Adrienne Marioles talks about her experience caring for her mom who lived with Parkinson's disease and multiple system atrophy.
Adrienne Glusman: Yeah, sure. So I'm Adrienne. I'm now mariolis I've almost been married a year.
Adrienne Glusman: So I am a former family caregiver to my mom. I started caregiving, I want to say in 2009 at the age of two of 29. Really, I stepped into my caregiver role, my mom was initially diagnosed with Parkinson's disease and then later rediagnosed with multiple system, atrophy, it's a degenerative neurological disease and at the time, when my mom was diagnosed with Parkinson's, I was living up in New York City and she was down here in Florida and everything. Seemingly was like, okay? Just in terms of, you know, hearing a Parkinson's diagnosis wasn't like, you know, potentially hearing like a cancer diagnosis, like, I didn't know much about it, She didn't really seem that different. So I was able to still maintain my life in New York City and she was still in Florida, but
Adrienne Glusman: As the disease started progressing, there were noticeable things that were happening where I would literally just have to like book a one-way flight and fly home to Florida from New York for an unknown amount of time to take care of her because I'm an only child, my parents were divorced, we had no family in Florida. So all of it really fell on me. And in 2015, I finally made the decision that I could. I couldn't care give at a distance anymore. So after living 10 plus years in New York City, I had to make a super hard decision to kind of let that entire life go and move down to Florida to be closer to my mom and help care for her. So that's a big part of my journey going from long distance caregiver to, you know, being really close to her. And then
Adrienne Glusman: after about four years since my mom suffered from a degenerative neurological disease, she did pass away in August of 2020. So now I've kind of almost for the past three years been on like a Greek journey so to speak. Like I think, you know, we're all on different journeys and different chapters of our life, I had my caregiving journey. Now it's about the grief journey.
Adrienne Glusman: But but yeah, I mean, caregiving was such a pivotal part of the integral years of my life from, like, 29 to my mom passed at. I guess 39 year when I was 39, so it really defined who I was, it really played such a major impact in where I was in life compared to my peers. I mean, I just, I'm 42 years old, I just got married a year ago, you know. I don't have kids right now, like all these life milestones, that people my age go through caregiving, kind of put all that on hold. So that's kind of a roundabout, synopsis of, of my care journey. Obviously, there's lots of other layers to it.
Katie Wilkinson: Yeah, thank you for sharing. I mean You've obviously obviously was pivotal in your life. You've you know made a whole platform. Now about a young life being interrupted, 29 is a hard time to pick up the life that you're probably just sort of starting to build in one place. And moving home. Can you talk a little bit more about that?
Adrienne Glusman: Yeah.
Katie Wilkinson: Like, How did you make the decision to move home? What was the transition like from being a long distance caregiver to, you know? Being at home, which is a transition and of itself and now you're caregiving from up close.
Adrienne Glusman: Yeah. Definitely.
Katie Wilkinson: What was that like for you?
Adrienne Glusman: I mean talk about like experiencing levels of anxiety that I never even knew that I had when I was living long-distance. like I said, with nobody in close proximity to my mom, if I called her and I didn't get her on the phone, it was just like panic instantaneously set in And I was kind of in this conflict constant like fight or flight while I was living long distance. And like I said I mean fortunately at the time I had a job where they were super flexible. I mean this was like Back in like 2010. 2011 like Remote Work wasn't even like really a thing like it is now. But fortunately, my employer was like sure, like you have a computer just go home, stay home as long as you need to stay there.
