Everything is Temporary: Caregiving From A Distance

Jess Smith
Jess Smith

Jess of Alzheimer's Awakening shares her experience as a long-distance caregiver.

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Podcast Transcript

May 4, 2023
Note: This transcript was computer generated and might contain errors.

Jessica Smith:  Yeah, absolutely. My name is Jessica Smith. I am a caregiver for my mom Patty. I am her long distance care partner and advocate along with my stepdad. She has, she was diagnosed with Alzheimer's, back in 2014. It took some time to get her, to go to the doctor, and to actually eventually get that diagnosis, but, You know, since then, I really decided to just go all in and show up for my mom and every single way. Possible throughout the years, over the years, I had lived in Florida, where my mom lives and in 2017, I moved to North Carolina with her blessing. I was a huge part of why I moved. My mom really encouraged me to move and be with the love of my life Ken. And so I did

Jessica Smith:  And she was, she was pretty okay at that time. But now as the disease has progressed, it's definitely, you know, made things a little bit more difficult. I have to, you know, visit her much more often I'm seeing her probably every three weeks, maybe four weeks and whether that's in Florida or in North Carolina. But, you know, going forward, more than likely, it's going to be in Florida because unfortunately this disease just really affects every every inch of my mom's life and ability to do things. So, So that's kind of a snippet of our caregiving journey up until this point.

When you suspect something’s wrong but your loved one won’t go to the doctor

Katie Wilkinson: Yeah. Thanks for sharing and it sounds like a lot of travel and just logistics. You know, in addition to every day stuff and you mentioned it and I know you share pretty openly about this. That it took a while to get a diagnosis you know she was I'm not sure. Can you just tell us more about that experience? I was like for her. What was it like for you guys?

Jessica Smith:  Sure.

Jessica Smith:  Yeah, glad to share. So, you know, in the beginning, we, we notice some things with Mom, just like every other story with Alzheimer's, you just start to notice things are off in different ways. For my mom, one of the primary things that I noticed was her inability to keep her linen closet straight. Now my mom's linen, closet she would brag about this linen closet and look at how I have all of my, you know, decorative towels organized by the holidays. So the next holiday is on top and then you put put it on the bottom when you, you know, when it's over. And, you know, because my mom is just really proud of the things that she owned, because we grew up very lower lower middle class, and she didn't have a lot of things. So, as she got them, she got very excited about them. So, I didn't notice that was probably the first huge sign, is, I open that linen? Closet on a visit to Florida, and it was in disarray and honestly, that made my heart drop. So I immediately

Jessica Smith:  He talked to my mom and my stepdad about going to the doctor and just talking about what was going on. And honestly, I had no idea about anything neurological at that point in my life. No one in our family had this disease or anything like it. So, We ended up having to have several family interventions and to get my mom on board with even going to the doctor. And I can understand looking back. I mean, this has to be one of the scariest things that could ever happen, is to know that your ability to think on your own is going to begin to fade away. You know, Um, but she She just would not listen to us. And my mom is a very strong-willed woman and she just thought she knew best and she would be fine. It was probably the third family meeting that we had about it that she finally agreed. But we had to, we had to quite frankly like

Jessica Smith:  Threatened to not not be as president in her life and things like that, you know, cards that nobody wants to play, you know, maybe some people want to say that to their parents, but what? But I didn't want to say that to my mom, you know? And so that was really difficult, but I'm glad she finally listened. When they went to the doctor, she did get the diagnosis and she threatened my stepdad to not tell us you know She said I don't want my family to know. So I'm sharing all of this in candor because I believe it's really important to know that this is very common, you know, I get questions and stories like this all the time sent into my mom's Instagram page because

Jessica Smith:  You know, it's hard for anyone to deal with this. So that's how the initial diagnosis unfolded, with a lot. A lot, a lot of urging and, you know, concern from from all of us, it's myself and I have two younger sisters and my dad was also involved, both of my parents and my parents were, were married for about 25 years. And so they had long history and my dad was very, you know, he is very still present in her life and, and with my stepdad as well. So he was also involved in in helping us get that diagnosis for her.


Katie Wilkinson: yeah, I mean, I really appreciate you sharing it and candor for this exact reason and I think It's scary, especially the beginning to, you know, navigate this and understand it and it's also awesome that you know there's so many people involved in your mom's care and part of this ecosystem and…

Jessica Smith: Yeah.

