Lewy Body Roller Coaster
Lewy Body Roller Coaster
The Last Goodbye: Planning Your Funeral Before Lewy Takes Over
This week, Curry shares with us his and his wife Linda's experience going to a funeral home to plan their funerals in advance so their children did not have to later on. He shares how he felt during the process and why he wanted to share with our listeners and members of our Facebook pages.
"I would hate to have left Linda to decide all that in a day or two," Curry confesses, his voice carrying the weight of nine years living with LBD. During a recent period when his symptoms have intensified—increased confusion, slurred speech, and devastating sleep disruptions—he still prioritized this difficult task. The contrast is striking: even as Curry struggles with Lewy's daily challenges, he's thinking ahead to ease his wife's future burden.
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welcome back podcast family yes, welcome back y'all and just another quick shout out to everyone for your continued support and patience. We really, really appreciate it.
Speaker 1:Yes, we do. We want to thank you all again for being so patient and supportive of us.
Speaker 2:Yep, and before we start, a couple of reminders we try to do so I'll do them quickly is please feel free to share the podcast link, or just the name of the podcast, to your family, friends and doctors. You all know it's really important for them all to hear from those of you living with the disease and their caregivers.
Speaker 1:Also, I want to remind y'all that if you'd like to be a guest and share your story in hopes of helping others, just contact Linda Zappula or myself through Facebook Messenger or through our email, which is louisbodyrollercoaster at gmailcom. We'd love to have you on the podcast, and I do know that we've got quite a few people lined up. It's just a matter of getting to them now.
Speaker 2:Yep, yep, yep, yeah, and I know it's. We feel bad if we can't get an episode off every week because of life, but I think our listeners understand. You know, because the Louis shows up or you know being on the other side of it. It's not, I don't even I'm not going to say it's not easier than going through the journey. It's just a different kind of difficult. But anyway, just remember we post the links for the podcast. La la la Just woke up. Curry woke me up and said let's go, I'm awake. We post the Patreon and GoFundMe links at the bottom of the episode notes and it's on the top of the Facebook pages. So if you feel blessed to help us keep this going, we really appreciate it. So thank you from blessed to help us keep this going. We really appreciate it. So thank you from the bottom of our hearts.
Speaker 1:Yeah, and as a reminder, we're not giving medical advice. We're just sharing our open and honest feelings and thoughts as we live with Lewy body dementia. Okay, that's enough of that. Let's get this episode started. I want to give a few shout-outs out first to some of our good supporters. We've got Carol McNeely, effie Chan, denise Huber and just a minute here, let me get through that page Aileen Sherwood and Anonymous Anonymous. Thank you all very much. Let's get this week started let's get this week started.
Speaker 2:Yeah, and it's just me and you, um, just because I kind of want to, we want to talk about a specific topic. But right before we started recording, curry said to me we just finished it. We decided well, I decided to to ask the people on one of our zoom meetings to if I could record the, and then it became a three-part episode, which those of you who listen know, because I was like they just need to hear what it's like at the meeting. We do laughing, we do talk about Louie. We're really invested in each other's lives and we want to know how everybody's doing. And somebody has an event that they post and then we talk about Louie. Somebody has an event that they post and then we talk about Louie. So Curry said to me, just as we were ready to start, that he just listened to the third episode that we recorded from that Zoom meeting. And what did you say?
Speaker 1:I said I sound like some old drunk on there.
Speaker 2:And he's really upset about it. But you know, when we recorded that Louie had a hold of you, right?
Speaker 1:Oh yeah but I'm slurring my words and you put slurring my words with my accent and I really sound terrible. I need to apologize to every one of our listeners because I was not drunk and I sure sound like it.
Speaker 2:No, you do not need to apologize, sir. That's not what I thought you were going to say. I mean, I'm going to tell you you don't need to apologize because you know when Louis has a hold of you guys, you don't? Yeah, I was just amazed that you came to the meeting because I know, and we know, if you're following the Facebook pages, that you've really been struggling last month, especially with your sleep. But maybe you sounded like that when you went to the ER the first time and that's why they thought you were drunk. And you don't hear it in yourself that you're doing that, but that just makes it real Curry that people can hear that. Was you struggling through an episode of like that? Was you struggling through an? You know an episode of Louie that had you just wiped out? Yeah, yeah.
Speaker 2:So no, apologizing. Young man, older man, I should say Right, yeah, no, no apologizing Cause that's. You know when we, when I first reached out to you, remember, I said I just want people to hear from the people with Louie and what it feels like, and that was what you were feeling like in that meeting.
Speaker 1:Yes, ma'am.
