Messy Caregiving with Sisters Natalie and JJ

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I embrace the messiness. I’ve lived my life with a lot of structure and caregiving doesn’t necessarily align with that

Caring for aging parents or other loved ones while working, raising Children and trying to live your own life, wondering how to find the time for your personal health and happiness. Well, you’re in the right place. Welcome to the Happy Healthy Caregiver podcast to show where real family caregivers share how to be happy and healthy while caring for others. Now, here’s your host, Family Caregiver and Certified Caregiving consultant, Elizabeth Miller.

Everyone. Thanks for tuning in to the Happy Healthy Caregiver podcast, which is part of the whole care network. If this is your first time listening, welcome. This is a show produced biweekly to help family caregivers integrate self care and caregiving into their lives. The Happy Healthy caregiver podcast, along with all the other podcasts on the whole care network are also available on the new WCN streaming radio channel. So there’s an app that you can download to get access to that or you can find details on Whole Care network.com. Each of the Happy Healthy caregiver episodes has an accompanying show notes page. So anything that we’re going to talk about today on the show, we are going to link to it in the show notes page. You’ll find that by going on to the website Happy Healthy caregiver. com, go to the podcast menu and click the image or the episode number for today’s show. The link for the show notes is also going to be in your podcast platform, episode description. So you’ll find it there as well. If you aren’t on the Happy Healthy caregiver email list, you are missing out every Tuesday. You’re gonna get a weekly roundup, which includes tips under the pillars of happy healthy and caregiver. Plus, I’m going to share upcoming events that I learn about special offers and more. So get on the email list and you do that by going to bit dot Lee forward slash hh CE news.

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For this episode segment of what I’m reading. If you want to get swept up in a captivating mystery, and you want to read a book that’s going to pull you in to read because you’re going to want to discover who done it. Then this recent mystery that I read as part of my book club is going to be a good pick for you. It’s called The Shadow Box and it’s by author Lo Anne Rice. It’s about an artist that was attacked and left for dead in her home and she has to find out who is after her all on her own because she really is finding that she can’t trust anybody in her circle, including her husband who is running for state governor. I gave it 248 stars. I rounded it up to four out of five on good reads. I will link to it in the show notes. My favorite thing I want to share with you in this episode is on Netflix. Frankly, there are some shows on Netflix that when I see a new season pop up. I drop everything to watch it. And the eighth season of the show, Queer Eye was released recently and I was reflecting on why I enjoy this series so much. And I came to the conclusion that the majority of the episodes feature family caregivers and teach them about self care. So it’s no surprise why I’m attracted and drawn to this show. This eighth season is really no different. You’re going to meet real people in the New Orleans area who have sacrificed too much to care for others or they have been in a funk due to grief or loss. You know, each episode is going to end well. So I also love that and the fab five take care of them to address the different categories of self care. I’ll link to where you can watch the trailer for season eight to see if this is a show that you think you would enjoy.

Let’s meet today’s caregiver in the spotlight. We actually have two caregivers in the spotlight today, which is something kind of unusual for the happy healthy caregiver podcast. Natalie Elliott Handy and JJ Elliott Hill are sisters and together along with their third sister, Emily, they manage the care for their mom who is living with Parkinson’s disease. Natalie is also a caregiver for her spouse, Jason who receives palliative care to help navigate his cancer journey. In this episode, we discuss all the total messiness around family caregiving. We talk about letting go of perfectionism, getting access to our parents finances the benefits of palliative care. And both the sisters confess their guilty pleasures. Enjoy the show.

I have been looking forward to this conversation with you both Natalie and JJ. And I gotta tell you like right before this, this recording, this like I have, I’m basically caring for a geriatric dog. So he turned 220 years old this like yesterday or two days ago and he is peeing all over my house. And I like, just found two spots, like right before I came up here and yeah, I had some choice words with my husband about like, I can’t be the only one that remembers to take him out like every two hours. So I’m not sure um, where I was going with that. But I just want to say like I was like, oh, I know that my conversation with the sisters is gonna, like, turn my life around today. Well, I mean, we’re happy to tell you that we’re going through menopause and at any moment we could find spots of pee in our house. So there’s no rules, there’s nothing I get it. I mean, I’m, I can give you all advice on that because I’m beyond that. So nice. Yes. Interesting. Although it’s hot up here. Like that’s the other thing. It’s like 257 degrees today in Atlanta. And I’m like, is the air on, like the dog peed is the air on like I’m spiraling, help me. So anyway, this is the inside view of what’s going on. But let’s get us back on the track. So this is the happy healthy caregiver jar. And so we kind of just like to always kind of put ourselves in a mindset mood here um of trying to focus on our health and happiness and remember how grateful we are and to live this life. But here’s our inspiration today. Let’s, let’s hear y’all’s tips on this. So it says action alleviates fear and worry. Ask a friend to join you at a local meet up volunteer for a cause you believe in, see what happens when instead of getting lost in the oh nos and what if you take action to support what matters to you? Um And I stole this, lifted it off of a I listened to some of her, her podcast called Soul and Wit with her daughter, but it’s Courtney Carver is her name and she’s just