Latest / Aging Parent TrapX / Caring for Aging Parents: What no one tells you
Transcript
- NikkiElitePrepServices: I think the most annoying part of all It is is just the revolving door in the house. And it I snapped at the hospice people because I was like, Do you guys not understand? Allison Newlon: Welcome to the Aging Parent Trap X podcast and YouTube channel. My name is Alison Newland. I'm the broker owner of Platinum Properties of Florida, and I am here with my friends and colleagues, Nikki Flynn with Elite Preparation Services and Julie Cook with Generational Transitions. And today Nikki is going to really open up and share with us what is going on in her own household. And she has talked about it a little bit in our previous episodes, but today we're just gonna let her tell you what it is really like in real time having her mom live in her home during this very difficult period in her life, and it all just kind of started by happenstance, really. It wasn't the way it was supposed to go, but yet here we are in Nikki. I am just going to give an on over to you and let you tell us the story and how your mom and your stepdad ended up in your home and what is going on today. NikkiElitePrepServices: Well, just I don't think we've ever recapped fully in depth, but my husband and I relocated here to Florida a little bit over a year ago and we wanted to move my stepdad and my mom down here just because I didn't want them living back in Vegas by themselves and not to mention the healthcare out there is absolutely horrible. So I really wanted to be able to provide for them and make sure that they retired and finished out the duration of their life in a place that they could be happy in. My dad always wanted to come to Florida too so We came down here first, got everything situated, and then shipped everything of theirs out here and flew them out here. In Allison Newlon: But but let's be clear, you made your home first with the idea that they would be finding their own home. NikkiElitePrepServices: Yeah, we knew that that it was gonna be a temporary fix for them to come move in with us and stay with us. just in the interim, getting established, getting everything set up. My goal was I I really wanted to find like a fifty-five plus community where they can just retire and have all the amenities and live it up the duration of their life. That was the goal. Allison Newlon: Right. NikkiElitePrepServices: upon my mom getting here, she was diagnosed with cancer. So you guys have probably heard many conversations. Talking about visits to appointments and stuff, and so she was going to Moffitt and she was doing chemo and radiation and all the things. And two months ago, we not even two months ago, but we made the decision to stop treatments because they were not responding. So she had gone through the first about from October, no, from November of last year till February of this year, where she did radiation and chemo. and then we had a a a break for like a month, did some more testing. I think it pissed off the cancer even more, came back with a vengeance, spread even farther, lymph nodes, tried more chemo, two different chemos and immunotherapies, and it just was getting too hard on her body. She couldn't handle it. it was needing blood transfusions. She couldn't maintain and stay on everything like she was supposed to, developing blood clots, Allison Newlon: no. NikkiElitePrepServices: and just whittling away to nothing. And so we made the decision that her body was not responding to the chemo, the cancer was still spreading. So the doctors basically said that the option is quality of life, not quantity of life, which I agreed. And I was pushing the conversation, but they were insistent on at least getting in three treatments. I saw it happening. I saw the decline. and so they wanted to at least get three solid treatments in her to see if there would be any change and there wasn't. so I finally had to force their hand and make them tell her that she was terminal because they didn't even want to do that. so we opted to start the process for hospice care because she was just in agonizing pain. She was crying Julie Cook, Generational Transitions: Mmm. NikkiElitePrepServices: every time she moved. It just it's it was not it's not fair to watch and it's not something you want to see. So obviously moving out is definitely not on the table. So we've opted to have them stay here. and let me care for her as much as I can. Unbeknownst to us when you start hospice care that you don't have an option on the type of treatment, it's home care. Period. Full stop. They have a facility that if they need to go to do short-term stay to get your pain under management, or if you're gonna be leaving town, they'll give you five days in a facility, but that's it. They want them at