The Cost of Dementia

Jessica Guthrie

This week, we talk with Jessica Guthrie of Career and Caregiving Collide, who is a full-time caregiver for her mother, Constance, who lives with dementia.

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Podcast Transcript

Published:
January 12, 2023
Please note: This transcript was computer generated and might contain errors.

Katie Wilkinson:  Can you start by just telling us a bit about who you are and, and who you care for and your caregiving journey?

Jessica Guthrie:  Yes. Okay, so hello everyone. My name is Jessica Guthrie and I am a caregiver of my mother who is living with Alzheimer's disease. We have been on this caregiving journey for eight years. Now, I started this journey as a caregiver when I was 26 years old and I was living in Dallas, Texas. My mother was in Virginia. And so the first half of my caregiving journey actually is a journey of being a long distance, caregiver and doing it from afar. But also traveling home multiple times a month to check in on her and be present. And then the second half of my journey is me very much living at home and caring for my mother in her home. I call out my age because that's a critical just part of my identity as a caregiver. I was young early in my career as an only child just navigating what it meant to be at

Jessica Guthrie:  Six-year-old and then tack on What did it mean to be a caregiver? And so my mother is now in the final stage of Alzheimer's disease and so she's currently on hospice home, hospice, and I'm caring for her as we figure out. What does it mean to be on hospice, but still thrive in her final months. However, long that might be. And so that's a little bit about me.

What does it mean to thrive on hospice?

Katie Wilkinson: And thanks for sharing. I have a couple of questions. I guess. First is a little bit about what it means to thrive on hospice. What have you learned so far? What's that experience been like

Jessica Guthrie:  Yes. Okay. So hospice

Jessica Guthrie:  Is one of the most misunderstood services, even I didn't realize all that went into hospice. So, um, I decided to leverage the resource in May of 2022, when my mother went from being someone who was like thriving, walking, talking singing dancing, everything to being someone who was no longer ambulatory, like she went from being able to walk down the hall to and from her room to now needing full assistance to sit up in her bed. And so she used. Now fully bedbound on top of having an umbrella infections and just us getting to a point where I was like, This is a really fast progression and everyone was like, Well, you should put on hospice, they have really great resources, they'll help you. And I I thought, you know, according to TV, You know, you go on hospice, the last two weeks of life like you're just, you're dying immediately. But that really isn't the case hospice very much. It's about keeping you comfortable in your final. However,

Jessica Guthrie:  Belong. It might be, but when you sign on the hospice, they say, You know, if your loved ones disease were to take its natural course, would they die within six months or less? And at the time at the top of May, my answer was, like, Yes, you're right. And so she was accepted. And so when I talk about thriving on hospice, I learned that hospice has a number of supports that that are there to support you on a weekly basis. So I have weekly nurse visits, who check in on her. I have a CNA one, just left to give her a bath multiple times a week. We've got music therapy, twice a month, we've got the massage therapist. We all have a social worker to help me navigate systems and so when I say thriving on hospice one, there's just so many people who now,

Jessica Guthrie:  Have access to understand the state of my mom. And, you know, everything down to a sniffle, a red eye or like, you know, a sore on her on her body. Like there's they're at the after, at the ready to help you, keep them comfortable and to solve whatever problem. And so we're I think she's thriving because she's comfortable, we're thriving because she feels safe and loved and cared for and the traumatic experiences of hospital ambulance.People not knowing who you are in the doctor's office, all that's gone.And I think my mom is very strong. Therefore she's like, you're not gonna get rid of me yet. I'm still kicking. It's been seven months on hospice and I'm still kicking, so yeah, she's doing great.

00:05:00

Katie Wilkinson: Yeah, I mean I imagine that's like piece of mind for you too. To have people that are saying seeing the same, the same things that you are. You know, it's hard to explain all like little nuances of day to day to someone who only sees them every other week or, you know, at the holidays or whatever.

Jessica Guthrie: Yes, yes, I think that's another thing too. It's like, I, as a caregiver and those who are listening, have probably been here but like, you know, you keep your little booklet of all your documentation,…

Katie Wilkinson:  Yeah.

