Caregiving and Career Colliding: Navigating Work and Family Responsibilities

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Jessica Guthrie shares her decade-long journey caring for her mother, Constance, who was diagnosed with early-onset Alzheimer's. They had a close bond, with Constance owning a salon where Jessica assisted. However, upon Jessica leaving for college, she observed her mother's increasing isolation and forgetfulness, culminating in an Alzheimer's diagnosis at 66.

Over the following years, Jessica juggled caring for her mother while advancing her career, often flying back to Virginia. She put in significant effort to establish systems for her mother's well-being. As Constance's symptoms worsened, with behaviors like wandering, Jessica made the tough choice to return home in 2019. Working from home, she prioritized making new memories with her mother and appreciating each moment.

By 2022, Constance needed full-time care. Jessica arranged home hospice care for her mother, but resources were cut off early. Despite this, Constance's condition stabilized, but she still relies entirely on others. Jessica gained caregiving insights from her experiences and now shares her wisdom to assist others in similar situations.

About Jessica:

Jessica C. Guthrie, a visionary leader reshaping caregiving. With over a decade of experience, she advocates for dignified, respectful, and compassionate care. Believing in deep empathy, patience, and unwavering curiosity, even in adversity.

As a caregiver for her mother with Alzheimer’s, Jessica has seen the challenges faced by families, especially those caring for individuals with dementia. She stresses the need for a new approach to caregiving, with individuals, families, and healthcare pros collaborating. Through her platform "Career & Caregiving Collide™," Jessica shares her insights and innovative ideas, helping others balance their careers and caregiving duties. Her goal is to amplify diverse caregiving stories and ensure caregivers are fully supported.

Jessica has 13+ years of experience in education and non-profit management. Using her background, she's driving entrepreneurial efforts to create a better world for caregivers. She holds degrees in Sociology & Education Policy from Dartmouth College and Educational Leadership & Policy from Southern Methodist University in Dallas, TX.

Connect with Jessica:

Website: www.jessicacguthrie.com  

Transcript

Unknown: 0:00

Kristen daukas, Hey, everyone,

Natalie: 0:03

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

Unknown: 0:40

I love this movie.

JJ: 0:41

I don't I just get laughing

Unknown: 0:45

like, No, I did not come on here to talk about Silence of the Lambs. And yet, caregiving sometimes goes that way. It puts the lotion. I'm

Natalie: 0:56

pretty sure I did that with Jason. It puts the lotion on the skin. When he was he was burned, and I would try to get him tickled, and I would put it on his neck as he needed it,

JJ: 1:05

to do everything you can to make people giggle. So, you know, you know, I

Natalie: 1:09

think that goes with daygiving. You have to laugh a little bit. And so it seems appropriate that you would say it puts the lotion on your skin.

Unknown: 1:17

I think I am moving on, because I was putting

Natalie: 1:20

it on anyway. Sidebar, we're totally distracted. I am so sorry, Jessica. Jessica's like, I've heard the interest, but you know, you didn't sing. It's

Unknown: 1:29

caregiving.

JJ: 1:29

I mean, I'm okay with it.

Natalie: 1:31

Oh, I'm sorry. I may break out in the middle of it. I may break out, Jay, we have the best guest today. I am so excited to have Jessica. I wish Jessica. Do you go by Jessica, or can I call you? Jess, what do your friends call you?

Unknown: 1:45

My friends call me. Jess,

Natalie: 1:47

Oh, I love that. Can I call you? Jess, please, please.

JJ: 1:49

That's fine. You're good.

Natalie: 1:51

I am her bestie. Now

Unknown: 1:52

I appreciate you for asking. Not everyone asks so that that annoys me, but you asked, so thank you. Oh, thank you. I

Natalie: 1:57

wanted to ask because I thought I'm gonna call you. Jess, all my friends call me NAT. So Jessica, like, like, a bug,

JJ: 2:08

I'm getting started anyway, but Jane, okay, so first of all, if you're not watching this on Zoom, you should, because Jessica is beautiful, and today she's got all the red on. She has these fantastic red glasses and so that her glass, their glasses choice, are always my favorite. The first time I talked to her, I was like, she rocks it. She is like the caregiver rock. So let me tell you about Jessica. We are excited to have Jessica Guthrie with us today. Now she has over 10 years of caregiving experience for her mother, Constance, who is living with Alzheimer's disease, a role that Jessica started in her 20s. Jessica has taken these experiences and started a mission, and it is a mission to amplify caregiving narratives and ensure caregivers feel fully supported. A lot of this is through her platform. Career and caregiving collide, and it absolutely does, because most of our caregivers work. So she is using her experiences to drive her entrepreneurial efforts to create a better world for caregivers and their loved ones. Jessica, I am so happy to have you here. I know Natalie is as well, because she's your new BFF. Thank you for coming on. She

Unknown: 3:19

has no free will. Thank you for coming on. Thank you for having me. You all have such good energy. So I appreciate this early in the morning. Oh, you're

JJ: 3:30

gonna need it. You'll be ready for a nap this afternoon. So I was the one that got to talk to Jessica in the very beginning, and your story is fantastic. So I want to, as Natalie says, let's start from beginning and then skip ahead. So tell me a little bit you were born, you and your mom. First of all, tell us a little bit about the beginning you were born. And I want to learn a little bit about you and your mom the background.

Unknown: 3:55

Oh my gosh, in the beginning. Yes. Okay,

Natalie: 3:59

appropriate, especially after Easter weekend. Yeah.