all about like simplifying life. But what are your thoughts about taking action, alleviating fear and worry helping you with the oh nos of life. Mm Jay, you go first. I, I know she was gonna be like, OK, Jay go first. OK. So I’m a big believer in action, but I’m a big time procrastinator. So let’s throw that out there first. But it seems like always when I take the action that at the end of it. I’m like I should have done that a lot sooner. But my action that I really need to focus on is I need to focus on the joy of it all. So, you know, you said going out with a friend or doing something like that, picking very strategically. So for me, my action is finding that little nugget of joy in everything and then that’s my, that’s my motivation. So that’s my thought. Natalie. Is there any action that you guys need to take to alleviate any fears right now? We got some things going on that feel pretty scary. Like, but I think um we have to move forward with faith, we move forward with everything that we do with faith and that every door that opens up, we’re going to faithfully walk through it. I love that. I love how faith is a cornerstone for y’all and that it’s like, I mean, it’s, it’s, it’s we need that we need hope. We need something to kind of hang on to, especially when things are feeling kind of dark and bleak at, at moments. Um Well, I appreciate you all giving your, your thoughts on that and let’s, let’s dive into you like I know you all and I don’t know who might be out there. That doesn’t know how fun you all are. But just in case um share, share just a few minutes like how you all just joined this family caregiver club and couldn’t wait to get into it. Like, what is the story? And maybe like, you know, I was telling the ladies on the call, like I haven’t done too many where we’ve had multiple people. So maybe JJ, you take mom’s story and then we’ll, we’ll do. Natalie will take hubby’s story. How’s that sounds good? All right. So I’ll start, our mom is 256 but she’s been living with Parkinson’s for 210 years and um our dad passed away at 153 and we like to tell people he was our plan for care. And that’s, that’s what we always thought dad’s gonna take care of mom. Um, was always in good health. And so at mom was 215 and we inherited her. Like that was the easy thing to say. There was no planning, there was no power of attorney, there was no will. There was no um there was no financial powers of attorney. There was nothing, it was mostly none of our business, none of our business. So, yeah, but now Natalie, you know what this did all of that and all of the things we’ve learned over these years of, of our year of podcasting was like, get that ready. Now, you need to have this stuff ready. Um So that is, that’s a big, that is a big tip for us is share that with everyone. But, you know, we always thought that was the plan we had never discussed. We never thought about caregiving. That was, that was not a word for us. And so once that happened, mom, pretty much, she stayed by herself. Her Parkinson’s was advanced but she, people in the community took care of her. In 2100, she had a, a large issue with, she called had what was called a uh Parkinson’s psychosis, which doctors weren’t talking and they overmedicated her. And, uh at that point in 229, that’s kind of when we really took over full time for mom. Um and, and during this, this is like the hard part uh from 2019, even to today, we’ve gone through uh trying to keep her at home three assisted living facilities. And now we’re in skilled nursing. And so that is, that is kind of the, the meat of it all and the guilt and all of that tied into that is why we are messy caregivers. But that’s the truth I think about all caregiving. But we blend that in actually with Natalie’s story about caring for her husband, which is really how the podcast got started because we all in caregiving. Our stories are similar. So uh yes, messy is the exact word I would say messy and you know what, I embrace the messiness if you don’t. And as a type A, I’m very much a type a Elizabeth. And I’ve my entire professional career, I’ve been in the mental health field and I’ve been in leadership or executive roles. And I’ve always had to have the answer and I’ve always had to make sure that we were in control, that we were in, in control, equal compliance, right. Compliance with regulations, compliance with licensing rules. And so I’ve lived my life with a lot of structure and caregiving doesn’t necessarily align with that. And so I quickly found that out when, um, my husband was diagnosed with a head and neck cancer, it was an HPV related cancer that we found out had probably been in his body for over five years that his body just couldn’t find out. And it’s very common. Um, and so, and there’s a lot of shame around even that being HPV because people automatically think, oh, sexually transmitted. And, you know, of course, it was interesting. The doctor said, don’t tell your wife that you, you know, you could have gotten off a toilet seat and I’m like, well, thanks. That makes me feel better. Um, and so, but the reality was is that there shouldn’t be shame in, in a diagnosis and because he always qualifies the statement with II, I never smoked and I barely drink and I’m like, it doesn’t matter. You have cancer. You, you don’t, you know, it’s like, so that was a little hard. But, um, we went through that entire journey getting second opinions, moving to New York City. Um, I was, you know, I sacrificed in the sense of for the best treatment. We moved out of state and I knew no one. Therefore, I knew everyone because no one was immune in New York City to my, to my conversations. I am a social butterfly. And so everyone at Trader Joe’s, if you’d like to sponsor this episode, you can um everyone at Trader Joe’s, everyone at Morton Williams, everyone at MS K or Memorial Sloan Kettering. I knew everybody. And so it was, it was the hardest time in my life and I never self identified as caregivers. We, we never identified as caregivers until I got back. And when I came back, I couldn’t figure out what was wrong with me. And I, I explain it like I, the whole time I was with Jason, it, it was like a bipolar high and that’s her husband, by the way, not my husband, Jason. Oh, that’s terribly convenient. And your daughter’s name is Natalie so terribly convenient. We’re besties. And so, so I think, um, I think that’s probably the biggest thing is that, you know, I didn’t realize what that was