Side Effects, Solutions, and the Power of Persistence in Caregiving

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From a young age, Jill Meyer-Lippert was thrust into the caregiver role, helping to care for her grandmother, who had Alzheimer's disease. She balanced supporting her grandmother with school and extracurricular activities. 

Later in life, Jill cared for both her mother during breast cancer treatment and her father through various health issues until his passing. Through it all, Jill demonstrated incredible strength, resilience, and compassion. Even in the midst of her own hardships, her primary concern was helping her loved ones. 

After losing her father to cancer, Jill found solace in marathon running and other endurance events. She channeled her grief into fundraising for cancer charities. Jill's experiences as a lifelong caregiver inspired her to start Side Effect Support LLC, providing resources to help cancer patients manage oral side effects from treatment. Through her organization, Jill is able to give back and make a positive impact on the lives of others facing similar struggles. 

Jill's story is one of perseverance, purpose, and turning personal adversity into opportunity to help others.

About Jill:

Jill Meyer-Lipper is a Registered Dental Hygienist and the founder of Side Effect Support LLC (https://sideeffectsupport.com/). Side Effect Support is an online resource for cancer patients, family caregivers, and healthcare providers that aims to reduce harmful oral side effects of treatments to improve quality of life and treatment outcomes.

Jill is a 2014 recipient of the Sunstar Americas/RDH Award of Distinction, holds a certificate in Oncology Management from the University of Southern Indiana College of Nursing and Health Professionals, and is an instructor for the National Network of Healthcare Hygienists’ Oncology Certificate program. She is a member of the Registered Dental Hygienist Advisory Board for the Oral Cancer Foundation and was named one of the “6 Dental Hygienists You Want to Know” by Dimensions of Dental Hygiene magazine in 2022.

Connect with Jill:

Website: https://sideeffectsupport.com/

Twitter: https://twitter.com/Support_Jill

Instagram: https://www.instagram.com/sideeffectsupportllc/

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

Linked In: www.linkedin.com/in/jill-meyer-lippert-8ba63050

https://www.linkedin.com/company/side-effect-support-llc

Blog URL: https://sideeffectsupport.com/blogs/survivor-caregiver

https://sideeffectsupport.com/blogs/professionals

Other Links to Include:

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Transcript

Natalie: 0:00

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

JJ: 0:36

morning. Natalie,

Natalie: 0:38

how are you doing?

JJ: 0:39

I am wonderful.

Natalie: 0:41

You know, I was thinking that today Thursday, also known as Thirsty Thursday. So I have my big, giant water bottle. I wonder if I should say Stanley. Dear Stanley, please sponsor us. We know you have the money. We've seen the social media insanity. I'm gonna take some right now, you

JJ: 1:01

know, but they weren't popular for years, and that your dad had one of those ugly green one, yeah, yeah. But it was like, you know, 40 years ago, and

Natalie: 1:09

then it wasn't cool. Talk about Stanley unless they want to sponsor us, unless they want to sponsor us. Yes, we're shameless, but let's talk about caregiving, because we have the best person today. I'm sorry. I think everybody's the best. I know. I just love everyone. It's true. You are very lovey well and and you're it's true. And so I let's talk about Jill, because Jill has, Jill is

Unknown: 1:36

Whoo. She's the one that showed up today. We're

Natalie: 1:38

so excited. Technically, she did show up. And so we're very excited, okay? And she's from the land of cheese and MiraLAX,

JJ: 1:45

yes, and just be quiet. I'm gonna get on this intro. Because, okay, you've got us off track already. You know, we have a limited time here. Okay, Jill, we're gonna get serious now, because you have, like, an amazing story, which I absolutely love. So today we have with us Jill Meyer Lipper, and she's a registered dental hygienist. She's the founder of side effect support LLC. Now, if you've ever cared for someone, either with a terminal illness or a chronic illness, or it's just anyone, you know, there's side effects from the illness itself or from medication. So we're going to learn about this later. So just do not her way how she got to that destination. I would say her purpose is really an amazing story of care. So her story unfolds at birth. So that gives it a like that person she grew up with a grandmother diagnosed with Alzheimer's. You're giving it all away right next door, she supported her mother through cancer and moved back home to care for her father at his end of life. But Jill's bio, I think, shared bits of humor and wit and resilience and purpose, I see that her caregiving life led her down a path that is changing people's lives, and not just her family. Jill, I am so excited that you are here because you have all kinds of nuggets, both personally, because you got some stuff, you know, some after stuff like, that's our middles hanging on your wall. That's right. So we're so excited to have you here.

Jill: 3:16

Oh, thank you for the invitation. Happy to join you.