Unknown: 4:04

Okay, so I am the daughter of Constance Guthrie, and I was born in Northern Virginia. My was my mother's 39 year old. Surprise, she thought she had the flu, and she went to the doctor, and he said, It's not the flu. You're pregnant. And, yeah, she wasn't trying to get pregnant at all, and I just, I came along, and so I think I was the gift that she didn't even know she and so, yeah, I grew up very much with my mom, as she was a business owner. She owned a hair salon for 18 years in Alexandria, Virginia, and was like a very successful businesswoman, and I grew up as a young child, basically running the shop. Okay, so I, you know, was very much the hostess with the mostest, getting to know the ladies come and get their hair. Had my birthday party in the shop. I had a tricycle like I just ran the place. And so that very much speaks to the relationship. Relationship that we had very, very early on. It's always been. CG, and, JG,

JJ: 5:04

Oh, I like it. CG, so, and I'm sure that all of the ladies, they just thought you were, I mean, the bee's knees, you know, all of the ladies get their hair done. They were like,

Unknown: 5:16

Yes, I was all that, and 20 bags. Yeah, I was, and I think it's because my mom, my mom has always had a big personality. So I had a big personality growing up, you know, and so I had, you know, coordinating outfits. And I was like, I grew up really fast. I was like, in the all the gossip, I was laughing, I was talking. I was probably a young little lady, I'm sure, okay, you're,

Natalie: 5:40

it's almost like well seasoned, like they're like, Oh, she's older than your age, yeah, you know what I mean. But I I can't imagine growing up though, in a hair salon, because that is nothing but a good time, honestly, like people are just chatting and they are just telling your whole story, yeah, and I'm surprised you didn't become a social worker, because honestly, think about it like, you know, we talk, we ask lots of stories and things like that. Okay, so you're growing up, it's you and your mom, right? And so you got no other siblings, no siblings. You guys are like, in it, in it, okay? And so then you turn 18, and you're moving along. So what? So tell me keep going.

Unknown: 6:24

So much skipped, yes, okay, so yes, that was childhood, and then we fast forward, right? I So yes, I'm my only child. She's a single mom, and so for high school, my mom was always like my biggest cheerleader, as most parents aren't, right? But like every single project, every single competition performance, my mom was always there, right? And so my mom actually gave up her salon. She sold her business to basically go and work in the local school system so that she would have the same holidays, days off, like always be present for me, right? And so I share that to paint the picture that it like my mom was always there, and whatever I needed to do, whether it was get my hair done, whether it was like curls at 5am for like, you know, a TV show, whatever it might have been, my mom was always willing to sacrifice and show up for me. And so when it was time for college, I applied to some heavy hitters. And then I the school that I wanted to get into was Dartmouth College in Hanover, New Hampshire, and I got the big envelope, and I was so excited. And my mom, I remember, like, coming in after jumping outside by the mailbox, and, like, she wasn't excited. And I was like, what's wrong? And she said, You're leaving me, um. And I was like, Yeah, but it's dark red, you know, like, I believe, you know, all the things, I was so excited. And she was like, Yeah, but, you know, I don't know what I'm going to do, because she had given up so much to pour into me, right? So anyway, I share that to say that, like, I left home to go to undergrad, my mom came to visit me a couple of times. That was, like, very much, the beginning of me stepping into what was next for Jessica, which meant, like leaving my mom to figure out who she was going to be. That's important, because I do believe that was the beginning of my mother, I don't want to say isolation, but being alone and not having a thing to focus on and to pour herself into, that I think that did play a role in early onset Alzheimer's disease. I'm getting ahead of myself, but that was, that was 18. That's interesting.

Natalie: 8:27

No, that's that's an interesting thing, though. But I mean, relationship is important, and if she didn't supplant the pouring into you and being your person, she because that relationship shifted, the dynamic shifted. Then what was she going to put in its place? Exactly. So this is, this is like, not caregiving, but it is. So what happened that? What did your mom decide to do? I mean, you went to college. You're living your best life at Dartmouth, being all booge And then. And so what's your mom doing? Because she's, she's still Northern Virginia, which I'm just gonna say Virginia's for lovers, yeah. And so, because I was like, what Virginia? Because you said, Texas. Okay, so then what happened?

Unknown: 9:08

So my, I mean, my mom kept working. My mom is still in Fredericksburg. My mother works. I mean, my mother was in a school system until she retired, and so my mom was a middle school paraprofessional, right? So she, I mean, had a routine. My mom has always been really routine. So, like, she had her routine. She was up at 5am she was at school by 630 like all the things. But after school, she had to figure out, like, what am I going to do? And so she joined as, like a volunteer at the local Boys and Girls Club. Of course, she threw herself into her the church choir, which she was the director of the church choirs. I mean, she was, she had things to do, but there's something about when you come home at night there's no one here but her. And like, when your schedule is always busy or full, or there's noise or there's movement that, like, there's there was always me, you know, not that I'm saying I blame myself for Alzheimer's, but I do think she really had to figure out, like, how is I now going to use my time? But also, like, be engaged with other people and, you know. Stay sharp. And I don't think that she had someone at home pushing her and challenging her to be like as sharp as I think she could have

Natalie: 10:07

been. So you're going through school and you're living life. So when did caregiving begin for you? What? What was the first signs that something was going on? She

JJ: 10:18

moves. I think Jessica moved. Did you move again after Dartmouth? Why?