Jessica Guthrie: right? Like every single trend, everything that's happening because it's special, when you're a younger caregiver, going to doctor's office is, you gotta be ready to fight, right? Like and not fight, but like advocate and, and ask for what you want and here, it's like, okay I can bring it down a few notches because my nurses keeping all those records and she is seeing the changes. And so it it brings the stress down for me as the caregiver too. In ways. I wasn't expecting

Katie Wilkinson: Yeah, that's awesome. I'm curious about, you know, you sort of misunderstood what hospice was before you guys were using it. I'm curious about like how you found hospice care and how you chose this company or agency that you're working with. And what was that experience like

Jessica Guthrie: Yeah, you know, social media is a blessing and a curse. And in this case, it's a blessing because I, I had a few friends on Instagram, Who's who They had just put their parents on hospice and I was like, Oh that's like that's an interesting experience. She's getting all these supplies and like talking about this and that's okay. Interesting. And then I asked a couple of friends like Do you have any resources for me to understand more? And, you know, they had navigated the system with their loved ones. I was like, okay so told me their experiences and then they gave me some folks to follow in social media for me to understand like all the ins and outs of hospice. So I had all that information and then

Jessica Guthrie:  Friend Jennifer, she said you need to shop for hospice like you shop for your doctor. She was like in the end of the day, it's a Medicare program and every hospice is different. And so where I live in, I live in a smaller town. I'm sure if I was like in Dallas or a larger city to be more options, but there's only about two hospice options or agencies where I live and I was already using home health through this agency. So I said, You know, I know the good and the bad and the ugly here is, let's just stay with this, you know, family of companies. And so I stayed with them and that's pretty much how but I I did my research, I looked to see like, What did they offer? You know, what were the reviews saying about how people's experiences were? And you know, this is the lesser of two evils so I chose this one.

Katie Wilkinson: That's fair. Yeah, you mentioned Medicare,…

Jessica Guthrie:  Yeah.

How are you managing the cost of hospice?

Katie Wilkinson: I'm jumping ahead a little bit but part of you know, this podcast in the conversation so we hope to have as a round like How to how do we find? Resources that We Can Afford, How do we afford these resources? And if you're comfortable T-shirt,…

Jessica Guthrie: Yep.

Katie Wilkinson: a little bit about like the cost of hospice or how you guys are managing that piece of the equation.

Jessica Guthrie:  Good question. So there's, um, different types of hospice agencies but the one that people Or the way in which people typically leverage, it is through the use of Medicare because my mother is 74 years old. Obviously, she's clearly enrolled in Medicare and her insurance is a Medicare Advantage plan. And so the way it's currently set up, that hospice is fully covered by Medicare. So there's no more like out of pocket costs. There's no more co-pays like you would have if you were going to the doctor or the emergency room. And so literally everything is built now. Clearly, when it comes to Medicare, there's still a deduction of, you know, whatever the cost of things like 140 a month that my mother is obviously getting deducted but there's no other cost for Medicare from. I did look at one of my bills though it seems as if

Jessica Guthrie:  A typical month of services from hospice range between 5,000 and $6,000 a month. That is then billed to Medicare and then just go straight to the hospice company. Now, there are like four profit, hospice agencies and then, of course like if you have the other means to pay for, you know, direct service, you could do that, but the majority of us in the United States will be using Medicare for hospice.

Katie Wilkinson: Awesome. Yeah. Thanks for thanks for sharing. It is wild to see those numbers that get billed. And what even just prescription medications or this sort of thing. Those numbers are wild

00:10:00

Jessica Guthrie:  While yeah, uh-huh. It is interesting too because every hospice agency is different. And so, like I name all the things that I have that, I have another friend, she's like, Oh I didn't have any of that, I was like I would be curious to look at our bills are we billing the our our company is billing Medicare the same and are we just getting different services and then you're just like that feels unfair, you know, there's a lot of questions.

