind of say you're let see them. at The, and we were in, um, let's see. They usually start from the back, but so it was her turning. We went around and . I just kind of was losing it because, my aunt was so special to me and so I was really emotional myself and, and so I'm kind of like, okay, we probably better just go on. And my mom like grabs the casket 

and pulls herself. She's in a wheelchair and just yanks herself up to the casket and starts to [00:14:00] reach for her sister. 

Rayna Neises: Hmm. 

Jill Pietroburgo: I'm, you know, it's just. Yeah, I'm starting to cry even more. 'cause I'm like, whoa, she understands today. You know? 

Rayna Neises: Yeah. 

Jill Pietroburgo: there's so many moments. I've, she's been to a wedding, she's been to other funerals and she's just like, nothing's there. 

She's not processing anything. But like that day, God just gifted her with saying goodbye to her sister. You know? And so it was just. This precious gift. And that's really why I was crying even more. 'cause I'm like, oh, you know what? What mercy, even in the midst of all this, other things of this disease, you know, that he would be so kind in that moment to allow her to do that. So it's kind of a, hard story, but it's one I 

definitely remember 

Rayna Neises: Yeah, it's hard because there are those really lucid moments and [00:15:00] like really, I mean, that's amazing how many people she recognized and, and like you said, she knew, she knew what was in there. She knew her sister was in there. All of those things. It, it really is amazing how The brain works. We just, there's so much we don't know. So it's beautiful to be able to share that. And I think it also is that much more encouraging to just know, we don't know from day to day what it's gonna be like. So, but they're always there. Sometimes they can reach out and communicate it, sometimes they can't. So it's important to, to acknowledge that. What would you say is one thing that surprised you most about caregiving? been going on, like you said, for a long time. For you, anything in particular? 

Jill Pietroburgo: Yeah, two different kinds of caregiving. 'cause my dad was really with it, so 

Rayna Neises: Mm-Hmm. 

Jill Pietroburgo: mentally it was more his physical that we were helping with, I mean, his legs got giant with just. The water weight and all [00:16:00] that. And so his was definitely more the physical side of helping him with those kind of things. 

 And now my mom, she's kind of got more like a Lewy body type dementia, so she's losing physical and the mental thing, but. Being a early childhood special educator, like my whole, or just being in the, I wasn't always in early childhood. I've, I've worked in mental health, I've worked with, people with disabilities ever since I graduated from college, so over 30 years, but, so I think I thought I would be better at it. 

And because I've helped other people and, in some caregiving types of ways, but I didn't realize how challenging it would be. When you're the person 24 7 and you're trying to make decision and it's your loved one now that you're caregiving for and getting [00:17:00] frustrated because like. Wait, how do I do this? Like 

Rayna Neises: Mm-Hmm. 

Jill Pietroburgo: I think I was really surprised at that, but I think the other side of it is I became surprised at how much joy there is. And so there can be, it can be so hard and at the other end, like today, for instance, I found it. So joyful that she was eating this soup for me and she was taking these big drinks and, and I got to help her go to the bathroom, which, all these things sound crazy in a way to, to someone who doesn't walk it, 

Rayna Neises: Yes. Yes. 

Jill Pietroburgo: But the people who walk it, we can totally understand that like, of like being that person to . To show the love of Christ to 

Rayna Neises: Mm-Hmm. 

Jill Pietroburgo: else, you know? And, 

and I think that's what God calls us [00:18:00] to a deeper, level of, of living out the word, you know, to, love your neighbor, which happens to be my mom, you know? 

Rayna Neises: Right. yeah. 

And I think that it can be hard to hold both spaces, the joy and the struggle because it is harder than we think it's gonna be. It, I think it's always harder for us to care, for our loved ones. You can care for someone else and, and that's part of where I think having caregivers that aren't related are very helpful and very important because there are times when the hard stuff's just happening and they can walk in and do it so much easier because it's not emotional for them. I always say they have no history, whether it be good history or bad history, there's no history. There's just today, right now in this moment. And that's what makes caregiving easier for us as family members. If we can learn to just be right here and let go of the past and just be right here in the moment. I think that's what brings the joy is right there with your mom just now. It was, being able to give her the [00:19:00] nourishment that she needed and to help her in her needs and without Any of the other things from the past that could be good or bad . 

