You Can’t Make This Up: Finding Humor in Hard Times of Caregiving

This week, we're giving you all an update on our caregiving journeys—kind of like a quarterly catch-up! We chat about the hurdles of advocating for our mom's medical needs and getting her to appointments. By sharing our stories, we hope to help you learn about Medicaid benefits and the importance of speaking up. We also dive into the emotional side of caregiving, from tough moments to finding humor and healing through sharing tales.

We get real about family dynamics as our sister Emilie steps back from caregiving. We respect her decision while recognizing the changes it brings. We touch on experiences with hospice care, the financial strains on caregivers, and our push for tax credits to honor unpaid family caregivers. Throughout, we aim to uplift and connect with you by sharing our honest caregiving highs and lows.

On a personal note, Natalie opens up about her worries about her husband Jason's upcoming cancer scans. Even with palliative care, the shadow of cancer affects our marriage. In the end, this episode is all about community, self-care, and navigating the maze of caring for our loved ones.

Transcript

Natalie: 0:02

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

Unknown: 0:28

Start with Good Morning, JJ.

JJ: 0:35

Oh my lord.

Unknown: 0:36

Good morning. Good morning. Oh, it's great to see you love it. Good morning. Good morning to you.

JJ: 0:46

You know, I think we got this whole singing thing from mom because she used to come in and sing, rise and shine and give God the glory glory.

Natalie: 0:58

Glory Glory. Glory, glory children. Okay, sorry. Sorry, guys.

JJ: 1:05

Yeah, um, that was yeah, that was there's your morning tune. Gosh, I hope you're listening to this at like, 6am.

Natalie: 1:10

You know what, they probably turned it off right now. They're like, they're not going to talk about caregiving today.

JJ: 1:15

It's all singing. You know what we are going to talk about today? Whoa, we can talk about ourselves. Oh, it's like going

Natalie: 1:23

to therapy. I love therapy, because it's all about me. Emily would say younger sister Emily would say it's always about you, Natalie.

JJ: 1:34

You're right. So this is a quarterly update. It's

Natalie: 1:40

a sister update.

JJ: 1:41

It is it is let's go ahead and say a hot mess. Oh, it's a hot mess, though. Welcome to caregiving. Yeah,

Natalie: 1:49

well, and you know, here's the thing, guys, we're going to tell you this. We're on a new platform we normally record on Zoom. And so now we're going to record on Riverside. And I don't know, they don't pay us for telling you guys this. But there's all kinds of extra media that we can put in. And so I feel like anytime I say something wonderful, you might hear this look, I don't know how to use it. You got it? No. Stab it. Sad. Why is it not doing it? We're gonna lose listeners because of my stupidity.

JJ: 2:34

Okay, so thanks, everybody for coming. And I guess we will get started. Because we're having actually so much fun already. So you know, we do we do so? Yeah. So

Natalie: 2:51

let's talk about the elephant in the room. Yeah. I didn't call her an elephant.

JJ: 2:58

Yeah, it was you didn't? You didn't. So, you know, I guess this the past three months? It has been a reflection, Tom. That's what we're going to talk about

Natalie: 3:11

reflections and caregiving. Maybe we'll title this reflection.

JJ: 3:16

Wrap it down. Because we won't remember it. You know, 45 minutes? Because we're old. Yeah. So we celebrated our one year podcast anniversary. And at the end it was Natalie's dancing, if you haven't seen this. So at the one year mark, you kind of always go okay, let's kind of regroup and let's see what was going on. Like, why are we doing this? Have we lost our minds? Wait,

Natalie: 3:45

did anyone listen? Besides me going back to make sure I got a download like, Well, I had least I had one I listened to myself. And I did. Yeah, I listened to myself.

JJ: 3:57

So I think like, I'm like, why do we why are we doing this? And is it? Like, is it you know what's going on? Like, is it is

Natalie: 4:07

it helpful? You're over there stumbling around?

JJ: 4:09

Yeah. And so you know, the first the first thing I want to do is say that I think it is I hope so. And you know we talk about the things that are four goals, inspire, relate, educate and laugh, okay, laugh check.

Natalie: 4:25

We always get laugh, we laugh at ourselves. We can't

JJ: 4:28

buy and ya know, and so the one of the other things though, is for light and so I think we come on and we are going to tell you that we are in the same hot mess. We have the same situations. And the past quarter has been no different. Let's just give a full update yesterday. Yesterday Nedley

Natalie: 4:49

why I was having a full blown breakdown. Oh, is it it's not saying which kind of breakdown. It was sort of

JJ: 4:55

snot sandwich but then it was sort of like fury like my face turned as red as my hair.