Speaker 2:In your mind. You didn't hear that slurring.
Speaker 1:Uh-uh, not until I listened to it last night.
Speaker 2:Right. So don't you know? You don't need to apologize, people understand. You know, sometimes Louie does that to you and you just I'm trying to make sure I talk right this morning.
Speaker 1:Whether I accomplish that or not, I don't know. Yeah, I'm trying.
Speaker 2:Yeah, so real quick. How have you been doing Because you besides the sleep if people aren't following on the Facebook page as closely?
Speaker 1:Oh, that's it. I've been down, I've been more confused, as ever. I kind of think some of the things Linda's been telling me that I do. I'm just getting more confused. I she can talk, we can talk about something, and I don't remember talking about it. I do things that I don't realize. I'm doing the things right now, but it's not been a good three or four weeks, yeah.
Speaker 2:Well, you know you've been on this downward with the Louie before.
Speaker 1:Yeah you know and, like you always said, you just got to ride it out. That's it. It's been a tough ride this time.
Speaker 2:Yeah, yeah. Well, you are getting older. Young man, old man.
Speaker 1:Mm-hmm, I know.
Speaker 2:Yeah, it's just you're not old. You're not old by far at all, it's just it gets to you right.
Speaker 1:It just wears you out. I'm in my ninth year now. Mm-hmm, it just wears you out. I'm in my ninth year now.
Speaker 2:I know We've said you should have been dead four years ago.
Speaker 1:Yeah.
Speaker 2:Yet you texted me and said let's go, we need to do this podcast. So, you know? Okay. So Curry did something the other day and he said he wanted to share about his experience and I said this is great, you need to talk about it. He went and did what he needed to do for yours and Linda's funeral when the time comes. Now let me ask you what made you do that now. Is it because the way you've been feeling, or what pushed you to actually do it now?
Speaker 1:They had an ad on Facebook offering a free meal. Wait, did you say a free meal, or?
Speaker 2:a free miracle.
Speaker 1:Free meal. Yeah, they had an ad on Facebook.
Speaker 2:I'm sorry it's not funny, but it's funny. Was it bacon-wrapped bologna meal?
Speaker 1:No, it was barbecue. Oh my God.
Speaker 2:I'm sorry, I didn't know that.
Speaker 1:Yeah, they had an ad on there and the funeral home here in town and Linda and I have always, every time we drive by it, we say we need to stop in there and do this. Well, so I signed up for that free dinner and we went there and listened to him and all that, and we didn't have our daughter with us and we wanted to take our daughter with us. Of course, we didn't know what all was going to happen and it got so in-depth that we said no, we need to start and stop all over and let us bring our daughter with us so she can hear it. Well, we ended up. We wanted to take our oldest granddaughter, becca, with us too, so they could both be there and listen to everything. But, yeah, the free food's. What got me in there finally Was it good barbecue at least.
Speaker 2:It was real good barbecue Now were there a lot of people you don't live in a big town Like, were there a lot of people there Now. Were there a lot of people you don't live in a big town, like were there a lot of people there.
Speaker 1:No, they had a list of people that were supposed to be there, but it ended up only being us and one other couple.
Speaker 2:Okay, Well, I'm just asking because if it was like too crowded for you, yeah, no, no, not at all. That's great. Well, it's a smart advertising tactic to get people in the door. Yeah, it works. Yeah, yeah, and the barbecue was good.
Speaker 1:It was a real good barbecue, but what it came from a place in Bartlesville that Linda and I used to eat at quite a bit oh, that's nice, but what kind of. We hadn't been able to get back to it yet since we've been here, and that's where they catered it from. Wow.
Speaker 2:And sorry I don't do barbecue, but what kind of meat was it?
Speaker 1:Brisket ribs and chopped beef.
Speaker 2:And when only three people showed up, did they have extras that you could take home?
Speaker 1:Yeah, they did.
Speaker 2:They sent you home with some.
Speaker 1:Yeah.
Speaker 2:That's a great ploy to get in the door. Okay, so I know we talked after it. Well, we texted afterward and you said it kind of wore you out. But tell us about your experience when you went.
Speaker 1:I tell you what, not counting the night that we ate. But when we went back on Saturday with our daughter and granddaughter, there was a lot to planning, if you know what I mean. You know we had planned my mom's the thing about that. My mom had everything written down. She even had down where we were supposed to buy the dinner rolls from, yeah, and what type of dinner rolls, uh. So hers was pretty easy for us. But we got in there the other day and realized there's a lot to it, from picking the music, uh, to picking the casket, yeah, and picking the urn.
Speaker 2:Yeah, are you. Are you being stuck in the ground? I'm going to be cremated, and Linda well.