Adrienne Glusman: And it just started getting to the point that I just kept like, disrupting my life constantly and living in this constant state of anxiety. I, every time I went home, I would just see like more things that as much as I tried to put in place for the short period of time. I was there like we just couldn't do this alone. I even made the transition to move my mom like out of living alone into an independent living community, which worked really well for a while, but even being in this community and hiring caregivers to also come in and help her with like, medication management and the activities of daily living. You know, I'm still getting calls like, your mom, just passed out. She's in the emergency room, I'm all the way in New York City, so,
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Adrienne Glusman: I kind of just came to this turning point where I thought to myself, This isn't fair to my mom. You know, she needs me there, and it's really not being fair to myself because I'm trying so hard to hold on to this life that I had in New York, but it's like conversely, I'm also constantly like stressed anxious. Not knowing like, when the next shoe is gonna drop, not knowing what I'm all of a sudden gonna have to take a one one-way flight home. So,
Adrienne Glusman: I just kind of made the decision that it was time. Like I was not gonna move my mom up to New York. I mean, there was just no way. So I said to myself, You know, my mom was always there for me through everything. She was a single mom. I mean, she gave up everything she did was for me, and although I knew that I would be stepping into this caregiving role for her one day. Like I saw her care for her parents, like most of us. Imagine like, I didn't think that was gonna happen until I was like in my 50s or my 60s. But I said to myself, Look it's happening now and I don't really have a choice and God forbid, something horrible were to happen and I wasn't there. I don't know how it would be able to live with myself. So I made the decision to go back to Florida. I
Adrienne Glusman: It was super tough. I mean New York City like I moved there after college. It was like this amazing city that helped me like identify myself. Like who I am my personality? I had an amazing group of friends there. And now, all of a sudden I was just gonna have to give all of that up and move back to Florida. And if you would have ever asked me, would you ever move back to Florida? I would have said, absolutely not.
Adrienne Glusman: And it was super tough, it was really tough to just leave. I was so worried that I was going to regret the decision that I was gonna really have a tough time transitioning. I mean the one good thing was that in Florida like I did have some close friends who used to live in New York who were from Florida who had moved back. So it's not like I was out was without friends and having to make brand new friends, it was definitely a struggle trying to find a job. And then also balance my caregiving responsibilities as well, and there was definitely a tough transition period, that's for sure. But it also gave me like a huge sense of relief to be so close to my mom. I was able to move her into an assisted living facility because by that time, her disease was progressing even further and it was just really great for me, as hard as it was to be able to go every day to be
Adrienne Glusman: Her to help her to just have my eyes on this situation and just have more control over what was going on. But it was tough, it was Super, Super tough. And I forgot to mention, I adjust gotten a dream job opportunity like this company. I was working in public relations at the time, like this travel PR company. I really been like gunning for finally had an open position and I had to say no because I had already made the decision that I was going to move. So, Definitely tough having to give up a life that you're used to and all of a sudden just completely changed the course and also now step in and have to care for somebody other than myself. At a young age.
Katie Wilkinson: Yeah, thanks for sharing all that. I mean, I can only imagine how hard that decision would be especially after you know what you just said, you got, you got a dream job and all these factors that that factored into it,…
Adrienne Glusman: Yeah. Yeah.
Katie Wilkinson: and I've heard you talk about sort of feeling life like life was on holds and I don't think that's unique to you. I think a lot of caregivers feel that way that you're sort of like waiting you know for the next thing can you talk a little bit about how you manage these feelings? You've moved home life's kind of on hold it's a new thing. Can you talk about how you manage
Katie Wilkinson: Old.
Adrienne Glusman: Yeah, I mean it's super tough. When you fall into this role at a young age and like I know for me, you know, when you're in your late when you're in your 20s and 30s like the only person you have to care about and worry about is you it's like the time in your life when you can really be selfish and like you're finally making money so you can actually do the things that you want to be able to do and then it's like all of a sudden that freedom so to speak is ripped away from you. Like, for me I was a huge traveler. Like I was going backpacking for like months at a time and, you know, doing all of these things and now all of a sudden it's just like, wow, all of these things that I used to do that. I loved doing I can't, I can't do them anymore. Everything I kind of
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Adrienne Glusman: I kind of call it, like pushing pause on my life because it seems like I'm just kind of in this holding pattern. And everybody is just like rushing by and rushing by and hitting life. Milestones I'm not gonna lie and say that it wasn't hard. I mean, it's like here I am like caring for my mom. And doing all of these things, like changing her diapers, and feeding her, and bathing her all of these like non sexy things, right? And conversely, you know, I'm watching my friends like meeting guys, getting married, You know, buying their first house, starting to have kids and it's so hard to see people like able to continue on in their lives and not able and not have to just deal with this holding pattern and
Adrienne Glusman: I mean I'm not gonna lie and say that I most days it was really tough to hold on to the hope that things were going to change one day that like this was not my forever. You know my mom had a neurodegenerative disease like maybe she would live for another two years. Maybe she would live for another 10 years but this was only like a small piece of my story and I had to just hold on to this hope or else. I feel like I would have just spiraled into like complete. Darkness and despair. Like, I had to hold on to hope that just because my life was not falling into place in this timeline. Like, I don't know why we, as humans kind of set these timelines for ourselves. Like, okay, by this age, I'm gonna be this and by this age and by this age, and I had to just at some point, say screw the timeline, throw it out the window because it was only causing me more stress and anxiety.