Unknown: 10:22

Yeah, so Dartmouth's in New Hampshire. I could only stand four years if it is too cold. Oh, wait, there's something in the middle here. Yeah, just a white sky, white snow, like it was just a lot. And so at graduation, I then moved to Dallas, Texas. After graduation, I joined a program called Teach for America, where I was going to become a high school social studies teacher. So I was like trying to figure out, what did it mean to become an excellent teacher, like step into this professional world in Dallas, Texas, that was in what 2010 and so then after that, I joined working for the program. So I was a teacher coach. I was working with partnerships in school communities. And then around 2013 my mom was like, getting confused doing things that she had always done, so things like, you know, driving to school, my mother's drunk like you're in the same route for 18 years. Yet she got lost coming home from school when there was construction, but didn't know how to get it with, get home, right? This level of anxiety was rising to do basic things like drive herself to, you know, the grocery store. The straw broke the camel's back. Well, started to work camels back in the summer, my mom went to go visit her brother, and she had taken the the train to DC, navigate the airport, all the things, and I get a call from the local commuter change train station, Jessica, I don't know what to do next. Now, mind you, I'd already written out all her directions, because I had noticed she was kind of anxious, but she didn't know how to navigate the airport. My mom was a travel mom traveled the world like globally she was. She loved doing that, and could not navigate the airport. I had to call my uncle to come and meet and meet her so that she wouldn't get lost and get overwhelmed when she just hops in the cab and goes. And then fast forward, my mom was displaying signs of just like, major forgetfulness, but also just like, really, like sad and anxious. And so we were like, something's wrong. And then fast forward to July, 2020, sorry, 2014 my mom got in a really bad car accident driving to church same route every week. And so that's when I knew that something's wrong. Luckily, because we were concerned, we had had a neurologist appointment basically set up while I was home from Texas. Mind you, I live in Texas. She's in Virginia, so I'm noticing these things from afar when I'm home. And so it was the it was the car accident, and then we went through the initial rounds of testing, and that's when the doctor said, given all that we've done, it is highly likely that your mother is living with early onset Alzheimer's disease. And then the last thing is, my mom had a TIA, which is a mini stroke, in February, and, you know, I put all the pieces together. I was like, Oh, my mom has been stressed. My mom has been trying to hide this, like forgetfulness, with her school and like her colleagues, right? Like she is exhausted, and like has lived, been living with this, or who knows how long, you know. So those are the early stages. How old

JJ: 13:19

was she at that time? Jessica,

Unknown: 13:21

66

Natalie: 13:24

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

JJ: 14:35

are back here with Jessica Guthrie, and we're just getting started on when her mom has the diagnosis has been made, and there are a lot of things that led up to this, and we were talking about your mom's mini stroke, and what that impact, where we believe that came from, which was a lot of stress, and in her trying to hide all those symptoms, Jessica, I know that you do a lot. Lot of work in sharing information about Alzheimer's. My question is, you were saying your mom was stressed. You felt like she was what her symptoms, a lot of them were, she was showing depression and things like that. But there were a lot of other ways that Alzheimer's can present itself correct. It's not just depression. Oh no, no, no. That

Unknown: 15:19

was just for my mom. I think everyone's different. That's what I want to make sure people live, yeah, and to be clear, right? Like, we didn't know that it was Alzheimer's disease until the doctor had done the the number of, like, the battery of tests and assessments and observing, and even then, he was, like, based off of what we've done and the information that we currently have, I believe it's Alzheimer's. So we have to watch this for the next, you know, six to 12 months to see if anything else happens. I think that people oftentimes see, you know, confusion and forgetfulness and just assume that it's Alzheimer's, and it's like, hold the phone Andy. There's a lot that could happen this umbrella of dementia. But for my mom, Alzheimer's was the correct diagnosis in the sense that, you know, there's, there's cognitive just impairment in terms of her remembering the task she had typically done, the repetition of her like herself, her stories, her questions, the overall just confusion, right? Like the connection to just her emotional ups and downs. But again, everyone it shows up in people differently.

JJ: 16:22

So tell me about after this mini stroke. You're still in Texas, and tell me about where she is after this mini stroke, what her abilities are. Tell me about that. I

Unknown: 16:34

mean, a TIA. It just, it's a mini stroke for a reason. So my mom was functional. She was fine. They put her on some blood pressure medication, and it was like they kept she kept going. So my mom, which is also a misconception, my mother, still worked. My mother went back to work a week later, and except for the fact that my mother was now afraid to drive because she got in that car accident, and so colleagues were picking her up for work and taking her to work. And this went on for like, another year and a half. Because, frankly, one of the first things I said when my mother was diagnosed was, who's gonna pay for this? Who's gonna like, because I'm at this time, I'm 26 years old. My mother still has a mortgage on the house. I'm just starting my career, like the financial the financial picture was terrifying enough, so my mom kept working for as long as she could. So, but I do know that my mother was diminished in her working abilities, in the sense that, like, Oh, I was never there, but she was probably forgetting things. She was probably like, you know, frustrating the people she was working with. So it wasn't until, I believe it was the fall of 2016, 15, that her principal called me and said, Jessica, what's wrong with your mother? And you know, I work in education, so I understand when that phone call comes, and I was like, nothing's wrong, until eventually I said, you know, my mother has early onset Alzheimer's disease. And he said, Oh, we're very much worried about her. And he because she'd been there for so long, he didn't want to fire her, but he had to say, like, your mother can no longer be here, and so thank goodness my mom was such a diligent worker. So I basically put my mother on FMLA, like family leave after winter break. So I got the top of the year. And because she worked so diligently, my mother had enough paid time off to basically take her all the way from January to the end of the school year. So my mom got a full paycheck until that end of the year when I officially retired her, which was, like, so relieving and, like, so helpful for us, because it allowed her to have full benefits so I can navigate, you know, just getting her to doctor's appointments, as well as, like, a full paycheck to put away, to like, you know, take care of her in the long run. And so it was a it was a blessing, but also very, very heartbreaking, because that's how you know, her career and education had to end, where I was literally swooping in to protect her image, to protect her dignity, to, like, get her out of that situation, when I now know, like, in hindsight, I'm sure people were talking about her. I'm sure she was the brunt of so many it's just like, jokes and frustrations, and that breaks my heart, because it's like, she didn't know and she was here by herself. Like all the things I get so emotional about it, I'm just like, if I would have seen it, if I could have, if I wasn't by myself, could I have, like, pulled her out of this earlier? I don't know. I can't go back, but yeah, that's where my mom was. So that was all up until 20 she officially retired in 20, like 2016

Natalie: 19:32

Wow, I'm assuming it was right before she, she turned 67 at the same time, because that would have been the retirement age she, she made it to retirement, which is interesting. You know what I mean?

Unknown: 19:41

Close enough. Yeah, exactly, exactly, yeah.