Speaker 1:I don't know. Yeah, Linda's going to be buried.
Speaker 2:Yeah, yeah, yeah, being as I did not practice what I preach before Jim passed away and then how quickly he passed away.
Speaker 2:If I didn't have my two daughter-in-laws, I don't know how I would have done all that, because I just couldn't. I couldn't emotionally and mentally make decisions at that time and I just handed my credit card over to the girls and they did what needed to do, including getting a hold of the brain donation and having that all organized, because I know I shared before they came and got him in Louisiana but took. Well, they got him, they took him somewhere and took his brain and sent that to another place. It was just I would not have been able to do that at that time. Yeah.
Speaker 1:Let me tell you, folks, something. What I did find out in there was most funeral homes and I feel like I could probably say almost all of them, but most funeral homes will set you up on a payment plan to where you can start paying for your funeral now and it's really easy and it's a good thing to do. Yeah, and most when someone passes.
Speaker 2:typically you know, because, like you're saying, you did it for your mom, I did it for Jim. Both of Jim's parents, like Jim's parents, owned a pet cemetery. Did they ask you if you have an insurance policy? Because usually that if they know you have that, that will come off the top and then, yeah, that's the thing.
Speaker 1:I had. I've got insurance, life insurance policy. I mean, I've had since 2009. And they did point out to me that if you're on hospice, you don't get a payment plan. You don't get a payment plan if you're not on hospice. That was cool, wasn't it?
Speaker 2:Yeah, because they want you to, for everybody listening. Even you know it's not just for you, it's the person with Louie, it's for the, because I haven't done this yet and you have motivated me to when I get together with all my kids next week to sit down and say, okay, we need to figure this out.
Speaker 2:And so you guys, because with jim, you know, I told you his parents had passed away, but his brother passed away many years ago and his parents bought four plots and we knew the headstones were on those three and I knew I didn't know whether it was to the right of them or to the left of them and I knew we had the I guess it's the paperwork saying we have this plot. I could not find that for the life of me. I could not find it anywhere. So my son had to get involved with somebody that lived close to the church. It was just such a, it was a lot. And after we moved, like I have a safe. There's no money in it, but that's where my passport is, and in that safe is the paperwork and an envelope. Like in my brain, like when you're going through it right after you lose your spouse, my brain, when you're going through it right after you lose your spouse, my brain couldn't even how do I not know the important paper was in that safe, because when we moved, here, to Pennsylvania.
Speaker 2:I'm like I've got to sort through this because I still have all this mom and dad stuff in there and I'm like that's been over 20 years and I'm like, oh my God, here's the paperwork, but you don't for the one that's left behind. It's just I commend you for doing it.
Speaker 1:I would hate to have not done that and left Linda to decide everything. I mean, there's a lot to it, from whether you're going to have a viewing or not, the music you choose.
Speaker 2:Yep? Open or close, casket Open or close, and who's not the music you choose. Yep, open or close, casket Open or close, and who's?
Speaker 1:going to speak at your funeral.
Speaker 2:Yep, what do you want to say? Well, a lot of people don't do the paper obituary anymore. Like I didn't do that, I just posted it on Facebook.
Speaker 1:Well, there's really no need, but we're going to do the one newspaper.
Speaker 2:And they're expensive. Yeah, yeah, that's one of the reasons I didn't do it, because we haven't gotten the paper forever.
Speaker 1:It's terrible for newspapers.
Speaker 2:So to me, posting it on Facebook and just word of mouth was going to get it out, more than putting it in a paper, because sadly, sadly, sadly, people just don't read. I know right papers.
Speaker 1:Maybe they get them online. I think we're going to put it in the newspaper. Uh, the local one here in bartlesville. I think it's going to go in it. Uh, no, it's not. I'm sorry, it's going to go in the claremont paper, where I grew up.
Speaker 2:Yeah, I was going to say that's probably better, because those people know you. Now are you going to sit down and do what your mom did?
Speaker 1:Like put on there. We did that.
Speaker 2:Yeah, this is the food I want. I want bacon, wrapped, bologna and smoked for 30,000 hours.
Speaker 1:We covered all that. I mean it's pretty in-depth.
Speaker 2:Yeah, but don't you feel a sigh of relief now that you know that that's done for both of you?
Speaker 1:I do because, like I said, I would hate to have left Linda to have to decide all that in a day or two. Yeah, you know, gone.
Speaker 2:My thing is. I guess the reason I didn't do it is because I just didn't know how to approach the subject with Jim.
Speaker 2:You know he knew I had this terminal illness and I struggle with that.