Adrienne Glusman: With every year that I wasn't hitting these like certain milestones that I only set for myself, right? And potentially society has these expectations that things should be done by a certain age. So I told myself, I just have to let it go and that everything happens for a reason. And when the timing is right, kind of all of these things will start falling into place for me as well. So, it was definitely a big mindset shift. Definitely tough to keep top of mind especially in the hardest days of caregiving, but mindset is just so important. In all aspects of life. But specifically as a caregiver going through your care journey,
Katie Wilkinson: Yeah. And I mean you've now like talked to so many caregivers and obviously, spend your time in the space. Do you have any like Tips, I guess or like advice for how to sort of mentally, let go of this timeline or how to, you know, I guess letting all the time line has to do with holding on to hope a little bit, you just sort of connect those two things.
Adrienne Glusman: Right.
Katie Wilkinson: Are there any like, practical tips for how someone else, who is like, you know, can't shake this? Like isn't ready to move there yet? How can they Do that.
Adrienne Glusman: I mean, it's a process. Like I it took me a really long time. I think, especially when you fall into caregiving at a young age, denial is is a huge piece of this. It's the denial. It's like the constant like self-pity. I know, at least it was for me. It's like why me like Why is this happening to me? Like what what have I done in this lifetime? It was very self-serving and selfish, right? Like I was just thinking like me me and I wasn't even thinking about like my mom and like, Oh my gosh, like this is actually happening to her. So it's like I'm being super selfish of like why me why now why this? I don't want to do this but I have to do this. I think it's just learning to accept.
Adrienne Glusman: The role that you've fallen into and it's that's super tough. I'm not gonna say that it's easy but I think that the quicker you're able to accept and acknowledge yourself like, Okay. Now I have this new identity and this identity is caregiver. Like it does not define my entire identity but it is a big piece of my identity. And I personally the second that I learned to accept and identify as a caregiver which in turn, then pause me to start looking into support groups or trying to find more resources to support myself. I felt like that was a huge game changer in kind of holding on to hope to. Because then I was starting to see that there were other young caregivers out there, like, which I couldn't even believe, because like Facebook groups weren't really a thing back then, and I didn't know anybody that had gone through this, but
Adrienne Glusman: I feel like once I started seeing other people and hearing about their journeys, it was so validating and I feel like that caused me to hold on to hope as well. Because then it was like, Okay, I'm not the only one going through this. There are people that I can turn to, and lean on for support. So I would really say like, trying to let go of the Why is this all happening? To? Me, kind of mindset embracing this new role as a caregiver, and then using that to find the support that you really need. As a young caregiver going through this journey,
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Katie Wilkinson: Yeah, thanks for thanks for sharing that. I think that acceptance piece is kind of hard. I, you know, for myself. I took care of my dad and I felt for a while, like, But I'm the kid like why you know like I couldn't like go of this.
Adrienne Glusman: Yeah, totally.
Katie Wilkinson: And I think accepting like the the relationship change or the role reversal. Really changed it for me also to sort of let go of the timeline and let go of like these expectations that we set for ourselves.
Katie Wilkinson: Your mom passed a couple years ago. You mentioned, You're going through your own grief journey.
Adrienne Glusman: Yeah.
Katie Wilkinson: Now, you also mentioned, you got married, you know, some exciting things are happening and…
Adrienne Glusman: Yeah.
Katie Wilkinson: what has life been like, you know, post caregiving, what's this experience then?