Katie Wilkinson: We can move on to this in a second, but early on, when you were trying to get a diagnosis and your mom was like, Don't tell the kids. And, you…

Jessica Smith:  Mm-hmm.

Katie Wilkinson: you were talking to your stepdad. You guys weren't in the same place necessarily like, what, how are those conversations? Like like how did you bridge this How was your stepdad, you know, being respectful of your mom but also being transparent with you? Just what was it like these conversations? What were they like?

Jessica Smith: Very uncomfortable. And I still lived in Florida at that time. My, my family lives in northeast Florida. I was in central Florida in Orlando. And so it was only about a three-hour drive, so I would go up there often. But the initial, the initial reaction from my stepdad is he knew? He needed to tell us so he did end up confiding in me. And then honestly from there, I was just all about facing it and I was, you know, both myself and my sisters. We just wanted to face this head on so it was very uncomfortable, he didn't want to you know make my mom just trust love him. quite frankly, I think he was a little Nervous around my mom since my mom was so headstrong. I mean, sincerely he I think he was just a little bit, you know, scared of her. What is she gonna do? But

Jessica Smith:  You know, over time and many talks, I think my mom finally came around to the fact that this is happening. However, my mom did not take medicine at first. She did refuse taking medicine and I'm not sure if that's another common thing. But, you know, so even even though we knew the diagnosis was there, everybody in the family was actually aware. You know, the next step was getting help and therapy, and she was just not about that at all. In fact, unfortunately, some behaviors got worse, you know, she started drinking a little bit more to Self-medicate, which I can understand that is probably a common factor too people just trying to disassociate, we as human just do that, you know? But so we did notice some behaviors that were actually making the disease much much worse.

Jessica Smith:  You know, so so it was a difficult difficult time at the beginning and honestly that was probably one of the most difficult parts of the journey. And something that I learned recently is that denial is actually A symptom of Alzheimer's that happens in the beginning. I cannot think of the word. It begins with an A but there is that is actually a symptom. So I don't know if it was my mom consciously, you know, denying this or was it, you know Alzheimer's, you know, masking it. It's such a complex disease, you know.

Katie Wilkinson: Yeah, that's that's so interesting. And maybe a question that like can't be answered, but that's an interesting observation about your mom's early experience.

Jessica Smith: Okay. Yeah.

Katie Wilkinson: So you have two sisters, you have Ken, you have your stepdad, your dad.

Jessica Smith:  Yes. Definitely.

Coordinating care as a long-distance caregiver

Katie Wilkinson: Like there's a lot of people involved and How do you guys? And now you're not in Florida, you obviously, you know you're traveling and and they're a lot, but how do you guys coordinate care like what? How frequently do you talk? What kind of systems do you use? Like how are you coordinating care between all of you?

Jessica Smith:  So um we pretty much figured out what our strong suits are. So I am the emotional one. So I am the sister that shows up in in physical ways. I am the one that speak to her my stepdad every single day.

Jessica Smith:  I always do a quick check-in call, just to make sure everyone's okay. My younger sister Angela. She is very data driven, she's very logistical. She's very, you know, financially responsible and she so she has the power of attorney. She has, she helped with their finances at the very beginning of all of this and still, is that advocate for financial and and other other things that are kind of out of my purview at the moment. But and I show up when it comes to, you know, visits and bathing and things that are very literally hands-on. And my dad actually is the one who is contributing financially to the family for, you know, and supplementing, some of my mom's care. And, you know, we may get to this in a minute but I, you know, I just


Jessica Smith:  I think it's so beautiful that my family could come together in this way where, you know, my dad could ask my stepdad. Is this something that I can help you with in a very respectful and loving way and, and my stepdad accepted. So I'm sure you know there's some sense of Am I enough? Why does this other person need to help? But I'm glad that ego kind of fell away and you know everyone was able to pitch in the way that they did. So you know, when it comes to the day to day, caring of my mom, it's definitely myself and my stepdad that are most involved hands down. But we couldn't do what we do without the support of the rest of the family.

Katie Wilkinson: Yeah, that's awesome. I mean it's I'm glad you guys have all sort of discovered your strong suits and what you just shared about your dad.

Jessica Smith: Okay.

Jessica Smith:  Absolutely.

Katie Wilkinson: Distance caregiver. Like just what your experience is like there. And then I'd also love to talk about, you know, how you're funding your mom's care. You just mentioned, your dad's contributing and you know what's happening with insurance or Medicare or, you know, out-of-pocket costs. Just what's that? Look like for you guys.