Katie Wilkinson:  Listen here. Yeah, that's so interesting. And you mentioned previously that you were long-distance caring for your mom before. And now you're obviously, she's you guys are living together and and it sounds like you, you know, did a big big move in that just shifting gears for money a little bit, but keep talk a little bit just about emotionally for you. What was that transition like?

Jessica Guthrie: Whoa, yeah yeah. So I had my career I have starting my just like my professional life in Dallas. And like everything was there. Like I, I graduated from Dartmouth undergrad in 2010 and then I did a program called Teach for America that sent me to Dallas. And so, like that was the place that I was to, like, to grow up as an adult. You know what I mean? And so leaving, Dallas and making the choice to come back home and like literally at the time live in my childhood bedroom right to be here. It almost felt like

Jessica Guthrie:  Am I going backwards? Am I a quote unquote failure? No, I'm not. I'm highly educated. Great job. I'm not a failure and I'm taking care of my mom. Like this is, this is noble, and that's what you should do. And like, I absolutely would change it for the world, but at the time emotionally you're just like, I feel like I can't see beyond right now. I'm giving up so much, I was very much feeling, like the victim, all of this is happening to me, right? Um, what about opportunities in my job? What about, you know, people still wanting to like, you know, be my friend and invite me to things. Like all of that was like, going through my mind and I'll never forget packing up my apartment in Dallas. And I just pulled an all nighter because you know, we never pack appropriately. You just kind of stay up to you're done and I remember like closing the door and then giving my keys to the apartment leasing person and as soon as I

Jessica Guthrie:  Handed her my keys. I just like burst it out in tears and she was like, Are you okay? And I was like, Yeah, but my, my life is over. Okay. You know, so young and you're just like I I can't see what's next. I just know. That I'm supposed to go take care of my mom and I remember like, even going to the storage unit and like be like, okay, it's a new chapter like all my stuff's in storage and so I share those little anecdotes because I think that that is a true picture of where I was emotionally. It's like, I knew what I was supposed to do, but I also felt like, Oh gosh, I feel stuck and will I be behind or will I be missing out on something? However, that was right before the pandemic and what 2019?

Jessica Guthrie:  And once I got here, I started working virtually and being present with my mom was like, Oh, this is the right choice, right? Like my mom, loved having me home and then bam, the pandemic happened and I was like, Okay, welcome to my world, everyone's working virtual this is, okay, this was actually a blessing in disguise. They get like a leg up so this wasn't difficult for me so it all worked out.

Katie Wilkinson: Yeah, I can totally identify with the feeling of feeling like you're moving backwards. I also moved home cross country. When my mom was sick and it I had this the same feeling like I feel like I was on, you know, had this like momentum forwards, then it felt like a pause and it's hard to see in that moment. Which is maybe true of like all seasons of life,…

Jessica Guthrie: Yes.

How has caregiving impacted the way you look at spending & saving and thoughts of the future?

Katie Wilkinson: but just hard to see, like, what else is gonna unfold? And so I totally, I totally identify with that. And I'm curious. Shifting back to talking about finances. You know, what are some of the ways that caregiving has impacted the way that you look at like spending and saving and just general thoughts of of the future and that regard.

Jessica Guthrie:  Oh my gosh. You know, it's interesting. So, you know, I'm a huge proponent of like financial. So I, I'm an educator. I was a teacher and now, I lead to education. Nonprofit. So like education very much. Matters to me and also like ensuring that we are educating our children for like life, right? And be able to thrive as human beings. And so a huge part that's like true financial. I believe like we should teach you financial literacy, can't you be investing in schools? All the things I say this as someone Who did not have good money habits? Nor did I see good financial habits from my mom.

00:15:00

Jessica Guthrie:  And I I start here because when you grow up in poverty, right? When you grow up under the poverty line and you see your mother working, check to check when you see, you know us having to rely on different systems just to make it. And how much she sacrificed for me to get to where I am today. You have a different orientation to money. And I just wish. I just wish I was a better saver before. All this caregiving stuff happened. I wish I knew more about how to make my money work for me because that would have served me really well as a caregiver. But I digress. I'll start there. However, I think how this is impacted my outlook when I first started.