Speaker 2:A lot Like with the messages that I had him leave on my phone for the kids, as if he was leaving a message on their phone Right. That took me months to get up the nerve because he knew why I was having him do it and it broke my heart that I wanted him to do it. I mean he did a great job because the one he left for Andrew Andrew really struggled after he didn't want to play music anymore and then he left the message. It was something like keep banging on things because I'm proud of you, because he's a drummer, he's in percussion and that's what got him out of bed is that message that I, after the funeral and everything was over, I sent the messages to each kid and I said when you're ready, listen. But it's hard to approach your loved one who has a terminal illness and say, listen, we need to do this and do that. That's why, when you said you did it, I'm like, and you said you wanted to share, I said we got to do this.
Speaker 1:We talked about it when I first got sick and we did all the power of attorneys and living will, all that good stuff back then, but the only thing we didn't do was plan my funeral.
Speaker 2:Well, you moved a couple of times since then. Right, Exactly right.
Speaker 1:Yeah, yeah. But so and I do want to say I was talking about them giving you a payment plan a while ago you don't even have to take up a payment plan, you can just go on there and pre-plan everything. It's not, you don't even have to take a payment plan, you can just go in there and pre-plan everything. You don't have to start paying up front. Right, they do offer payment plans for people.
Speaker 2:Yeah, and I'll tell you.
Speaker 1:it's a good thing. Yeah, If anyone that doesn't have their funeral already planned, you ought to think about getting it done.
Speaker 2:Yeah, and your will, if you haven't done that.
Speaker 1:Yeah.
Speaker 2:But typically, when it's a married couple, everything just goes to the surviving spouse. Mm-hmm. Which makes me I need to. I just wrote down, I need to update my well. I don't know if I need to update the will, Because we did it. If one of us dies, it goes to the other and if that person dies it gets split to my kids, right right, to avoid any of that family bickering that we hear about, which I doubt my kids will do that.
Speaker 1:Money you never know.
Speaker 2:I know money does some crazy things. I'm going to say that, like I said earlier, jim's parents owned a pet cemetery in New Jersey for years, but before that they ran a human cemetery when Jim was in high school and when we went to the funeral parlor when Jim's mom died. They go in and they show you all the beautiful caskets and you can upgrade for this. You can upgrade, they can have a cushion, you know fluffier pillow I'm making that up, but you know what I mean. Or you can have lace lined or silk.
Speaker 1:Everything you're saying is true.
Speaker 2:Right Silk lined and no silk. Everything you're saying is true, right, silk lined, and all this and it's because Jim's family and he lived around a cemetery and a viewing and exactly what we were going there to do, he said no, no, show me the boxes you have in the basement. Because he said we're all going to decay in that box. So they have, I guess it's, for I want to say it just looked like gray corrugated cardboard.
Speaker 1:It is Cardboard.
Speaker 2:Yeah, it's for, like the people they don't, the John Does and things like that. And Jim's like yeah, that's the one we want, and I don't remember the money, but it's literally instead of $2,000, maybe it's $200.
Speaker 1:Yeah, that's like on me. When it came down to choosing the casket, all I had a choice was since I'm getting cremated, was they're going to put me in a cardboard box and then they'll rent me a casket. And I made jokes with them about rent a casket, but yeah, with the viewing, since I'm going to have a viewing, they're going to put me in an oak casket for the viewing and then they'll put me back in the cardboard.
Speaker 2:Okay, yeah.
Speaker 1:I'm going to come. Isn't that funny?
Speaker 2:It is, but you're going to have an open casket viewing. Yes, can I bring markers? Yeah, yeah, I'll draw some smiley faces on. I'll draw the smiley faces on. I'll draw the podcast logo Right. Honestly, I have trouble with open casket funerals.
Speaker 1:Yeah.
Speaker 2:I've seen my aunt. My aunt, that's, I think, the first and last one. I went to stand behind, stand next to the coffin of my uncle, and I, just, I, just, I didn't, I don't. I knew I go ahead, let me back up.
Speaker 1:No, the viewing is for the family only. Okay, and then the service is just my urn going to be there.
Speaker 2:Okay, yeah.
Speaker 1:I had that mistaken, so is that?
Speaker 2:funeral home going to be there? Okay, yeah, I had that mistaken. So is that funeral home going to? They have connections with the company that does cremations.
Speaker 1:Yes, ma'am.
Speaker 2:Because the company that my daughter-in-law found for Jim's cremations. They came in a beautiful box because that's the way they came. We didn't ask for it and I didn't know it was going to. I thought it was just going to come in a cardboard box or something. So in the meantime I had not to take anything away from the funeral place that you just went to. But I got Jim a gorgeous one with a guitar on top and it was only like $350.
