Lewy Body Roller Coaster
Lewy Body Roller Coaster
Compulsive Behaviors and New Hallucinations- Part 2
This week we continue part 2 as Curry shares how he is feeling and discussed the new hallucinations he is having and how he is feeling overall including not remembering visitors. We also discuss compulsive behaviors people with LBD may have as this was a big discussion during one of the zoom meetings.
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Welcome back. We're gonna just keep going with our conversation that we were having last week. Oh got you caught up with Curry and a lot of thanks thrown out and a little bit about that impromptu meeting we had in Caney.
SPEAKER_00:I do want to say, I do want to say one more thing real quick. Okay. If you just joined us and this is your first or second time listening or third or fourth, whatever, uh like we said, please go back to the very beginning one. And anytime you have trouble finding the link, it's it's listed under featured, under features in both of our Facebook groups. Uh so you can always find the link there. It's it's at the top of the group under featured.
SPEAKER_01:Yep.
SPEAKER_00:I just looked and it's still on both of them.
SPEAKER_01:So yeah, or just type in Louie Body Roller Coaster Podcast and Yeah, you could come up. Yeah, and I think it'll list. I don't want to touch any buttons, so I would look it up right now. We got it started. I'm not touching anything. It's been a minute since I've used these computers, but anyway. Um, so we wanted to catch you up with how Curry's doing and thank people who helped us get that uh camera person to uh Kaney for the interviews. And um that quick I forgot the third one was it's one of those weekends, Curry. One of those weekends. Um, but anyway, we're gonna move on. And we just thought we would talk about um a topic that came up in one of our Zooms this week, and I posted about it in the roller coaster on the roller coaster page, and we've gotten like um 28 comments already, and I just posted it a day or so ago. Um so I'm just gonna weigh in, I'm gonna read what it is, and then you can weigh in if you want. Um, so one of the topics that we talked about was having I guess you can call it compulsive behaviors. Like someone said, you know, when you go out to eat, and as you're leaving on the counter, they'll have that that little basket of mints for you to take one on your way out. Well, somebody had said, I can't take one, I gotta take like 20, you know, that kind of thing. Um, I feel like the same thing. I'm like, it's free. Nobody's looking. I'll grab a handful. But I totally understand what she gets. Like, that's just one of her behaviors that she has since she's been diagnosed. Um, I don't know whether it was a her or a male that explained that. Um a couple people said they have this feeling that they want to steal, even though they know it's wrong. Which, you know, that's the thing about the meetings. Um, I'm talking to you about a topic, but I would never give names of what you know people talked about or who said what. So we, you know, we keep that uh private, but and everybody in our because there's times the people on our Zoom let us record if we ask if it's if it's a really good topic to hear everybody talking about. But this one seemed to be, you know, you don't know what to ask people or like we don't have any specific agenda when we start each meeting. It's what people feel they want to ask or talk about, whoever's at the meeting. So we don't we don't ever have a you know come in and we we have an agenda what we we want to talk about. I don't even know how we got onto this topic. Um, but somebody had said, um, I think you were the one ordering from Amazon. I'm throwing you under us.
SPEAKER_00:You were the first it was Amazon, then it was Teamu. You know, uh that's one thing uh I talked with other people about. I know I know uh one couple, his wife had to take his credit card away from him, and she created a new account, and she just puts like a hundred dollars in that account each month and lets him order off a new card.
SPEAKER_01:That's a good idea.
SPEAKER_00:But compulsive spending is easy to I I've heard that from uh several other people, and I fell into the same same category as that. Uh compulsive spending can really get out of control.
SPEAKER_01:Now, if do you remember doing it and then what you were thinking when you were doing it?
SPEAKER_00:Well, usually it's it's stuff that I ordered was stuff Linda I that Linda would say, Oh, see it on TV and she'd say, Oh, that's a good idea. So I would order it for her, you know.
unknown:Right.
SPEAKER_00:And she didn't say get me one, she just said she liked it. But but that it was that kind of stuff going on.
SPEAKER_01:Yeah. Well, Amazon's easy to get sucked into, you know. You're on there ordering one thing and it throws like six things that you probably could should have, it says.
SPEAKER_00:Yeah, Timu does the same thing.
SPEAKER_01:Yeah. I uh yeah, I haven't checked out Timu yet, but um, Jim always had to have a water money. We he had a we all had a stop and drop place in the house, you know. We always knew to check, you know, Matt always had a place, and Jim he had a counter with the top drawer was his, so he stopped and put his work badge and his keys and everything there. So in the morning he knew where it was. And when we were getting ready to sell the house, I was, you know, decluttering the drawers, and I opened his drawer and there were like a couple thousand dollars in there. And I'm like, what the what is going on? And I'm like, you know, we have strangers coming through house, we can't have this kind of money, but he it he had to know that he had a big lot of money on him. And there was one time when I flew to Kansas for filming, for doing one of the things for the documentary, and Manny was with Jim, I think for four days, and every day, at least once a day, Manny had to drive Jim to where he could go to an ATM and so he can get a printout how much money we had in the account. Like, you know, his his brain just wanted him to know or wanted him to have money on him at all times. Um so I I just posted out there and I said, So asking here to see how many other people are experiencing these types of behavior, and of course, there's no judgment, you know, it might be another symptom. I know you said it might.