Natalie: 5:00

You had all the emotions, didn't you? I did. I was like hot mess

JJ: 5:03

need therapy, like, I don't drink even but it was like, I'm gonna have to start drinking. Because the facility, mom had to cancel her neurology appointment, she needs to see her neurologist, like once a month. And so, and they had called me and said, Hey, we had to cancel your mom's appointment. We didn't have transportation. Okay. And that's a hard thing for me. Because, you know, we live so far away, you live far away. And Emily, you know, sadly, she has a full time job and lives an hour and a half away. Sadly, she

Natalie: 5:30

has a full time job,

JJ: 5:31

ya know, sadly, I mean,

Natalie: 5:33

I want you to have a job and like, yeah,

JJ: 5:35

most people, most people as caregivers have a job. Yeah. You know, hey, you're trying to make a living here. And they said, you know, we had to cancel your mom's point. We didn't have transportation. So Giles had appointment, she

Natalie: 5:47

wasn't just getting bloodwork. She wasn't just going for an annual physical, she was going to a neurologist who manages her medication. Yeah,

JJ: 5:55

manages and checks to see how far her Parkinson's is, has progressed, and then also how her main medicine is working to see how her movement disorder has progressed. And so they cancelled it. And then they may called and said, Hey, we have a conflict for your mom's appointment. And we are going to have to cancel it if you can't get transportation for

Natalie: 6:17

notice that says if you can't

JJ: 6:24

Yeah, it's just like, I was like, I'm sorry, what it was who? Who, what? So just so you'll know, Uber does offer a health care service. But yeah, so that was really frustrating for me. So you know, I called everybody I knew we almost put up a Facebook post. And but it was like, we cannot miss another appointment. That appointment was Monday at eight o'clock. And so we cannot miss another appointment. And you know, a called Emily, she was like, I've got like, I've got so many things on Monday, I cannot cancel, I'm already full of appointments for myself. And so finally, after we just realized we can't do this, she has canceled, Emily has canceled all of her morning stuff. I mean, that's how desperate we got. And we've had to take it on. So mom won't miss her appointment. So So

Natalie: 7:14

and I will say this, you can be like frustrated, I'm going to tell you I was just flat out mad and mad because it's in the contract. So folks, I am very, very much on the regulatory side of the house. This is what I do for a living and working government affairs and so forth. And but I've run congregate settings before a random for adolescents. But the reality is, is congregates congregate, which means they're not living in the home, you're living in a skilled nursing facility in this case, and it's their job. And I said to you, Jay last night, and excuse the language, so if you have small people listening, I don't actually give a damn if your CEO takes my mom to the hospital to have her appointment or not. Because you're contracted to do that. And I have this and you said, Whoa, because I am like the Kraken like I'm like Release the Kraken, please let me call. And then we're like, Well, and, guys, I think this is going to be a relatable moment. Like, I know I can call and I can push and I can push and I have every like from a from a regulatory standpoint I have everything I can do. I'm justified in saying you have to take her you're contracted with Medicaid and Medicare while Medicaid to do this, you're contracted to do this. And there is this fear, and I don't have fear. But there is this very real fear that we will become a problem. And there will be this answer that comes back to us because we've heard it before. We're not able to really meet your mom's needs here and she's gonna have to go somewhere else. And that is code for your problem. And we've run this fine line because mom is placed in a facility that is right near all of our family, they come and visit and the next closest place that had approved her was two hours away. And we can't do that. We can't punish my mom, when and when I feel like and I feel so helpless. It just makes me so angry and all I want to do and I'm going to tell you folks, I could call the ombudsman. So if you don't know what an ombudsman is, there's ombudsman for children. These are advocates that advocate on behalf of individuals, okay. I could call them there's also ombudsman for aging population, and I could call them and they could call the facility and it could still have the same effect. And so, families are put in this place where We feel I feel hostage right now. I feel like I have no ability to advocate for mom. And that makes me feel like a failure. It feels like I'm failing mom.

JJ: 10:11

That's it. That's it.

Natalie: 10:12

I'm failing Mom, this is not about being right. This is about I'm failing my mom.

JJ: 10:17

Well, you know, I'm almost like, okay, I can drop the 18 hours or get on a plane and make sure she gets to her appointment and the appointment. You know, it's it's that important. But then it always takes me back to Oh, my gosh, there are so many people that are out there that they're just fighting to get there. There they work. And there's not like all of us, like there's not three that we're all trying to coordinate. And they just need to get someone to a doctor's appointment. So I did find some stuff. Although I was a little last minute. I did do my research, like fast. And so if your family member is on Medicare, Medicaid, like there's, there's programs out there, you got to dig. So there was ephedra, which was one of the it's East Tennessee, I think East Tennessee spelled that.

Unknown: 11:03

Is that an acronym?

JJ: 11:05

I don't I don't think it's everywhere. But it's whatever the transportation is for the aging population, they do offer this if you don't have a car, but it was they ran, they didn't run late enough. But there is there is in your Medicaid programs, there is non emergency transportation, it's covered, right. And so just so you'll know, if mom needs a little bit more care, like she needs a little bit more help getting in these appointments. But there's also mileage coverage. So if you are doing your best to survive, like you are like short on, you are putting every penny you have into trying to be the best caregiver, you can be. First of all, you might just look into it. That's all we're saying. And there's that, but there's also coverage in the state of Tennessee, I know let's look into but they would actually invite scheduled at 72 hours in advance, they would have done because it's non emergency transportation. I've just I was shocked.