Jessica Guthrie:  I told you I was 26 and I was living in Texas. I worked for a nonprofit, so we weren't making a lot of money. Okay. But like, in my month, okay. I need to get any plane tickets home. I gotta figure out a way to get from point A to point B. And so, what do you do? Open up a credit card, right? So like I'm like, now racking up all this money here. Oh my gosh, my mom is losing tons of weight, she needs a new wardrobe. I can't, she can't go to church, or be out in public looking. As if something is wrong with her, I've got to go pay for this. Oh my goodness medical bills. I didn't realize I could be sending them in because she wasn't making much money. I could have been getting those like written off. I didn't know that who was I would took paying stuff up and so I'm up here like charging and spending as if I had it.

Jessica Guthrie:  And I, for sure as heck didn't have it, but at the time when you're under so much stress and pressure, you just make all these choices to stay afloat, right? And so, you know, fast forward, eight years. I'm just like, what Jessica that was awful. Why why? And so now you know, I'm I'm at the position, I meant I'm in a position right now, pay off those credit cards. Like I'm doing that, you know, as quick as I can and I'm making different choices in terms of like where my money is going. However, I am now dealing with the consequences of choices that I made under pressure and stress and a desire to keep a certain

Jessica Guthrie:  facade up because that's what you do with Alzheimer's, right? Like you protect your people's dignity as long as you can.Um, sorry, I got on a tangent but that's where I am. I am currently in a space. Now, I'm just okay, so how can I pay off this debt? But also start investing money because I want my money to start working for me and then also, I'm just like, okay, cool. I now have to figure out How do I make sure I have a steady stream of income because I now fully like employ someone to take care of my mom. Because that's very real, like not take care of her. But for, you know, So I can work, you know, a certain number of hours a day. Okay? So you make sure that is happening and I was like, okay, I need this much money to spend my mother's now paid off her house and so like it's like I'm now thinking smarter around where my money is going and how I'm Making it work for me for lack of a better friend. but it's been a journey, and I there was honestly

The reality of balancing finances as a family caregiver

Jessica Guthrie:  [18:20 SHORT CLIP | Caption: ] Here's what I'll say as a caregiver, everyone's like just go do this. go do this thing and you're like, Okay, or even like the question of like we'll go, um, you need to trust folk set up a trust and you're like, you know, how much it costs to like speak with a lawyer to set up a trust, or like your mother needs xyzing. You just like that's $5,000 I don't have 5,000 to either charge it, or you just don't have it and you risk it. You mean like there's just the things you end up holding, like I know I'm supposed to do this but I can't do this right now. So I'm just gonna make it work and just like keep my fingers crossed she doesn't die, you know, I mean, like it's that real as a caregiver, you know? What?

Katie Wilkinson: I do know. Yeah. And I mean, thank you for sharing about like, I mean the the reality of, you know, not just your situation but so many people are going into debt because you don't know what else to do and this like juggling act, they just described is really real. And,

Katie Wilkinson:  You mentioned, you know, you're employing. Someone now, you've I think I saw on your stories that you paid off like the first credit card that you open. So congratulations on that. That's exciting. And that must feel good at that. Wasn't really where I was going with the question that you're employing. Someone now, obviously, you know, circumstances have changed for bet you have hospice now, but you've been caregiving for eight years And you just mentioned, people are like, Go get this. You need this thing in your circumstance. You know, what are some of the things that you were spending money on as a caregiver?

Katie Wilkinson:  Yeah, like, I guess. What What was what's my question? What are some things you were sending on as a caregiver and which ones, you know, which things would you still spend money on or which, you know, like money mistakes. Did you make that you maybe want to avoid or want to share that someone could avoid in the future? This is kind of a broad question just like, Where's your money going? As a caregiver,

00:20:00

Jessica Guthrie: And yeah, your money's going the most random things like everything from.