Adrienne Glusman: yeah, it's a, you know, I think when You care for someone with a degenerative disease. It's, you're already preparing yourself for the fact that like, there's no cure for this. Like they're never going to get better. They're only going to get worse and it's interesting because it wasn't until after my mom passed away that I learned about this term anticipatory grief, which is basically like the anticipation of what is what is to come. And that like really hit me hard because I feel like over the course of like my 10-year care journey. It was like these peaks and valleys, it's like anticipatory grief. And then everything was okay. And then anticipatory grief. Every time my mom progressed to, like the next stage. So,
Adrienne Glusman: It's really interesting because I thought when my mom passed away like I would just be like, you know, like you see in the movies, like on the floor, you wouldn't be able to get me up. I wouldn't get out of bed for like weeks upon weeks. And it was very strange because like that wasn't the case. And I feel like in part it was because over the course of 10 years, my mind, my subconscious was preparing me for this.
Adrienne Glusman: It was really, really weird to lose my mom. Even though I knew it was coming, it did happen pretty quickly and unexpectedly how quickly she passed. but, It definitely took some time, but I have to say, like, after my best, it was like she passed in August. Then my then boyfriend, my husband now, we like moved in together. We started a boat business together, then the January after she passed, like he proposed and then we got married and so many things started happening and I'm very spiritual. And I truly felt like, Okay, this is Mom, you know, it's kind of her saying, like, I know that all of these things, big things are about to happen in your life. So, like, I'm gonna step back, like you've served me and now I'm gonna like let you live your life.
Adrienne Glusman: It's been interesting because it's like people say, Well, what am I gonna do with all this time when I'm not a caregiver anymore or Trust me, you will find ways to fill it. Yeah. It's been there's been so much. Of course, so many things that have happened. That I wish my mom were there, you know, my wedding and certain life, milestones that I've gone through. But it's also been an interesting journey because it's allowed me to do a lot of reflection and I always say this to like other young caregivers or on my podcast, It's like I know that I'm telling you these things but you're in it so you can't see it like the why is this happening to me? But it's it's like now that I'm almost three years out like I'm seeing at least for my own personal care journey. Why I believe this happened to me and that's being able to take my journey.
Adrienne Glusman: And help others. You know I've been able to expand young life interrupted platform. Ever since my mom passed away, actually to honor the first anniversary of her passing is when I release the first episode of my podcast and just doing other things in the caregiving space is like how I feel like I can honor my mom and her legacy and just the incredible mom that she was for me. So, It's just crazy. Also, how fast time flies? Like I can't even believe it's going to be three years since she's gone.
Katie Wilkinson: Yeah, I got the gels when you said your mom sort of like, you know, moved out of the way. So other things could happen. And and…
Adrienne Glusman: Yeah.
Katie Wilkinson: I understand missing her, you know, missing her, because she's missing milestones. But I think that's really beautiful,…
Adrienne Glusman: Yeah.
Katie Wilkinson: sort of way to look at it. And also you mentioned dentistry grief and I don't have the calendar in front of me but I think an episode or two ahead of this one. We're talking about therapist about anticipatory grief so people can go listen to that.
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Adrienne Glusman: Yeah, that's amazing. I highly recommend that people listen to that episode because that was huge for me when I understood like. Okay, so this is what all of those feelings and emotions are and are it just gave so much more understanding to so much that I was going through over the course of my care journey. So that's a super important episode.
Katie Wilkinson: And so I think there's a little bit you know our a lot of our focus here is on the cost of caring and some of the hidden costs.
Adrienne Glusman: Yeah.
Katie Wilkinson: I would love to ask you know, how were you and your mom funding her care. What does that look like for you? Obviously you had you know moved home and changed jobs like income was coming from her just sort of…
Adrienne Glusman: Yeah. Yeah.
Katie Wilkinson: what was that whole picture like
Adrienne Glusman: You know, I always say that. I mean, my mom did a lot of things, right? And one of them was, you know, when she was still working before her diagnosis. She started paying into a long-term care insurance plan for herself.