Natalie: 12:10

Well, and here's the thing, I'm not shocked because we have Medicaid transport for children for appointments. And that works for adults too. And you're right, there are rules around this. And so let's just be really clear friends, we're talking about Medicaid and Medicare. Let's remember, Medicare does not pay for long term supports like congregate settings. So they don't pay for skilled nursing, they may pay for rehab, and a window of time, but they don't pay for skilled nursing, otherwise known as nursing homes, to the older people who I'm like, Oh, those are trendy new names. They're just nursing homes when we were growing up. And so I think that's really important because our mom is dual eligibility, Medicare and Medicaid. Now, I think this is important. Just if you only have Medicare, that doesn't mean you can't have support. But what it means is you want to call that 800 number on the back of your card and ask questions about I'm having problems with transportation, I am concerned. And here's the interesting part, the fact that Medicaid will transport an individual in a skilled nursing facility, if the facility can't is a new one to me. And so I think this is so important, we are going to tell you call the number, ask the care care manager, ask the representative from your health plan, regardless of whatever your health plan is, because everybody's got different benefits. And especially if you've chosen Medicare Advantage plan, and that's and they are different from state to state. So whoever your Medicare Advantage plan is, and I know they just closed enrollment, but they also have extended enrollment periods throughout the year. So you want to cross check, because that's one of the things we did we changed our mom's Medicare Advantage plan. So there would be additional benefits, and we just didn't have any clue. It can feel exceptionally overwhelming. And so you can get a broker and a broker doesn't cost you anything. They get paid for by a different pot of money. But you don't have to pay for brokers and they can help you figure out your needs. You can even call the 800 number for Medicare. I talked to them before. They're great. They're actually helped you navigate program. So I know we got off on a little sidebar, we have like this whole agenda. And then we're like, let's talk about benefits, Jay. And I know I mean

JJ: 14:37

in summary, this is what we said like this was like podcast number one, if you don't ask, they won't

Natalie: 14:44

tell you how shocking to see. Ask and you shall receive. And here's the thing, just because you ask you might have to ask a couple of times because staff different people, people and it's almost like a second opinion and a third opinion and a fourth opinion and I'm looking For the most consistent opinion, honestly, and of course it would be does that line up with what I want?

JJ: 15:07

That and that is like the summary like that, is it? Because if I had known a little bit in advance, and sadly, I would just have to dig for it.

Natalie: 15:15

You know, you wonder why the skilled nursing facility didn't say, hey, we'll help and coordinate transportation through Medicaid transport, because honestly, I feel like, I bet that it was their responsibility to call I'm sure it's not, I'm sure it's not, I'm sure. They're just like, because you know, the part and we'll we'll kind of transition on after this. But the part that makes me the most nervous are for the people in skilled nursing facilities who don't have people who are connected to them who advocate for them. There's so many people who have no visitors and that sort of thing. So I'm a huge fan of volunteering in skilled nursing facilities, because we just, we don't send them there to die. It's just a different level of care that they need. And so I get scared for those people who need those same appointments as mom, because it's not like, you know, oh, well, Parkinson's only goes to, you know, the people who have children who can watch after their diagnoses and all the symptoms that follow. And the medical needs. No, it's not. So I think that's really important that we, it's finding the sweet spot and advocacy, and we'll talk about advocacy. It'll be sprinkled throughout this this show throughout the whole time. So

JJ: 16:25

say you have a family member that doesn't drive, always call. If you don't ask, they won't tell you and getting transportation for loved ones that don't drive and you can't get them to a doctor's appointment. So another situation that we had that we're just going to touch on, and we had our aunt passed away. An aunt that was she's one of the twins. It's June sister,

Natalie: 16:48

she's Jamie Looney she was I grew up with my aunt Jen, we're real super tight with our family. And so all everybody lives in Tennessee you can eat. You're about to hear the accents come out like our family. Yeah. And so our aunt June is the first of our mom's siblings to pass. And this is the first feels weird. I'm not gonna lie to you. It felt really weird. Yeah. But this

JJ: 17:09

situation ran us into we had dealt with hospice back in 2003 2000 to 2003 with our grandmother a very short stint. But this was hospice for our aunt June who had been living with cancer for about three years. And but her twin sister, aunt Jane, she's

Natalie: 17:30

part of the Holy Trinity. Yes, Jesus. Joel and Aunt Jane. And we'll get to Joel

JJ: 17:36

is Joel Osteen, Joe. Yeah. Joel Osteen. He's He's part of what as well. But it was it was hospice, and it. It was a blessing. But what the situation that we had was that Aunt Jane, in the hospice situation, took my aunt June into her home, and gladly did it during that situation. And my aunt June passed away with her sister, which was like, it was it's,