home. Allison Newlon: No. NikkiElitePrepServices: So unfortunately, what that means is you get to watch the deterioration, you get to watch the just the the change in your loved one, and then of course they pass away in your home. Not something people really want to see either. so that's that was definitely not something I was prepared for. but I don't think anybody really is. And also on the other hand, the other option is yes, you could do nursing home, but at that point, why would you I mean I get why you would want to if they need the around the clock care, but then you don't know what's going on. And that is where I've come full circle with all of this, with my house being a revolving door. Hospice coming in, all it's I have got people coming in on the daily. The first time the first week it was had a caseworker, then you had the nurse, then you have a chaplain, then you have the nurse practitioner. And it's like w I i it and they have their their quotas. They're they it has to be done all within certain amounts of time. Allison Newlon: Mm. NikkiElitePrepServices: Like I not calling, just stopping by, or scheduling appointments, changing times, not telling you ahead of time, calling the day of. hey, I know our appointment's between 1030 and 12, but I'm ten minutes away, I'll be there in ten minutes. Allison Newlon: So that really disrupts, I mean, you and your husband work at home. And I know that you're not trying to be a jerk about it, but you schedule when you work from home, you still have appointments to keep. You keep them on Zoom or there's phone calls, things like that. So when somebody just willy-nilly calls you and says I'm 10 minutes away, NikkiElitePrepServices: Mm-hmm. Allison Newlon: they don't know what your schedule is, and you have already mapped out your day, expecting NikkiElitePrepServices: Mm-hmm. Allison Newlon: them at, you know, an hour and a half later than When they say they're going to show up, which may or may not be okay with you. So what if you said no to that, by the way? NikkiElitePrepServices: Right, yeah. So th and to then add more chaos because my life is just fulfilled with chaos, she was sleeping, so I had to wake her up. And if those of you who have not heard, I have two one hundred pound plus dogs, so they have to be put away every time there's somebody in the house. So it's like I waking her up is a process and she doesn't move very fast, which of course that's obvious she's not gonna move very fast. And she's like the nurse was like, No, it's okay. She can stay in bed. I'm like, no, you don't understand. She's sleeping out cold. Allison Newlon: Yeah. NikkiElitePrepServices: Like it it's not she can stay in bed, like she's knocked out. and I've Allison Newlon: Right. NikkiElitePrepServices: tried to explain to them there's reasons why I schedule afternoon appointments, not just because it's convenient for you or for me. It's for her. Like I know her schedule. I have her on a schedule. Like everything it's it's just it is Allison Newlon: Right. Julie Cook, Generational Transitions: You can. NikkiElitePrepServices: what works for her. So I'm not gonna keep waking her up. And so that that part last week was was pretty bad and I I went a little postal on one of the nurses and I was like I've had it I've I've just I've had it like the the third time in one week. I need to come early. I forgot I'm leaving early today and I just was like you know you guys are so inconsiderate of our time. I scheduled my day around you coming at this specific time. I have appointments I have to be on camera I have things to do and no I'm not just I have to be in there because if I'm not they're ordering supplies. for her, they're scheduling other people to come by, they're changing her prescriptions. It's like it's a full-time job just to keep up with what's going on. Allison Newlon: So is it the same person every single time? No. NikkiElitePrepServices: The the weekly nurse is the same person. But then you have the nurse practitioner who comes out every six to eight weeks. So she's she's a a separate person who I found out. But then you have the case manager who will come out just to kind of routinely check on things whenever that's necessary. or if there's been a change in things and we need to bring the nurse practitioner out for an evaluation of medications, if there needs to be a bigger change, like a change in the drug. Altogether, then the nurse practitioner will come out. But it's and every single week I feel like we're changing her meds. I have become a Walgreens. I tell me what you need, I'm sure I have it. Like I'm I keep telling them, like, why are we doing this? Like every week, why don't we use what we have? no, no, no, we'll just order you more. I'm like, what I okay. I don't want you to order more. Can I use what I