gonna ha how, what, how it was gonna affect me. And I worked the whole time I talk about this on our podcast. I worked the whole time I took 3.5 weeks off in the 10 months of total kind of total active treatment and they were never consecutive days because I was an idiot. And so I thought, oh, I’ve got to please everybody. So this mask of perfectionism. Um, that sort of idea. So we come back, I tell the sisters, I’m like, I don’t know what’s wrong with me. And then something like, caught my attention and I’m like, I think I’m a caregiver. I think I’m having caregiver grief who has grief after their husband survives. That’s crazy. Like, that’s stupid. And then I told, and all at the same time coming back, we’re moving our mom making decisions of where to place our mom. So Emily and JJ were taking the lead on uh mom’s care while I’m caring for my husband and they’re caring for me at the same time. And I mean, it doesn’t surprise me because I feel like when you were in that action mode of caring for your husband and this stuff was going on with your mom simultaneous. Like if you didn’t feel like you had the space to kind of like unpack and unravel like you just had to, you got, you were the glue, you had to like, keep it all together. And then when you got back, I’m sure it was grief, but it was also so this relief and it was like, ok, I can, I can maybe feel the feels a little bit and, and let go. And luckily you have sisters and I have two sisters and love, you know, they’re my people like that will love me no matter what is going on in my life. And so, um, so grateful that you, that you’ve got each other and that it had a, it has a good part of this story. But how have you, I mean, kind of back at you, Natalie. Like, what, how did you cope with? Because I think that perfectionism and that productive productivity mode is like, and I know my older sister, like we’ve had this conversation like her, she can kind of um and will admit this like she’ll avoid the feeling of feels by just kind of keep doing, keep cooking, keep, keep doing and cleaning and, and this and that like, how do you, how did you break that perfection? I can’t even say it, perfectionism um in caregiving and just in life and just allow the life to be messy. Like how did you get there? Oh, it was hard. It was hard. It was a lot involved. A lot of tears and a lot of self reflection. Um I am probably, I, I like to think I’m the only person who argues with a cancer patient. It was me. I argued with my husband but he pushed me and I talk about this and there was this time and I call it day six. So I used as many strategies because I train on, on how to regulate. I train on the brain and how to, how to calm and deescalating. But when you’re in the middle of a crisis, I don’t care all 25 years were, was really hard for me to, to do and, and put those, those interventions into place. But I did a lot of journaling and it was, I wouldn’t have identified it as journaling. I was updating people on the caring bridge site. I love you carrying bridge. So what happened is if you saw my and my, my actual carrying bridge is completely open. If you look at the carrying bridge and you see as the days go by, it transitions from updates to updates and how I’m feeling. And ultimately, I used it as an open journal that was and I only invited certain people to come in because it was too much anxiety for me to I I it became a job of just updating people on how Jason was doing via text. I’m like, it’s not my job to tell you I totally get it. We had big family, we used caring Bridge for my parents. And um you know, I don’t know why I don’t think they would use it even for like my brother. You know, it’s not, it’s not like a dire straits kind of situation. But um it is a nice thing to kind of go back and have this historical reference of like what happened and what you, what you’ve kind of um you’ve lived through and survived and, you know, kind of throwing it back to you JJ, like you mentioned earlier about how you’ve moved mom and you’ve gotten to experience like all these different um areas of caregiving where, you know, you’re, you’re, you know, living with, you. Look, she’s living in, she’s living independently, then she, with family and then she’s assisted living and you know, all of that. Like, what is that been like? Like, what is that trajectory? I’m laughing because JJ, so here’s the thing because like JJ is gonna answer JJ is the oldest JJ is in charge Emily and I follow J J’s lead. So that’s really important to JJ that you’ve got a lot to. So these little guys look at her. Well, there, you know, I could laugh and say, we laugh and say, I’m the one also that feels the most guilt. So I feel like every step that we’ve taken, I’ve like, I really screwed that one up and they’re like, the sisters are like, no, you didn’t. We made the best decision we could and then I take it home and you know, I find a place that I can cave. I’m not the super social one like Natalie, I’m not out there, I’m the one that caves and has to kind of regroup and say, OK, we did the best we could do at that time. But uh but after uh after the, the, the issue in 2019, we actually had to take mom and she’s open about this as well. She had to be admitted to a psychiatric facility and it’s so frustrating because the doctors, you know, initially when you have her in a hospital, they say, oh, she is mentally ill. Well, she’s not, she is actually she has Parkinson’s and you have created this situation with medicine, which is so frustrating because so many times mental illness and an illness because of this mental what looks mental illness is actually because of a, a sickness. They’re so they’re confused. And uh so, but that was once we got her back from Florida, she came to Greensboro, which is where I was at the time. And one of the reasons she did that was because I was employed for myself. I own my own business. So that was going to be an easier route. It was, we thought you had flexibility in your brain in theory. Yes, I was trying to run my own business but she was, you know, mom’s still cognizant and uh she’s fine. You know, she has a little trouble getting around. We put her in the one in Greensboro. What I did not know I should have taken her phone away because she would call me like constantly and she would be like, hey, I’m out of Cheetos and I would be like, hey, I’m gonna come over there and like, shoot you if you call me again. She texts too, she texts, she texts like 17 times