Speaker 1:Yeah, we got to choose my urn and there was a whole book full to choose from.
Speaker 2:Were they really expensive.
Speaker 1:No, no Matter of fact, I think my urn was like $300. Yeah.
Speaker 2:Yeah.
Speaker 1:And that included some of the small ones at $30 a piece to go to the family. Yeah, yeah, yeah, halloween's at $30 a piece to go to the family.
Speaker 2:Yeah yeah yeah, because I know our friend Dee and her husband passed away. Afterwards she went onto the site and you just Google it, you can find the sites. Because my goal, like I even bought the big plastic box that the urn with the guitar would go into to put in the ground and at his funeral someone said why would you bury that? Because it was sitting on top of the really nice box that the cremation place sent. And I was like I don't know. So now I'm going crazy, I'm trying to figure we've got to get this funeral over, we've got to go to the cemetery. And so I said to Manny which you guys all know, manny helped drive the, uh, my rv. And I was like uh, so, and so said why are we, why are we burying that? And I'm like can you take half out and put half in the one and half in the other?
Speaker 2:so it's like I did all this stress of finding the plot and then of course it was paid for, but we still had to pay $500 for them to open it and $250 for them to close it. So I remember writing a check at the cemetery to give to the guy. But I'm like, why did I do that? Like what you just don't. The point is, and why I was like, yes, we need to talk about this is when you're in it, as the spouse left behind, you can't make those decisions.
Speaker 2:There was no reason for me to put half of them in the ground except to be close to his sibling and his parents. But I also found out which I didn't know you can put four urns in one plot. Now that was in New Jersey and you can put, I think, an urn and a casket, so wherever you choose to be buried, that's. I'm just saying, ask those questions ahead of time, because usually they don't tell you. I'm assuming it's because they want to sell you more plots, but Jim's in a very old cemetery and there's really not much left. You know, because his parents, once his brother died, they just bought four. But I never knew you could put four urns. You know cremations in one plot for urns. You know cremations in one plot.
Speaker 1:Well, I knew from my sister's passing she was buried in the plot with my mother.
Speaker 2:Now was she cremated.
Speaker 1:She was cremated. And your mom was not, and they told us up here that you can put a casket and an urn in the same hole. Yeah, but what we're going to do is, if I go first, which more than likely will happen I'm going to be cremated and the urn will come here to the house and Linda will hang on to it, and then, when she passes, they'll bury me with her.
Speaker 2:Okay, that makes sense. Yeah, they can put you in her casket maybe yeah.
Speaker 2:Okay, yeah, they can put you in her casket maybe. Yeah, okay, I always, you know, before, like years and years ago, jim and I used to kid around. I'm like you know, I still want to be on top, so you got to. You know, let me put the caskets. They need to turn mine upside down. Right right, I think that was after his mom passed away, trying to find some levity in it. But I didn't even know. When his mom passed away, they never mentioned that you could put an urn in the same place that you put a casket.
Speaker 1:Well, depending on how long ago it may not have been, that Cremation may not have been such a big thing back then, but now it is.
Speaker 2:Yeah, because you know why it's least expensive.
Speaker 2:And I know when I was in Louisiana when it happened and I told you I couldn't even leave the state until I knew Jim was safely in New Jersey at my friend's house and then I was able to book my flight, and that's one of the reasons why we didn't have his service for almost a month later, because I'm like I need to know that he's there first. Yeah, and I have some of them. I carry some of them. It may sound morbid, but I carry some of them with me in my pocketbook.
Speaker 1:Yeah, and they've got it even now where you can put it in pendants for necklaces or charms yep, I have a little guitar necklace and some in there.
Speaker 2:I have some in a bracelet. But my goal and mine and manny's we said when we go to, because we were supposed to go to national parks, that's what he wanted to do so if I get to them, I'm just, I may or may not.
Speaker 2:I don't want to get arrested. Leave some of them behind. Yeah, I did go where he asked me to marry him because it was on a bridge overlooking the water and I let a little vial go there the first anniversary after he passed. Yeah, it's not an easy topic to bring up, especially with your loved one who is, you know, given this diagnosis, but hopefully-.
Speaker 1:I think it depends on how they look at it.
Speaker 2:Yeah Well, they should look at it like you. Look at it, you know, like you don't. That's why we were sharing, like why you did it, and then with me, me, I didn't do it, and how incredibly hard it is to make those decisions oh yeah, do it right afterwards and if you have it all written down. So where are you going to have your service? Is it going to be in? There at the funeral home oh, it's not going to be in oklahoma.