How are you funding your mom’s care?

Jessica Smith: Here. So, so, yeah. So they have, they have their insurance, they have Medicare. My dad is supplementing. The the in-home caregiver. That comes five days a week for four hours a day. So that's his financial contribution. you know, the finances as you're very familiar with are a huge

Jessica Smith:  Hardship. For for most people, even if you are like well off, you know you have to literally be rich in order to to pay for your own care. The way that we all deserve. I mean, rich rich, you know, this our system is not set up to make it easy for anyone to get the support and end of life care, that that we all deserve or care through disease that we all deserve. So, so, you know, they, they have these normal channels, my mom and my stepdad have gone through their 401ks. They've gone through other savings that they've had, you know, they're able to maintain the day-to-day but when the time comes that my mom does need to go into a home full time. If that's the route, we go.

Jessica Smith:  They're going to have to sell their house in order to do that, you know, and we've already started that process just to get things moving, but my stepdad is very resistance resistant to moving. One way that we would like to help financially is to have my mom and my stepdad move in with us to our home. We bought a home Ken and I bought a home with the premise that they would live with us and that's what we were hoping for, but he has been so resistant to that change, quite frankly, I'm just hoping that Something happens internally with him like that. He realizes like I can't, I cannot do this on my own anymore so that we can help them financially with those costs as well. because,

Jessica Smith:  I can't have my stepdad spending all of their resources on my mom because then what's gonna happen to him, you know, my step Dad's 75 and while he's in relatively good health right now you know we all live in bodies and they age and die that's gonna happen to all of us you know. So I want him to have some sort of savings or finances that he can fall back on too but it's just the way that our our system is set up. It's just so difficult to to be able to do that. So that's sort of what the finances are looking like right now. There are all over the place. We are starting to get to a point with my mom. I realized after this last time with her. That you know, something is going to happen and some some major changes going to have to occur

Jessica Smith:  Because financially, we're not going to be able to support her just in the home for much longer. Her mobility is starting to change. She may be you know wheelchair-bound at some point towards the end of the year. I'm not sure. But you know we're gonna have many more costs associated to this disease and quite frankly I don't feel like our family is really ready. I've been trying to get us ready. My sister Angela has also been trying to get us ready but When you have different people in the mix that are sort of resistant like my stepdad right now, I love him, he's doing so much good for my mom and our family but there's just resistance to change there. That is going to have implications financially for our family in the coming coming years, for sure.


Katie Wilkinson: Yeah, I mean that's a lot to Think about, and Yeah, I guess, two questions.

Jessica Smith:  Yeah.

Katie Wilkinson: One is, you know, have you talked to you or stepped out about what he's thinking about for himself later? Because it sounds like obviously, you know, everything's going into your mom right now. So what happens next for him? And then my other question is, you talked about, you know, trying to get your family ready for upcoming expenses with your mom or say your stepdads. You know next chapter after this. What do you mean by getting your family ready? Like, has this been just conversations about money or is this like You know, actual I don't know meeting. What does that look like for you guys?

Jessica Smith:  So right now just conversations sounded the alarm, you know, like many people, my my stepdad it's it's having a difficult time planning or even just wrapping his head around end of life. And I think this is another reason why I'm going into the death doula fields because I want to help people get prepared for end of life. So we can get that weight off our shoulders and just live while we can live. And unfortunately he's just having really difficult time with that piece of it. So You know, if I ask him what he wants for himself he just has a very difficult time. Even

Jessica Smith:  Envisioning himself sick or that something could happen to him. So, quite frankly, he's not really, he's not really doing much planning right now. He can't even just, he can't even admit that, that something will happen to his body at some point, you know, so, Which I understand because there's so much fear around that but so that's that's what I mean. I'm just trying to sound the alarm like Hey this is gonna happen at all of us. So let's get ready. And I know for myself, it's made me really, really think about

Jessica Smith:  Saving for myself, and for the years to come so that I'm comfortable and so that I can get what I want Ken and I don't have children. And while your children are not expected to to care for you. I'm sharing that because we don't have someone as like a, like a default caregiver or someone that will share, you know, show up would show up for us. So yeah, we're gonna have to carry that weight on, you know, on our own and that's fine. But this this situation is showing me. I need to continue to prepare now in my 40s so that when I am in my 60s, 70s 80s. I I am set up with that cushion so that I don't have to stress like, right now.