JJ: 3:19

So as Natalie says, Natalie, say it. We're

Natalie: 3:22

going to talk about your caregiving story. So you know, start from the beginning. So you were born, but literally, you were born into it. Like everybody typically jumps ahead and your story is of serving multiple really helping to care for multiple people in the variety of ways. So let's start with let's start with childhood. Let's start with your grandmother. All

Unknown: 3:48

right, yeah, so my grandfathers, Both of my grandfathers, passed away within six weeks, apart from each other while my mom was pregnant with me, and my parents happened to be building a home out in the country at the time, and my mom's mom had already been showing some subtle signs of dementia at that point. So once, once my grandfather passed away, they actually sectioned a small part of the land off and put a small home up for my grandma so she would live right next to us, so she wouldn't be out on, out on the farm, out on the country by herself. So it didn't take long then when she was starting to progress, and that was just part of our natural family life that was taking care of grandma and having to be there and and then as I got older and things progressed, you know, I never knew anything different growing up, and then all of a sudden, grade school years, high school years, you're seeing, you know, your friends being cared for by their grandparents, and me having to maybe pass up on, you know, going somewhere because I had to stay home with grandma or spend the night with grandma, so I had to be home earlier, you know, different things like that. So all. A sudden, as you got a little older, it's like, wow, this isn't how most people live. I guess that's

Natalie: 5:05

That's true. That's true. Now you're from Wisconsin again, the land of the cheese, and I know we'd love for MiraLAX, also cheese and relaxes. I love cheese, but we're not going to go with what happens with cheese? I mean, Wisconsin's a huge state, I mean, and this is an election year, we know we can see it on the map, but it's a giant state. And so it makes sense that you all had lots of land. And I love that you moved your grandmother in, because I'm assuming your grandmother and grandfather had you set a farm and so built a house separately. But close enough, I love that we all lived like we lived in the holler. We lived up with Whitaker holler road and all of our family. We could see each other's houses for the most part. It was

JJ: 5:47

not odd when you wrote that, you know, same like, odd. It was not odd. We

Natalie: 5:51

were like, how about did you have a pond nearby? Because we had four. And so what are some of the I hear you saying, because you did some things similar to what I did, which was spending the night and that sort of thing. What kind of activities? If you don't mind me asking, did you how did you support your grandmother?

Unknown: 6:10

It was just being there, really. It was just with those with Alzheimer's. You know, there was times that she would come up with these stories, like, was she wandering around? And you just couldn't leave her alone. There's times that she would be things would agitate her, you know, you did. You couldn't watch TV because she'd be, why is that man looking in my window? Or she'd go into the bathroom and yell at the at the mirror because some old lady was looking at her, yeah, yeah, you know. So there's, there's that agitation. So a lot of it was just being there, talking with her, keeping her company and, yeah, just making sure she was safe. I think those were the biggest things. Did

Natalie: 6:49

your did your parents hold on? I've got one more question, Shay, did your parents talk to you about what was going on with your grandmother as you, as you continue to move forward as aging process yourself?

Unknown: 6:59

I think it was not really, it was just part of part of life, and we were all just trying to figure it out as you went, because Alzheimer's, even back then, I'm 53 so you didn't really know that much about it, and it every day was a surprise, and it was something that was so interesting, because She would have these moments of clarity and be really good for part of the day, and all of a sudden part of the day was just night and day difference. You know, it's you just never knew what you're going to get.

JJ: 7:31

Yeah, no, that was my question. Ellie, good job, because Jill and I are about the same age, and she looks much younger. And that is tax.

Natalie: 7:38

I don't want to talk about that talks but, but that

JJ: 7:41

was kind of my question, because I know there were years there where Alzheimer's was just, yeah, it's a natural progression. Oh, they're just getting older, but it this, the signs are significantly different. But there were years of nobody really, you just didn't really, you didn't know what it was, you know, it was age. That was my my question was, did you really that diagnosis did come with, you know, a handbook, and it didn't No

Unknown: 8:04

and it's amazing. Now, when I look back, I remember some of the recommendations that the doctor would give would be like, always bring them back into reality. And even when I was younger, I thought, well, this is dumb. Why? Why are we doing this to her? Because, you know, she would ask, sometimes, multiple times a day when my grandpa was going to be home. Yeah. And with the recommendation, they were always like, No, you have to, you have to remind her he passed away. Well, she was going through that grief over and over and over. And, you know, I, I was probably one of the only ones, and like, oh, he'll be home later, yeah. And she's like, okay, and she was going to forget and ask, you know, an hour later, why are we making her relive this over and over? So I personally think that it was just easier to appease her, make her happy, and just let her move on and don't worry if she's not living in our reality, that's that's okay,

JJ: 9:04

yeah, let her live in hers absolutely well.