Natalie: 19:45

So when you all are having this conversation, so it's you and your mom and you are like the dynamic duo, yeah, okay, what is this conversation like after the principal? Because you're seeing these things like, what is, what's the conversation with your mom? Because I can tell you, our mom was all. Like, hmm, yeah, you're you're the kids, and I'll let you know when I need our mom was fiercely is fiercely independent. Trust me, there's a reason we get it honest. And so what was that like? As you're having conversations, are you talking about, Hey, Mom, I'm your you know, let's get our documentation in line in case something happens, especially after mom had the mini stroke. Like, are you all, like, prepared, in the sense, from financially? Are you, do you know, how much money do you get? Are you in the in the middle of that biscuit?

Unknown: 20:33

Yeah, at this point? Like, I'm very much doing a lot of this from afar, but I'm like, in the mix, right? And so everything from getting the power of attorney, the healthcare power of attorney, getting my, you know, names, my name on accounts, right? I but at the same time, my mom, as many people are, was in denial that there was something wrong. It's like, what are you talking about? I'm fine. I'm fine, right? Like, even, like, in having the conversations around, you know, her home, because again, I'm 26 years old. You're, you're getting all this input from people, and like, the conversations of, like, selling her home so that you have the money to take care of her, and, like, all this stuff. And so my mom was like, Oh no. And I quickly realized, and quickly learned, we are not selling Constance house. But like, that was a conversation. And she, like, every time, it was like, Absolutely not, what are you talking about? Like, and so my mom, my mom, knew that something was happening to her, yet when you, like, approached her about it, it was almost like, Let's shut this down. We're not engaging in this conversation. Or she would get really sad, like, what's wrong with me, you know, and so I learned very quickly to kind of tiptoe around it say enough to get what I needed to build the trust of like, hey, I need to be your power of attorney so that I can make decisions if something happens to you or like, you know, I would have to give it in pretty plain language, without talking about the disease that was beginning to, You know, creep in. I would also say that my like, so in terms of prepare, I mean, I I had enough to get things done, but I don't think that we ever really had, like, end of life conversations. We never had, you know, any. My mom didn't have very much. There wasn't very much of a financial conversation to have, but I wish I would have known more earlier, even things like deeds and trusts and, you know, all of that which I didn't, I had to learn by doing I wasn't prepared for ahead of time, absolutely not.

JJ: 22:30

So I'm going to bounce back like we normally do. So we're going to talk about you, because you are, you know, at this point, you are in Texas and you are beginning life, you're beginning your independence, you're building your career. What's going through your head at this time? Like, where are you? Yeah, so

Unknown: 22:53

I'm exhausted because I am, you know, holding all of this while trying to figure out, like, who is Jessica as a young professional, you also learn very early, right? Like you put your head down, you grind you like you want to achieve and move up the, you know, the corporate ladder, right? You, you, you don't tell anyone what you're going through at home, right? And so, like a lot of it, I was carrying silently, like that, no one really knew or and at the time, my peers were not talking about caregiving, so I didn't think anyone understood what I was going through. And people you know and folks who did know be like, Well, have you, have you looked at the Alzheimer's Association? No shade, right? Like, have you looked at these other organizations? And it's like, These people don't look like me. People are in different parts of their lives, right? They're like, 40 plus, right? Like, life looks different for them, and so I very much at this moment in time, felt like in my own little silo trying to figure it out. This is also like me, Jessica, not knowing anything about forms of dementia, all I know is what I've seen on TV, which is very little, because we don't cover accurately what dementia looks like on TV. But what I did know is that, like, my mom was still independent enough to be at home. My mom still had like energy and personality needed to be engaged with, and so I went into like full action mode. So every time I would fly home, I would set up new systems and routines. Okay, you need to be engaged. This is the box of, like, all of our puzzles, all your, all your, like, your word search, word finds. Here's your latch hooks, right? Like, here's that. Okay, cool. You're losing weight. I'm now going to prep 40 meals and put them in the freezer with labels so that you can now go heat up your meals and I can make sure that you're eating. Oh, my goodness, Constance, you're losing weight and your clothes don't fit. Now I'm coming home and like, I'm spending, you know, hundreds of dollars to make sure that her clothes are fit and she's presentable when she goes to church. So when I think about, like, who was I between like, 26 and 28 flying back and forth, three hour flights, one hour drives down from DC to like, two. A home in Virginia. I'm like, pulling all nighters home for four or five days just to keep up the image, keeping up with, you know, the things my mother needs that people think and people perceive that everything's okay when things in my like are crumbling because I'm so, you know, just exhausted. So that's where I was. I was holding a lot, and for a long time holding it by myself. No one knew the intensity of it, until I had like, like, I knew that I had to tell my, you know, my work colleagues, my boss, because it was becoming to be like, just too much. I

Natalie: 25:38

just, I just jotted down the word illusion. It's this illusion. You know, it's this I hear you saying, we had to keep up the illusion and because for your mom, because you have such I hear the high regard for your mom. You clearly love your mother and and we always, I feel the same way, like we've had some dental issues for our mom, and we're like, This can't go on. Like we have been on the people like this can't go on. This is not right, like, and it's, it's something that feels like it's, it's little, but it's not. And so that, when you said making sure my mom had the clothes that fit her when she went to church, that I'm gonna sit there and be like, Man, I hear you on that and, you know, so you're, you're going back and forth, you're 26 to 28 how's your personal life? We always do that. We're like, how's that? Like, I mean, you've got career, but that's super cute. How's your personal life?