Jessica Guthrie:  Clothes food. I also like, you know, full on Meal Prep to make sure she was eating, right? She couldn't shop for herself. Like now, you're like buying groceries every two weeks like on top of your own groceries, right clothing. Um, medical bills, flights because I was traveling back and forth. You even though, at the time I didn't own, my mom's house, would you become the person that starts to fix everything up? So like, Oh yeah, you need a new refrigerator, you need to washer and dryer, You need a new HVAC system, Okay? Right. And you're just like because my mother doesn't have it. Like my you talk about this generations of this. My mother doesn't have a large saving. My mother doesn't have any investment. My mother doesn't have any other properties besides her home. I like it. So who who gets that is the child, right? And so like all of the home things which rack like every other something, you know, all things with her car because my other even though my mother was no longer driving because I was

Leveraging care agencies as a family caregiver

Jessica Guthrie:  Distance, I would use her car which then meant I had to keep up her car. So all that comes with that. I also think that, like, Any like expense that came across, whether it was household or even just like personal from my mom, I ended up picking up. So all of that which become almost like monthly or you know, by weekly costs depending on what it is. It just adds up, it adds up, and then so there's that.And then about halfway through the journey because my mother had started wandering and leaving the house.

Jessica Guthrie:  It was like, Okay, she's bored. Okay, we gotta we gotta find some way to have someone be there with her. So that's when I started leveraging care agencies about four years ago and I could only afford having someone here three days a week for four hours at a time. But at the time that's our that is what twenty seven dollars an hour, right? And so then you start to add that like that was also a huge cost again that I was paying for. In high like where I am now just like, okay. I this might be a separate question, so stop me if I'm getting ahead of myself but I

Jessica Guthrie:  realize that I could my mother potentially qualified for Medicaid because in Virginia leveraging, Medicaid it at least help go towards the cost of caregiving and when I went the first time so this is now Four years ago, three years ago, that it's all blending together now. But when I went the first time to get the advice on like the steps to take the woman, she said Your mother makes too much money and I said How She was.

Jessica Guthrie:  A pair, and then she has her Social Security check. You mean to tell me? That's too much money in the state of Virginia. She was just above the cutoff and she was like, Virginia has one. It's like one of the stricter states. And I was like, what? In the world? And I said, So what are family supposed to do? And she said, Well family is just exhaust their resources and I was like, I don't have any other resources to exhaust.And she's like, well you could sell the house and I was like, absolutely not because one thing I do know, my mother bought this house for me. My mother built this house from the ground up for me. So that's the last thing I want to do. So I share that story because I'm just like, okay, in hindsight I would have loved to have been on Medicaid I would have relief the cost of that caregiving because that was turning out to be you know 2,400 a month um, at least and she

Jessica Guthrie:  She didn't qualify which was like heartbreaking. And so then I was like, So what am I supposed to do now? And people like Well, just apply for this grant and you're like that Grant is only $5,000 I could apply for it but like it doesn't go that far and I'm too stressed out. I don't have the time so I'm I didn't I never did it. So I probably when I reflect there are probably spaces where I could have gotten some financial relief and support even now my mother. Now, because of her where she is in her illness. She would qualify for Medicaid SHEARLY because she's now on hospice and but that process is too long to drawn out too stressful. I don't go through that, right? And so I would rather, I'm now making financial sacrifice because I don't want to deal with. that like the the systems, you know, I got off track, but I answered Part of your question.

Katie Wilkinson: No, I think you answered my question and more, I think that's really useful for people to hear. I get you touched on us a little bit, but I guess like looking back, you know, a grant for $5,000 or a little bit of financial aid here or there would you have Like now, looking back, would you spent the time and energy to apply for those things or do you still think maybe it wouldn't make that much of a difference in the big picture?