Natalie: 9:07

And we heard that from from Marty, our friend Governor Schreiber, talked about he had to go into his wife's world, as opposed to try to keep her in his, because it created so much distress. And so I think clearly you were very wise beyond your years, because it you're right, some things are just like, This doesn't seem like common sense, like, why would I do this and create pain? So now we're going to move a little bit fast forward, because it sounds like there was elements of supporting your grandmother and you graduate from high school go on to college. So then what happens?

JJ: 9:49

You started a life. You started a

Natalie: 9:51

life. You had a life that was neat, almost all right, you're like, Well, that's what a no life to be, yeah,

Unknown: 9:59

so I. I moved out to my first apartment and was beginning classes to be a dental hygienist. And at that same time, my mom was diagnosed with breast cancer. So her diagnosis, she had a mastectomy, and she was supposed to have six months of chemo, and it ended up being extended to seven months because of delays with complications. But my new apartment was, I would say, not quite an hour away, but I was going to school full time. I was working two part time jobs to pay for my schooling and to live, and then trying to drive home between classes, drive home on the weekends or whenever I had a night that I could spend, that I could be there and and help during the the difficult times. Because anybody that has had a loved one that goes through chemo is kind of a roller coaster again, where you know, after those treatments, you're going to have it at times where it's really rough, and then they'll start to slowly get better. By the time they feel better, it's just in time for that next treatment and go through the whole thing again. So just going back, sometimes even just for an hour or two, and then drive back and go to my next class, or go to go to my work or whatever. So it was a, it was a lot during those months, for sure.

JJ: 11:12

Do you feel like when you went back? I mean, I know your dad is there, and he's a, he's a, definitely boots on the ground. He's there constantly. Do you feel like it was important for you to actually be physically caregiving, or was it just that companionship with your your mom, because you said that about your grandmother? Do you feel like it was being there, if it was the hour, just to be there with her was just as important as caring for her physically?

Unknown: 11:37

I think so. Yeah, and I think she was so sick with her chemo, that is, it was just scary. It was a scary experience. It was many times that he thought, boy, is this going to be it. So I definitely didn't want to not be around, right? Yeah,

JJ: 11:54

you, you said that there were times there with side effects, because I know you had this is kind of where you started seeing side effects. I think that was, is that correct? Where you started seeing things from the chemo that kind of triggered what's going on? Yes,

Unknown: 12:11

I had an aunt that had also passed away from cancer prior to my mom that I knew she had a lot of terrible side effects from her chemotherapy. But then when they saw it with my mom again, one of the side effects that really she struggled with was problems in her mouth. And you know, her mouth was super dry, like she would choke, because her tissue was so dry, it would like stick together, and she had these massive mouth sores. And I just remember her saying that, you know, even though she was she had no hair, you know, she had no eyelashes. She's nauseous and tired. For her, the problems in her mouth was one of the, one of the biggest things, because it just, it was so painful. I remember her going to her, her doctor appointment, and she was kind of anxious to go and say, I'm so excited to ask them, What can I do and get some relief from this, and they just kind of shrug their shoulders, and they said, well, it's just part of treatments. You just need to deal with it. And it just made me so angry, because I felt like she was being dismissed. But, you know, not now that I was in dentistry, I thought I'd easily be able to find all these answers for her, because it's the mouth, you know, you would think that we would know what to do. And then I found out that wasn't the case either. So it just started me on this journey. I wanted to learn more, and I wanted to try to help her at the time. But even if I couldn't help her, I knew I could help somebody with it. Someday, I'm going to have patients that come through with, you know, with cancer, or I'm going to have other family members or friends or what have you, and I wanted to find those answers. It just felt like it was just such, such a gap in care, and it just felt unacceptable to me that we were okay letting people suffer and just shrugging our shoulder and saying, Well, it's just part of it. I always say it's not about survival. It's about having quality of life too during the process as much as possible. And you know, through survivorship years.

JJ: 13:59

So she's got a fire in her belly, Natalie, she's got a passion. That's when it starts well.

Natalie: 14:05

And there's a tie to being able to there's a tie to be able to say, okay, maybe I can do something. Because this is about being able to do something. That's probably one of was has been my biggest frustration in trying to support Jason and how we support our mom is, what can we do to kind of move the needle to make it, make life, and you're right about not just survivorship, because people are like, Oh, you survived, and you're like, and I will tell you, Jason has dry mouth because of because his salivary glands are burned up and from the radiation and chemotherapy. And I was so surprised when I met Jill, because your mom had did not have a head and neck cancer. She had breast cancer and and then she had dry mouth because of that, I would have thought it was. I would have not thought of that as a side effect. And the fact that she has mouth sores is very interesting to me, because I. I would have just expected it from a specific type of head and neck cancer. And so I know that Jason and I work, you know, I'm searching the internet looking as his caregiver. I'm searching the internet looking for anything I can find. And there's a very even today, there's still some limited products. We'll get into that later, but I feel you on that one. So let me ask you this. It's you and your sister you have. How many siblings do you have? And sister? Okay, but your grandmother came from Minnie.