Unknown: 26:41

Yeah, you know, up until 30. So I moved home at 30. So pre 30, like, when I lived in Dallas, I think that I was really intentional, like when I was in Dallas, I was in Dallas, meaning that, like, I, you know, I had my own routines. I had my own just like, set of friends and so, yeah, I made every effort to be connected and socialize and build relationships like my friends very much. Kept me sane in many ways, when I was in Dallas and my kept me sane. It's like inviting me to things and you want to go get drinks you want to go to dinner, right? Like not letting me or not assuming that I didn't have the space or time, even when I might have been too tired or might have said no, but it was the we see you, let's keep inviting you, which I really appreciated. And so in terms of my social life, I had, like, a number of friends. Like I had things to do. I, like, I made choices to still travel, right? Like I was still going hopping to Mexico, you know, like I was, I was very much when my mom was still able to be in the home by herself, before the wandering stages started, before I had to pay for external help, I was still able to make choices that allowed me to be with other people. I think the question that people often ask underneath that is like, what about a relationship? Like, I've been single this entire time. And you know, that doesn't actually bother me, especially now that we're in the stage that we're in, I'm jumping ahead. But like, this is going to end soon, right? And so this is just a season. And so like, it doesn't are there days I was like, I just wish I wasn't this alone. I wish there was someone I could lean on. I wish someone understood, like, how tough this was, whether that was a sibling or a partner. I don't have that. And so, like, that has just been part of my journey, but one that I'm not, like, resentful of anyway, yeah.

Natalie: 28:27

So what was the crisis that triggered the move? Because it always caregiving really happens, like, hot in a crisis, typically, like, there's something that pushes you over the edge, or, like, all right, I'm gonna do it.

Unknown: 28:43

Yeah, it was a couple of things. So one, it was just the, just, like, you can't keep paying for live a life in two places. I still had my apartment. I, like, all, all of my stuff in Dallas, but I wasn't there because I was traveling, like, every week and a half, you know. And so that was, like, a financial this didn't make sense. So there was that. And then, like, the, you know, the flying to be back at work for like, 9am meetings just didn't make sense. But that was that was, like personal for my mom, my mother. I had, at this point, hired, like, a local care agency to be with my mom for four hours a day. I could only really afford three days a week because my mom was bored. My mom, like my mom, my mom. My mom was walking and talking up until 2022 so, like, my mom just needed someone, needed a companion, so I was paying for that. But beyond, after four hours, my mom was still, like, bolting out the front door. So my mom would leave the house, and she never really went far, but she loved the neighbor's house, and by love the neighbor's house, she would like, go down their driveway and, like, just sit in their garage. Like, scare my neighbors half the death because she's just sitting in their garage. You know we're, like, eating peanuts, or, you know what I mean, like, and then, like, she I would hear stories of like, well, your mother brought over all these dresses. And I was like, gosh, so my mom was no longer just sitting and talking. She was like. Doing strange things. And so there was that. And like, when I tell you, my neighbor calls me and leaves multiple messages, like, every day you tell like his patients had, like was gone. And then the biggest thing that broke through camel back is that my mom had gone to church every Sunday. She was still singing in the choir. By this point, she wasn't leading anything. But you know, when you live with Alzheimer's, the brain is fascinating. But my mom might have the most confusing day, yet you get her up in the choir stand on a Sunday, her mouth is moving, she is singing. She is part of the group, right? And so that was so important to her. However, I get a call. This is February. I don't know the year at this moment in time, but it was a lady from church, and this is my biggest fear. The lady said, we're concerned about your mom, and we're concerned because she has poor hygiene. She smells Jessica. And I said, What do you like? You know, at this point, you know, I'm, I think I was looking I don't know where I was somewhere for a work conference. And so I'm on defense, because it was like, my biggest I had worked so hard right to, like, keep up the not just the illusion, but to like, protect her from people talking about her right, like and or like, having this side combo about we're worried about Constance. What I learned is my mom would even though she was taking a shower, which I walked her through, step by step, via camera, she was then putting on dirty clothes after the shower. So now my mom is leaving the house, even though, from the camera, she looks clean instead of putting on the clean clothes that's clearly labeled in her closet that I've worked really hard to create this system, she's putting on dirty clothes. So she's leaving the house with really bad odor. And then one Sunday morning, I tried to get her dressed, and she had a dress on, and then she put pants over her dress, and then she like she was not dressed appropriately. And I said, No, no, we can't do this that like it was that series of things that was like, Jessica, get home. No one can take care of your mom like you. This is like you can no longer make ends meet by using a set of home cameras, right? You can no longer trust that people are going to look out for your mom because in the end of the day, they're just going to talk about her versus help her. Like that's how I felt. And so I said, Oh no, I gotta, I gotta go. I gotta go. And so I, you know, March, so it's spring break, 2019 I packed everything up, I put it in storage. And I, you know, I thought that I was at the time, at the time in 2019 it felt like my life was crumbling, and I couldn't see beyond the current moment. And I remember telling a coach, I can't, I can't I'm giving up so much like all this is happening to me, I can't even dream. I don't know what's coming next for me, but I know that I have to go be with my mom. And obviously, like, you're so consumed, fast forward, and it was like the best decision I could have ever made. But I in the moment at that time I'm now, I'm close to 30, or I am 30, and I just I, I didn't have a guidebook, or I didn't see other people doing it, and so it felt like I was giving up so much, and I was one that had to sacrifice, and I was okay doing because my mom sacrificed so much For me, you know, but that's why I moved back in my childhood bedroom.

Natalie: 33:26

Oh, I'm like, Oh, my heart hurts for you, because I feel like, I think there's so many folks who will hear this and be like, I can relate, because that's the reluctant caregiver piece of it. It's not that you don't love your person, it's and sometimes you don't like them, but doesn't mean we don't love them, right? And because sometimes people are hard to like and but it's still okay for both things to be true. I want to honor my parent, and I also think this is really crappy. Yeah, I can't believe I'm living my life this way, but I love my parent. You know what? I mean? Like both things are allowed to be true, and the emotions with it are like polar opposite. And I don't think for me, and I know Jay for you. I mean, we've never felt like, whoa, like I didn't expect to have emotions that were so far apart on the spectrum. You know what I mean. Give me one second. We're going to take the last spray, because this is too good. Jay.

