[00:00:00] JIll Pietroburgo:
Things in life can make us bitter or better. We can have a really bad attitude about. Having to care for this loved 1 or, our loved ones really messed up our routine and so our children are watching that are we showing that compassion? Are we, respecting and honoring our loved one? What's our tone of voice when we talk to people about our aging parent?
[00:00:26] Dori Durbin:
No parent wants to see their kids struggle. And yet when a grandparent has dementia, kids will naturally feel confused and scared. How can we guide our kids through this challenge with compassion and empathy? In this episode, Jill, a mom and special education teacher. And her husband, Phil, a children's minister share their children's book and suggestions from their family's journey with dementia. We cover insights about how to reduce the fears associated with change and the unknown. How to keep kids connected to their aging loved ones. How do we [00:01:00] preserve and make new memories with them as well?
Join us as Jill and Phil offer perspective and hope to families who are navigating dementia's effect on their family. Stay tuned for practical wisdom that you can start applying right now.
[00:01:15] Dori Durbin:
So Jill, when did you notice your mom was starting to develop dementia?
[00:01:20] JIll Pietroburgo:
We moved back to help my family. So it was in, we were living in St. Louis, Missouri. And we moved back in 2009 to West Plains where my family was living. And we did that because we knew we were going to need to help my parents during these aging years for them.
And my dad was already having some health issues. So I think we were seeing signs of my mom's dementia at that point, but my dad began to decline more rapidly. And I think his health took over our attention for my mom and she was doing a lot of the caregiving because we were having to go to work and we had our kids were like 7, And so we had very young children and so they very young had started in the caregiving, journey with starting with my dad.
[00:02:22] JIll Pietroburgo:
So after my dad passed, then we could give a little more attention to my mom. And even before he passed, he, he would, he approached me and he, he said, you're going to need to take care of your mom, I'm really worried about her and we were too, but there was just so much going on with him.
And, he was. Basically, in a chair, couldn't really get up anymore and, had to go on hospice and that whole thing. After he passed, then things began to decline pretty rapidly after that. That's when we first started to notice.
[00:03:00] Dori Durbin:
So if somebody was trying to wonder if they needed to worry about an aging parent, was there something that really triggered you to notice that was an issue?
[00:03:03] JIll Pietroburgo: I think, everybody's do a little bit different symptoms. I think for her was, the forgetfulness or not being able to do the books like she used to, and she would start to spend hours, doing her checkbook and then she could no longer do it. Her cooking, the kids still tease about . The last time she made her famous potatoes, the kids love, it tasted like just salt. Like it wasn't even any potatoes in here, but. So those little things begin to show signs there's more here going on.
[00:03:40] Dori Durbin:
Yeah, and so obviously you probably started to have some fears about what you might anticipate happening, what is it that you're going to expect to happen? What does this look like? Was that the case for you? You started to have some of those fears?
[00:03:56] Jill Pietroburgo:
We're a Christian family. And my goal is always to respond out of my faith. And there's a quote that actually says, courage is not absence of fear, but is acting despite our fear. And I just did not want, dementia to win in her life. And so we really fought to, to learn about how to battle this and, praying as a family and just seeking support and trying to, trying to figure this out, what's going to be best for my mom. And in the beginning, things were hard, gradually, she began to hallucinate.
She began to run out of the house. She began to think we're poisoning her and wouldn't eat, wouldn't take her medications. So things began to get out of control, pretty quickly.
[00:04:53] Dori Durbin:
How did you handle that with your kids? Because I know as just the kid yourself, you probably were trying to keep your emotions intact, but it's even more important when you have kids watching you react to the situation , right?
[00:05:06] JIll Pietroburgo:
By that time with my mom. My kids were in college, like my two oldest. And so my other one was in high school, but my children had already watched us. Like I said, my dad we moved there in 2009, he passed away in 2014. So they had already been a part of the care team. They'd already been with my dad, my oldest would, there's times he had to help us get my dad off the floor, or he had to help us, the kids had to help us walk my dad or bring him food.