Jessica Smith:  Because unfortunately what I think may happen is we may have to sell their house in a rush. I feel like, you know, something may occur that shifts everything and we have to make these changes. Whereas I feel like it would be better to be able to slowly. Begin to plan, you know, ideally I would love for my step, dad to go visit you know different assisted living places for himself. See what he likes, not only for the financial reasons, but for just to take it off of the families. You know, concern or worries? So yeah, I honestly like, I don't know what's gonna happen next financially and it's it's pretty scary. I mean I know that we have we will pull together as a family and do whatever we need to do but Yeah, this is a big concern and I'm sure for most Americans. This is a huge issue and huge concern and

Jessica Smith:  I mean, I'm lucky for myself and for Ken to have 401ks and other investments and whatnot that I have slowly started to build, but, you know, for a lot of people, you know, there's no space to save at all, you know, there's, there's none of that. Um, yeah, I could just ramble on about this. I have so much compassion for, for everyone in this situation because it can be really heartbreaking.

Katie Wilkinson: Yeah. I mean it really can and that's sort of what we're trying to do here is you know, Shed some light on it and hopefully give people tools and resources to manage it. Because it and it is very overwhelming. And I guess like your stepdad, I think sort of a default is just be like just one fun from the other. I can't think too far in the future and

Jessica Smith:  Yes. And especially for him as he's caregiving and on this caregiving journey, like I can understand and I have so much compassion for him knowing that You know, day to day, all he's doing is thinking about my mom. I think it's almost impossible for him to think about himself, but had my parent, had they done this years ago, you know? That would have been ideal for the family. Had we even started to plan to see where the financial shortcomings would be where those holes would be. I I would prefer that to just kind of floating because now he's in this space where he just he doesn't have the energy to think about anything, you know? And as a 75 year old he he has the energy to make it through every day that he is with my mom. And then that's about it, you know.


Katie Wilkinson: Yeah, what you're saying? I mean I recognize the same in my dad, I think, you know, take care of my mom, He was her primary caregiver for so long and it was just like, Holding on and just doing doing each day.

Jessica Smith: Yeah.

Katie Wilkinson: And and, you know, it's been we our whole family's been on a journey since after my mom's passing, you know, to to You like lose a sense of purpose, you haven't made any plans so I I hear you. I'm really trying to sound the alarm for your family.

Jessica Smith:  Yes.

Katie Wilkinson: and you started to talk a little bit about, you know, thinking about your own,

Jessica Smith: Okay, so it's just made me realize. Like for deep in my realization of the capitalistic nature of our society, you know? I mean really, you know, and I hate that, honestly, I'm such a hippie. I would rather all just live on a barter system or do something where it's just more beneficial for everyone, quite frankly, but that's just not the society we live in, right? So, so yeah, in terms of savings, I've maxed out my 401k contributions things of that nature, for sure, I will get a small inheritance when my dad does pass away. I've my resolve with that is to invest in such a way that, that is my nest egg for my elder years. I'm lucky. And blessed enough to, to even know that that's coming, my dad worked his butt off his entire life for that.

Jessica Smith:  And I want to use it in a way to just honor this situation. I feel like me having putting more care and time and savings into my own future is a way that I can honor my my mom's maybe shortcomings with her own. So yeah. So just saving maxing out all of my benefits through my employer and yeah and just like my overall thoughts on aging, it's changed my it's just made me realize how the transitory nature of life and just

Jessica Smith:  It's meant to be enjoyed and to really realize like, you know, it's gonna be gone in a blink of an eye. Like I can't even believe it's April already, you know I mean, how did that happen? You know, I mean I was listening to to one of my meditation teachers the other day and he was talking about his 70 year old friend. Told him that he eats breakfast every 15 minutes because like that's how fast time seems to go you know and so that's that's something that my mom has taught me. It's like here and gone in a split second. So I'm really greatful that she's shown me that

Katie Wilkinson: Yeah, thank you for sharing that. You've talked a little bit about, you know, how you're thinking about saving and financial planning for the future. Is that something that you I'm just curious had thought about previously like Was this, you know, talk to you by your parents or wherever or was this something that you started thinking about, you know, when your mom got sick and as you started looking to the future that way,

Establishing your relationship with money as a caregiver

Jessica Smith: So I've had a very uncomfortable relationship with money most of my life and we need to teach it in school. Like this needs to be something that kids start learning about in middle school and high school because my college years you know I got that credit that Sears credit card on my college campus when I was 18 I maxed it out on like raver jeans and things that I didn't need back in the day, you know, and my credit went down the tubes and then, you know, I had financial loans to pay back from school and I was just Very scared of money for a very long time, it wasn't until my early 30s. That I really started to be like okay.