Speaker 1:No, okay, I'm just curious yeah, it's going to be here in Caney.
Speaker 2:Okay, and does Linda have a cemetery plot yet?
Speaker 1:No, we still have to do that.
Speaker 2:You think you're going to get it. Yeah, caney, yeah, yeah, yeah yeah.
Speaker 1:I'm glad you mentioned that, because I'd forgotten and that slipped my mind, about needing a cemetery plot for her.
Speaker 2:Now did they? When you went in there, did they give you a checklist of things that they wanted to talk about? Yeah, okay, yeah. Maybe if you have that, if you can send a picture of it, or maybe I can call the cemetery guy and ask him if he wants to come on a podcast and talk about it.
Speaker 1:Yeah, and also lobby dang, I know you had it, it went right out.
Speaker 2:I saw it in your eyes. Yeah, it just went out.
Speaker 1:I lost my train of thought.
Speaker 2:That's all right, you'll catch it. We were talking about the cemetery guy, me maybe asking him to come on and share. It'll come back to you.
Speaker 1:Yeah, it will it always does.
Speaker 2:I can see why Curry was like we really need to do an episode and talk about this so I can share yeah, there's so much to it.
Speaker 1:It took about two hours for each one of us to plan each one out. Yeah, two hours for mine and about two hours for Linda's.
Speaker 2:Yeah, I remember when Jim's mom died, we were like we need to get our wills and we started it twice because the kids were younger. And then they're like, well, who will take the kids if you die? And after that person, who do you want? And after that person, who do you want? We were like, wow, yeah. And after that person, who do you want? And after that person, who do you want? We were like, wow, yeah, you get overwhelmed. So you did both in one sitting, four hours long. Wow, no wonder why you've been pooped out. Yeah.
Speaker 1:Yeah, I mean it's. It was quite an ordeal, like I said, but I'm so relieved I've gotten it done.
Speaker 2:Yeah, maybe if you're listening and you're thinking about doing it, have them split it into two sessions.
Speaker 1:Definitely.
Speaker 2:You know, I would say I would recommend to do the spouse without Louie first.
Speaker 1:Mm-hmm.
Speaker 2:You know what I mean. So the person with Louie can see what. So that gives you time to think about things a little more. Yeah, because you have to. No, go ahead, go ahead.
Speaker 1:You choose the music they're going to play and all that, yeah, and that's something we we hadn't thought of, but we had to sit there and think about for a while?
Speaker 2:yeah so, but they did. When you went in for the free dinner, free barbecue did they give you a checklist then of things they're going to talk about?
Speaker 1:they probably no they gave us a a folder with papers in it that tells all that yeah, yeah, yeah, yeah they let you plan it.
Speaker 2:Yeah, I think we just tapped into something we probably should do to have somebody from a oh, definitely. A funeral home, not a cemetery.
Speaker 1:We're all going to have to deal with it, or our loved ones will.
Speaker 2:Yeah, and it's just, it isn't easy, even if you're not sick, to think of your mortality, you know. But I'm going to say again and again, and again not doing it before your loved one passes. It's so much harder on the person left behind.
Speaker 1:Mm-hmm.
Speaker 2:Because, well, you know, and you all listen to me, I don't even remember doing the podcast a week or so after he passed. I have no idea what I said, but yeah, it's like I said I would not. I don't know what would have happened if I didn't have my daughter-in-law helping me.
Speaker 1:Yeah, that's kind of with us, because there were decisions that our daughter and our granddaughter helped us make that we really struggled with.
Speaker 2:Right, yeah, yeah, and having them there with us really helped.
Speaker 2:Yeah, when we get done, send me the name of the cemetery and the guy. I might give him a call Because I think it would be great to have that list posted. We could post things that you talked about so people can take that list and jot everything down and then go to the cemetery I mean, go to the funeral home and already have all that, instead of, like you did, johnny, on the spot trying to think of things which I'm sure, if you think of something now that you want to change, you'd be able to change it.
Speaker 1:Oh, yeah, I can make changes.
Speaker 2:Yeah, yeah, well, that's good you did that.
Speaker 1:I can't stress enough how important it is to go ahead and get it done.
Speaker 2:Yep.
Speaker 1:Yep, no one wants to do it, but it's a fact that you're going to have to do it now or leave it to your loved ones later.
Speaker 2:Yeah, and it's good for your kids or your loved ones to know where your insurance policies are from, because I remember I think Jim was covered under my teacher's pension Because he officially I told you he officially got severed from work only four months before he passed and he had a $500,000 policy.
Speaker 1:Yeah.