Adrienne Glusman: Let me tell you that, that made all of the difference, you know, it's like caregiver space so many different strains like whether it's physical, emotional mental, but also the financial strain of caregiving and I have to say that in our circumstance, which I know is very unique. We didn't have that financial strain because my mom had a long-term care insurance policy. Which at the time she started paying into it, she had an unlimited policy. So, you know, for people who don't, I knew nothing about long-term, care insurance. When I fell into caregiving, I had so much to learn But it's basically an unlimited policy doesn't even exist today. But basically, from the age that she needed to start using the long-term care, it would last her until the day she died. I mean, God forbid, if she was like 55 and needed to start opting into it, she could have it from 55. If she would have lived till 105, 50 years.
Adrienne Glusman: So, when we needed to start moving her into more long-term care living, the long-term care insurance paid for that. I mean, when my mom moved into assisted living, it was like, I want to say over $6,000 a month and that was just for the assisted living, you know. That's not even like her medications and supplies and all of those things. So,
Adrienne Glusman: The long-term care insurance plan. And then my mom had her Social Security and her pension. So that money was able to cover the cost of like I said, like medications and supplies. Even though my mom lived in an assisted living because she had such advanced needs, we had to have a caregiver with her 24 hours a day. So I was able to hire two caregivers, using my mom's money to be there during the day so that I could get some work done. And then I would be her caregiver from afternoon until evening. But I mean, I always say it would have been a totally different situation for us. Had she not had long-term care. I mean,
Adrienne Glusman: We would have had to live together, which is the case for so many people. Like, I know a lot of people choose to live at home with their carry, but I think a lot of people wish that they did have the means to be able to provide them, You know, the choice of going into a long-term care facility or even higher care. Givers so, We were super, super fortunate. And, you know, my mom made really smart financial decisions her entire life. So, even after her passing, like she wasn't in all of this debt, it didn't have all these repercussions that like fell back on me. So I always say, thank you, Mom for at least, setting yourself up in a good financial position to allow for this part of caregiving to be a lot easier.
Katie Wilkinson: Do you know how she like, knew to pay into a long-term insurance policy? Not, it's not hidden information, but I would say our parents' generation and…
Adrienne Glusman: Yeah.
Katie Wilkinson: even our generation doesn't, It's not talked about a lot. So, you know, how she knew to do this.
Adrienne Glusman: Yeah. So she yeah, so she had a financial advisor and it was her financial advisor who recommended to her. I don't even remember what age. I mean, it was definitely later in life, but he's the one that recommended like, you really should start paying into this, like, whatever happens to you in the future, like, Adrienne will be have to worry about Taking, you know, the cost of care. I think for her it was just kind of brainer to put that in place and start paying into it. And it did I mean it really relieved me of that financial strain which I know so many people experience as a caregiver.
Katie Wilkinson: Yeah, and then I guess sort of looking ahead is that something that you're paying into now, and I guess I'm wondering, You know you guys written what sounds like a pretty lucky situation financially and…
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Adrienne Glusman: Yeah.
Katie Wilkinson: but in what ways you know, has caregiving or did caregiving impact, you know, your thoughts around spending and saving and just future planning in general.
Adrienne Glusman: Yeah, and so my fight. So I I actually had the same financial advisor as my mom did. And, you know, he's like Adrienne, you know, you got to get these things put in place, you know, just like, you know. Look look at the situation with your mom and so I have not started paying into a long-term care policy yet, but it's definitely something that I plan on doing. I think if anyone has the means to be able to do that, it's such a smart decision.
Adrienne Glusman: In terms of saving for future cost of care. I mean, I would say My mom taught me very well like the importance of being financially responsible, so I feel like, even to this day, I'm super financially responsible, I can't say I have like a little like nest egg of, you know, Something happens to me in the future but it's definitely more top of mind because of what happened with my mom. And like, I have a stepdaughter and you know, if I do have like a child one day, you know, and my husband, like I wouldn't want to put them in this financial strain. You know, if something were to happen to me down the road, so I think it does make it more top of mind for you and this is actually a good reminder that I do need to take action on it and at least start getting the steps. The steps in motion.
Katie Wilkinson: Yeah. I mean it's so interesting. I think so many caregivers are thinking about our own future care, but I think, unless you've been through a caregiving experience, you might not think about that. It's something I think I think about often for other people is like, how do we get people to care about their future? Not future planning and people are planning for retirement, but for an expected things,…
Adrienne Glusman: No. Yeah.