SPEAKER_00:Did you type something that's not a symptom or it's a what I I yeah, I don't think it can be called a symptom, but I think it can be uh it's it's worth talking about so people will be aware that it's something you need to look out for.
SPEAKER_01:Yeah. Yeah, but what would we call it if it wasn't a symptom? A be just a behavior? Behavior is better. Behavior, yeah, behavior is behavior. Yeah. But everybody was, you know, I I love how everybody feels confident enough to post on our Facebook pages and know it's it's they're safe. Well, it's that they're safe, you know, and yeah, that it gets not going out to the whole world. Um again, like we're we're I just shared the things that we talked about, like what your behavior was and what Jim's behavior was, and we're gonna share a couple other people's, but we're never gonna give a name, you know.
SPEAKER_02:Right.
SPEAKER_01:It's it's part of that um being a family, yeah, and talking about it openly without no j no judgment, you know, and that's kind of what I love about our pages because you can talk about anything that you need and feel the need to talk about. And you know, um that somebody uh somebody had said uh that apologizing, like having a conversation with someone and saying I'm sorry all the time. You know, like that's I do that with Linda. Yeah, it's like a repetitive behavior. I guess that's that's what I should have written said a symptom of repetitive behavior. Um, and a lot of people um talked about Amazon and going into other, you know, pages, like you said, Timu, that it, you know, I don't have Louie Biden. I can get there's sometimes I get a package and I'm we were in Zoom yesterday and I'm like, what the heck did I order? This big package came and and I and I could not remember what I ordered, and I was afraid to open it. Because I'm like, sometimes when I can't sleep at night, I heard this sucks you in. It you know, they they they have it built so it sucks you in. Yeah, I can't tell you what it is because they were Christmas presents in case my kids are listening. But I couldn't remember what I just ordered, and I ordered it like three days ago. Um somebody said loved one collects used paper towels and unfolds them meticulously in a pile. And we've seen that done with dementia dementia patients. Um I think it's uh I guess the repetitiveness of it, you know, that you know it's something you you're able to do still and you just want to keep uh doing it.
SPEAKER_00:Um that's kind of like uh I in our move from from Texas up here to Kansas, I have not been able to find a bunch of my tools. Uh I know I had to have left them in Texas, you know. Uh, but it's it was easier for me to go on Amazon or Timu and order replacements, you know, and I got sucked into it that way. I was replacing tools that I haven't been able to find since we since we moved up here. And there was no reason for me to replace them. I can't use them anymore, you know. It's just the idea that I that I should have them.
SPEAKER_01:Right. Yeah, I'm responding to your your thing on Facebook now. Um, not saying it's not a symptom. I said, yeah, a behavior is better. Um yeah. But like I know someone who was buying cars, bought a car, returned it, bought a car, you know, and that kind of thing. And and a lot of times that happens in the beginning when people don't even realize that they have a problem. You know, of course, I'm sure the spouse was like, what's going on? Why are you buying and selling, you know, the same car or or or you know, getting all these deliveries? Um so it's just, you know, one of the behaviors. And I I've read a lot about, I mean, I've seen a lot of videos of people that compile people paper towels or just like seeing them fold it and that type of thing. Um trying to see if there's anything different.
SPEAKER_00:Yeah, it's there Louie Body does uh bring out or can, let me say, Louis Body can bring out uh some strange behaviors, some that you've never never had before.
SPEAKER_01:Yeah, compulsive behavior. Yeah. Um and I say, you know, if it's not causing any harm or you know, I I can see the whole um Jim never ordered on Amazon, so I never had to deal with that. But um I made sure that he knew where there was a lot of money, you know, just for I I guess that was his security.
unknown:Yeah.
SPEAKER_01:But I I guess people can, you know, as long as the the compulsive behavior isn't harming anyone or your bank account or anything like that, like the folding the towels, and might just let them do it, you know. Um, but somebody said it had to have uh um cash on hand. And I totally get that because I'm like that right now. Like I'm I'm so afraid to let my checking account go below a certain number. Just I have this fear, you know, because it's just me now. We went from two income family down to mine. Um but if if you haven't read the post, it's it's on the Facebook page.
SPEAKER_00:I'll I'll put a bump, put out because people Yeah, you need you need to bump those.
SPEAKER_01:Yeah, because people are often offering suggestions on how to how to you know handle all that situation. So if you're a caregiver listening, um you just check under Linda's post. Um, I'll bump it to the top of the page.
SPEAKER_02:Yeah.
SPEAKER_01:Just share what you did to help alleviate that kind of so how did how did your spending stop? Like, did she take away your card? Did she hit you over the head with her flying pan? What'd she do?