Jessica Smith:  This is just money and so I just need to work with it and figure out how to get my stuff in order and I did and I built my credit score back up. I wasn't thinking about planning for end of life at that point in time. But I knew that I needed to just fix my relationship with money in order to just live live life. And so I started to increase my credit score slowly but surely and I still can't believe you know, it was good enough to buy a house and things like that. Like I really turned it around. I'm very proud of myself because I was like a huge hurdle to get over and I, I was like ashamed of it and then I was also,


Jessica Smith:  I don't know. I felt like it was only happening to me, but like the more I've talked to friends about it, you know, so many people are like, Oh yeah, scares the hell out of me, too. You know, and I believe it's something that many of us are facing because we do not get the support in grade school and high school, to, in the tools, to learn how to manage our money or work with money and how to then plan and move forward. You know, I remember my first job in my 20 early 20s. My first really good job. After college, I wasn't contributing to my 401k and my boss told me. She was like What are you doing? This is, my match is free money to you and back then I didn't understand. I was busy, maxing out my credit card on jeans. Like I, you know, I didn't know.

Jessica Smith:  But now I get it so, you know, now I've moved from my six percent match with which my company offers, which is very generous to. I, I contribute 10 and so 10% and they matched the six. So now I'm like, you know, going above and beyond which recently, I found out may not be the best thing to do, I'll get. Yeah. Anyway, but I did increase my savings, so I'll give it. I'll give it that. But yeah, my mom's journey, definitely reinforced what I started to learn in my 30 so it's that, you know, I need to save in order to want to live the life that I want to live in my later years, you know, I do not want to be. You know, struggling in my after I retire you know and so many Americans. That's what they're doing, they're struggling.

Jessica Smith:  I don't mind continuing to work because I want to continue to have that drive and sense of purpose in some degree, you know, maybe not full-time or something, but You know, we shouldn't have to have 80 year olds, you know, bagging at Walmart, just in order to to pay for their food. I mean, these, we our elders in society, deserve more dignity, and respect than we give them and but yeah. So, I'm glad I'm on the other side of my fear with money. Thank goodness. But it took me a while to get there.

Katie Wilkinson: Yeah, I mean I appreciate you sharing all that. I think money is so highly emotional, you mentioned fear, but I think there's, you know, lots of different emotional sort, of course, to how we to our relationship with with money.

Jessica Smith:  Absolutely.

Katie Wilkinson: I want to bring us back a little bit so you talked about how you're funding your mom's care or…

Jessica Smith:  Yeah, sure.

What are your systems for managing money/caregiving finances?

Katie Wilkinson: how, the whole family sort of, you know, approaching this I know your sister has poa and your step that is there. If you have ginset, can talk a little bit about how you guys are managing the money. Like, what systems are you using, what's working? Well, what could be even better to actually manage all these different income sources and bills, etc?

Jessica Smith:  So, unfortunately, right now, my, it's only my stepdad that's doing the managing. And the only reason I say unfortunately is because, you know, I would just like, I would just like the piece of mind to know that like how it's being managed only because

Jessica Smith:  decisions that they make now will affect us and how we care give for them in the future and and I understand privacy. So I'm definitely, I definitely don't badger him about this. And I do get small glimpses, but I don't have like full view. My sister does manage one of their 401ks, my mom's 401k and and some other, some other finances from my mom's side. So you know, we will have to go through her in order to deduct some of those funds but when it comes to like the date of the day to day, we don't have a huge understanding of what's going on. Thankfully things like their house and car are paid off. So that's great. So they're not making those those payments, but

Jessica Smith:  You know I worry about things like scams with my my stepdad my stepdad not no no disc to him. I just mean like it is so prevalent to have people calling the house or even when he goes I mean even when he goes to take his car in you know, he will do all the things and Which again like it's their money. It's their their decision but it is hard when you're in this co-care-giving role to not have the full picture but still have to show up and and help based on the decisions that they make or that he makes So that's something that will probably change with time, you know, Hopefully, he allows us to be a little bit more involved, but right now I don't have a huge. Look into what that looks like right now. Yeah.