Katie Wilkinson: like If I, you know, if I need care sooner, or when I need care, how do we get people to care?
Adrienne Glusman: Right.
Katie Wilkinson: before it's a crisis,…
Adrienne Glusman: Yeah. A hundred percent and…
Katie Wilkinson: you know,
Adrienne Glusman: that's that's part of the toughest part is like, you don't want to think, like, nobody wants to think about that. but it's like, we have to start having these conversations and putting the paperwork in place and putting all the things in place because it's really service to let your family. If you don't at least temp to put something in place at least in my opinion.
Katie Wilkinson: Yeah. Agreed. You mentioned, you had a couple, like, your mom had a couple moving pieces. She had savings, she had this insurance policy and…
Adrienne Glusman: Yeah.
Katie Wilkinson: You were working and managing your own money? Can you talk a little bit about your like systems for managing care expenses?
Adrienne Glusman: Yeah.
Katie Wilkinson: What was working? Well, what didn't work well,
Adrienne Glusman: Yeah, definitely. I mean, I think so the finances, when my mom started showing signs that like, I needed to start stepping in more, and this was like at the very beginning, even when she was living on her own. The finances were the first thing I decided to take a hold of and that was just like, figuring out, okay? Like what are all of your accounts? Like, Where's the money? And then you have, you know, these retirement savings and you have this long-term care insurance and you have this life insurance policy like all of these things? Like, Let me wrap my head around all of it. And, you know, back when I started caregiving and you know, like 2009 Ish,
Adrienne Glusman: I don't, it's just so different today, like there weren't all of these apps or all of these programs, right to help you specifically manage finances as it relates to caregiving. So, I mean, I just use like a handy old Excel spreadsheet, you know, where I would just list all of the things and input monthly expenses and cross-check against like income coming in. So I really just tracked it and just in Excel spreadsheet.
Adrienne Glusman: So that was how I felt like I was best able to manage her different expenses and then also to assess like Okay, like I don't know, this insurance seems kind of high like do we call Do we see if we can get the cost down? Like, what is this thing that she pays for every month that she probably doesn't even know that she's paying for? So yeah, like it wasn't like the hardest part was just figuring out like, where all the things. How do I get access to them? You know, I think another important thing, when you start thinking, in terms of like financial planning for your loved one is for them to start, getting your name on all of the accounts if they choose to do that right? If they trust you with being on their accounts, like that was one of the first steps that we had to take. Because it was like, Okay, if I'm gonna start managing all this stuff, then I have to get my name on all of it, like bank accounts, long term care, insurance policies, all the things and as many caregivers, who are listening to this, no, like if your name is not on
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Adrienne Glusman: things like there is like a steel wall like you will not get through, so I think once I was able to just tap into all of it, it really wasn't too bad, my mom didn't have like exorbitant spending so it really wasn't. Super tough to manage once I kind of got everything just filtered into this spreadsheet, compiled tabbed. It was a lot easier for me to manage.
Katie Wilkinson: And was that something that your mom was open to? Like, when you started putting your name, she started putting your name on her accounts and…
Adrienne Glusman: Yeah.
Katie Wilkinson: stuff. Was that like, obvious that was early, was that something she was open to,…
Adrienne Glusman: Yeah.
Katie Wilkinson: or was this, like, a hard
Adrienne Glusman: No, you know, it's, it's interesting. I have to say another thing about my mom because I hear from so many caregivers in general, young caregivers any caregiver. My mom was like really easy, you know? Like when it was like, Okay, Mom, I'm gonna start taking over the bills, you know. Of course, she'd be like, No, no, I don't want you to like, No, I don't want to bother you with that, but I was like, No, no. This is what I'm gonna do. And it was kind of like, That transition from like that full circle, that kind of happens when you caregiver to like you as the young child stepping into like more of this like parental role.
Adrienne Glusman: Never had pushback. And I hear from so many people that the pushback on so many things makes it so much harder, which I can only imagine that it would so, No, I think, you know, she was like, like, Let's get you on the accounts and then I think I have a lot to owe to our financial planner because he was like, Adrienne's got to get on all these accounts because the day that you pass, you know, if she's not on all these accounts it's just gonna make things so much harder after the fact too. So no she was I was like Okay this is what we're gonna do. It's just kind of went along with it I guess my mom like definitely had a more passive personality like she was definitely more kind of go with the flowed on confrontational type person. So fortunately no it was super easy to convince her that you know, Xbox thing is happen.