[00:05:43] JIll Pietroburgo:
And so they already knew what it was like to walk. With, a grandparent during those older years. And so I think for them, it's just, that's what you do as a family. And [00:06:00] I don't think it was as fearful for them because they'd already, seen we're gonna, we're gonna do this. We're gonna love our parents. And this is why we moved here to be a family and take care of Our loved ones and honor them even during this time my dad, before he would spend time with them and he'd take them hunting. He showed them how to shoot a gun and clean a gun and fix engines and just all those things.
[00:06:28] JIll Pietroburgo: And he could no longer do those special things with them, his mind was still intact. My oldest would be outside the door and he'd say. Now, grandpa, how do I do this again? And my dad be yelling back just do this. He taught him how to clean his first deer from a chair. And when he passed away, my son said, I just lost my best friend. And so we can want to shield our kids from some of those beautiful things that actually could happen out of, being a care team member. Being a part of that.
[00:07:01] Dori Durbin:
So no, it's interesting. I read the forward and Phil wrote this, right? Phil? Yes. Yes, and I was almost brought to tears just by reading the forward because you were talking about memories and what really hit me was Memories from before and memories that could come so do you want to talk a little bit about making those memories?
[00:07:24] Phil Pietroburgo: Sure memories I think are always valuable to preserve and to treasure. I think about it from the standpoint of the Bible that memories were preserved and written down and passed along to help us build our faith so that we would recall things that we'd gone through before, so that we'd recall God's intervention, His rescue at times when we couldn't get out of it ourselves.
And so I think memories in that way are of the same importance with our loved ones . I think it's really valuable to have time as a family that you just incorporate naturally where you talk about things that you did years ago or, within the past year. And you recall those special times you spent as a family, you recall those special times with your older loved ones.
[00:08:18] Phil Pietroburgo:
You even go back with them and talk about their memories so that the kids can see the pattern of sacrifice of how they have loved each other, how they've loved us, forward, even before we came along, how they were making sacrifices for the family. And I think that's critical for kids. To to cultivate within them that gratitude for what their loved ones have done to pave the way for them. When you start to venture through dementia as parents with kids you can take that attitude of thankfulness and you can look at this now. This is an opportunity. For us to love grandpa or grandma or great grandma and return some of those wonderful acts of love that they did for us.
[00:09:06] Phil Pietroburgo: So when you're looking at photo albums, your attitude can shift when you talk with your kids from I regret that grandma's no longer here in this way to do this. It can shift to, I'm so thankful for the times that, that grandma loved me so dearly, so deeply, and I can carry that into fueling my desire to make new memories to make her time here with us as best as possible and to be able to remember not so much the pain and the frustration of the dementia, but the times we spent with grandma and how we got to serve her.
[00:09:49] Dori Durbin:
That's the thing that really struck me with your book, Jill, is, even the cover, sometimes grandma calls me Jean. At first I was like, why is she calling her Jean? Oh, the dementia. And then just the fact that it didn't, it wasn't something that made her upset.
As I, looked through the book I really resonated with the fact that the memories that were being made were appreciated in the past. Just like you said, though, but also being made then it wasn't like grandma is in a nursing home, so everything stops and there aren't new memories that could be made with grandma if they can continue. And that really impressed me.
[00:10:25] Dori Durbin:
All right, Jill, I have to ask you, you probably could have written an adult book. That was like, Oh, it was a how to book or an informational book, but instead you chose to write a children's book. So I'm super curious why you went that route.
[00:10:40] JIll Pietroburgo:
I wasn't even planning to write a book wasn't really I definitely get my feelings out by writing and in the middle of. My mom hallucinating and it was, very challenging and we were trying to also parent our last child, and attend things and we're having to get babysitters for grandma and all that kind of thing, but I just started, writing, getting my thoughts down, but never really thinking I'm going to write any kind of book and it wasn't until just 1 morning I just. Was like awake and asleep at the same time.
[00:11:17] JIll Pietroburgo:
And these words were just going through my mind. And I just wrote them down. Cause I'm like, I'm going to forget this in 10 minutes. So I better just write this down and just started praying over that. Like, why did these words come in my head? What am I supposed to do something like this with, do something with these words. And, I've had experiences in my life that, I felt like God has spoke to me and felt to be obedient in it. And I've, I felt like this was one of those times that I was to just step out in faith, take a first step and see where it might take me.