in a row and i it’s an, it’s an emergency or an emergency or, you know, Hershey Bars and she would be like, can you visit me today? I’m like mom. I was, I was just there this morning and I really, like, I have a family, I’ve got to have dinner with my husband and it’s so hard to balance that I was close. But again, I still had to try and balance that with my family. My kids at, uh, at, I was at a breaking point. I got to tell you that and um we had no other family that was there in North Carolina and all of our family is in Tennessee and that includes my mom’s siblings, um all the people, she went to school with all of her church friends. And I remember calling my aunt Jane who is a real confidant for me. And I said, I don’t know, I don’t know what I’m gonna do. I mean I was broken and I think that’s so important that you have someone that you can talk to that, that openly. And she said to me and I’ll never forget this. She said JJ just bring her home. And it was like the most, I don’t want to say it was freeing because I didn’t want my mom. But I was like, II, I can’t do this by myself. And we say, Nie says, you know, the Lord knew what he was doing when he gave our mom three daughters for people that do this alone. I don’t know how to tell you how amazing you are because I couldn’t do it alone. And I had this, this, this aunt who’s, you know, 1003 at the time and she said, just bring her home Jay. And so we got her in assisted living there. Um And then the pandemic hit, the pandemic hit. Yeah, just at the perfect time. That was a hot mess. She stayed there for about a year and a half, primarily because of the pandemic. Um, mom has, she has issues because of the Duopa uh because of the medication for Parkinson’s. And at a point they said we’re not able to meet your mom’s needs, which was you, we’re gonna have to leave and then we got her. Yeah, she’s outgrown it. And so we put her in another assisted living facility and she lasted there about four months. And then they said she’s, we’re not going to be able to meet her needs and we love it. We love to say this. Um, the reason why they weren’t going to be able to meet mom’s needs is because she threw a cup of coffee at her roommate because the roommate was stealing her chocolate. She had Alzheimer’s the roommate did. But, but our mom and this is, this is why this reversal of parents and Children. This is, this is how insane it is. I call mom and I’m trying to have this, this serious conversation with her mom. What happened? Mom? You can’t throw no coffee at other people and she says, but Jay, it was cold and I’m like mom. That is not a reason. It was not you. Um, at that point, we decided, uh we put up a group vote and against Natalie’s best wishes. We move mom in with our youngest sister. We got her a condo and we did that and that was, that was hard. Uh Emily being 24 7, I don’t think any of us had an idea of what that was because of mom’s condition that, that lasted for us about seven months. And because of how mom had, had really started to deteriorate and in her, because of her illness, we made the decision to move her into skilled nursing, uh, last March. So we’ve been there almost a year. Um, and she, she’s doing better. I think it was, the hard part was coming to terms with. It was, it was the right decision. Um, and what I wanted didn’t matter. It was the right decision for her. Yeah. Yeah. Thank you for sharing all that. I mean, it’s, uh, you know, you just, you’re getting your masters in caregiving here just like learning those things over and over and over again. And, um, and I’m curious, like, with the three of you now and then this past year of, um, with mom and skilled nursing, like, there’s still a caregiving role, I think some people think, oh, well, they just, they live outside of your home. There’s no caregiving that needs to happen and that’s not true. Um Not at all. Not at all. So, Natalie, like, what, how do you all divide and conquer? Like among the three of you? Like, do you have like roles and responsibilities or have you over the years have been like, you own this, I own this or you just kind of figure it out as you go. What does that look like? So, um if you’re watching on youtube, you will notice it says Natalie third favorite and I think that’s what makes it funny. So JJ is the oldest, you can clearly tell. Um and uh I’m the middle, like JJ is the oldest as I pull back my wrinkles. Um Emily’s the baby. And so we all have our own skill sets and we’ve all naturally fallen in line. JJ and I are probably the most type a. We take turns being type A JJ is always in charge, but my skill set is really in regulations and because of my background and stuff like that, I am the person you come in with guns. I am the person that comes in with guns blaring. And I’m gonna, and I’m gonna call commission on accreditation joint commission. I’ll call the state of State of Tennessee and I know how to do it and I know how to do it. And guess what I understand. Regs. Yeah. So you have to use me sparingly. So, uh, Emily and Jason, you’re going in, like you said, because I, I’ll, I’ll make you eat your lunch and I’ll smile as I do it. And so, but I also know that I have to, we walk this, this line because I’ve talked with, uh, you know, I met with folks at the AC L um, on the federal level to say I can’t advocate for my mom effectively for, for the skilled nursing facility or her placements not doing what they’re required to do by regulation for fear that they will move her out. And if I run with them some kind of reprimand for her 100% that there’s retribution. And so the reality is, is that we don’t have good control. You probably feel like that at times if your parent is or your loved ones in a congregate setting, it’s hard because you have to find the balance because if I push too hard on this, this facility, they’ll move her out. And the next closest one is two hours away and it’s not going to punish my mom. So how do you navigate that really sensitively? But I will say this JJ is the favorite. Emily’s Emily’s second favorite. JJ is the one who typically takes all the calls from my mom. My mom calls me if she needs something like for real because we’re the most alike. And so you have to be ok with leaning into the person that you’re caring for. Like, I’m ok being third. I always joke that I’m yellow mustard. J J’s Gray Poupon. I love that. I love that and support them. Yeah, I know one of the things and this is interesting because it