have? Allison Newlon: Right. I I mean, this has gotta take a toll. I mean, this is one of the reasons that, you know, we talk about this, but talking about it right now as a Gen Xer being the caretaker for, you know, your mom. it people a lot of people feel like it's their duty to do that, but they don't realize how hard it is because you're I mean, you may have a little bit of training in terms of what you did in your previous life, right? NikkiElitePrepServices: Mm-hmm. Allison Newlon: but not everybody went to some sort of nursing school, right? NikkiElitePrepServices: Right. Allison Newlon: I know I didn't. I am completely unskilled when it comes to doing anything in term like even just taking my mom to the bathroom. Like I just I I don't know, I turn into like you know, like somebody who's just I am just ill equipped at it. I just am not good at it. I don't know the right way to get her off of, you know, out of off the walker into the, NikkiElitePrepServices: Mm-hmm. Allison Newlon: you know, toilet and back up and there's a certain f you know, strength NikkiElitePrepServices: Mm. Allison Newlon: that you have to have or a certain way you have to do it. I can't imagine if my mom was living in my house and that happening. But sometimes people I guess what I'm saying is a lot of Gen Xers are put in this position right now where they're like, Well do we find a place for mom and have them or and dad or dad and and have them go there because we can't or they could stay with us because we feel like we owe that as a duty or simply they just can't afford to pay for option number one either. That that happens. NikkiElitePrepServices: Yep. It's you know, I get the feeling like it's you're the guilt. You have to. So I'm the only child. It's just me. I do have my stepsister, but she's only part with my stepdad. So I do have her of like a sounding board and like to help when I can, but she's back in Vegas. So there's only Allison Newlon: Right. NikkiElitePrepServices: so much that she can do from there. but her and I had a nice long two hour conversation on Sunday just talking about this exact s situation where she's like, you know, y I I don't envy you and I feel guilty. Because it's all on you. And we were talking about, you know, what's gonna happen once she does pass, what's gonna happen with dad? And I told Allison Newlon: Right. NikkiElitePrepServices: her, I like, I he will stay here with me because she can't handle that. She and she fully admitted, she's like, you know, I I'm stressing thinking about it because I know I am not as strong as you, I know I can't do it, I know I don't have the strength to do it, and I I can't. I get it. Like I I totally get it and I understand. I wouldn't want her to go through that because she would handle things way differently. And Allison Newlon: Mm. NikkiElitePrepServices: plus she's got my nephew, and I don't want him to see that either. It's Allison Newlon: Mm-hmm. NikkiElitePrepServices: not pretty. It's Julie Cook, Generational Transitions: Bye. NikkiElitePrepServices: not no matter even if they're the healthiest, you still see a decline, you still see a deterioration, and that's not something that you want like grandchildren to remember. Yes, we're still children, but we can handle it little bit better than. Than minor children can. So it's like I don't I don't want them to think about that. Like I I don't know about like remember when we were younger, like funerals were a thing. They're they're not really a thing anymore. But I remember going to so many when I was young. Like it was crazy. It was just a a thing that like everybody always did. The family always got together. We always went to the same funeral home and like the whole nine. I remember those things, but I people really don't do that. them anymore. So it's like the kids aren't really exposed to that kind of stuff. Or maybe it's just I haven't because mm most of the family has passed on. So you guys can tell me if if that's really been a thing or if you guys had the same upbringing or if my family was just morbid. I don't know. Allison Newlon: Julie talk, she's been so quiet. Julie Cook, Generational Transitions: So Nikki, as I'm hearing you talk, NikkiElitePrepServices: Mm. Julie Cook, Generational Transitions: it's bringing back so many memories. My mom passed away from cancer 20 plus years ago, she was under hospice care, passed away in our family home. And so as you're saying all of these things, it's bringing up stuff that I haven't thought about in a very long time. I was trying to remember at that point, my dad had taken, as I think, a leave of absence from work to be able to try and juggle all of the things. I do vividly remember becoming a caregiver for my mom. And so when you mentioned your nephew and not wanting them to see the