Katie Wilkinson: Yeah, that's awesome. And I think we maybe need to get your financial advisors Phone number for everyone.
Adrienne Glusman: Yeah, right.
Katie Wilkinson: It sounds like he was like such a such a guiding light for you guys.
Adrienne Glusman: Definitely. Yeah, it made it a lot easier you know, it's like it's hard enough after your loved one passes with all of the things that you have to arrange. But you know, because my name was on all the accounts and, you know, the beneficiary It was just a much easier process at least when it came to, like, closing out accounts and all of that to not have to worry about this, massive stress, that I know that so many people go through because their parents or their loved one don't have all of these things in order earlier.
Katie Wilkinson: Is there anything you would have done? Just differently. Looking back around like, man, I guess any of the finances insurance, like in Retrospects or anything, you wish you'd done sooner or differently.
Adrienne Glusman: And you know, I think one thing that I always put off and something that I'm very cognizant about like just in my own finances. Like, you know, I've been with my, I don't know cell phone company for like 12 years, right? And then it's just all of a sudden, every month, it just auto renews auto renews auto renews and Sometimes I'm good at taking a look at everything and saying, Okay, wait a minute like this, This bill is like in totally increasing, like, Let me pick up the phone, let me call the company. Let me see if there's I'm able to get like a better price on my cell phone bill, that's just something I do naturally in my own life. So I think if anything it was like
Adrienne Glusman: Looking at some of these things that my mom had put in place, like her Medicare and certain things, and it was just like, all right, Well, we're paying this much a month for this. And I always thought to myself, You know, maybe I should call Maybe I should see if there's like a better plan, you know, where we could pay a little bit less money, but she could still get the same cost of care. There were different things like that, that I wish that I had just done as just kind of like, well, if we can save a little bit here and save a little bit here, then this money can now go to this, but in caregiving and knowing that headaches that just calling insurance companies like, any sort of provider causes, I was just like, I don't at the time I don't have the headspace. Like, if she can afford it, let's just stick with what she has. But if I could do it all over again, I think I would have been more
Adrienne Glusman: On top of an aware of, you know, how can we continually look for cost savings, like whether it's through, you know, even just medications, like going from just filling her prescriptions at CVS, to moving to, like a mail order prescription service. And we ended up saving a decent amount of money on her many, many prescriptions because I thought to myself, There's got to be a better way. There's probably a better price, so yeah, I would just say like, maybe taking the reins on more of that, but I think other than that I feel very content with How I was able to manage all her finances. Yeah.
00:35:00
Adrienne Glusman: oh, My gosh,…
Katie Wilkinson: like,
Adrienne Glusman: a hundred percent. It's just such a process. It's unfortunate. That's so many of those things are just such a process and they feel like that holds, a lot of people back to because it's like either it's like,…
Katie Wilkinson: Totally.
Adrienne Glusman: Okay, how long am I gonna be on? Hold? Am I gonna get hung up on? Are they going to transfer me to five different people? Now, when we talk about this, how long is it going to take to go into effect? How many more times am I going to have to call back?
Katie Wilkinson: Right.
Adrienne Glusman: Like, we all know the same story. It's just, unfortunately, the way that it is so
Katie Wilkinson: Yeah, and I guess, you know, now you're sort of on the other side of caregiving and…
Adrienne Glusman: Yeah.
Katie Wilkinson: What we like just about our conversation like to ask everyone, You…
Adrienne Glusman: What?
Katie Wilkinson: what do you know now that you wish you knew at the beginning of your caregiving journey?
Adrienne Glusman: oh, so much.
Adrienne Glusman: So much, I think. I think one of the biggest things, you know, I touched on earlier is like the mindset piece of caregiving, I think that's so important. You know what I know now is that You know, there's a saying, like, what what's, what's meant for you will? Not pass you and I think when you're in the thick of it, you're just like how the heck is like, caregiving and doing all of these things meant for me, I think looking back now, especially kind of in my specific situation and where I am in now finding this passion in wanting to help other young caregivers who are hopeless and who don't have support, help them to kind of be supported through their whole care journey. I feel like all of this happening to me at a young age, Happens. So that now I could develop this platform and be where I am today.