came up on our, I, I lead a daughter. org support group once a month. Um, sometimes there’s topic circles, sometimes they connection circles and yes, connection circle. Someone had asked the question about, like, you know, they’re in this space now where they want to take control and they know they need to take control of their older adults. Finances, but like there’s no road map for that. Like, what does that look like? And I know um that you had to do that in your, in your family and, and JJ, can you talk about like how you did that and how you would recommend other people do that? What works and what? Um, so as Natalie said, Natalie is and we each, the previous question you had, we do each have roles. Um, so Natalie is insurance hardcore. She will, she messaged like it’s when I can’t get something done. And I’m, as we refer to the snot sandwich, I call in the Terminator Emily. Is that soft heart? She’s the one that is perfect giving mom a bath or changing her clothes or rubbing her feet and hands. That’s Emily’s heart. Um, but for the finances. Wow, that was hard. I’m gonna tell you one of the biggest, one of the biggest roadblocks was mom because she was completely giving up her independence. There have been multiple times. She said, I think you’re stealing my money. I’m like mom, I’m, you’re look, you don’t have any. I mean, where’s my Gucci bag? Like I’m like mom, you know, and so, and it wasn’t a negative thing but she just thought all this money was disappearing and I’m like, we didn’t plan for this mom. First of all, um, and you just the structure of the health care system and what you have to pay for assisted living and it’s a mess first of all. But, um, I, I will tell you that on the way to the facility in Florida as we’re driving her to get her care, we had a power, a medical power of attorney. That was my Aunt Jane in Tennessee. I’m trying to get to Florida and mom was cognizant at the time and we had to stop at a UPS store on a Sunday in Atlanta there. I should have stopped and tell you I know because she could give all the information that they needed. And on that Sunday, get a power of attorney, a uh financial power of attorney, a traditional power of attorney and uh the medical power of attorney. I had to have her sign all that while I’m taking her to Florida to have her put it in like, uh, I think I need this we had, yeah, we had an attorney back home that had helped prepare it. He had done what he could to explain it, but that is not the way you should do this. But if you don’t, if you don’t have those tools, it’s virtually impossible dealing with the insurance agencies. And that’s the one thing I stand on my soapbox and say, you know, whether you need it or not. Natalie and I have gotten ours in place even, you know, I’m 50. Natalie’s 48. I’m get that stuff in place because it, uh, it, everywhere that I went, it was, where’s your power of attorney? And I’m like, here it is and, uh, get that stuff in place. Slap it down like a driver’s license. Do you? And do you think it’s easier? And that was kind of one of the things that came in the call, like, is it, is it easier to kind of have those discussions with a third party person who can explain? And maybe even if the cognitive thing is a challenge, but it can explain it where it’s not you saying, hey, we need control of this, we need control but having somebody else and that I will tell you that the one that we had for Tennessee when we moved her to North Carolina, we wanted to get it. We wanted her to be fully cognizant and I wanted her. It was a full blown. We, I had a friend that was an attorney that did estate planning. And Laura was a jewel and she said, I want, I want to go in and talk to your mom. And I said, ok, we’ll go. And she said, no, she said this is something that I do with, with aging people all the time. And she said, I want to talk to your mom and get her decisions and her decisions could be skewed because you’re there and she did mom’s living will. She did everything and she came out and she said everything went well. She said, if she asked for you, I absolutely will bring you in. But she said sometimes they feel such pressure that you don’t get exactly what they want. And uh, but ab absolutely. That was good. So then once you have that financial power of attorney, then that’s, you can take that to the banks, you can get access to things. It’s like do this and then the rest kind of, um, totally can fall into place. Um, it’s so hard though. It’s so hard to watch your, these people who are like rocks in your life for most of your life. Like, and then they just need so much, so much from, from you all. What are like, what are that lead with, you know, caring for your mom, caring for your husband, Jason? Like what were some of the silver linings of caregiving for you? Like it’s not all bad. Oh, no. It’s not all bad, some days just feel all bad. And so I think, but so what I had to find and it’s, it’s more for Jason. So I’m going to say this, I think this is really important. I am not as close to my mother and that’s ok. And so the way that I support my mom is, I am the person that gets called in to help with navigating in the system. But I support my sisters and that’s part of the totally appropriate when it comes to my husband. We have no Children. I am the only person that is a very different feel. And so I’ve, I’ve lived with get in as a group team and individual solo. And so I think I’ll say with my, with my husband, the, the moments that I kept looking for the silver lining are almost feel like a little dissociation. OK? And when I say that is, it would be the moments that I would have 20 minutes to myself to go to Trader Joe’s and I would just walk around and I was walking around the city. Um But the moments that we were together that we were sitting at 57th street at Sutton Place Park and we’re looking at Roosevelt Island and the sun’s shining on us. He could only go for about a block and a half walk because that’s all the energy that he had. Jason’s was 56 at the time. And um, and of health. And, uh, and we take about 10 or 15 minutes and we, you got to almost pretend you almost, it’s the moments that you forget that the cancer is there, you forget that she’s there. And that was the problem when I came home is that she followed us home. And I would refer to his cancer as the, as the third, she will. Yeah, she’s the mistress. And so until you absorb, until you accept that this is what our life is like. Um She