Katie Wilkinson: Yeah, some of these cms out here are getting advanced too. I've found myself a couple times. I shop like Facebook marketplace and stuff and people are Tricky out there. Like I I really have to scan still and I'm like pretty smart and aware of scams. So and I think about this yeah with my dad also who's a smart man. He's got he's got his brain but still I'm like what's happening out there?


Jessica Smith: Yeah, exactly. Oh me, me too. I actually, I, I will totally admit this. I actually just fell for a scam,…

Katie Wilkinson:  Well no, yeah.

Jessica Smith: because it was, if it was a fishing scam, it was an inbound call from my bank. I didn't lose any money, but that the scams are so realistic. Now that the caller IDs can look just like the institution, this said, my bank name, it was my bank telephone number. They call when they called, I was sort of in the middle of like a work emergency while I was traveling. So I was a little off. They just caught me at that right moment where I wasn't second guessing everything and and I fell for it. They got into my bank account, they stole or they took several hundred dollars and then again, they took 700 dollars a couple of days later and all under the guys that they were calling me because of suspicious activity on my bank account. It was so real. Like, Yeah. So I mean I don't even worry about it, just for them. I worry about it for us too because I

Jessica Smith: Place. We've had people text us saying that there are CEO and the number looks just like it's her number. It says you know her name and everything and Yeah, it's really it's intense out there.

Katie Wilkinson: It is intense out there. Thanks for sharing that.

Jessica Smith: Mm-hmm. Yeah,…

Katie Wilkinson: Yeah, I think it's a concern of all of ours.

Jessica Smith: no problem. Yeah.

Katie Wilkinson: I guess. I'm hoping you can like hypothesize with me a little bit. But like, if there was a system or…

Jessica Smith:  True.

Katie Wilkinson: a method, like what would in your ideal worlds, to have like greater transparency and visibility into sort of like the day-to-day finances And your ideal worlds, you know, where everyone's comfortable with everything, what would that look like? By way of, you know, how you communicate that, or how you're able to see this kind of information? I'm so that it can inform decisions that you and can make or you and your sisters make when you step into care.

Jessica Smith: Yeah, I think just seeing or getting a better idea of the daily spending patterns and whatnot. I'm not given any indication that, you know, my stepdad is doing anything like wrong or irresponsible with the money right now. I'm not seeing things like, like, he's buying bulk vitamins that'll never use or things like that. You know, that I have read things about folks just like wanting to spend spend spend, in, in later years. So I don't see anything like that. I just would love some sort of way to You know, maybe glance at his ledger every so often just to see if anything looks out of the ordinary or just to see if there's some weird scammy charge on there from maybe someplace, he accidentally clicked online or something like that. So some sort of transparency, you know, like visibility in their bank account but

Jessica Smith:  you know, as I see these words, I can understand How difficult that would be to have someone else. Especially someone who, you know 45, He probably still sees me as a little kid, you know? I can understand how difficult that is and so I don't know if that would even be the right answer.

Jessica Smith:  but I guess, you know, if there was some way that I could just see their daily spending habits, or his daily spending habits to understand and make sure he's getting like the best deals and things like that because not that, I don't trust him, but he doesn't necessarily know some of the resources online that maybe we, we know and he's not as familiar with with certain price shopping online or, you know, he'll For instance, if someone comes by and asks if he can cut their grass, you know he's such a kind gentleman, he'll you know, often say sure, you know, whatever. But you know, they might be charging to $300 more than maybe another company in town and at the time this time when they need to really be saving money for the future. you know, those are some of the type of spending things that I would just like to better see

Jessica Smith:  But again, it's like I understand the whole control aspect because, you know, I'm over here spouting out, let's have more respect and dignity for elders, but like what? So now I'm just gonna like, look at their checkbook, too. I don't know. It's such a fine line. You know what I mean? Because he's well, like he's okay. So Oh this is you know I'm I'm understanding more of the complexities. As I share this information with you because it is so intense. In terms of Yes, I want to be able to look at their finances, but how will that make him feel? You know?


Katie Wilkinson: Something we're working on here, it doesn't exist yet. Well, half of this exists Givers offers a givers debit card. It's a self-funded debit card where you can put all of your caregiving expenses. We're about to launch an app…

Jessica Smith:  Oh cool.

Katie Wilkinson: where you can You don't have to, but you can link that and it'll help categorize serve your care spending something that we're talking about. For the future, is sort of what you've just talked about. It's like, How can you invite someone into your apps? You, you,…

Jessica Smith: Hmm.