Speaker 2:But neither of us knew when he officially stopped working at the company that it was going to go away. So thankfully he was covered under my teacher's pension, but my kids asking me where's the insurance policy? I'm, like I just said, go to the filing cabinet and start looking through all the files, because I wasn't in a mental state to even clearly think that one of the most important papers we have in this house is in the safe. You know what I mean. I think that one of the most important papers we have in this house is in the safe. Yeah, you know what I mean. Like that's how jumbled your brain gets with grief is because I was embarrassed when I found it. I'm like, oh my God, of course it would be in the safe and it was in this folded envelope and it was, you know, cemetery plots right on it, yeah, yeah.
Speaker 1:So yeah, that's good. That's what I've got on me is 500,000. And when she asked me how much insurance I had that night, she asked me if I had insurance. I said yeah. She said how much? How much is it? I said 500. And she sat there with this look on her face and my daughter said when you say 500, do you mean 500? I said no, I meant 500, 000. And she said, oh, you'd be surprised. The the lady shirley. She said, oh, you'd be surprised, but we do get people coming in here with just a five thousand dollar.
Speaker 2:Yeah, a 500, 500 policy so let me ask you this you're more we're worth more dead than alive.
Speaker 1:Oh yeah, that's why I sleep with one eye open.
Speaker 2:That's amazing that you've been able to keep that policy like I. When they called me, we were in louisiana four months before he died and told me that, which I I have nothing but praise for his company because they kept him on long-term disability for two and a half years, which was amazing.
Speaker 1:Good.
Speaker 2:But I had to go outside and I had to sit down. When they told me I'm like what do you mean? He doesn't have a policy Because the company paid into it. Also, I remember him paying like $165 every two weeks For 30 years. He paid that Right Because it was attached to company, which is strange because I've retired and he still got covered under mine and they said I could keep it, but it would be like $15,000 a month because it's so high. Yeah, and he would have to go through a physical which they clearly knew he had this disease.
Speaker 2:But, yeah, that was. I clearly didn't tell him either. I didn't even speak of it until after he passed, and then I told the kids what happened. But now the kids know where all my stuff is, like there's a spot and that's where all the important papers are. It should be safe.
Speaker 1:I started off I had $300,000 policy and I tried to get more than that and the insurance company said we can't do that for two years and I said okay and so didn't even think about it. You know, and then something happened to us on the road, I don't remember what, and I decided, told Linda. I said I need to get some more insurance. So I called the insurance company and they put another 500, they put 300,000, I'm sorry, 200, yeah, I had 300 on there and they wrote me a new policy for 500.
Speaker 2:That's amazing.
Speaker 1:I just canceled the 300,000.
Speaker 2:Yeah, but you have the paperwork. Oh, yeah, did the funeral home ask for that paperwork so they can confirm that? Okay, yeah, you better sleep with one eye open. I might come, I know, right, wait, put me on your will first. Yeah, and I might come, I know right, wait, put me on your will first. Yeah, it just, I know why Jim did it. I know why you did it for that amount of money, because he wanted us to be taken care of, and then, when it was not there anymore, that was, yeah, that was a hard one to deal with.
Speaker 1:That's why I say get in there and even if you have to just make small payments, do it. Yeah, and you may not even make payments to the funeral home, just put a little bit aside each month yeah, yeah, or get a problem they'll finance it up to 10 years yeah, but with um life insurance you'd have to get it before you were diagnosed.
Speaker 2:Definitely, you know, because that's anyway.
Speaker 1:That's one thing. We decided that we would hang on.
Speaker 2:Mm-hmm. Well, that's very noble of you that you've done that for her, that you know she's going to be okay. And does she have one on for her?
Speaker 1:Do what now?
Speaker 2:Does she have a life insurance policy for $500,000?
Speaker 1:No.
Speaker 2:So it's okay Sleep with one eye open, but that's the.
Speaker 1:Thing.
Speaker 2:You have to be able to bring humor into it, because if you don't, that's when it can get really overwhelming. You know, I mean when Jim said I can remember. I can distinctly remember him saying okay, you show me all these high-priced caskets. Where's the one for the Jane Doe's?
Speaker 2:I forget how he called it something, and I remember him putting his hand on the small on my back when he said that and was leading me down to the basement where they were. And then, because they knew Jim's parents, so they knew Jim knew that there's this much, much, much cheaper, like 10% of what they want to you know.
Speaker 1:Yeah, caskets are expensive.
Speaker 2:Yeah, and I guess.
Speaker 1:I had thought about getting one from Walmart for Linda, because you'd buy them at Walmart now.
Speaker 2:You cannot, you cannot, you cannot.