00:25:00

Jessica Guthrie:  Oh, I think any amount of money would make a big difference, but as a caregiver when you're in the weeds and for me, working a full-time job. Taking care of my mom full time, cooking cleaning being present by the time it comes around, even though I know it would have been helpful. I didn't have the mental space for And so part of me is like, okay, how do we make access to funds a little bit easier for people because without them having to jump through so many hoops, right? Like I'm not I'm not trying to scam anybody, I'm real like it's a real journey. So how do I, how can I get funds without having to spend more than 30 minutes on something? You know what I mean? Because I just don't have it. And so, yeah, looking back. Absolutely Jessica. You you could have made time but in the grand scheme of things, she was like, Oh no, there wasn't enough time.

Katie Wilkinson: I also think, I mean, we hear it all the time but it's like caregivers you have to take care of yourself, you know, like self-care. And it's like, I don't know. Yes when you're that exhausted or that run down it's like Okay. This is my minute to like nap I want to fill out a form I don't want it like I totally understand you know looking back you say Okay make time…

Jessica Guthrie:  Yeah.

Katie Wilkinson: but in the moment I understand how you're like. I just can't just can't do that right now and

Katie Wilkinson: I was gonna just do a shameless little plug for givers just about. That's what we're, you know, we are. Hoping to make this a little bit easier for people so that you don't have to carve out. Hours and hours of filling on paperwork and tracking down the system and calling the office. And all of this, we are trying to make funds more easily available to people because we know, You know, there's a, there's a time and like, emotional cost, um, even is trying to find resources that are available to you and you've shared a bit about like your your journey at large I guess.

What have you learned about managing your money in your caregiving journey?

From where you, sit right now, I'm curious about, you know, well what's working well in your systems for managing money and and where do you still feel like, you know, what could be even better? Where do you still feel like you need help in how you manage money or insurance or financial resources just sort of all of those pieces?

Jessica Guthrie: Mmm. It's working. Well, okay, so I can speak in terms like lessons, okay? So

Jessica Guthrie:  for me, I I think over whether it's, uh, when I say Given this journey, I am crystal clear about my own, my personal financial path. In setting up, whatever my future family will be. I say this because I think that wasn't where my head was eight years ago but like Yeah, I've got my life insurance policies set up, right? Like and they are more than like what my mother is currently is You know I've got my own like Will and trust set up, right? And you know, I'm not making a whole bunch of money, but I think one thing I've learned is like How you create generational wealth? How you set your family up starts now and if something were to happen to me, whether it's tomorrow or in the next 10 years, I want to make sure if I have kids or any or family member that they are not struggling. Like I am currently struggling to care for my mom.

One thing I've learned is like How you create generational wealth? How you set your family up starts now and if something were to happen to me, whether it's tomorrow or in the next 10 years, I want to make sure if I have kids or any or family member that they are not struggling like I am currently struggling to care for my mom.

Jessica Guthrie: You know, it's a side note, but it's connected. I when I was on family, leave. August through October. I spent the time to go visit funeral homes to prepare for my mom's like end of life service, whenever it happened. I just wanted to have it done, you know, and you realize how expensive Like funeral costs are and you're like, What in the world, you know? But you realize like, okay, sure. Now I understand why you see people have like gofundme. So they don't have life insurance. They don't have it set up. And I was like, Oh no. So my mother's life insurance policy through her.

Jessica Guthrie:  The school system. It's like a baseline policy which will cover the funeral costs, but that's it there's nothing else, right? And so you're just like, Okay, Whoo can't do that. So anyway, I I think about that because I now know how expensive even after life is for family members. Anyway, I digress. So I feel like I'm more clear about the steps. I need to take being in the future but my current world Um, I was telling someone this, they were like, You know why why are you still working a job that's based in Texas.

Where career and caregiving collide

Jessica Guthrie: Why haven't you moved closer to home in terms of like your job? Why are you still working for like a big job? I shouldn't you don't you want to do something a little less? And I was like I don't think you understand is that I have no choice but to work because I need I need to get paid in order to keep up the life. And the care that I have for my mom.