Unknown: 34:29

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

JJ: 35:17

everybody. We are back here with Jessica Guthrie, and Jessica has just made the move back home. We got into, she's moving. She just got into something of a crisis situation, and it was the turning point. There are a lot of motion, emotions involved in that move. So Jessica, let's start you are, you're there, you're back, and

Natalie: 35:39

you're back in your childhood sometimes, wait, wait, I'm trying to think of like, how old she was at this point. I'm like, what are the posters on? What are the posters like? In my mind, I'm like, in sync, and I'm like, You're tearing up my heart.

Unknown: 35:53

And I'm with you.

Natalie: 35:55

I know I break in some I'm working

Unknown: 35:58

like I had, luckily take, you know, since I was traveling back and forth, I had, I knew this was eventually coming, so I was, like, preparing for to be back. So it wasn't as childhood as I think people might think it was like we had, we had that changed. Oh my gosh, yeah. So I there were two, two big things, I think. One it was, I didn't have a model of what it was like to work virtually. And so my my boss at the time, was very supportive. He was like, Yeah, you should change your home base. Like that makes so much sense. I was like, You mean, I've been stressing about this, and you've been supportive the whole time anyway. That's a different conversation. But he was really supportive. And so I'm grateful that they said, Yes, you can work from home, but I spent a lot of time in my head being like, I want people to still see me as competent, right? Like, I'm not slacking off because I'm not there in person, Jessica, your leader of this team. Like, people need that you're still doing things right? Like, there's that there's a it's one thing to be an individual contributor, but it's another thing to now be the like, be the manager, be the leader and not be there, right? And so how are you still setting the example? So I spent a lot of time probably overdoing it and working harder so that people wouldn't think that just because Jessica's gotten the like privilege to be at home or to work virtually, she's not engaged. Little did I know the pandemic would happen a year later and everybody would Yeah, exactly like in the moment, it felt very like novel, right? So there was that, and then it was, how do I now keep my mom engaged? And like, I am seeing, yes, I've always seen everything real time. But like, now I like, there's no hopping on a plane to escape it, right? Like, I was always home, you know, every 10 to 14 days, but I still had a week away, and now it's like, oh, this is, like, front and center, and I am seeing my mom in all the messiness of where this disease currently is. I'm watching her, you know, her walking gait change. I'm watching her, like, short term memory very much fade. But I'm also watching my mom have so much joy and like, I'm seeing my mom in a new light now, because I'm like, I'm here and I'm present, and you realize, like, how, like, how much energy and like, zest for life she still had, even as things were changing for her. And so I was able to spend especially those first two years. So 2019, and 2020, really making new memories, and like tapping into, you know, the story she'd always told me, like taking her back to her childhood stomping grounds in Arlington, right? Like, it's like just doing things to create memories for me, but to create experiences for us, because I now wasn't stressed or trying to fit everything into a three day visit. It was just like a Okay, so what's next? We're here, present and proximate, and it allows you to really slow down. And I think that's the biggest lesson in this moving back home, is that, as my mom has declined, you know, I have also had the ability to slow down. And my mom, at this stage, doesn't need me to make a million systems and routines for medication. And you know how we go about our day, my mom needs me to, like, be present and hold her hand and sing songs to her right like my mom needs me to sit next to her so we can watch TV and, like, laugh like we used to, to do her hair, to do her nails, to make her feel good and feel seen and valued. So that's been the like, the beauty and the gift of moving back home, and I think the maturity too, though. I mean, I am a different person, like i Jessica. I'm not the same person who, even who moved back home in 2019 like I see like success. I see time. I see energy so differently now because I've been present to steward my mom through this, this set of experiences as she declines in Alzheimer's disease,

Natalie: 39:49

I'm I'm sitting here like Jessica is well wise beyond her years. Thanks. I am so sitting here in awe of the insight that you have. Of I think it's a relationship. I think it is the fact that you can be as insightful as you are and see the other side of that is very hard for people to get there. Do you know what I mean? It's easy to get stuck in the day to day frustrations, yes, and and step back and go up, 10,000 feet up, and look at it and say, I get to do this. I get to do this, as opposed to, I have to, I have to, yep. And I think those you've got, you've given us, I'm like, I'm sitting here, like, there's not enough 32nd reels on here. Like, I'm like, I want everybody just to listen to this, because it's so important, because it doesn't matter. I think for me, it goes back to the common thread is it's, it's, it's not about the illness itself, like it could be Alzheimer's or dementia. It could be Parkinson's, be whatever it's. What are you going to do with this situation? And everybody's is different. Yes, everybody's is different. So you and your mom get into this routine and and I know that, gosh, man, Jay, our time is coming up. Oh,

JJ: 41:03

clearly you got to get to where you get to the where we are now, though. So I know that exactly mom has declined. And I know there was a point where you had you you guys had made a decision. You had made a decision where your mom had to go to hospice. Is that right? Jessica,

Unknown: 41:20

yes, so you asked me where this wisdom comes from, and where this maturity comes from. It's when you believe your person's going to die, when you get to the end, when you when you start preparing. You look at life very differently. You look at your person very differently. You look at the moments in time that you have very differently. And in May 2022, my mother had had a number of infections. She was falling. She was no longer ambulatory. She could not sit up on her own. She had lost weight, right? Like my mother was a full Max assist for everything, which are all indicators of significant decline, which is what qualified her for hospice. And I had gotten to the point where I could no longer like I was beyond stressed, calling the fire department pretty much multiple times a week, because I couldn't get her up off the floor on my own. Wow. And like, we've been in the hospital four times January through April that I said, I think it's time, and her primary care physician said, Oh yeah, I think she'd be a good candidate. So that's when I decided to put her onto home hospice. But I will tell you, and I think people have a lot of misconceptions about home hospice, but I think the like the consistency of care, the intention, attention to detail, the attention on my mother, helped my mother plateau. My mom actually stabilized on home hospice. And so while we were admitted, may 2022 my mother was discharged, March 2023 my mother is still fully bed bound, no longer ambulatory, all the things, however, she's stable. She's thriving in her current stage, which I'm so grateful for. So that's where we are. But to the point is, I visited three funeral homes. I made the plans. I was like, when the time comes, I don't want to be stressed about this. I just want to say, here's the papers, here's the stuff, let's go. You know? I mean, like, I want the end for me to be with my mom by her bedside, singing songs, and I don't want the stress of anybody else's stress and emotions messing me up in that time. But when you do that, you realize how precious life is. And so even though she's been discharged, every single hour of time with my mom I consider to be magic time, because it's a gift that I wasn't even expecting, and so that's why I can slow down and be so present with her. Now I want to