progression, that is very difficult. And I remember I actually connected on LinkedIn with the lady who wrote a book that hospice gives out. Maybe you've seen it's a little blue book that talks about that process. And it was really helpful for my personality. like information. can deal with stuff if I know what I'm dealing with. And so to know what to expect, what to watch for. But even then to see somebody that you love who has been this vibrant person that you've known one way for so long and then to see them, you know, struggle and start to change physically, mentally is very difficult. So I'm feeling for you as I'm hearing the story and I'm very glad that we're having this conversation again, because you have people who are in your situation in this situation. My family was in years ago and it's like, am I a jerk? Because you know, I don't want my loved one passing away in my home. I don't want to sit here and watch this progress. And so to know somebody else has walked this path, had the same feelings, there's just some kind of comfort in knowing I'm normal. NikkiElitePrepServices: Yeah, that's and and that's the hardest part. That's what I told my husband. I was like, you know, I I'm on the fence. Do I wanna watch this? Do I do I want to be a part of this? Selfishly, no. I don't. Julie Cook, Generational Transitions: Yeah. Yeah. NikkiElitePrepServices: But sometimes Allison Newlon: No. NikkiElitePrepServices: you don't have a choice. And I you know, I always used to say when my my actual birth father passed away in twenty twenty three, he would gone like that. I didn't have a choice. He was just taken. So Julie Cook, Generational Transitions: Mm-hmm. NikkiElitePrepServices: I I weigh the options. Which one is better? To know or to just have it taken. And I I used to be on the fence about it. While I'm appreciative that I have this time with her, it's about the quality though. And it just if there's no quality that's the worst part. So it's like you're watching the suffering and Julie Cook, Generational Transitions: Yeah. NikkiElitePrepServices: the agonizing and it's carrying out but it's like it it's on God's timeline. Like you you don't have a choice. You just have to deal with it. And I do feel bad and I do feel selfish sometimes because I am like, you know, I just I I'm trying to still do things too and my neighbor came over and She works in a a facility. I think it's in a group home or nursing home facility, but she was telling me that like what she went through with her parents and with her brother where she specifically said, don't lose yourself. Like that you have to focus on you because if you just give a hundred and ten percent to this situation, you're going to lose my s yourself. And that's something that my husband has been very adamant about. Like, stop doing everything. And I don't wanna just put it all on my stepdad either, but he's been a big help and he's one that has to feel purpose, he has to feel wanted. He he wants to feel like I'm doing something. So he's happy helping. But there are some times where she's like, no, I want Nikki. And it's like hey but Nikki is working. So Nikki needs a break. So but Julie Cook, Generational Transitions: Yeah, yeah. Allison Newlon: Well, are you a I mean, you said that he can help a little bit. Now I mean, isn't he like in his upper eighties right now? NikkiElitePrepServices: He just turned eighty eight on Friday. Allison Newlon: And I know he's in amazing physical health and he still drives and all of that. but he is able to help. Are you guys, you and your husband, are you able to leave the house to go to dinner or like go to the beach for the day or and I know that that sounds super selfish, but that's what your neighbor who had you know NikkiElitePrepServices: Yeah. Julie Cook, Generational Transitions: You've got to. NikkiElitePrepServices: Yeah. Yeah. Allison Newlon: and let him y here's the thing. Well, I don't know. Answer the question, I guess. Okay. NikkiElitePrepServices: Yeah, we we do. Yeah, we try to But my husband bowls. He bowls twice a week. Allison Newlon: that's right. NikkiElitePrepServices: So we're we're back to our routine schedule and you know we we try to divvy up our time. So my dad loves football. Loves football. So of course football season. So he loves sitting. Allison Newlon: Thank goodness. NikkiElitePrepServices: Him and Jason will sit downstairs and watch the games on the TVs and like they they love talking about all that kind of stuff. So that's a good thing. With him being able to bowl during the week, it just gives us that Break, but and it's not being selfish because what you don't realize is that it takes a toll on you watching this process, Allison Newlon: Mm. Julie Cook, Generational Transitions: Yes. NikkiElitePrepServices: and you start to get depressed