Adrienne Glusman: I think another huge piece of it is. Learning to be present in your care journey. As a caregiver and I feel just like in anything in life. It's like we're always thinking about like, the next thing, right? Like, as we go throughout our day, it's like we're never really present in the moment, we're just thinking about, okay? And then I have to be at the gym and then it's like dinner and then I'm going out, you know, with friends, we're always thinking of that next thing and I think a huge piece of advice like looking back. I wish I would have been more present with my mom. Instead of always thinking about what do we have to do next just like being with her in that time like giving her my undivided attention when I could and just
Adrienne Glusman: trying to enjoy and cherish the time that we had together, even though it looked super different than anything I ever thought it would look like in a million years. But really just embracing the person that they are, like, letting go of the person that they were because that was really hard for me. I kept holding on to like who, my mom was and I eventually just had to let go of that. And just embrace the person that she was now, and learn new ways to bond with her, and things that I could do with her, they were very limited, but being present and just really taking it in because when they're gone, like they're gone, like that's it. And as hard as your care journey, might have been. And as many times as you would wish it was over because I know, for me, like so many times during my journey like selfishly, and for my mom because I saw her suffering, I was like, and this just be over like for both of us.
Adrienne Glusman: but when it's over, it's over and I think now in hindsight You know, I miss it like never in a million years. What I have ever said, like I missed caregiving, I miss caring for my mom, but like I do and I think a lot of times like, what I wouldn't give right to have her back, even having to be in that role. So yeah, those are kind of my Post caregiving words of wisdom. If I could kind of go back and do it all again.
Katie Wilkinson: Yeah, I love it. I was talking to a caregiver yesterday. Who Cares for her mom with dementia. And she was saying, You…
Adrienne Glusman: Yeah.
Katie Wilkinson: her mom used to tell this story that was like, not based in reality, but it was a story. She used to tell and tell and she was like, This isn't a real story. This is annoying. Whatever. Mom doesn't tell that story anymore and she's like, I miss the story that she used to tell. And so,…
Adrienne Glusman: Yeah.
Katie Wilkinson: yeah, like As much as in the moment you're like, this will never end, you know, it once it ends,…
Adrienne Glusman: Yes. Yeah.
Katie Wilkinson: it ends. So I really love that. You've obviously built an awesome platform for other young caregivers or all caregivers. Can you tell us a little bit about the young life interrupted and where people can find you online…
Adrienne Glusman: Yeah.
Katie Wilkinson: if they're interested?
00:40:00
Adrienne Glusman: Sure. Yeah, I mean the whole instagram, it's evolved over the years but I started it back in 2019 honestly just as a way to document. Just my day-to-day caregiving experiences like never in a million years thinking like, oh, people would actually follow my instagram or people might actually find my content validating or interesting. And so, over the years, it's kind of evolved. And now it's, it's young life interrupted. So I'm on Instagram and Facebook and then, as I mentioned earlier, I always had this idea in the back of my head that I wanted to do a podcast. But when, my mom was alive, it was just with everything else going on. It was just too much. So after she passed away, and I stepped out of caregiving for a bit. When I step back in, I was like, I'm gonna do this podcast, but it's gonna be a podcast, specifically, dedicated to young caregivers because we are such like, a subset of like the larger caregiving population. And while there are so many themes.
Adrienne Glusman: That. Spread across all different types of care. Givers caregiver caregiving at a young age comes with its own unique challenges. So I started a podcast that speaks specifically to what I went through in my journey as a young caregiver bringing on other young care, givers to talk about their journeys and experts in like different caregiving fields. And I also had a private Facebook group for young caregivers, young life interrupted for people to find community and support. And because when I was in my care journey, finding a Facebook group of young care, givers just like, Oh my gosh, like a weight lifted off of my shoulder to have this community of people that I could turn to you and who actually understood? What I was going through. So yeah, I'm super excited for the, for the continued evolution and just hope to help reach and serve other young caregivers throughout their journeys.