Unknown: 15:34

She was my mom had 10. She was one of 10 siblings. Yeah, yeah.

Natalie: 15:39

Cuz remember seeing that, and I was like, Oh, look, your mom. And then your mom was like, Well, I think I'll just have two. I'm good.

Unknown: 15:47

I have over 3030, some first cousins on that side alone, so and I'm one of the younger ones. So some of my second cousins, like my cousin's children, are my age, so it's quite a big family. I my husband. I started dating in high school, and I always joke that I'm like, Well, you're the only one I wasn't related to, so congratulations.

Natalie: 16:10

A rural community just got to make sure the tree doesn't go straight up. So you're caring for your mom. You're going back and forth. And so what are the conversations like with you and your sister, you know, like, how are we Caring for Mom? How are we supporting dad? Like, your role in like, how much did your dad allow for you and your sister? Like, was he like, I've got this or, Hey, girls, I could use your help. Like, what was that scenario? How did the relationship dynamics change?

Unknown: 16:39

It went pretty well. I think I don't know maybe if it was from the experience of caring for grandma, but my mom still continued to work during that time, and she thankfully worked during worked for our doctor. We had a doctor in town, and he was nice enough that if she had some bad days, she could even just go lay down in the background. Wow, a little bit. You know, he, he was very understanding and kind, but my dad was self employed, and his business was attached to our home, so he he was able to be there on days Two that that were bad, and to take her to appointments and be flexible with the schedule, which was really a blessing. But my sister had two young girls, very young girls at this time, so, you know, she had her hands full with all of that too. So everybody was just doing, doing what they could, pitching in. And they're really, it's funny now, when I look back, I guess we just didn't talk about it. You just did it, you know, you just jumped in, did things, and didn't really think much more of it from that. Yeah, Jay,

Natalie: 17:41

we need to take a break real quick. I just went over our time because I was just so engrossed. So let's take a break real quick and we'll be right back. I don't know about you, but my inbox is always cluttered with useless emails, but there's one I always open the Confessions of a reluctant caregiver newsletter, you may say, Natalie, what makes your so special? Well, I'm biased, but don't just take my word for it. Here's what our subscribers say they love. First, it comes once per month, and you can read it in under five minutes. Next, you'll find amazing tips and resources to use in your everyday life. And hook doesn't love a recommendation these sisters do, which is why we share sister approved products and discount links to save you time and money. And of course, your first to know about the upcoming month's confessions, just like our show, you're guaranteed to relate, be inspired leave with helpful tips and resources and of course, laugh. Go to our website, Confessions of a reluctant caregiver.com, to sign up for our newsletter today.

JJ: 18:53

All right, Natalie, we're back here with Jill, and she just reminded us, sometimes there's no communication needed in families. They just jump in and do what needs to be done, which is true, sometimes you just do it. So Jill, when your mom, I know she was given a a clean bill of health, no cancer detected. Is that? Is that correct at a certain point after her diagnosis?

Unknown: 19:16

Yes, she well, she will be turning 86 this year. Wow, that's what I thought. Wow.

JJ: 19:21

Everything worth day. So at that point, do you get back to life? You say, Okay, I'm going back to mine, going back to school. I'm going back to getting every my life's going

Unknown: 19:34

Yes. You're like, Yes,

JJ: 19:38

I'm gonna live my 20s out,

Unknown: 19:41

right? Yes. And then, then my dad started getting sick. He originally was diagnosed with a very mild form of leukemia that the doctor had said, You'll never need treatment for it. You'll die of old age before this is ever an issue. But then in the next few years, he just started having one diagnosis after. Other, he's had some seizures. And then from there, we learned that his his thyroid wasn't working, and then we all of a sudden, all these autoimmune diseases started coming. He had lung, a lung disease that that was the first time I remember we thought he had pneumonia, and we went around and around, and he was hospitalized for a long time, and nothing was working. He was getting worse and worse. So we had to transfer him to a hospital in Green Bay, where they had an infectious disease specialist. And finally, yeah, I remember leaving one night, and I thought, he is not going to make it. He was just struggling to breathe so bad. And the next day, they put them into a lung biopsy, and they finally were able to figure out what it was from the lung biopsy and put them on this massive doses of prednisone. And I remember when we left the hospital a couple days after, the doctor actually came in and he said, I thought for sure you were leaving your feet first. He said, You know, you

Natalie: 21:00

gotta love positivity. Good news, you may I

Unknown: 21:05

don't the doctor. He just seemed really surprised at himself, like, wow. We figured this out. I really didn't think this was gonna help us.