sits really right in front of you. But when I accept her and, and we just accept that the cancer is going to be with us at some point and because he’ll probably get cancer again, he will, he will very likely because he had had a neck cancer, they radiated his head. That’s not good. And so at some point, but when we just, when we, we move past it and we accept it and stop trying to ignore it and just embrace the situation, it’s easier that it, it his the mistress goes to the back of the room. She fades into the background and she comes forward every now and then because we’re um I’ve been coordinating his, his um I’ve been coordinating his, his two year uh appointments because Jason was part of a clinical trial. And so coordinating 15 appointments with, with people in New York City. And she’s, and I had this sweet young lady send me back via portal. I said all these appointments are over three weeks. We live in Virginia. I need you to put them in two days. Yes, they’ve always done that and she sends back and says, ok, well, I’ve changed these two appointments and you can reach out to the other departments. And I thought not today, Satan. And so I was so mad at first it looked like the cat meme where it’s like really fast typing and I thought that’s not gonna serve me well. So I deleted what I wanted to say, sleep on it for a minute. And I just said I could really use your help in talking to the others. So that way we could coordinate it and guess what? Kindness one and all of our appointments are on two days. But that’s when I put my caregiver hat on and then I can take it back off like I put it on and off. And I think that’s the thing about caregiving is most people don’t see like the roles are very similar. Um So to my wife duties to my daughter duties. And so it’s ok that they are, we can have dual roles and you’re going to wear your hat. Sometimes you wear both hats at the same time and that’s ok. Yes. Oh my goodness. You definitely have learned a lot through this whole process. And you guys, you both are co-host of a, a fellow health care network podcast called Confessions of a Reluctant caregiver, which people can. I know that they’re enjoying this episode so they can kind of get, get more from both of y’all on that. But I got to ask you, I know that you always ask people what their confession is. Um But do you have any kinds of confessions related to caregiving or your own self care that you want to expose here on the Happy Healthy Caregiver podcast? Hm. Oh, you want me to go first? You go first. We always talk about guilty confessions. Like, what’s the guilty thing that, what’s your guilty pleasure? Like, what do you do just for yourself? Because I call that self care. Um, other care is really big to me. Um, I work in the mental health field, I believe in helping other people. So this is why we do what we do. But if you really want to know my favorite guilty pleasure, it is if I can send Jason off to go out on a boys night, quote unquote and he goes out and spends time with his friends and it’s just me and my beagle and my bulldog. And we’re watching the Hallmark channel and I am all about like un unrealistic expectations of men. That is all the Hallmark channel is if we fall in love, it’s wrapped up by two hours, I’d be feeling happy every time and nobody’s there to tell me it’s stupid. And I’m like, suck it. Yes. That is my, that is my go to every time. How much of that JJ your turn dump? You don’t have a lot of things that make me happy. I was just thinking about that. Like I just, I have a lot of things like, I like to cook and all kinds of stuff like that, but I love to give stuff away. Like, even if it is like something small like that, like my kids love this uh this pineapple cake, but I don’t want to eat it. I wanna give it away. Like I love to just give things because there’s something about the joy that you see when you give something to someone else and it could be nothing like it could be just something small and somebody’s just happy. So I think you say that’s a guilty pleasure. But for me, it is because sometimes you don’t really have the time or maybe you don’t have the resources to do that. But you always have something that someone else will enjoy more than you are or they’ll use it more. So, you know, I like flour, you know, said notice that JJ still is serving other people. It’s interesting. I mean, it is, it’s like she didn’t have enough caregiving. She’s more, she’s take care of more people. Um But I get it because I think it, I think it’s probably it gets you out of your own head and that kind of can like, oh, there’s a whole big world out there. Like, it’s not just, um, you know, it’s not just about me and in my little world of what’s going on. Um, so interesting. Well, let’s talk about self care a little bit. So, you know, one of your, one of your things I think that you had shared with me is that, um, that you need to take care of yourself and specifically like medically like, how did, how did this revelation come about? That is my soap box and I’m going to get on that. I’m gonna climb that ladder. Um Da da da. So in the midst of all of this and we’ve seen it happen before. Um, but it’s recently happened to us is that as a caregiver, you don’t take care of yourself and we’re not talking, you know, yes, you should go for a walk or yes, you should try to relax, take breaths, meditation, but you actually physically do not take care of yourself. You know, I’ve heard so many people say they’ve gained weight or they’ve done this, their diabetes have acted up well, for me, I have um a lot of vitamin issues, absorption issues with vitamins. I haven’t had my blood taken and I hadn’t done my annual physical in forever. I go get my physical about three weeks ago. It just so happens that my iron is really, really low again. And now I’m putting two and two together, like, oh, that’s why I’m so tired and cold all the time and I live in Florida. But one of the main problems that my soapbox is up is because Natalie had not had her mammogram. And how long Natalie, I mean, it happened to be seven years. Seven years. Yeah, I sucked. I got yelled at by everybody and, and you’re a cancer survivor. JJ. So I don’t know what type of cancer but she’s the girly parts, the ovarian, the uterus area. I kept thinking, I kept thinking it’s not a problem. Our always the, you know, girly down there part, not the booby parts. And so I’m like, you know, and so I had a mammogram done a couple of months