Natalie: 18:08

it seems appropriate. They started life together, because they're twins. And they started live together. And they took and they shared their last breath together, and you're gonna get all snotty, I can feel it. I can see you getting teared up. It's fine. You're allowed to have snot sandwich Betteridge. And like

JJ: 18:24

Aunt Jane is like, she's nice to my heart as well. So in June,

Natalie: 18:28

Jane is the of all like, we realized this after because once you've once you've like, you know, it's like the matrix of blue pill and the red pill. Like you can't go back. And once you realize what caregiving is, you see it all around you and it just it just really just you see it and you're like, holy crap. And our aunt Jane has been carrying her entire life. We're gonna get her on this podcast at some point. I'm gonna tell you right now. She has cared for so many people. She helps care for our mom. She helps care for she cared for everybody her husband, she when he was a she cares. She's cared for Richard the whole time.

JJ: 19:07

Love you Uncle raise your Yes. Here's the funny, she's 78 years old. And she's a rock star. Yeah, she's a rock star. But I think you know, working through with hospice and just they were a blessing. Like I said, there was good and there was bad and the scenarios and just how hard it was. Well, and

Natalie: 19:27

I think this is important. I'm totally going to interrupt here okay, because this was not a rainbow story. This is not a rainbow story and people need to be really be aware of this. You know, this goes into it's hard to want to look at talking about hospice. If you don't understand hospice, you need to and so, you know, we had Oh, no, our friend from heart of hospice, tell them our love Helen. Helen came home with her siblings later that'll be coming up this year. Helen talked about hospital little bit but and harbor hospice is worth listening to absolutely is a fantastic part podcast, talking about hospice, but I'm going to tell you, we do know about hospice. And unfortunately, there were some things that they said that they couldn't do that respectfully, I didn't believe, and things that are at needed. She had been living by herself with her grandson. And I think she needed more care. And they needed to plan for her because she was in hospice, and we knew she was going to pass soon. And they put her in the skilled nursing facility, actually in the same facilities, our mom, and then our insurance denied it. And they needed a little bit more time to get the house set up for June to come and stay with Jane, because we did not want our aunt to pass an objection did not want our aunt to pass in the facility, she needed to be with family. And we do believe in that we believe in that there's so many people who pass in skilled nursing and doesn't mean you're a bad person if you allow for your loved one to but let's just be really clear. It's a family's choice. And there's this a judge of judgment free zone. And so then we had insurance that would say no, and we're not going to pay for this. And so I look at it. And Jay, I'm so troubled by this because they paid out of pocket. For three days, my aunt Jane paid out of pocket, and they're on fixed income. And my uncle paid for one night. And I look at this is rural East Tennessee, you don't have like, we're not a wealthy family. And you just do it you they scraped it together. And they did it. And it made me mad. And I'm sitting there trying to navigate her her insurance plan to see if there's any other additional supports. And, you know, the hospice people were great. It's not that they were like refusing care. It was just, we've just got have better, better policies around this.

JJ: 22:03

It's got and it's communication. And it is it it feels like you know, because we wanted the best care she was, there was there was so much pain, and that's the hard part and you want to get the best care. But in that party, it's the lot of in that part of life. You shouldn't have to fight so hard. No. And I think that's the hard part. Yeah, I think if you keep coming back to policy and stuff like that, and I'm like, What is the deal? Why is it like, how is insurance and government? Why does that get involved with people's decision on life? I feel like that's my soapbox. Yeah,

Natalie: 22:35

I feel so I feel like that too. But here, I'm gonna say this, though, because we've got friends in Canada and the UK and about 54 other countries that listen. And so I'm going to tell you, like, this is the structure, the dysfunction of the United States, Aging and Disabilities and serving people who need care, right. And so it's not only just the people, the people who need support, but also their caregivers. And we're going to talk about that a little bit more later, too. But I just, I think about like, like, understand your system, if you're in Canada, understand your benefits your rights, because there are different health insurance programs and how they cover their citizens in the same way with UK, the more that you can understand and get connected with folks like in the US, I would say, Janet Brennan, who was a guest for us, I sent another lady that I met I met her son, okay, so everybody knows that I meet people all the time. I make friends with everybody. There is no free will like I made a I got to meet someone yesterday, Dr. Quinn, and she was named to USA Today's Top 24 women in the year Women of the Year kind of thing. And I was like she is such a badass. Like she was so awesome. And so I just think, you know,

JJ: 23:55

so who's doing it? Right? Like that's, that was okay. It goes go to the podcast. I mean, we talk about the stories. And that's how we relate. Yeah. But then we also like our goal is to educate that. Yeah. So and we can jump right into that, because there are places that are doing it, right. And there are places that are doing it. They need,