Speaker 1:I'm looking it up as you talk. They're online. They're online, but the thing about it is, if something breaks on it or something like that, the funeral home cannot get it fixed, so you're left with a broken casket.
Speaker 2:Oh, my God.
Speaker 1:See, you can get them at Walmart.
Speaker 2:Oh, my God.
Speaker 1:You thought I was joking.
Speaker 2:I did. I thought you were telling a joke. Yeah, oh, my God, you can get pink ones and blue ones for $995. Yeah, they're cheap. $ my God, you can get pink ones and blue ones and, yeah, oh, for $995?.
Speaker 1:Yeah, they're cheap.
Speaker 2:Yeah, but okay.
Speaker 1:A lot cheaper than from a funeral home.
Speaker 2:So, but for $795, you can get unfinished wood pine casket, and that's what we got. That's what we got for his mom.
Speaker 1:Yeah.
Speaker 2:Because we are just going to decay in it. But I get it. I get why some people want to have top of the line and if they're so blessed to be able to afford that, that's to each his own.
Speaker 1:I see Linda's casket is going to have decorations on each corner and they said, sometimes those will break and if the one from Walmart breaks, you just got to go through the ceremony with a broken casket.
Speaker 2:Oh, I was like yeah, I'm thinking, once it's in the ground, do you care if it breaks, right? But you know that's a sales tactic too. Yeah, put in there, dang. I just had know that's a sales tactic too. Yeah, yeah, put in there, dang. I just had a question that went right in and out too.
Speaker 1:Oh, did you.
Speaker 2:That's right. Did you pick out your gravestones yet?
Speaker 1:No, that we haven't done.
Speaker 2:You know it took me over two years to even walk into a place to do it Right. And it's the same thing. You know you want this. That, like you know, some people put I. You know I put one that that's for me and him. And you see some at cemeteries that have like james c and linda, you know, yeah, and then his birth and death date and then mine's left blank and I'm like I don't know if I can go to a cemetery and see my name. I'm like just leave that side. I mean I put an apple on a book because I was a teacher, and a guitar and a Harley on his side, but that was. You know, it took me two years and the minute I walked into the door I just broke two years and I, the minute I walked into the door, I just broke, and I guess they're used to that see, I'm named after my grandpa and so every time I go to the cemetery I see my name, but it doesn't bother me.
Speaker 1:Some of the relatives ask me if it bothers me.
Speaker 2:No, it doesn't bother me well, because you know it's your grandfather. Yeah, so that's good. Well, I hope you all listen. Yeah, well, because you know it's your grandfather. Yeah, yeah, so that's good. Well, I hope you all listen and think about what we just shared.
Speaker 1:And if you haven't done it, there's so much more than even what we talked about today. There's so much more that gets taken care of when you're in there, pre-planning Right, and even if you don't have the money, go ahead and pre-plan, because you'll have it all ready and it'll be on record there with the funeral home.
Speaker 2:Yeah, you could sell tickets to admission, tickets to pay for it. Yeah, I'm sorry, I hope you don't all think I'm sounding morbid. I'm just trying to inflict humor into it. Like I said, jim and I did when his mom died, it makes you like, okay, we better do this because we have young kids Because, like you said, we're all going to die eventually.
Speaker 1:Definitely.
Speaker 2:Well, thank you for sharing, and trust me when I tell you no one's going to think you were drunk when they heard you last week.
Speaker 1:I hope not, because it was really disappointing to listen to it.
Speaker 2:To me you sounded tired, but I bet you, andrew, could speed it up and make it not sound like it. You can sound like a chipmunk instead. Right, right, no, curry, you're being real, and that's why we started this podcast podcast to share the ups and the downs. And clearly now you know why. They thought you were drunk probably in that emergency room.
Speaker 1:Oh, yeah, makes sense. Yeah, yeah, all right, buddy. Okay, folks, that's all we have time for this week, remember, you can email us with suggestions on what you'd like us to discuss on a future episode, or you can ask any questions you have, and we'll sure do our best to get you the right answer.
Speaker 2:Yep, and remember, kyrie, my friend, post the links to the podcast and both of our Lewy Body Roller Coaster Facebook page and our Journey with Lewy page and if you're interested in helping us as a volunteer and advocate, please send us your email at louiebodyrollacoster at gmailcom. And honestly, the more people that reach out to us, the more people we can help, because we have several people in our support meetings and on our pages who don't have anybody to advocate for them.
Speaker 1:So think about that, especially if you know someone who's been through the journey and folks, if you want to learn how you can be a supporter of the podcast, just see the episode notes at the bottom. That's where we post the information on that there. Okay, folks? Thanks again for joining us, until next week. This is linda and curry signing off.