Natalie: 43:30

be Jessica's friend forever. I think you are an amazing human being. I just I know JJ is getting teary eyed. She's always a smart sandwich. Sorry, she's, she's, she does, she's, she's a snotty sandwich, because it's so great, like, I think it's like, aspirational, like, and the reality is, is that you can do it, it's choice. You can do it, it's choice, and it's hard. Probably, it was probably not easy, because you just said, Hey, I went and looked at three funeral homes. People like, Well, you said it like, it was just like, hey, I went shopping for a new pair of shoes. And, I mean, for me, I'd be sitting there at the same time being like, Well, I'm gonna want this casket, because I'm gonna like this one better. Like, I would start in looking at myself in there, like, am I going to fit in there? What am I going to wear? And then you're like, oh, wait, I'm here for something else. But the fact that you hit it so head on at the same time, it forces you to also look at your own mortality. Like, if you think about that, and you've got this, I don't know what the right word is, I'm looking for it. It's you're resigned to it. You're like, it's gonna happen, and it's okay. I won't let this fear and the stress and anxiety control me. Your mom, I love that, your mom. When I read this, my mom was on home home hospice, and then she's off. And I think a lot of people be like, What do you mean? She's off? I thought that when you went on home hospice, the expectation was. You are required to pass. You know,

JJ: 45:03

it's not,

Unknown: 45:04

I mean, I think that there, it's okay. First of all, Medicare in the United States is just a mess. So it's all driven by that. And I think essentially, you have to basically say, Should your disease take its natural course? Your person will die within six months or less. And so my mom had all the symptoms that she was declining. And I think this is where forms of dementia don't play fair, or like Alzheimer's disease doesn't play fair, and that you can have a steep decline and then plateau for a long time. And I think because my mother was no longer stressed, we got rid of medications. We weren't like, you know, trying to figure out how to get to the hospital, like all the external factors that make things really stressful for Alzheimer's patients, we had gotten rid of, which I think allowed her to slow down and but so yes, being discharged, or, as they say, graduating, is actually quite common, especially for dementia patients who might experience a decline but then might not be too close to death, and because of this, the way in which it's currently designed in this country, if you're not dying fast enough, they basically remove all of those resources for you because you're not close enough to the end. But what people don't realize is that when you get discharged, it's literally like pulling a rug from underneath you, because all the equipment, all the supplies, all the in home care, goes away just like that. And so, like, I called it like, I'm in the low I'm in the wild, wild west. It's just me and my mom trying to figure it out. And so, like, it's, it's a really strange transition, but happens to a lot of people in this country.

Natalie: 46:38

It feels wrong, doesn't it? Oh, it's Yeah. And why would you do that to people, especially when

Unknown: 46:45

you realize the resources are allowing people to actually, like, thrive and be here longer. And so it's like, oh no, we're gonna take you off so that things progress, and then you can come back when you like, have very little time left. It's like, wait. But shouldn't everyone deserves compassionate care, no matter how long it's going to be anyway, that's

JJ: 47:05

a whole different that is like a that is like a Day Level podcast, sister, that's all I'm saying, because we are on that soapbox. Well, so

Natalie: 47:12

move back in with your mom. How's and you have the pandemic. Because I thought about this before we started today, and I was kind of glancing over, refreshing my my noggin, about this. I thought we all looked at the pandemic as this bad thing, right? And we can all agree it. They were bad things that happened to people. I don't think that the pandemic negatively affected us in the same way it did not affect my family in the same way, you know what I mean, like for some people, it actually was a silver lining. And so exactly what you said, you're like, oh my gosh, I felt so bad, and I overworked, and I tried to compensate so that people wouldn't think that I wasn't doing my part. That's a value that's a value statement. We've learned that from what you've seen, like, I have to work hard, if not, you know? And as opposed to, like, I don't care what they think. I mean, I'm going through this. So you get with your you have the pandemic, and it feels like it's a little bit of a silver lining, oh yeah. Like, I mean, total and, and now we can't push it back in the box either. Like, if you really think about it, people are like, oh, you should come back to the office. And we're like, that's cute.

Unknown: 48:20

I'm not doing that. And I think about

Natalie: 48:21

how it is for caregivers. I think about how it is for us. If had I not had the had we not had the pandemic, I'm not sure I could have kept working when we went to New York City and Jason was receiving his treatment. It would have we didn't. We didn't do things that way. And so I look at it now, and I know that you you talk about your what you work on, you've got caregiving and career collide, so tell me about that.