Natalie: 21:12

You know, that's inspiring confidence. You know, as a caregiver, you're just like, Huh? All right. Well, thanks. You know, were you? Let me ask you this, because I kind of mentally the timeline, were you still? Were you in your 20s when your dad got sick started initially, and because that was a long window of time, was it not? Yes, I I

Unknown: 21:33

think the first time when that happened, when we thought he was going to die. I think I was about 28 at the time, it was just a whirlwind of doctor visits and hospital stays and and once with the seizures, you know, eventually he lost his ability to drive, so then being able to take him to doctor's appointments. So we would have to schedule his appointments on as a dental hygienist. I usually worked Monday through Thursday. I had had my Fridays. We'd schedule his appointments always on the day or an afternoon that I could take him and and be there with him. So it was, it was a long time that finally, in 2004 he was diagnosed with Ho Chi Minh disease, and once he started chemo for that, it was just it was too much for his body to take. So when I talk about people having side effects, this is where side effects really hit home for me, because it they got so bad that every time he went in for treatment, he got so ill that he would be hospitalized. He'd have blood transfusions, he'd be isolated with neutropenic precautions, because his white cells are so low that finally the doctor had sat us down and said, Well, we can continue treatments, and he will most likely die from the chemo and from the side effects, or you can discontinue treatments, just let the cancer run its course and hopefully give him some quality to his whatever life he has left. So as a family, you know, we talked about that, and he, he wanted to discontinue treatments. So that's what was done. And then a couple months later, then he, he did pass away from that.

Natalie: 23:19

So here's the thing, I'm going to make you go back, because you're, you're telling me your dad's story. I need to hear your story. So during this time, your progression, I mean, this sounds like this, 567, years that this went on as from the time of the initial like something's going on in your 20s all the way to till his passing. What was the caregiving journey look like for you at that point? Because I feel like with us as well. It evolves. It continued. Ours continues to evolve. So how did you see that evolution of caregiving for your dad? Because your dad was much longer than your mom, yeah,

Unknown: 23:59

and that was quite a progression, because in the beginning, of course, it is just driving him to appointments or helping him do different things, like he he loved mowing his lawn. You know, he's one of those men that it's like man, you could take a straight line and every rule would be just perfect, and then he couldn't do that anymore, because he was like, oxygen. And so I'd be out there mowing their lawn, and he'd be standing in the front window looking at me, and I'd be like, you know, you get down to the end of the aisle and you turn around, it's like, oh, it's crooked. And he's just shaking his So, yeah, you start off with things like that, and then, you know, it progressed to the point that he was he couldn't do things for himself. He couldn't bathe himself. He couldn't go to the bathroom by himself. So it progressed to him losing his his dignity. Basically, he lost his independence. He lost his dignity and trying to. Preserve that as much as possible. And I think for us, I try to at least do it with humor at some point, you know, I always say, you know, be glad you didn't raise some we'll see girls that can't do this, you know, so. But he's like, Yeah, I suppose so. So,

Natalie: 25:15

I suppose so. So your mom, because I hear, I hear you talking about you, and what was the relationship? How did that dynamic change between you, your mom and your sister, in supporting your dad because your dad had your mom, it feels more acute. And even though the acute is not the right word, it was short term window of time, and your dad is progress. Is years, and that's, it's the years. I feel like that. People are like, whoa, that's so long, because there's, there's those immediacy of caregiving, and you're in this chronic state of stress, and then there's the slow burn that has ebbs and flows of chronic stress, if that makes sense,

Unknown: 25:54

yeah, and I think that's a great way of describing it, because that exactly what it was. Because we, again, we were constantly in the hospital. I had this my hospital to go. Bag constantly packed, because you just never knew when you were going to need it, and it just became a way of life for us. Again. I can't even tell you how many holidays we spent in the hospital. We'd bring our crock pots to the hospital and set them up on Christmas and take over the Christmas tree at the end of the hallway. You know, it's it just was a way of life for us, and we got to know so many of the the nursing staff and people in the hospital, they it almost was, became our second home. You

JJ: 26:35

moved in with them. You were still able to work and make that transition back during those years to you and your your sister was still, she still had the two kids, and she was close in proximity.

Unknown: 26:45

She was close, yeah, they live in the same small town, and I live in another small town, not too far away. But then, yeah, towards the end, when my dad was getting really bad, and especially when we knew that we were just continuing treatments, and this was going to be it, my sister, her two girls, and and myself basically moved back in with them, and that we could be there, because it was exhausting. It was absolutely exhausting just trying to be there with him through the night, because he had a lot of pain and he was weak, and we needed to to be right there. So there were weeks that actually slept on the living room floor because he wanted to sleep in a recliner. It was easier for him to breathe in there. My sister and I would both sleep on the floor, and then he'd wake up, and you'd have to be there and kind of hold them and and help them change positions and things like that. So again, you just go through the motions sometimes. Yeah,

JJ: 27:41

you know, a lot of people say that that's hard to do for a parent, that it's difficult to take on that role. How did that work for you? Because you've totally switched roles to your the caregiver. Were you still a daughter? Or did you really look at it as how did that work for you? Jill,

Unknown: 28:00

honestly, I think it's just going on autopilot. Really, going on autopilot. I think, though, I just remember him at times looking at me and being like, you know, how long do you think it's this is going to last? And I'm like, I don't know. You know, it's hard to see them suffer and not be able to

Natalie: 28:19

help. Yeah, one of the things I read that, that, and this is where some humor comes in, is that you were designated the wiper. And I read that, and I thought, God, you're a better person than me. And because, could you explain just a little bit about the wiper?