[00:12:01] Dori Durbin:
Yeah. Yeah. So the listeners have no idea what this is about. I think maybe we should back up. Okay. First of all that the main character's name is Grace, which I love, but tell them about what the book is really about.
[00:12:13] Jill Pietroburgo:
The book is about a little girl named Grace and her grandma has gone to a care home and the story goes. Follow season so that it starts in a spring and then it goes into the summer and then the fall and the winter and then it ends in spring. So the 1st and the last picture are basically the same. But over the journey of the book, grandma changing and you see the different. Holidays and just the passing of time was what we were trying to show through the illustrations and Heidi Jean does an excellent job showing now. But despite grandma changing from, she's walking, looking somewhat normal [00:13:00] in the 1st picture.
[00:13:01] JIll Pietroburgo: And then you'll see grandma with a cane, just slightly, I don't even know if you would catch all these things on the first reading and then you'll see grandma with her walker and her hair is beginning to even change colors and things like that. And then you see grandma in a wheelchair, and at the end of the picture, there's a very distinct difference. Heidi really caught the dementia look very well and people who have walked this would know the stare the look and so grace though throughout the story. She just continues to. Love her grandmother and sees her grandmother as a person. She doesn't treat her grandmother. She's changed or she's different.
[00:13:45] JIll Pietroburgo: She's just learned to love her as her grandmother, and so the story just shows different ways of grace. Just. Continuing to do activities with her grandmother spend time looking through a photo album with her grandmother and the story [00:14:00] lines. Very simple. I, I'm a teacher. I work with. In early childhood, special ed, and I read stories every single day and I'm always like, gosh, I wish these were simpler.: I wish that they weren't so wordy. So I think that's why my books that way. It's not. Not as wordy, but, I feel like it's a beautiful story.
[00:14:20] Dori Durbin:
It's very powerful. And I think sometimes that simplicity really shows the power of a book. What hit me too is that it seems like it could have worked on any level. You could have a middle schooler read this and still get something out of it. You could have a three or four year old who is going to understand bits and pieces. They're going to pick up on. A lot of those pieces that you put in. It's a book that a family could sit down and read and reread, especially with that intentional insertion of the changing of grandma and the seasons.
[00:14:48] Dori Durbin:
There's a lot in there that they could really pay attention to. It's very well done. And I don't say that very often. So yeah, I mentioned this in the beginning, it has these resources in the back and when I first went through and I flipped through it really fast and I was like, Oh, I wonder what these are.
[00:15:07] Dori Durbin: And I went back again. I was like, these are gold because not only does it say you could be doing things with grandma and keeping active and making memories if actually you provide. Very specific examples of things that you could be doing. And what really struck me was they were simple enough that probably somebody with dementia at almost any of the stages could do those things. So maybe you could give the listeners like a couple ideas of some of those activities that you included that they could do together.
[00:15:37] JIll Pietroburgo:
Yeah, so I really appreciate that because I did work really hard on that just thinking about it. Because that is my heart like I want people to see that their mind still wants to be engaged and even though my mom seemed, you know If you didn't interact with her she's not going to speak that much like you might she might say a word or two during the day, but people could just go by her and just think she, was just sitting there and never going to say anything.
[00:16:10] JIll Pietroburgo: But I would show her little picture cards and they're just cards from like a matching game. And she could say, cat, dog, shoe. And it was a game for me Gosh, how many can we get today? Like it, it just made it fun. And so I just did all kinds of activities with her like that and just stimulated her brain because they need that. And so a lot of the suggestions I made in the book is just, what could your child do? What could you do, even as the adult to begin stimulating their brain and making the visit because. You might have a loved one like my mom who isn't communicating that much, but how could we get it out of them? What are some other things that we did?
[00:16:58] Phil Pietroburgo:
One thing I was thinking to is those simple ones can often be the best, but you can even take some of the things that she used to do, like her favorite game, Jill's Moms, was Parcheesi. That game is complex. Have you played that before, Dori?
[00:17:16] Dori Durbin:
I have. It's been a long time, but it is complex.