Unknown: 48:49

Yeah, so I started this platform because it very much felt like a collision. It felt like a Whoa, right? Like, what do I choose? What do I do? TV and movies would tell me that I'm supposed to have a white picket fence and everything's supposed to be figured out, right? Like I'm supposed to be figured out, right? Like, I'm supposed to have a married, multiple kids and, like, move my mother in with me, right? Like, that's how, that's how, that's how the movies make it seem it's like, Oh no, that's not where I'm at. And so I had to figure out. I so there was, there was, like, that's just dissonance in my head, on top of the fact that I believe that people had grasped enough what it looked like for people to be parents in the workplace, but people were not thinking about what it meant to be caregivers of other adults or loved ones in the workplace, and how I very much felt unseen, like I felt like I was having to always, you know, bring it up, or fight the uphill battle, or, you know, people be like, we have to respect the mothers on the call because they have, you know, school pickup. And I was like, I might not have a kid, but my caregiver leaves at four o'clock too, right? Like my life changed just at the same time, right? And so I feel like I was always trying to make sure that we were visible and people understood it. There was more inclusive in their language. I shared this to say the whole point of when. Career and caregiving collide was to amplify the stories of us young millennial caregivers who were struck with this, you know, decision instead of choices of how to prioritize you and your career and what was next, as well as, like, prioritizing and showing up for your family and all that comes in between that and how do I, like, you know, get the necessary tools and resources to thrive, but also like, you know, where can I go to feel seen and valued? And I thought in 20 when I was 26 years old, that no one was going through this, that my story was so unique. And what I found, especially by sharing on social media, that, like, there are hundreds of 1000s of people who have a really similar story, or right, like, there's or there's moments of my journey that are, like, really similar to someone else. And so I've created this community of people who get it, and it's been really helpful and affirming and just realizing that, gosh, sure, we can talk all about the systems failing, but in the end of the day, there's, there are people who were genuinely right, like just doing the very best they can, and just want to feel seen and connected to other people doing the very best they can, right? So that's how it all started.

Natalie: 51:13

Oh, I love that. Okay, so I'm gonna stop us because and then we're gonna chat a little bit more. And after the confession, because there's just, there's more things I want to ask you so But JJ, let's go to sister questions and ask your question. So

JJ: 51:26

she's totally full of all this wisdom. And at her age, I'm just, I wish I was there, but I She's amazing. So I always say this is my favorite thing. When she said she's made so much with her mom, it was so it worked, because she's here, present and proximate, and I love that. When you said that, that's, I'm like, when I'm with mom, that is, that's my new statement. And the magic time, I'm like, that's beautiful. So, but here's my question, because I, you know, refresh nelly's Like, hurry it up. My question is, what would you tell before you knew this was going on? You know, at your your 20s self? What would you tell yourself if you were you know at your younger self? What would you what's the lesson that you've learned now that you wish you knew back then? What would you tell your younger self? Oh, I think two

Unknown: 52:15

things come to mind. One is, this is a marathon on a sprint. Slow down. You don't have to have all the answers tomorrow, and that it's important to let people in to your story so they can help you along the way, there is nothing you know to be ashamed of or wrong about asking for help and letting people wrap their arms around you. But I didn't know what I didn't know, right? And so there's that. But then also, just like a Jessica, your job will be a supportive place. And at the same time, it's just a job, and your mother's well being and your well being should always be first. I mean, I was burning the camera on both ends. I mean, I don't, when I look back, I'm just like, Lord, I don't know how we made it. I don't know how I did it. Like, it could have ended very badly for me, just like, mentally and physically, and it didn't. But I would have, I would have said, Jessica, it's just a job. You it'll work out. You don't have to stay in Dallas. You can move I would have go home, go home, go be with your mom sooner. Is what I would have told myself, actually, wow.

Natalie: 53:28

Okay, because I just need you to know, Jessica, that I'm an Eminem. I'm a hard candy shell on the outside, and I'm very soft on the inside, and you're making me want to cry. Oh, so I love that, I love that you say that because it's so sincere. And your job, there will be jobs. And I mean, JJ, and I are getting ready to do something big, and it's like, and I'm asking my husband, for example, like, Hey, we're getting ready to do something really big. I think it could be really impactful, and I might have to make some changes. And he's scared, and I'm like, there'll be another job, and I just have to trust in God that he's going to take care of me. And I think it was the same way in caregiving, like I trusted in God, like, Okay, I'm going to get through this. Oh, I just love that. Okay, I'm sorry, sorry. Look, we're glad we had our moment together in front of everybody. So here's my question. It's the best one, although I do love JJs question too, what is the one thing that you do for yourself? What is your guilty pleasure? The one thing that you do just for yourself? Listen,

Unknown: 54:34

I know that they get bad raps, but I love an amazing spa day, and I will, I will save my money to make sure it happens. And it requires discipline to like, well, financial discipline to like, put the money aside. I have to pay for a caregiver all the things. But I'm a connoisseur of you know, luxury spas and so that is a guilty pleasure, but a thing that I like to shut everything off, to put the phone in the locker to them I'm. Mom is okay to get the, you know, the massage, to soak in the tub, to do the sauna, like all that. Yeah, connoisseur, connoisseur.

Natalie: 55:09

I like that. It's, it's really, it's note that she has to get respite do all these things to do that, yeah, but when you do, you're able to fully unplug.

Unknown: 55:22

Oh, I was so unplugged, and then I'm so refreshed after like, I'm a better caregiver.

Natalie: 55:28

I love that. It's wonderful. Jess, thank you so much for being with us. This is so much fun that I just we could talk to you all day. I'd like, you're one of those people who were just like, I'm just leaning in. I'm just like, your girlfriend, hey. And the best part. I mean, are you still in Virginia?

JJ: 55:43

I am. She's gonna want to come and visit me too. I'm so sorry.

Unknown: 55:48

I'm like, Oh my God. And JJ, she'll be like, Why

Natalie: 55:50

is Natalie at my doorstep? What is my mom and Natalie just hanging out? I thought we were like that. Come on, Jessica,

Unknown: 55:59

we got to just double.

Natalie: 56:02

I lost some of the letters. Alright, guys, you know, stick around. We're gonna we're gonna chat with Jess after the confession. And so stick around. And for those of you who don't end up listening in until we confess again, we'll see you next time. Well, friends, that's a wrap on this week's confession again. Thank you so much for listening. But before you go, please take a moment to leave us a review and tell your friends about the confessions podcast. Don't forget to visit our website to sign up for our newsletter. You'll also find the video recording of all of our episodes on the confessions website and our YouTube channel. Don't worry, all the details are included

Unknown: 56:45

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,

Natalie: 56:56

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