Natalie: 24:16

they need improvement. We want him to say wrong, but I'm like man need they need to work. They're not even partially met on a treatment plan. Right. And, and so I will say so anyway, let me get back real quick. I met a guy at BJs

JJ: 24:33

cracks me up. So he calls me and I'm like Natalie, start talking to strangers. Yeah,

Natalie: 24:37

and I did not listen growing up. So anyway, I lost my train of thought. And apparently I just got back. So I met this guy. BJs. Jason was with me, my husband. And he always worries that I talked to people too much that I'm going to get killed. And I'm going to be on an episode of Dateline. And we watch a lot of that stuff just so that I know how not to get killed. So I really try and I don't mean to make fun of all that that sort of thing. But I really do watch Dateline for a reason because As I travel a lot and that sort of thing, and I just want to be informed, and so thank you, Dateline, I love you, and first 48 And so we're in BJs. And we all know J, you know, Kroger's, the same way. BJs is like Costco and Sam's and all these big wholesale kind of grocery stores. And I at Kroger, they do the same thing. They play these awesome songs. And everybody knows that love to sing. And so I am singing in BJs. And I'm thinking, and I'm singing, I'm staying in the car because I don't actually shop when I go to BJs Jason's job, he makes all the food, he does everything. And I'm just there to be a supportive wife. I am not very sucky on certain things. So this guy goes, Do you know who thinks this and he was an older guy, and he was in one of those cool motorized carts and he was chopping his day away. And he looked tired. And I was like, course I know who this is. My mother had us listening to this kind of sideways young mom, and she always had music play in the car. And I'm like, clearly it was this. And he's like, I was like, it. He's like, he was really impressed. And so I thought it

JJ: 26:08

was Steve Winwood. Yeah, it was.

Unknown: 26:10

Bring me Yeah, hi, Jana. Dennis. Bring me Yeah, hi. Yeah. Moving

Natalie: 26:17

on. Okay. So he tells me, and I did dance, if you're watching this on video, that was what I was doing in the end. BJs. And he tells me that he was a bass player. And then he says, but I don't do that anymore. And I'm like, why not? And he goes, because I've moved on with my mom, and I'm a caregiver for my mom. And I thought, holy cow, I must help you. Do you all have respite? And he goes, because he looked exhausted, Jay. And he goes, what? And I said, Yeah, I said, the state has in Virginia, because I'm in Virginia. And And most states have this, okay. There's this is pushed down by the feds. Virginia has a $600 credit for respite. And, you know, I know people who are listening who have done this and have bought respite be like, well, that's gonna get me six hours, maybe. And I'm like, doesn't matter. It's free, free money, then take a kid, show me the money. And so he goes, I don't know anything about that. And so I said, Okay, well, let me help you. And he goes, I never thought I'd be cleaning my mother who has to wear an adult diaper. And that's what he said. And I know it's in a brief but let's just say he said, and I said, I think I can help you. And of course you do. And then I gave him my phone number. And I'm like, well, he needed some help with his mom, surely. And he goes, How do you know he's telling you the truth? And I said, because he has that look. He looked, he had that caregiver look of weariness and exhaustion. And so yeah, and I will tell you this, I have talked to Charlene numerous times. And Charlie invited me over to her house. At this point, I'm not sure I, I connected her with our friend Janet Brennan at the Area Agency on Aging in the New River Valley. Because like, she's our person she was on. She's had two episodes with us. And she's so great. And so we're helping her and it feels great. But I just like you can't have we're all caregivers. It was the whole thing. And I decided I probably should get some business cards that's like, need some help. I can help a little, like, I don't know, at all, like we don't know at

JJ: 28:32

all. No, no, no, no, let us get you to the right person that can help you. Yeah. So that was that was really important. So that's the state of Virginia. So I mean, 600 bucks. I'm all over that. I'll take care shameless. So who else? Because I know you're in this. So briefly, like who is on the money? Who is who's who's helping. Okay,

Natalie: 28:55

people now we got some advocacy stuff here. We're gonna talk about real quick. All right, this is gonna be fast. I've got two minutes before our commercial

JJ: 29:02

break. Yeah, people need to know if they're in the state. They've got some options. All right. So