Jessica Guthrie:  And so I say this because I think too often as a caregiver, you're putting this like space, like What choices? Am I making financially in a huge one of those like working and like being employed to have a consistent stream of income because you are the sole provider for your loved one. And I think that that is that as a choice that I made But like I knew if I moved back home, I would not be making near the amount of money that I'm currently making, nor did I have the brain space to even think about a different type of job. Even if that meant me having more time with my mom, I share this as part of like my own financial future because I think that like that's those are trade-offs, You make and at 34 almost 35 to set myself up financially. I need to keep my job so I can still be ready beyond the caregiving experience. You know what I mean?

00:30:00

How finances change throughout the caregiving experience

Jessica Guthrie:  Um, and the last thing I'm just gonna say is like, I think now I because The more progressed your disease becomes the less you're paying for the less she eats there's no other doctors visits. I'm not having to Transport her anywhere. And so my money's not leaving me as fast as it was five years ago. And so now I'm just like, okay, what are all the things I need to do to like set up savings for me and also if I am spending for her, I'm not okay. What are the things that I can like write off? On my taxes, what can I do? That's part of like, now that the house is in my name, like, how can I put it under like house fixtures? So, I'm just being more smart about choices that I'm making, because I have, the time to think about smarter choices and I have

Jessica Guthrie:  Is that a huge cash flow? But I have a flow of cash. It allows me to make different choices because when you are strapped and you're thinking about, Do I do fifty dollars for this or $50 for that. You not thinking about the best choices, you know I'm saying? Um, so I think I'm in a space to see that more clearly. Now that makes sense.

Katie Wilkinson: Yeah, that makes a ton of sense. I guess in the same vein. You know, you're talking about how you're setting yourself up for, you know, fight future financial. Success or everyone call it. And you're talking about, you know, how do I save money on the house that I save money here? What resources have been helpful to you in like learning that this is just you Googling because you've got time to, are there particular accounts or websites that you like

Jessica Guthrie: That's a good question. I would love if this is what a thing that givers can do or can point me to like I would reputable people to tell me the right stuff like even when it comes to understanding my taxes, like, I had to bring those questions to my tax preparers. Like one find a better tax person but two I think like I'm I watch people on Instagram. It's like random influences. Okay. Let me let me write those questions down and then go like confirm, right? Like or go Google or you know, go ask someone else. And so honestly it's been like other people, helping me make. Better choices. Be like, Oh yeah, I did that with my loved one, go do this and…

Katie Wilkinson: Right.

Jessica Guthrie: so That works for the first step. So that's not sustainable. That's not like generational knowledge and so I wish I could either like Go somewhere and have like up to date modern like next steps that I could be taking because right now it's hit or miss you don't know what's real, what's not? And there's nothing that like walks you through step by step and so I'm really like Oh that person did that. Okay, let me go see back and do that, you know, like that's that's probably not the best.

Katie Wilkinson: Well I guess I mean yes you're right it's not the best. We can probably find a better solution and I guess until we we find it or I mean like behind the curtains a little bit, you know, we want to we at givers want to make valuable like resources and tools for people and so I don't think we have what you're looking for yet, but you know, behind the curtain that's useful for us to know about like what can we be building out? And what experts can we pull in to get information all in one one place?

Jessica Guthrie: He?

What has been rewarding or challenging about working and caregiving at the same time?

Katie Wilkinson: And this isn't really a question, the specific question, but like you're you're handle is, you know, career and caregiving collide. Obviously working is important to you, in addition to caregiving and I guess just like any thoughts around. this is just like, can you speak a little bit to working and caregiving at the same time and what's been particularly challenging or particularly rewarding about

Jessica Guthrie: Yeah, so I came up with win career and caregiving collide because when I became a caregiver it felt like it was truly like a collision with my like professional and career life and like, you know, when those two collide it can either be a chaotic thing or you can make it like there can be really great synergies and balance and I've been I recognize my privilege and saying this. I've been really fortunate to work at a place that's been so supportive of my caregiving journey. That is not the case for everyone. And even in such support, there's still so much room to grow to be better supports of family caregivers, but I think holding both

00:35:00

Jessica Guthrie:  Um caregiving and being a career person. It's taught me a lot about setting clear boundaries for myself particularly in my work environment. I am no longer able to burn the candle. At both ends, I could not be available all the time. What does it look like for me to be a productive team member from afar? And so I I've learned a lot around how do I still stay really present and proximate to my work and also present approximate to my mom and that takes some negotiating of energy and time that takes saying no to a lot of things that also takes Trusting and believing in all of like the work that you've done thus far. That people don't think you're seeing on the couch eating bonbons, right? Like I think, A lot of my struggles balancing career and caregiving in the early years.