ago and, uh, and that was super amusing. Honestly, somebody should record me talking to all the staff talking about making them feel uncomfortable. But, um, so we had fun and until we saw a shadow and then I go to have more scans and I’m told that I need to have this needle biopsy. And fun fact JJ and I, um, sort of pass out at the whim of any level of pain. If the wind blows and it feels uncomfortable, we sort of pass out. We’re fainting goats. And so I typically like to have my hand held when I give blood. I’d like to have my hand held any time and just talk to me a lot. But I go, um, Jason was so mad at me. My Jason was so mad at me. He was so scared. He was giving me more anxiety from his fear because of it because he was being triggered. And, but, and, and so he said to me as I’m, as I’m walking in the door, did you get your next one scheduled for next year? And I’m like, if you don’t zip it, I’m gonna kill you. He’s gonna put it on his calendar. He has it on it. Is, it is on his radar but I had not taken care of myself. I had, I did not see the doctor. I did not do any of the things I was supposed to do. I made sure he was cared for. Yeah. Are you ok? I’m very lucky at this point. Yes, I am. Ok. They, we, we come back and it was magically gone. Um And they said, don’t worry menopause can do that to you because it can show up where you’ve got some, something there and then something not, and I’m like, well, that goes right along with everything else I’m experiencing. Um, but I have to go back in five months and so Jason has it on his calendar for when I’m going back in five months. Yeah. You know, it’s like we don’t think about like, you know, I’m doing my mammogram next week, by the way, like I just went, I just had my blood work done. I have hypothyroidism and generalized anxiety. So I gotta, like, keep my hormones in check because they run rampant. Um, but every now and then, like, I’ll think about, like, my husband, my husband Jason, like, have you gone to the dentist lately? Have you, like, you know, like you do have to kind of like, be each other’s mother, parent, whatever, caregiver, caregiver, like, yeah, because, you know, and here’s the thing too. It’s like our choices don’t just impact us. Like, yes, you should do it for us. And yeah, like we’re committed to these people that like, hey, you don’t take care of yourself, this is going to impact me and this is not my plan for our future. Exactly. Yeah. Exactly. You know, I do want to say something that I don’t think we mentioned to you beforehand. Elizabeth is um one of the things that I wish that we had had and I didn’t even think about this until now, Jay um Jason and I have palliative care and we have palliative care, which has been a God. What does that mean? Exactly. Because normally I think a palliative care like you sick happened. Yes. Or you, you need something to have comfort. Like, so what does that mean for you all for us? So we had a really hard time, we tried to seek counseling um during that time because it was very hard having support groups and things like that. We were on the other side of COVID. And so we were still a lot of restrictions, but I wish that we had had palliative care because there’s an element of counseling to it. There’s a nurse practitioner or a APA a physician assistant assistant who comes in and talks to you checks on you, helps you with navigating your appointments, helps you with navigating what’s going on. She, Janine is our person. Uh and we have our palliative care through elevons who is our health care uh health plan here in Virginia? I love Janine. She is absolutely family. And um we got, even though we got it after we probably it should have been, we didn’t access it during I think it is the most underutilized service that is of high benefit because Janine not only supports Jason and talking to him about how are you feeling? Do you feel like you need something different? She’s made recommendations to help him because he has very limited energy because of the side effects. But she also has made alternative recommendations and she listens to me as the caregiver and when there are things that he doesn’t want to do because he doesn’t feel like it’s going to quote unquote work. She says to him. Well, do you think you should probably try it for Natalie? And I thought I love you. And so I’m gonna tell you if you’re out there. Um You do not, this is not hospice. I think it’s super important for anybody. It is, for anybody who’s in there, it’s gonna be, uh connected to someone who’s got complex health issues, chronic health issues or an aging person who is, is going to the doctor because it’s really meant to be preventative and it allows us. So when we have a problem, they can actually order Jason’s meds and it keeps us from having to go into the doctor. So they’re like your first point contact. Instead. 100% is primary care physician. It’s like their palliative care. And how would someone get that? Do they have to go through their primary care physician or do they just call up their insurance or call up their insurance? Um, and if you’re somebody who is gonna end up, if you’re using your insurance a good bit, this is not for the person who is just fit. Uh, well, and you’re just doing well checks. This is for a person who’s going to the doctor a good bit. They’ve got complications. They could have, uh certain types of diagnoses. Call, pull up your insurance plan, speak to the care coordinator and ask them if palliative care is right for you or your loved one? Interesting. That is my biggest recommendation at this. I love that. Well, I mean, listen, caregivers, we are the experts in caregiving and that’s why there’s only caregivers that come on the show because I, I believe that you all are the experts. So I’m gonna put you guys on the spot, we’re gonna talk through the just for your daily self care journal. I, I have some questions. Let me see. Um And you know, I was just thinking that like, so we’re recording this and it’s close to leap year. And um I was like, I, I’m so proud of myself that I included February 29th in my journal. Um You’re like nailing. It was like these poor people that like, you know, that’s their day. Um It was your birthday. Think about that. Yes, it was your birthday. I’m four years old. So that was prompted this question. And what, what if y’all can take it? Maybe you guys can, you know each take one question. Yeah. Um Describe a moment in time where you took a leap of faith