Natalie: 29:07

here's the thing there. We all know. 53 is the magic number 53 million unpaid caregivers in the US per a 2020, AARP. So we all know that. That means it's almost five years since they did the study, because they probably did. It was published in 2020. So it's probably closer to 6060 65. I think it's still underscored anyway, and it's supposed to be 75 million by 2030. It'll be well exceed that. And those 53 million people are providing more than $600 billion in unpaid care for their loved ones. And so that feels and so basically, if you're a caregiver, you're part of the staffing plan. There are so many kids, thank you. You're part of the staffing plan. We're relying on you. And so it is time and I can tell you hello, Texas. That's I'm smiling at Texas right now. They absolutely have their They absolutely plan for the amount of unpaid care as a part of their budget. It is it's literally in their statistics. Today, we our budget is based on this. And we anticipate this number of unpaid caregivers to do this amount of care. And I'm like, What the heck? What? What? What is wrong with you? Like, you are totally doing it on our backs. And here and here's the best part. Okay. So you would think within Texas must be taken care of their caregivers, like many of the other United States, okay, so we're just going to talk about the US on this one, our European friends, okay? The average cost to caregivers out of pocket, don't laugh J $7,200. That's how much the average cost is per AARP. We love our friends at AARP. Okay, because they give great stats. And what does that and I can tell you, we have spent astronomically more than$7,200 a year on our mom and on my husband, right? Like, that's cute. That's cute. And so here's the thing. There are six states who have tax credits for people, okay. And if you live in one of these states, they love you, they see you, they value you, and that is Montana, North Dakota, Missouri, Georgia, South Carolina, and New Jersey. There are a handful of states right now going through their legislature, they're looking to do caregiver benefits or tax credits. Okay, they're looking to do that. And Virginia was one of them. And it didn't pass. And it was only for $1,500. It was originally. And I think it actually got pushed back to 1000. And I'm like, really, really. And so most states, I know that Minnesota was looking at $5,000 tax credit this year, and the Feds now here's the good part. The federal government in legislation right now through the credit for caregiving act is looking at a $5,000 tax credit. And so that here's the thing, this is the way that it would work. Okay, so this is important, talk to your representative because this is really, really important. Okay. So it is, it is expenses, you have to this is what I'm going to read it TJ Okay. Family Caregivers would have to document what family caregiving expenses they've had out of pocket above $2,000, to qualify for the credit, okay. And so after two, you want to you have to demonstrate this, so you have to keep your receipts. And this is really important. The bill would help cover some of the more than $7,200 that families spend on average, each year on out of pocket costs such as home care aides, that's respite, those are people who can come in your home, adult day care, we've got member Chris, Chris is doing some awesome stuff down in Florida, they've got a really awesome, that's a really good adult day program, respite care, transportation, home modifications and all kinds of other supports. So there are other kinds of supports from the state. So just keep in mind, there are under long term services and supports for your respective state, there can be up to upwards of 1600 there can be I think one state has as high as $8,000 in home modifications to try to keep people in the home setting so they don't have to go out of home. So definitely, definitely, definitely check this out. But here's the thing I'm going to say to you guys, please, please, your voice matters, and advocating to your local state and federal representatives. It matters. So that's what I'm gonna give and Jay. I know we're going to transition the next section because we have to take a break. Oh, okay. Okay. All right. Hey, ladies, I need to interrupt for just a second to share about the sisterhood membership. It's basically a sale every day. And the best part, it's free. Here's the details. We're partnering with our friends at benefit hub and other care partners to save you money. With over 200,000 participating companies across the US and abroad. You'll find discounts at your favorite local stores, huge savings on vacations, amazing deals on home auto and supplemental insurances and everything in between. Go to Confessions of a reluctant caregiver.com to sign up. And then definitely tell your friends about it. They can join to trust me, there's a discount for everyone. And don't forget, it's free. Okay, back to confessing

JJ: 34:46

okay, hey, everybody, we're back. And we're talking about what is it like fighting for your rights? That's what I feel like.

Natalie: 34:53

I feel like a little bit of the Kelsey brothers. We'd love to have you on the show. By the way, you Jason and Travis Kelce like you got to fight for you Right to party. That's when Jason Jason loves to say that and I actually think Travis says that as well. We love you Kelsey brothers because we're sisters. I mean, we get a got they have parents. Yeah. They have parents. They got their hands anyway, their parents were fantastic. I'll say brothers, we would love you anyway. Keep going.

JJ: 35:14

Yeah. So here's the thing, and I just want to pop on this really fast. All legislators, they have emails. Oh, yeah. I mean, and I know caregivers are super busy. Some of them may have text messages.

Natalie: 35:26

I bet you they do text? Yeah.

JJ: 35:28

I mean, one minute, just start firing off some emails, tag them

Natalie: 35:31

on Facebook. Tag. Everybody's got social media, except for tick tock, because we know what's going through the government right now. But everybody has this. Reach out to your legislators and it does not. You can say I'm not sure what to say. It's simple. I'm a caregiver. And I need your help. Because I am I am.

JJ: 35:51

I'm going banking,

Natalie: 35:52

I am sinking I am drowning. I need the financial support. Any amount. Helps. Exactly. That's all you gotta say. You gotta say I'm a caregiver. I'm a caregiver. And I vote. And guess what? Women are the highest voters. Women vote we've been more than men. Yeah, they should be concerned. We're in a voting you're J. And those are how you vote individually. Yeah, you let both parties know, this is important because this is a bipartisan issue. Okay, now we're gonna get off politics. Or like, I don't like politics, but I'm telling you people now we want to make change. You got to you got to have your voice heard.