Unknown: 28:37

Yeah, so as I mentioned, you know, towards the end, he was so weak, and he just lost the ability to do basic things by himself. And when it came to, you know, having to go on the toilet, and I took on that role that I'm like, Okay, we're going to do this. And no big deal, always kind of making it easy as we could be. But then I realized I think he didn't want to spread that duty around to other people. So I remember coming home from work and my mom and sister like, Oh, good, you're back. I'm like, Why? Because he's waiting for you. Anybody else told me?

Natalie: 29:18

Like, Oh, thanks.

Unknown: 29:21

So yes, I became the wiper officially. Oh,

JJ: 29:25

that is a daughter honor, though, you know. But I love how you guys have really taken on the thought. And you did mention that in your bio was that it was, there was a lot of it that was about dignity, and I know that it would even looking at our own life, sometimes it's, it's different when we care for our mom versus if we had had to care for our dad, and I think preserving that dignity would have been very different with him, with our mom, because it's just different. Our relationship, of course, is different with her. We've always, you know, been really close. We've, you know, changed clothes together, you know, all that kind of we've all been in the dressing room together. And it doesn't actually. Matter, but I think that is really an honorable thing to be able to preserve that dignity. We would have done that with humor as well. You know, that's the best way for us to do it as well. But that's really an honorable thing to be able to do and to be designated the wiper that he waits on you. I really, I really like that. Jill, it's pretty

Natalie: 30:15

impressive. I'm not gonna watch this. It is okay. So, Jay, this is the perfect place to take a break, and so let's be right. We'll come right back.

Unknown: 30:27

If you like confessions, we have another podcast we'd love to recommend the happy, healthy caregiver podcast with Elizabeth Miller as a fellow Whole Care Network podcaster. We love how Elizabeth chats it up with family caregivers and dives into their caregiving and self care strategies, just like us. Elizabeth believes that family caregivers are the experts in caregiving. Beyond the informative conversations, Elizabeth reveals the tried and true resources and practical self care tips that empower caregivers to prioritize their health and happiness. You can find the happy healthy caregiver podcast wherever you download your favorite podcast or go to the website at Happy Healthy caregiver.com

JJ: 31:15

All right, we're back Natalie with Jill. If you did not hear our wiper story, just put it in reverse. Just go back and listen, and then we're going to jump right back in,

Natalie: 31:24

you know? And I think that. And I just kind of the quick recap, we were talking about dignity, and how do we preserve dignity? And, and, Jill, I think you, you really found that you're the oldest, you're the oldest of the siblings, right? Are you the baby? Oh, I

Unknown: 31:38

am the baby. Oh,

Natalie: 31:41

we normally establish that right up front, so we can really, kind of mentally and emotionally prepare for that. Oh, I'm always, always,

JJ: 31:49

I always cheer for the oldest. I mean, I would have thought you were the oldest. Yeah, I would have no, no,

Unknown: 31:56

I'm I'm, the more more the trouble child you don't have the baby. The baby always causes a little bit more ruckus in life. That's how I wish

Natalie: 32:03

Emily was there were no rules. Yeah, she'd be like, Yes, baby power, exactly, well, and Yeah, mom and dad were just tired by the time they got to Emily and so.

JJ: 32:15

So you lost your dad at an early age, or what I feel like is an early age. You were 35 so we lost I lost dad. I was 38 and so I know that kind of changed the trajectory of my life significantly. So what I know after that, there's a certain period of grief. I looked at grief before and after. What is the path like? What happened with that? What did you, I guess, do with that? What did that? What did that do to you? Like, how did you handle that?