[00:17:19] Phil Pietroburgo:
Yeah, a lot of counting, a lot of strategy setting blocks, or letting people pass through, or whatever. But, She obviously couldn't play that game in full by herself anymore, but we could still gather around the table and we could let her roll the dice and the kids or us make the move for her. And what was fun and really meaningful is we would still get into it just like grandma used to because she was quite a game player. And if we would send somebody home, we would cheer, with revenge if they had gotten us before, and she would giggle. Just like she used to when she sent somebody home, so she still got it.
[00:18:01] Phil Pietroburgo:
We could still get back into the mode of that game. And yeah, I think you have to always prepare it so that it's something they can engage in. But sometimes that's taking something you used to do and just adapting it.
[00:18:14] Dori Durbin:
Yeah, great example. I would never thought to try that, and I think you have to maybe try things and see if it's going to work for them, or if it's something that like you said, you can just modify and they're still going to enjoy. So finding that would be amazing. Definitely. Yeah.
[00:18:32] Dori Durbin:
What about for people who have kids that maybe they haven't had that background that your kids had of being brought up as caregivers? Let's say this happened and it happened suddenly. How do I as a parent prepare my kids even just to go to the nursing home, much less? Know about what's coming up next.
[00:18:52] JIll Pietroburgo:
Yeah, and, even as the adult, you might not realize what's coming up [00:19:00] next. So it is a hard thing to prepare even though you're not, because you're feeling probably like you're not prepared yourself and then realizing you have children, and I think that's probably the 1st thing is, realizing you have children watching, and that I'm going to be setting an example here and so so the 1st thing I would say is to probably educate start to educate yourself so you can begin to think about what might be coming and, I wouldn't say I was good at that in the beginning because I we're talking about it.
[00:19:39] JIll Pietroburgo: What is happening? What does this mean? I'm trying to figure it out now. Just yesterday I had a friend reach out to me and says, hey, I, I know this person, they don't know what to do. Their wife thinks he thinks his wife has some kind of dementia. And I'm able to [00:20:00] now, assist people and help people a little bit on as they're starting their journey, but. It took me listening to lots of podcasts, reading lots of articles, educating myself. What, there's lots of things on YouTube of people. I didn't really know of any of that before, but it takes that one person or somebody like this, hopefully people will listen to this today and Oh, I didn't know that either.
[00:20:29] JIll Pietroburgo: I'm going to start, educating myself, and so I think I definitely would begin there and then you're better able to start to prepare your children , and you definitely don't want to, bring fear or anxiety of things that aren't going to happen, but you also want to be as honest as you can of the situation that you have as a family.
[00:20:52] Dori Durbin:
I think sometimes people don't want to educate because they're afraid of finding out what's coming and it sounds like it would benefit them to just face it and educate themselves and not ignore the fear, obviously but accept that it's scary and then just look for what's next. Because I do think the natural inclination is for people to withdraw and say I don't, I just don't want to know.
[00:21:16] JIll Pietroburgo:
Yeah, I definitely think, that needs to be age appropriate with how you're having those conversations. With kids, obviously you're gonna talk a little differently to a 3-year-old than a 15-year-old, and so I think most parents hopefully get that and under understand that. But definitely.
[00:21:35] Dori Durbin: Now the other thing that really impressed me too was that you focused also on empathizing with the aging adult. I think sometimes, especially with dementia., they may not be able to articulate what they're feeling, but you can, see from their face, from their body posture. How can we help kids to be more alert to how people are feeling if they can't tell us?
[00:21:58] Jill Pietroburgo:
So in my book, I actually give some activities that if they wanted to do some of these, they definitely could. I used to work with just strictly people with autism. And so when we would do trainings with families, we would do these kind of set up of the room with different activities that would help simulate what your child might be feeling. And so when I was writing the book, I was like researching and seeing that there are some people who do similar things with dementia. So I thought it would be really good to include some of those. So some of them are simple putting Vaseline on some sunglasses too.