JJ: 36:27

I figured that out. Yeah. I mean, we're not going to be hidden anymore. Now. We're not as quiet caregivers. We're gonna be we're kind of mad. We want to be heard. Dang it and we're gonna sing. Okay. So we

Unknown: 36:39

are about like, okay. Okay.

JJ: 36:41

Okay. Yeah, cuz I mean, we've got a ton of fire. Okay, like, Okay, we are on fire. Like, this is like soapbox episode. Okay, so we've talked about it, it has helped. So we've tried to give some education. But there's other things that we feel like it has helped. And I want to tell everybody that I, you know, I always say we started this in the hopes that we would help others other than, you know, our family members who we hoped would listen. But we get people that will send us a short email or though let go writer review, which is like, we get it and we're like, wow, that was so nice of them. But you know, in the last three months, I am not gonna get Terry on this, you're gonna get a sandwich again, I know, I got this message from a college friend on LinkedIn. I had not talked to her in over 25 years. And she sent me a message that said, thank you for your podcast, it's helping me. She's caring for her mom. And then I got a message on Facebook, from this lady that I went diving with with a group diving experience down in Honduras. It's been 10 years since I saw her. And she said the same thing. Thank you for my pot, your podcast. I'm taking care of my mom. And it's hard and just thank you. And I was like, Oh my gosh, and never like even thought that that these people would, I don't know you don't think about it. But I always say hope that's Abla someone but I need for everyone. Those listeners out there. I get as much or probably more. I think it's healing for me.

Natalie: 38:14

We always get so much more. We I feel so selfish that we get to do this. I know. You feel selfish. I mean, it's a meal again, Emily can tell you, Natalie, it's always about you. And like I know. It's it's really not a promise. I'm not this selfish bagel.

JJ: 38:30

I know. It's such a blessing. So there's a big thank you out there. I just wanted to say thank you. So. So let's there's something else that we've moved into, is that we're going to, we're going to get some time in on after care, because we've moved into three stages of aftercare right now three situations. And we're going to first of all, we're going to talk a little bit about Emily. I mean, she doesn't mind we've

Natalie: 38:56

talked about her all her life. Emily's not here if anybody was wondering, JJ and I are talking so much. You're like, where's Emily? And it's because she's not here with us right now.

JJ: 39:04

That's right. And so when we decided to place mom in the skilled nursing facility that was in March of last year, Oh, can you believe it's been a year? No, it has been a year. It has been a year when we did that Emily had been a full time caregiver for mom 24/7. And that was a hard decision to make. But after that experience, some people are they're resilient. And they they just they're they're ready to get on with life and they want to talk about their experience and they can share it. Natalie and I are comfortable sharing the mess of it. Emily cannot she does not want to talk about it. She wants

Natalie: 39:41

to forget it. She wants to forget it like Jason wants to forget his cancer it seriously because Jason said, I don't want to I try not to think about my cancer and I'm thinking all you do is it consumes you and your efforts to not think about it and Emily really does. She doesn't want to talk about it like she it's not that and I think this is important. She wants to do what she needs to do to be a part of taking care of her mom. But beyond that, she doesn't want to have conversations about it, it like in this kind of setting, like talking about it all the time, I think creates a lot of anxiety for and of her own feelings of the role that she's played in caring for her mom, I have my own feelings about the role that I play in caring for mom and Jason and I have my own feelings. And so and and they're all valid there, but I'm going to validate your feelings. And no, and we're just going to keep telling you, you're doing the best you can. You are enough, you're good enough.

JJ: 40:43

But with that said, there's going to be some changes around here

Natalie: 40:48

with the sisters. Like I feel like we're Catholic, but we're really Baptist.

JJ: 40:51

I know we're not. Because everybody it needs to be extended the hand of grace, and you need to be able to do life the way you can do life. And so it may step in when she wants to that she wants to. We welcome her always but right now she is

Natalie: 41:11

I want to say away. No, I don't even think it's not right now. Emily is stepping away. Emily's Emily's stepping away, and Emily might come on. And if it's her choice, and it feels good to her, then she can do that. But this is it. You know moving forward, it's really going to be JJ and I know there's massive disappointment, because Emily adds and even though she doesn't say a lot. Emily's perspective is so important. And but we love her and we love her as as we should. And we accept her decision. Yeah, absolutely. So I think that's really important. It shows you and has caregiving changed our relationship. It has an s it has. And even the even the conversations around trying to coordinate care for mom. I mean, it's hard. They're hard conversations to ask one of us to say, can you change your job. And the way Emily gets paid is, is if she doesn't work, she doesn't get paid. And so to ask Emily, so let's go to the $600 billion of of resource that we're covering. Emily will lose money, because she's taking care she she isn't she's not taking PTO. She's not taking PTO. She didn't have PTO. Yeah,

JJ: 42:32

she works as a 1099. She works as a self employed. But that's the thing. There's so many people out there. So your$600 billion. Like, I hope that counts, like all the time that everybody has to take off.