Jill Pietroburgo: right? 

Rayna Neises: yeah. 

So I know God shows up all the time, but you have one story you could share with us about how God showed up for you and your caregiving. 

Jill Pietroburgo: I think that God showed up to me through, definitely through the hands of others because they're definitely, as I shared, like we were many times at a loss. I just wrote for your Your catalog online that you do 

Rayna Neises: yeah, the content magazine. Mm-Hmm. 

Jill Pietroburgo: and, you know, talk about the weeds and, and that's what happens. 

 Things go aside because you can't, you can't do it all. And you know, one of the worst points for my mom was also my son's senior year and . I was going to have to miss, and he was really into soccer and I [00:20:00] was gonna have to miss every single game if I didn't figure out something, you know? 

And so, um, there were points where we, like, during the day, we were both still so we had hired, people to watch her during the day. And my husband would go in late to work, and then I would try to leave as early as I could from work and, and then we were having somebody in between. Well, we also then tried either my brother would come help or we'd hire somebody, or somebody from church would volunteer to come help. 

And so, things like that where people just showed you the love of Christ and . 

You know, maybe come mow our lawn, and give us a gift card and, you know, just take care of you unexpectedly with those kind of things so that, you might be able to, pay attention to somebody else in your family attention. 

And, so I think that's the way God showed up the most was just putting it on of other people, [00:21:00] um, to . 

Rayna Neises: That's beautiful. I love that. Yeah, just how they stepped into that without even asking, they just got really laid on their heart and they just moved into that. That's beautiful. So Jill, tell us a little bit about your book and then where they would be able to pick that up. 

Jill Pietroburgo: Oh, um, so my book is based Mom and, uh, the illustrator. Her name is Heidi Jean, and she's actually from Canada. And so the pictures are true to life of pictures of my mom that she's illustrated, and Heidi was just, was fabulous. And I, she would just say, send me, send me this picture. 

Send me one this angle. Send me, and then, you know, like, so the pictures are exactly the picture of that I've sent her. She's that detailed, that picture on the wall is . The same picture in the book, and how my mom's face [00:22:00] looks. I was just amazed at the last picture in the book where, you know, that dementia kind of stare that people can have in the blank. 

Look, I, she just captured it. buT the book reminds me a lot of you, about, seasons and so the book goes through . Different seasons. And my mom is changing. It goes from a spring to spring, and so she's changing throughout the book. And Grace, which is my daughter, is the other main character. 

 You'll see her kind of get a little bit bigger and she'll grow, but it's just kind of a little love story of, of this grandma's changing and dementia's taking its toll. , but the little girl continues to show her grandma love in simple ways. Like I, I think that's what I love about it the most, is like, it's not complicated. 

It's. a tissue, reading a, reading a book [00:23:00] with grandma or, you know, looking at a photo album. It's just these simple ways that we can show love, holding a hand or, and those kind of things. And then the whole back of the book is ways that parents can support a child, because 

Rayna Neises: Yes. 

Jill Pietroburgo: can forget that 

you're on the journey. 

you know, 

they're watching us and. . And one day we're gonna be old, so we wanna make 

sure we 

Rayna Neises: Definitely. 

Jill Pietroburgo: them, 

you know, we have to teach children, you know, we teach them how to read, how to write, how to do all these other things. But we also have to teach them how to, to love older individuals and how to honor you know them and how to respect them and how to, what do we do when they're sick or there's things going on. 

And so. . I Think we can, teaching is not just with your words. 

Rayna Neises: Mm-Hmm. 