Katie Wilkinson: and your sister's in Canada, and your step, dad and that whoever can all be sort of in the same space. So it's not a fairly looking at their, You know, bank statement, but it could be useful. If you guys put all of your care expenses on the givers debit card at to see care expenses there.

Jessica Smith:  Yeah.

Katie Wilkinson: So maybe it's not how much I spend on lawn care, but it might be useful to see how much they spent. on doctors appointments, or you know, Whichever that month.

Jessica Smith:  Yes. Yeah. Yeah. I love that idea.

Katie Wilkinson: So I do think I Yeah, I think we're it's it's a pain point that you've just described that.

Katie Wilkinson: Other people have also is, you know, there's many people involved, many people are long distance, caregivers people have different roles here and you've described a very respectful relationship with your family. There's no issues of, you know, like Miss Spending or Miss appropriating funds, or this sort of thing. But that's also a common problem that people experience. So and we're looking at how to, you know, hopefully make that a little bit easier for people to navigate also and so to share that go to Plug City,…

Jessica Smith: No, that's great. That's great.

Katie Wilkinson: a little bit about…

Katie Wilkinson: what givers is up to, but I think it's also interesting to hear from people what is or isn't working right now. You know, by way of their systems for managing managing caregiving expenses at someone else out there might have a solution for you or you know things that you shared might also be helpful to people,…

Jessica Smith: No, that's awesome.

Jessica Smith:  Yeah.

Katie Wilkinson: as they figure out how to navigate, you know, the cost of caregiving.

How positivity has shaped Jess’ caregiving experience and how to keep cultivating positivity 

Katie Wilkinson:  To. Changes topic a little bit so they really stands out to me talking to you and also just watching you know your family's journey online is like an overwhelming sense of positivity and that being infused into like day to day and just how you seem to live your life and you know, I'd love to you could just talk a little bit more about this and where it comes from and how it's impacted, your caregiving journey and how you maintain it you know, through. What can be a really hard experience?

Jessica Smith: Thank you. First of all, that's really kind of you, you know, when I was a kid, people used to call me joyful Jessica and things like that. So it's definitely a treat that's been with me since birth and I'm so grateful for it because I want to help bring joy to everyone's life in some capacity and that's another reason why I'm going into the death field to bring joy to death as well. You know, in my, in my later in my earlier years, like, maybe teenager early 20s, I definitely had bouts with toxic positivity. So I would say that is definitely the flip side of this trait of mine.

Jessica Smith:  Where I thought everyone needed to be positive all the time. Yeah, it's just not like that, you know, so I think getting over that and understanding that really helped me navigate my mom's journey because I turned, you know, positivity all the time more into acceptance and contentment with whatever is happening. So you know my joy does come through a lot but there is more of a sense of just contentment in every passing moment. You know, I I use the phrase be here. Now a lot because I like to be present and just with whatever is happening in any given moment and that sort of contentment and joy is something that That really has allowed me to show up for my mom, the way that I have.

Jessica Smith:  You know, there are so many times with my mom that I am not feeling joy. And I'm, you know, overwhelmed by sadness and grief, but I have noticed that it's even in those moments of extreme griefer sadness that acceptance. Kind of brings me back to joy. It's a weird. It's a weird kind of Venn, diagram or diagram, but, you know, I go from, you know, sadness. To then happiness, because I am accepting my feelings and not tucking them away to show up as future disease in my body. And I think that's, that's really something that is important. For all of us is to really just

Jessica Smith:  instead of rejecting what's right in front of us, To take actionable steps and find ways to be content in our reality, instead of trying to pull away from it. And that's something that has really been important to me to do through through this journey with Alzheimer's, and to just make sure that You know, we find ways to to laugh in between all of these, you know, really uncomfortable and and horrible moments, you know. So like for instance, you know, My mom may have a rough, go in the restroom. Let's just say, And you know, she and I might laugh about it and I may make a joke about it with her, you know, and we'll laugh together. I really like uncomfortable not so pleasant situation and you know, same with Ken if if I'm having a rough go at it, you know.


Jessica Smith:  He'll just joke around with me about something. You know, with my mom's feeling down, we'll pull out like the Mr. Bill doll that says, Oh no from Saturday Night Live and she'll just, she'll start cracking up. So we just try to find ways and tools to just not get bogged down in the the stuff that sucks. But instead to just find contentment this is what's happening. Here we are now And you know, another piece of that is to just realize that everything is temporary and that lesson of impermanence has been probably the best lesson. Biggest lesson of my life is to realize that the hard times, those those moments that are really horrible and sad, My mom had really horrible hallucinations last Thursday, when I was driving with her for eight hours.