Jessica Guthrie:  Was because I had made up in my mind, what it looked like to be professional, what it looked like to show up at work, and I was creating more stress for myself versus pouring that into my mom. And so now I'm really clear about my energy, my time how I can, you know, contribute and then what does that also mean for like how I show up for the people that I manage? And I think if anything now that I'm eight years in my biggest lesson is like Jessica people are looking at you to be an example, even if you don't want to be around how they can, Show up as human beings in their workplace and still be a caregiver. How can I, you know, my people and my job are now like, Oh, like Jessica's resting. I should be resting too, you know? And so I think where I'm at now. I'm realizing like this is a

Jessica Guthrie:  It's a dance. It's not a perfect balance, but it's one where, like, your values and what your your boundaries and like your integrity is on display and you can choose to Me either way, but I think people really appreciate when you show up honestly and like, our vulnerable about the vulnerable, about the realities of what you're holding.Oh, there's so much there. But I, I do think that, like, One of the things you often hear is like, I I don't know how I'm gonna pay for x, y, and Z. When it comes to caregiving. I have to care for my loved one and I can't afford not to work. And so for me, it's just like, okay, how do we make both work?

Jessica Guthrie:  Because we are not in the position to do anything else, but to do that and I think my greatest lesson is like it's possible. You just have to like, Be convicted about what matters most to you and not waiver from that or else you will be carried away with whatever your work requires of you or whatever caregiving requires of you.

Katie Wilkinson: Sure. And then no one's getting getting the best the best of you or no one's getting the best for them like the yeah.

Jessica Guthrie: Yeah. Yeah.

What’s your top tip for other caregivers?

Katie Wilkinson:  Thank you for sharing that, and you've shared like a ton of Your lessons, which I think then become advice for other caregivers, no matter where they're at in their journey, but we do like to ask everyone, you know, if you can give like one tip, like What's your top tip for other caregivers, What would it be?

Jessica Guthrie:  My top tip is. You're truly doing, this is maybe. A one-liner than a tip you're doing the best you can. And I think that there's there is no mold. There is no archetype. There is no model for what it means to be an excellent caregiver. We create those in our heads, but what your loved one truly needs from you is for you to continue to show up. And to say, Okay, yep, here's where we fail. Here's where we got it. Right. And I'm gonna try again tomorrow. And so I guess the tip is Continue to show up because you're doing the best you can with what you have and the knowledge that you have right now and the best thing you can do for you is to like recognize that and to get back up the next day and take your lessons and involve from them.

You're doing the best you can. And there's there is no mould. There is no archetype. There is no model for what it means to be an excellent caregiver. We create those in our heads. But what your loved one truly needs from you is for you to continue to show up. And to say, here's where we failed, here's where we got it right, and I'm gonna try again tomorrow.

Katie Wilkinson: Thanks. You said it's a line and not not a tip. And I think I really needed to hear that today to keep filling up because some days it just feels like you don't want to anymore. So thank you for sharing that.

Jessica Guthrie: Yeah.

Katie Wilkinson: I mean, just with me and hopefully resonates. Oh, resonates with someone else also. Thank you so much for taking the time to to chat with us and share so much of your, and your mom's, you know, story together. If people want to find you online, where can they find you?

Jessica Guthrie:  Yes, the best place to find me right now is on Instagram at when career and caregiving collide. It's the same page on Facebook, when career and caregiving collide website coming soon, but start on social media first.

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