[00:22:42] JIll Pietroburgo: Because like my mom, she had macular degeneration, and so she couldn't see very good. And so that would help them understand what it might be like to not have really good vision. Or you can put a pebble in their shoe to, what does it feel like to have neuropathy? Or put gloves on their hands and ask them to do a task, like button your jacket or your shirt or zip something and, what does this feel like for grandma or grandpa who may have arthritis or lots of swelling? So there's those kind of activities that, that I have in the book at the back that they can help to do that.
[00:23:23] Dori Durbin: I think that would help some adults too, obviously. Yeah, because you, unless you have experienced it, you really don't know. And let's say you're trying to go somewhere and they're trying to button up their shirt and you don't realize how much of a struggle that is for them or the same thing with the vision, why can't you see this you've your glasses on, and, but you can't. So I think that would probably benefit the whole family, honestly, Jill.
[00:23:45] JIll Pietroburgo: Yeah.
[00:23:46] Dori Durbin: Yeah. You also had a face chart and it had different expressions. Can you talk a little bit about that as well?
[00:23:54] JIll Pietroburgo: Yeah. So in the book I wanted to have emotional chart [00:24:00] because there are going to be times when maybe things aren't a perfect visit. And grandma or grandpa aren't doing great or, the loved one.
[00:24:09] JIll Pietroburgo:
And so it's almost like a book you could carry with you. In the emotional chart, there's, the, just your typical things, happy, sad. Surprised, mad, because you're going to have all different kinds of feelings from those experiences. And this comes out of, working in early childhood special ed, I know how much visuals can really help children.
[00:24:31] JIll Pietroburgo:
And I just really felt strongly I want this to be in my book because I want a 3 year old to be able to read this story as well as an adult. The parents can take that and talk about how did you feel about seeing grandma and if they don't have words a lot of kids that I work with, they don't have sometimes don't have speech and language skills yet and they can still point to a picture and tell you how they're feeling.
[00:24:57] Dori Durbin:
Yeah, it made me think a lot of the stages of grief too in that sense, I think you are going through some of that when this is happening. And so being able to articulate where you are, it's a simple, really visual piece in there that I thought was really smart to put in.
[00:25:13] Jill Pietroburgo:
Thank you. Yeah. Okay. Let me ask you, Phil, I've kept you off the hot seat for a little while. From your perspective as a children's minister, what would be some advice that you would give parents about just entering into the season of their life? And maybe two things, because I'm going to have to ask Jill, too.
[00:25:34] Phil Pietroburgo:
Great question. I think as a pastor of children, we're always looking for ways For kids to be able to live out their faith, and it's difficult at times because there are things that are complicated and kids are too young or haven't been able to develop the skills. And so in, in our ministry here at the church, we actually search for ways like coming up Saturday, we're going to have a cookie baking where kids can bake cookies.
[00:26:07] Phil Pietroburgo: We'll have adults here to support them but they can be actually hands on involved in living out a part of the mission to help people here in our community. And so I think that with this, there are just limitless ways when a family is trying to figure out how to love their loved ones who are struggling with dementia and aging, countless ways that the kids can be involved at a level that's appropriate for them.
[00:26:38] Phil Pietroburgo: I would encourage. Parents, I point him to this book, but I would encourage him to look at, some of the simple things that are suggested here. Where kids can be brought in and be a part like Jill said of the care team there's tremendous value in that for the child that's a way for some of those pent up feelings of anger, frustration, and come out in a positive way and can be healing for the child just as it is for us when we help other people, we always find that it helps us, more than it does.
[00:27:12] Phil Pietroburgo: Maybe the individual we're trying to help. So I think as a parent, but also as a pastor, I would point families to just finding the ways for their family that are opportunities to get the child involved. And in the process, they're growing in empathy, they're growing in compassion, they're growing in how to put. The interest of others above themselves, which is really what love is all about.
[00:27:40] Dori Durbin: Speaking of love, Jill has a handout. And the handout is something that we're going to include in the show notes. But it's supporting a child with an aging family member. And the acronym is LOVE. So Jill, would you like to explain that?
[00:27:56] JIll Pietroburgo:
Okay. The love first stands for listening to your child and, that's really important because of all the things we just talked about listening to their emotions, not judging your child or, just listening to them and validating their feelings because they're real feelings for that child about how they're dealing with.