Unknown: 32:48

I think for me, seeing him lose his ability to do so much for such a long time, it always struck me. It's like, you know, man, when I'm someday laying on that deathbed, and I look back, what do I want to see? And I want to start doing things, experiencing things. And I had started running while he was still sick, which I would recommend to anybody, that if you were going through things, physical activity is a lifesaver in so many ways. But I had gotten a postcard while he was in his final weeks advertising the recruitment meeting for something called team and training. It is a section of the Leukemia Lymphoma Society that will train you to do an endurance event in exchange for fundraising. And I remember thinking, wow, this seems like a sign, because here he had leukemia, he's dying of lymphoma, and they could train me to do something really cool. I could raise money for other families that are going to deal with stuff like this. And he passed away on March 18, and by April 6, I believe it was, I was in a meeting for team and training and signed up to run my very first marathon in Chicago that October, and I went right into marathon training mode. And that was a great way to take a lot of frustration, take a lot of sorrow, and just run it out and and realize, you know, there's so many times that I did not want to go on that training run and I didn't want to go running in the rain or get up extra early to go get those miles and but there's always that reminder that, yeah, people that are going through cancer and going through these things, they don't have that choice. That's right, and I should, I should be grateful that my body has the ability to do this and not waste that. Once I did that marathon, I was just It was a feeling that is just undescribable. It was so awesome, and it started a feeling in me that I wanted to keep repeating. So I started. Getting into more events and and did more marathons, did a couple ultra marathons. And really, yeah,

Natalie: 35:08

you're so awesome. I'm like, I could just, I said this before we started, I just run to the refrigerator. That's about the running I'm doing. Because I'm like, Oh, my knees don't like it, but I just think, Oh, the the release that you get, the endorphins that you get. That's why I like working out. But I like working out more like in place, like weights and so forth. But that's so wonderful. I could see the miles being very therapeutic for you as you're to allow you to process and you're working through things, and I'm assuming that's how you kind of process some of the grief too, with the loss of your dad.

Unknown: 35:44

Absolutely, yes, yeah.

Natalie: 35:48

Gosh, Jay, I can't believe it's already time for Sister questions. I'm like, Darn it, don't worry, we will have more stay around after we're done. Um, so, all right, so Jay, it's time for Sister questions. Well, I

JJ: 36:03

have to ask. So what? So what got you to this is really a sister question, sort of, but I want to know what you did. So I know about the marathon, but what you did with all this information, because you really had a concern for help and for making things easier for people that were struggling, that were having all these side effects. Jill, so tell me a little bit about your organization. Yep,

Unknown: 36:32

I started a company called side effect support LLC. It is an online resource for cancer patients and family caregivers, and also for healthcare providers to help get the medical and dental providers more on the same page, to help reduce oral side effects of treatments.

JJ: 36:50

Yeah, and I think, you know, for all of those side effects, you know, we've talked about cancer, but I think it's important to note, it's not just cancer. Mom, for example, has Parkinson's, and I know we've talked to a couple of different people, that's one of her side effects. And the side effect of the dry mouth is that she has excess saliva. It's the most you know, you would never think about that, and we've talked to her neurologist about it. But your resource is fantastic. So thank you. I think is a big thing, and we'll have all the information about that in the show notes. So we're spreading the word too Jill well,

Natalie: 37:25

and Jill has been a blessing, because I connected with Jill through our friends at a quarrel who's a dry mouth spray. It's a device, and because I'm we're constantly seeking solutions for Jason, who will permanently have dry mouth. He permanently has it as a side effect of his radiation. So that's why it was so interesting to me when you talked about your mom initially having it and having sores and things like that. And I'm like, wait, that was breast cancer. Why I wouldn't think that her head would be affected? I mean, besides the hair, we all know that, and so that's like an unexpected thing, and I know that there's so many like, there's so many things like, I think we undervalue our mouth, Oh, definitely, and illnesses that can come from it. You know, I don't know if you want to speak to that. Just a little bit

Unknown: 38:14

sure there's something called the oral systemic link, and we're discovering more and more as time goes on, that how connected oral health is to other diseases and how other diseases affect oral health. It's just a, you know, both sides of the coin with that, but they are actually linking certain oral bacteria to different types of cancers that increase risk. They're linking it to Alzheimer's disease, to pregnancy complications, to cardiovascular disease, respiratory illnesses. You know, the list is just growing, and as science is advancing, we're figuring out more what those links are exactly, and they're sometimes isolating specific oral bacteria is being the contributor to these things. So it's really going to be exciting as time goes on, that we'll be able to take that knowledge, figure out who's going to be most at risk for these problems, figure out other ways of prevention or minimizing their risks, or possibly other treatment options.

Natalie: 39:17

I think that's so important. I will tell folks that we are going to be doing. We're looking at doing a training on oral health and how that affects your overall health and wellness. And there'll be more to come on that. Okay, Jay, other sister question that you might have, because I know we wanted to get that part in, or would you like for me to move on?

JJ: 39:34

Just do it. I know that you you love your sister questions,

Natalie: 39:38

I do love my sister.

JJ: 39:40

Mine is usually, mine is usually serious, Jill, and then she just breaks the mold.