Natalie: 42:44

Yeah, that's the thing, the money that I didn't like, not how much and that measly $15 an hour that they're counting the 600 billion to guarantee it's based on the six $15 an hour. And I'm like, I can tell you right now, I ain't $15 an hour. And it doesn't matter whether you're more or less, but it's just not what I want to say is it's not an accurate reflection of the actual cost, because of what she will lose out on making. And she made that choice. And we are grateful to her for doing it. Because JJ and I can I'm four hours away, JJ is 18 hours away. And we would have figured it out. But it always starts with family first and then you work your way out. It's

JJ: 43:25

just you figure it out. Or you have to cancel the appointment where you can't say our choices. Yeah. And

Natalie: 43:30

it sucks. And so anyway, so Emily is is Emily will not be you won't hear there may be times that she jumps on if that is what feels good to her. And we respect her and we love her. And we'll continue doing the show exactly the way we do it.

JJ: 43:46

So next aftercare. So you've got aftercare going on. So care has not stopped. So let's talk about Jason, for God's

Natalie: 43:58

sake, Jesus take the wheel. So I will tell you this, I can't believe we're going to guys, I'm going to tell you, we're going to close out the show in about four minutes, because we do about 45 minutes, and then we're going to have after, after the confession, we're going to keep talking. And so we'll publish this for you guys. We're coming up on two years. We're coming up on two years, that J of Jason's last treatment. And the last two years, June we go back up to Memorial Sloan Sloan Kettering, and we have the last scans and there's so much fear in this. I don't feel it as much. I think I just compartmentalize it, and I just put it over in a corner. And I'm super Pollyanna. I'm hopeful. I fully believe Jason is going to be great. But the reality is, is Jason lives with it every day. I think there's like little teeny cancer cells that can't be detected they're just having they're in this in his body. I think that's how we both see it. We know that it's there. We know it can come back we know that it's it's we feel that And we don't know when. And we keep trying to live our lives. And it's new normal has been really hard. But it's the conversation about the mistress because I refer to cancer as the Mistress. She's always with us. But she has been sitting right between us because the closer we get to June 24, is when our appointment is in New York City. And I'll be putting that on rails, PayPal, you're gonna see us because I'll make the announcement on social media, because I think that's worth telling people good news, I plan on good news. And if we don't, if we don't have good news, then we know exactly what we're going to walk right back into, and we're ready, like, I'm ready to just, you know, throat punch cancer. And, and that's how I feel about it. I'm gonna throat punch. I'm like, like, stabbed in the neck seems a little aggressive today. But when anybody thinks about cancer, that's what you want to do. You just want to fight it off. You want to get rid of it. And, and so, but Jason's very nervous, and it's affecting his sleep right now. And when it affects his sleep, then he's grumpy. And when he's grumpy, it makes our marriage harder. And I'm grumpy, and I can't do anything about it. And then so we have to be very, very tolerant of each other. And we have to name the fact that we're struggling. We're struggling right now. And people who are like, Oh, no, it's great. No, no, your if it's great for you, good for you. But I think you're lying. I don't believe you. I hate to say that. I don't believe you because one of the two people or any person involved is struggling on the in their own way. So

JJ: 46:35

yeah. So recommendations though you guys have been able to get palliative care through your insurer. Gosh, guys,

Natalie: 46:42

I'm going to tell you palliative care, I asked, Oh my God, we should have had palliative care when we were in active treatment and palliative care is not hospice. Palliative care is meant for comfort and to help navigate the system. And we have Janie, oh my gosh, we love her. And I don't mind to say it. Our insurance is our bots. And AI which is anthem, and Janie is providing that service and it doesn't cost us anything. It's a magic Cole. We have she has helped us navigate through things. And she not only supports Jason, but she's also supported me. Okay, we just like need two episodes, right? So we're gonna we're gonna end here, we got more than we got so

JJ: 47:26

much more. More aftercare and I'm kinda we got some funny after oh my god that we're gonna talk about the Holy Trinity, Jesus, Joel, and J. And I'm

Natalie: 47:36

also going to talk about my mammogram, and

JJ: 47:40

I'm going to talk about my bloodwork. Like how we suck at taking care of ourselves. As I didn't pass out though. We're going to talk about finding notes. Around come back. Yeah. Okay, guys,

Natalie: 47:51

come back. Thanks so much for listening. Stick around. Please listen into the next our after the confession. You're gonna really like it. It's even better. Alright guys, thanks so much, guys. Bye. Girlfriends. 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 sister's night at Confessions of a reluctant caregiver have taken care in selecting speakers, but the opinions of our speakers are theirs alone. The views and opinions stated in this podcast are solely those of the contributors and not necessarily those of our distributors, or hosting company. This podcast is copyrighted and no part can be reproduced without the expressed written consent of the sisterhood of care LLC. Thank you for listening to The Confessions of a reluctant caregiver podcast.