Jill Pietroburgo: I think more of it is 

what we don't say , 

you know, more of it's our modeling or the look on our face. [00:24:00] So, you know, do we look like we're frustrated all the time? Or you know, do we ha are we showing joy? Are we showing, ways of, you know, because that teaches our children just so, ,the whole back of the book is just the ways that parents need to help support their child on the journey and how they can help them build empathy and encourage them and, and then there's one of my favorite parts is 'cause my husband and I love True Story movies, and so at the end of true Story movies are always like the pictures of the Real people. 

Rayna Neises: Real people. Yeah. 

Jill Pietroburgo: like, I love that part because I'm like, oh my gosh, there they're, you know. That's what my book is like too. So you see my mom, mom with real pictures with my kids and, and different like pictures in the story. The illustrations are also pictures in the back of the book. And so kids can look at that and try to find, , which And so I just love that part too. And, and also there's a emotions page, [00:25:00] because. I think that's important because be emotional, during, because grandma's, the grandma or the grandpa could be up and down 

on different days and, and you know, parents have to be aware of that. I know it's different if, if you've got a loved one that's actually in your home, that's gonna be different than if you're just going to visit and you can kind of choose the time a little bit better Or Or whatever, but, so those things would definitely have to be kind of worked out. But it's really about, I think a lot of a child, they're not going to know how to interact with a loved one. And so helping them have that positive interaction as much as you can, like what would be an activity they could do with that person that would be positive, instead of them just going, and then 

you don't know You know, okay, 

what, what am I gonna do? , 

you know, 

Rayna Neises: Yeah. 

Jill Pietroburgo: just kind of forward thinking always and preparing them and, and then that [00:26:00] builds a memory, oh yeah, I remember, you know, showing grandma those communication cards, and we went and visited and or what, the photo album or. Things like that. So I'm, I'm biased, of course. I think it's a beautiful, , beautiful story, but, um, I hope it does, you know, the whole point is just, I hope it people and, that they, can just feel the love of God through that. It wasn't like I was like desiring to write a book. 

I just, I literally felt God nudging me and giving me words. 

Rayna Neises: Yeah. 

Jill Pietroburgo: I, I wrote him down. What I, like literally one morning woke up and these words are just kind of like coming out in my head and I'm like, what am I, what do you want, Lord? What am I supposed to do with this? And, so that's, I just kept, I kept being obedient and 

just walking through it because I didn't know how to write a book. I didn't even know the first thing you know, and so it's. I Just watched YouTubes and , things [00:27:00] like that. But 

Rayna Neises: Well, and I love how it's kind of brought all of your experiences together with your education background. You've included so many great tips and activities that are educationally sound, as well as this journey of walking for so long with your parents and your mom as she's aged and watching your kids interact and being able to pick up those things that were really important. 

I think it's beautiful to be able to share your experience and God just Brought everything together for that, so I think it's amazing. 

So Jill, tell us how we can get a hold of a copy of your book, 

Jill Pietroburgo: Oh, so it is on Amazon so they can purchase on amazon.com and just, look up my really long name or look up. Uh, Sometimes Grandma Calls Me Jean. And 

Rayna Neises: and we'll have a link on the show notes page. 

Jill Pietroburgo: Yeah, and Barnes and Noble I think Carrie's. online as Well, 

Rayna Neises: Great. Well, thank you so much for sharing your story, sharing about your parents, and just your [00:28:00] caregiving journey, and just offering the encouragement of being another caregiver who's in the trenches. We appreciate 

that. 

Jill Pietroburgo: Thank you Rayna, for having me. 

Rayna Neises: Thank you for joining us today on A Season of Caring Podcast, where we share stories of hope from Jill. This episode has been brought to you by Content Magazine in which Jill has the article featured in the autumn edition of the 2023 magazine. Content Magazine is a quarterly online magazine that's available today to help you find God in the middle of your caregiving season, you can order your copy of Content at www.Contentmagazine.online. Are you interested in sponsoring an episode of A Seasonal Caring Podcast? Just reach out to Rayna@aseasonofcaring.com. I'd love to chat. A Season of Caring Podcast has been created to share stories of hope for living content loving well and caring without regrets if you have legal financial or medical questions be sure to consult your local professionals and take heart in your season of caring[00:29:00]