Natalie: 39:44

She just, I'm sorry. JJ is very Soros. This is always my favorite question, and I'm sure I have others. Oh, wait, before I get to that, what I want to go to tips. Let's get tipsy for a second. What would be. Be a tip that you would give or resource besides side effects, support, so that's an absolute huge resource people. So go to the website and make sure it's a side effect support.com, and check that out. Important. But what would be one other tip that you have taken away that you could give to someone else. Honestly,

Unknown: 40:21

I think it would be, Well, number one, physical activity would be huge. Staying active, which is hard as a caregiver, finding the time to do things for yourself is very hard. But also talking with somebody, you know, I think that's something that that's just not a natural thing for my family. We just don't do that. And when I when I look back, especially being a child as a caregiver, having resources for young people who are caregivers, I think is really important, because there's just, it's hard enough for adults to understand and appreciate what a caregiver goes through, but it's very hard for other children to understand when they've never had to deal with it. And I think that is something that is really important, that kids have that support

Natalie: 41:11

that reminds me of Laurette, our friend, who has a book out on understanding Alzheimer's and as a child from that perspective, and it's a children's book, and so we'll put that in the link too, because that's a really good point. Jill is, how do you help children understand when you have a loved one, their grandparent or their mom, doesn't matter. We had Becca, who came on and cared for her mom, and she her mom had an illness when she was born, and so she grew up with it, and so it was normal. But the reality is, is then you start looking around, like when you said, I just started looking around at all the other kids, and I'm like, Well, you don't interact with your grandparent the same way. So I think that's really important. Okay, that's the tipsy What is your favorite guilty pleasure, the thing that you do just for you, like, what's the thing you do for just you? Yeah, it's, like, cheese, cheese. Geez, I'm sorry. I can't get past the cheese part. I love Wisconsin. Okay, I'm just gonna tell you.

Unknown: 42:16

I don't know if I consider this a guilty pleasure, but what, what are the things my husband and I started doing about the last year and a half is we have volunteered at our local humane society walking shelter dog. And we love it. Absolutely love it. I look forward to it. I mean, we try to do it at least once a week. We'll get up, you know, I'm a on Saturday, Sunday, and try to put extra time into taking the shelter dogs out. We've just fallen in love with so many of them and and it's so exciting when they find their homes, and you get to kind of follow and see their happiness and life they deserve. Oh,

Natalie: 42:52

that's gonna, I'm gonna tear up on that one. I never tear up because JJ was saying, I'm like, stone cold, and you're such a pet people. Oh, my God, I love you. I'm like, that is so wonderful that that's a different way to give back. It's so therapeutic. My

Unknown: 43:08

phone is full of random dog pictures.

Natalie: 43:13

How do you not take them home with you? Yeah, well,

Unknown: 43:16

we actually took advantage of the crazy housing market and sold our home, and then we're, we're, we banked it, and we're renting, and we don't, we can't have one now. So that's how we get our pet sticks, and that's my excuse, because I know if I would get them, then I probably wouldn't take the time to go walk all the other dogs. And I just think, well, they're they need that. Look at that.

JJ: 43:40

You're always serving she's always like,

Natalie: 43:42

I gotta take care of you. Never stop taking care of somebody I absolutely love that I just I could not love that anymore. I do have one more question, because I have, I have time for one more question. What would you tell your younger self? What advice would you give your younger self now, being on the other side of it,

Unknown: 44:02

like just to to take it in stride, maybe that it just seemed like it was always just one thing after another after another. You know, just felt like every time you got up, you got punched out in town again for those years, and it'll it'll be okay. There's a lesson in everything. And there are ways to take these bad things and make good things come out of them. And I think that was one of my goals, is that I I don't like that feeling of being helpless. I want to take control over a situation. So it was very difficult during those times when you do feel so out of control. But with creating side effects support, or creating a volunteer program that I did that at a hospital, that led into doing side effect support that was my way, one of my ways of taking control over the situation, and because of that, I'm able to make other people's lives better and make their journey easier. I'm

Natalie: 44:55

going to end it right there. Jill, thank you so much. For being with us today. You are such a blessing, I feel so I love Jill, and I love that you walk the dogs. Daisy, who's right behind me, would love that too. So many pictures I know Right absolutely like

JJ: 45:13

show notes. We will have dog pictures,

Natalie: 45:16

guys. Thanks so much for joining us today, and until we confess again, we'll see you next time,

JJ: 45:20

bye.

Natalie: 45:24

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. Okay, let's talk disclaimers. You may be surprised to find out, but we are not medical professionals and are not providing any medical advice. If you have any medical questions, we recommend that you talk with a medical professional of your choice, as always, my sisters and I at Confessions of a reluctant caregiver have taken care in selecting speakers, but the opinions of our speakers are theirs alone. The views and opinions stated in this podcast are solely those of the contributors and not necessarily those of our distributors or hosting company. This podcast is copyrighted, and no part can be reproduced without the express written consent of the sisterhood of care, LLC, thank you for listening to the confessions of our reluctant caregiver podcast. Applause.