Jessica Smith:  I had to just keep reminding myself. This is temporary. This is temporary. This is temporary. So it helps me get through those moments But last Wednesday, my mom was serenading me to an Elton John song. And I was saying the same mantra in my head, this is temporary, and it just made me like really envelop that joy and that that love in in the moment. As she was mimicking the words to the song for me. So, So while I think my journey with joy has been, you know, kind of finding my way and not like having the fake joy. I'm really grateful for this trait that that I got via my mom. So,

Katie Wilkinson: Yeah, I love that and thank you for sharing and both of those examples of driving with your mom and you know, her experiencing intense hallucinations. And that being you know sometimes in those moments you're like this is this is impossible like that he was gonna last forever. So that's a good reminder. But also coupling that with like being really present in the moments that are good also And getting to experience them because they are also temporary.

Jessica Smith: Definitely and I think something with that is that you know it those those moments that feel so intense and we feel like they're never going to end. You know something that Alzheimer's has taught me. Is that you miss it? So like my mom used to tell this story all the time, about her Uncle Libby, who owned Double Rock Park and my neighborhood. Both my neighborhoods that she is visited, looks just like it and she would talk about it and talk about it and talk about it. I mean, I've heard this story like 6,000 times She doesn't say it anymore. And I miss it and like that's That it's hard. But I mean, that's something you just start to see you missed the behaviors that used to annoy the snot out of you and now you're like, Wow.

Jessica Smith:  And that makes you realize, like, you know, one day I will miss that time in the car, with my mom and, you know, so I just enjoy it now. I enjoy it while I have it or at least, if I can't enjoy it, I just find that contentment in it.

What do you wish you knew when you first started caregiving?

Katie Wilkinson: Yeah, thank you for sharing that and to wrap up our conversation, I'd love to know, you know, what do you know now that you wish you knew at the beginning of your caregiving? Journey experience.

Jessica Smith: To take better care of myself. Like my mom, I have a tendency to put everyone else ahead of myself and that's something that I am slowly, understood over the past, almost 10 years, is that. If if I can't take care of myself, I can't take care of anyone else. So, you know, every every day that I'm with my mom and I'm serving as her primary caregiver, I make sure that I take, at least two to five minutes to sit,

Jessica Smith:  And be quiet and still and meditate or just, just be still for my own well-being. I also, you know, realize in that self-care. It's that sometimes I can say no to certain things whether that's like me trying to plan something. For my mom, that's like causing me a great amount of stress. Like, it's okay to deny that, you know, it's okay to say no, I, I definitely put way too much pressure on myself from 2014. to 2021 And, you know, I'm realizing now that I have, you know, I have the same Ability to stress myself out. Just like my mom did by taking on everybody else's stuff and I'm starting to analyze now that I think her stress was one of the reasons why she ended up with Alzheimer's because she wasn't taking care of myself and sometimes.


Jessica Smith:  I started to catch myself in those moments and realize like If I don't take care of myself I could make myself sick. And so now I'm super aware of that and I take better care of myself, mentally and physically. And I do things, you know, for instance, when I took her to Florida on Thursday, I came home on Friday and I was planning to stay for a couple of days but I needed to do it for myself and like thinking about that like Like I know my mom would be proud of me for doing that, you know, whereas maybe a couple of years ago.

Jessica Smith:  Maybe a couple of years ago, I would have just pushed through that and just done it, you know? And I think all care givers, no matter. no matter where you are in the caregiving journey, if you're primary long distance, whatever, We all need to take better care of ourselves, you know? So that's something that I've learned for sure.

Katie Wilkinson: Thank you. Yeah. Thank you for sharing that. And for being so, you know, vulnerable in this whole conversation, I think all of us has been really valuable and it's I think helpful for people to get an insight into what, you know, your experience has been like If people want to find you online and follow along you, and your mom and your whole family's story, where can they find you?

Jessica Smith: Sure. On Instagram we're at Alzheimer's Underscore Awakening, that's our only social media channel right now. I started that page just as a journal for myself and it's gain traction from there, but you know, in the coming year. So I'll be putting out some information about my Death-dollar services, and I'm also in the process of getting my certified, Dementia, Practitioner badge, certification, so that I can assist other families through this dementia journey as well. So, when they're out there, it'll be linked to my my Instagram page.