and how did it turn out? Hm. Who wants to take that one? We’ll give you all different questions, a leap of faith. We take leaps of faith all the time. Like literally, like we just jump in uh you know, Nie and I, this, the venture into podcasting, we laugh about it because we started the podcast. We’d never listened to a podcast before. I didn’t know where to find a podcast. I was like, how can you find it? And, and the problem is that NIE called me and she said, hey, let’s start a podcast. And my normal answer is OK, and that’s really what happened. But the blessing that the podcast has been like, sometimes I wonder do the listeners get more out of it or do I get more out of it? I mean, it’s like therapy. It is the best thing it is. And I think that’s that kind of leap of faith. You look at it. We have, uh, another venture that we’re going into for care and we just, we just, we were like, this is in our heart. This is, this is good. This is if this benefits one person, let’s do it. And I think that’s, that’s where we are. If it benefits one person, I think the Lord, but it’s usually with Natalie. I think that’s the problem is that my leap of faith that we hold hands and we just jump off the cliff. We’re like, let’s go. I love that. I love that you. Can you talk about your next thing or is it too soon? Oh OK. Wait, wait, tell you, I’ll tell you, I’ll tell you. So we’re looking at midsummer and this is a platform for individuals to be able to submit care request and the community to respond and we’ll be building a community action network and we’ll be working with health plans and government entities. And the goal is that it supports individuals to in the community because we want to try to keep people out of assisted living and congregate as much as possible. So beyond even like your care circle, it’s your community can, can pitch in and it’s, it’s strangers, strangers become neighbors, weaving kindness into the fabric of our community. That’s, that’s our goal. So interesting. I don’t know if you all have this. It’s not quite the same thing, but there’s a group called Neighbor Force. Yes. OK. Yes, we have it in Atlanta. Not everybody has it. I’ll link to it in the show notes. It’s in some areas. But I like the idea of Nabor, like your good neighbor, but this takes it even like another step further. So that’s amazing. Well, this will come out, I don’t think till spring. So you all have to get the details on that. Yes. Yes. Um, ok. Here’s a question. So for, um, for you, Natalie, what’s your favorite self care activity that doesn’t cost a penny besides Hallmark? Ok. Besides Hallmark. Um, I have found and this is, and this is me though. Um, there’s two things. One, it is very important that I move. And so rather I walk outside or, um, and I typically I go my friend Julie and I hope she hears this. I walk six miles with Julie every Sunday and we talk and that’s a long time. It is a beautiful thing. And I do my best thing. I always joke that I do. My best ideas come from when I’m moving, whether I’m driving or I’m walking. It’s, yeah, it’s where my brain really thinks. Um, and I listen to Christian music in the morning to get me going. And I feel closer to God when I’m singing and I sing. I like to pretend like I should be on the voice. I should not. That’s what I was gonna say. Natalie, her free thing is that she sings. I typically sing on our podcast and JJ just makes fun of me and I support it, but he’s waiting to be discovered, evidently. Yeah. I mean, clearly, but I really do believe that singing and it brings make a joyful noise even if it sounds bad. So nice. It’s joyful, it’s joyful. All right. How like, I mean, I could talk to you all day for sure. But the time is flying by, how do people learn more about you? Stay connected, get plugged in to all the good stuff that’s going on and like, what little words of wisdom would you want to say to kind of close up if you know that a caregiver might need to hear today so you can find us. We feel like everywhere. Um We’re on all the social media platforms. Confessions of a reluctant caregiver. com is our websites. Um Facebook now we always laugh, Facebook, Twitter, Instagram, uh tiktok. We just got on tiktok. That’s a little crazy for us. Uh youtube, um Words of advice, Natalie, you know, our theme on the show is relate, educate, inspire and laugh and we love to laugh Elizabeth. I mean, I, because that’s the way we get through so much and I think that’s important. It’s not that caregiving isn’t a serious topic, but somewhere in there you can’t be so hard on yourself. I think that would be my advice. You have to give yourself grace. But it’s, it’s, it’s gonna be ok. And so just, and you are enough. Yes, you’re doing good enough. Just, just I am, I am enough. I’m doing good enough. Yes. That’s so true. That’s so true. Ladies. You’re crushing it. Um Yes, with your messy caregiving life, I think it’s like what I’m going to call this show is like messy care with the sisters. Uh because fire whichever. Yeah, because I mean, it is, it’s like it’s, it’s perfectly imperfect and you’re figuring it out as you go and you know, there’s more chapters to come and you’re gonna like, you’re gonna figure it out and you’re gonna laugh their way through it. That’s right. So, all right, love you all. Thank you. Thank you so much for coming on the show. Absolutely. Thank you.

Thanks for joining us today on the Happy Healthy Caregiver podcast on the whole care network. As always show notes that a company today’s episode can be found on my website Happy Healthy caregiver.com. Just look under the podcast menu for today’s episode image and that will take you to the page with the links and information we spoke about today. You’ll also find other resources on the website along with links to purchase the just for you daily self care journal. When you purchase from my website, you’ll get a signed copy and for a limited time free shipping. If you’ve enjoyed what you heard today, consider subscribing to the show on your podcast platform. It really helps other family caregivers find the podcast and you’ll automatically receive our biweekly shows in your podcast listening queue. Maybe while you’re subscribing, consider leaving a five star rating and review or just simply talk it up on your social channels. Let’s stay connected. I’m on Instagram and Facebook as Happy healthy caregiver. And until we meet again, please take care of you.

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