[00:28:20] JIll Pietroburgo: They're aging loved one and so and providing opportunities for them to do that. And that could just be talking with you, or it could maybe they need to journal. Some children might express better in art or. Music or, drama, those kind of things. So just giving them outlets to, do those things, listening to the needs of your child.
And then the O would be to offer those preferred activities. When you're going to visit that loved one, you want that to be successful. You want that to be a good experience. Now, there's. A lot of things that could play into that try to make your visit where. It's not the time they might be sundowning or having, their most difficult time of the day and you don't want necessarily a visit to have to be hours on end for a child whose attention span may not be that long.
[00:29:16] JIll Pietroburgo:
You want to pick things that are fun for your child and interesting, too, and things that your loved one would be able to engage in. It could be things that we didn't mention were like, it could just be them reading a little story or, praying together or maybe they're massaging their hand or just holding hands, having a snack together. So like Phil said, we're not talking about complicated things, but we're just triggering people's minds to realize. These are just simple, loving, caring things that we're suggesting things that will really help them engage and still love like Grace, Grace did like loving the grandma throughout the story.
[00:29:58] JIll Pietroburgo:
And then the V is viewing things from your child's perspective. As a parent, stepping back maybe looking at like, why is, my child not wanting to go or why are they acting funny try to think about your child's personality help your child maybe engage a little more into that.What are their gifts and talents? If they're into art, maybe they could draw pictures. Make a card or, sing a song for them, those kind of things. Really looking at it from a child's perspective, and then, oh, then the other thing with that too is, for me I, and like I said, my kids were older, but I could see where it could be very challenging because I was spending a lot of time with my.
[00:30:47] JIll Pietroburgo: And I think the other perspective thing is realizing your child may feel sad or even angry if they're losing attention from you. And still building in those special times with your children, being an intentional parent where you're. Not losing that special time.
[00:31:16] JIll Pietroburgo:
And then the E is that example setting. Things in life can make us bitter or better. We can have a really bad attitude about. Having to care for this loved one or, our loved ones really messed up our routine and our loved ones really kept us from. Our children and, it just can get blown out of proportion. And so our children are watching that . Are we showing that compassion? Are we, respecting and honoring our loved one? Are we teaching that? What's our tone of voice when we talk to people about our, aging parent? And those are all things that our children are going to learn from us. And so that example setting is really important to, really model for our kids because that's what they're going to learn the most from us , my own kids say, mom, you set the bar really high. So I don't know what that means for me if I'm, not going to get the same level. I don't know, but at least the same level, if not more.
[00:32:25] Dori Durbin:
That's such a good acronym and easy for parents to remember. And like I said, you're going to include that in our show notes. So the great thing is there's another side. And so I only let her talk about half of it. So you'll have to check out Jill's Sometimes Grandma Calls Me, Jean!" Where can they find your book?
[00:32:45] JIll Pietroburgo: So they can get it right there on Amazon or Barnes and Noble.
[00:32:50] Dori Durbin:
And, if they want to find you or meet you where should they go?
[00:32:52] JIll Pietroburgo:
So that my website is jillpietrobergo. com. So that's my website. I have a Facebook page that is called see me beautiful and that's just a kind of really just I share resources I share. Things about my book. I shared things about my mom, just all kind of different things. And then I'm playing around with Instagram. I don't really, I'm new to that. I'm more of a Facebook person, but I know when you're a self published you're the one speaking about yourself. So I'm trying to play with that a little bit. So I am on there as just Jill Pietroburgo.
[00:33:32] Dori Durbin:
This is fabulous. You should check her book out. It's a great book for the whole family. The information in there is just gold. I just wanted thank both of you, Jill and Phil, for your time today and for just giving us this resource that can really help parents.
[00:33:47] JIll Pietroburgo:
Thank you. It's been a joy to be with you, and I love your show, and All the people that you have on here.
[00:33:55] Dori Durbin:
I've learned a lot myself . . . so thank you. Thank you.
[00:33:57] Phil Pietroburgo:
Thank you. It's been a privilege.
[00:34:00] Dori Durbin:
Thank you both