and you start to lose yourself, and then you start lashing out at people who are close to you because you're stressed and you're frustrated and you don't know how to deal with the situation. So Julie Cook, Generational Transitions: Bye. NikkiElitePrepServices: when everybody was telling me make sure you take time for you, don't lose yourself, I was Yeah, yeah, yeah, I'm fine, I'm fine, until I got knee-deep. in it and then Jason had to pull me out and be like, You're doing it. This is what's happening right now. So it's it's not being selfish because You get on an airplane, they tell you put your mask on first before you put it on your loved one. That's because if your cup is empty, how are you gonna fill somebody else's? So it's it's not being selfish as much as it you might think it is. It is not. And it's something that is a necessity. And I do need to do better. I used to meditate every single day. I I used to take time for me, and I haven't in a long time, and he's reminding me how it should. showing so I'm gonna start trying to just kind of take little like carve out times but it's just so much juggling and then of course I I go and hurt myself and have that was because I I did I everybody told me to take time for yourself. I I was mechanical bowl Allison Newlon: In the middle of it, you go ahead and you have a a wonderful night out which involved what was it? The is it a bucking bronco? what was it? That's right. Julie Cook, Generational Transitions: I'm Yeah. NikkiElitePrepServices: And I was doing a bar crawl because everybody insisted I needed me time and I needed to take a break and Julie Cook, Generational Transitions: It's so much for taking care of yourself. Allison Newlon: Well she took the teela tequila I said teela tequila took Julie Cook, Generational Transitions: Yeah. Allison Newlon: care of Nikki on that night. you felt no pain until the next morning. NikkiElitePrepServices: In yeah. Yeah. Yeah. Yeah. Yeah. Allison Newlon: I'm joking, but not joke. I mean, you hurt yourself and you had to have surgery and now you're going NikkiElitePrepServices: Yeah. Allison Newlon: through a rehab situation yourself. All in the middle of all of this, right? I mean, and I guess the I Julie Cook, Generational Transitions: Mmm. NikkiElitePrepServices: Right, yes. Because chaos is what I thrive on. Julie Cook, Generational Transitions: Yeah. Allison Newlon: and I guess the point, you know. that we're trying to make is that sometimes the best laid plans, right, don't don't happen, right? So you NikkiElitePrepServices: Mm-hmm. Allison Newlon: had a plan And then it got turned upside down and you had to shift and do it a different way. And now this is what it is. And you're doing the best that you can. But some people are deciding and have the time to decide, will I or won't I? Should I have mom or dad come live with me? Should I be the caregiver? I mean, just weigh all of the things and take care of yourself. in doing it. And I I I I anything that you want to add to that? I mean are there any other things that you would like to share with the examples? Because I know you shared a lot with us NikkiElitePrepServices: I would say if if there is somebody who's even considering this and you have the ability to bring in outside help, do it. It's not gonna be covered by insurance. But do it anyways. If you can afford it, even if it just gives you a couple hours a day, that's a couple of hours that you didn't have previously, that you can still maintain a normal life and they're still getting company, they're still getting tended to, they're still getting attention and you're still able to maintain things for yourself. Even if it's going out to dinner or going to the store or I I finally was like, Okay, it's time for me, I'm I going to get my roots done tomorrow. Like I just sometimes you just need to pause and try to have a little bit of normal life and it's not being selfish. And I'm I wish there was somebody who had this podcast or information for me because when I took care of my grandma This was almost twenty years ago. Things were a little bit different then. And she went into a facility towards her last couple of days where she passed out of facility where it was a little bit different, but Allison Newlon: Yeah. NikkiElitePrepServices: it it was not this type of situation and it hits a little bit different when it's your actual parents. Allison Newlon: Well, thank you Julie Cook, Generational Transitions: Yeah. Allison Newlon: very much, Nikki, for sharing that information. And if you are out there, you're a Gen Xer or not even a Gen Xer and you're going through something like this and you would like to share what you're going through, we would love to hear from you. Our contact information will be in the pinned comments below. Thank you for watching.