SPEAKER_00:All the above.
SPEAKER_01:I didn't know I wasn't expecting that. Yeah. Um, yeah. So but when she did it, did she tell you she was oh yeah. She just said.
SPEAKER_00:I still have I still have them in my wallet, but I don't carry my wallet anywhere.
SPEAKER_01:So and so how did you take it though when she told you that?
SPEAKER_00:Uh I took it all right. I felt guilty, you know, because like I said, those replacing all those tools. Why did I replace them? I can't get out there and use them, you know. Uh so there was no need in me buying them again.
SPEAKER_01:Right. And you probably didn't even know you were doing it. You know what I mean? That you kept doing it.
SPEAKER_00:I know.
SPEAKER_01:Jim, Jim was that way with the I don't want to, I don't know what to call it. It's a screwdriver, like a four-in-one where you can pull out the one in and make it. Every time we went out to Home Depot or Lowe's, he's like, I gotta go get one of those. And I'm like, and I did cut him off at a point because you know, you don't need 30 of those.
SPEAKER_02:Right.
SPEAKER_01:You know, because I thought he felt probably the same reason you felt why you think you thought these needed these tools, because you couldn't find it, so he's gonna order a new one, that kind of thing.
SPEAKER_00:See, it turned out I was uh just for just for an example, uh I ordered a real nice big socket set, you know. Well, it turns out I ordered more than one of them, the exact same. And I didn't remember.
SPEAKER_01:Yeah. Yeah. Well, I I I guess everybody listening, like if you're you're dealing with one of these issues, especially with the financial uh repercussions that somebody, you know, constantly, thankfully you can send most things back, pretty much everything back. But I know that that could be a lot for a caregiver to have to do is um yeah, I guess you get to the point where you just set your person down or and say don't do it, or like you said, give them a limit on their card.
SPEAKER_00:Um and I thought that was a good idea that that the the wife did on that one. Uh I wouldn't have thought of doing that, but uh yeah, she just made him his own account, you know, and gave him his card, and he only had so much in there each month he could spend.
SPEAKER_01:Yep. Yeah, and I guess this goes back to you know, that oh, here you have Louybody, get your affairs in order kind of thing.
SPEAKER_02:Yeah.
SPEAKER_01:You know, in the beginning is um at what point do you like I'm I'm asking you this with somebody with Louie body, um at what point do you think I guess you can still use your accounts and write chats and things, right? I mean if it gets if somebody's not realizing they're using all the money, like what at what point do you Yeah, I'm sure I'm still on there in case something happens to Linda, you know? Yeah, yeah. I guess what I'm I'm trying to ask in a in a I don't even know, a nice way or um it this is such a crazy thing.
SPEAKER_00:Yeah, there's some things I don't want to know about because I have no it's easier for our daughter for Linda to tell and show my our daughter than it is for me to have to worry about or do or yeah, yeah, yeah.
SPEAKER_01:Yeah. So I guess I'm I'm trying to come up with the right words so it doesn't sound so harsh. Because I can only imagine in the beginning when they said get your affairs in order, and we did. We went right to the lawyer like the next day, we had our will going. At what point because when you get past a certain point, you can't have somebody taken off the account if they're not mentally able to. You know what I mean? But at what point I don't know. Do you think that's from from somebody with Louie? Do you think that's something people should do in the beginning?
SPEAKER_00:Is I do.
SPEAKER_01:But then and then make maybe like if I had to do it ever again, I don't know. I don't know how I would handle it because I wouldn't want him to think he'd I was cutting him off from money, you know what I mean?
SPEAKER_00:Yeah, true.
SPEAKER_01:Because in the beginning you grew up.
SPEAKER_00:Yeah, it's it's a hard you never know what's coming down the pike.
SPEAKER_01:Yeah, but if if in the beginning, when you you know we're still driving everything, if Linda said, listen, I'm taking you off the account, even though you're putting the money in there, you can't write a check and you can't withdraw, how would you have to do that?
SPEAKER_00:I don't think it would have bothered me if she I don't think it would have bothered me if she'd come out and said that in the beginning. I really don't.
SPEAKER_01:Yeah.
SPEAKER_00:I think I would have understood it better.
SPEAKER_01:Yeah, I I think if I had to do it over and and I was to do something like that, I would tell Jim, listen, we're gonna do this because we don't know what this disease is gonna do. And Andrew, Andrew would be on the account also in case something happened to me. Do you know what I mean? So that he would feel like, okay, well, he can't. And and if he really wanted something, I mean, he wanted to go on national parks. I bought an RV, you know. It wasn't like I wasn't doing his fulfilling his wishes, you know. He wanted to move to Andrew, so I sold my house and just left, you know. And retrospect, I, you know, not sure that was the smartest thing for me mentally, but that's what he wanted, you know, and he did get to see Andrew in concert. And and my middle son always says, because at the time he was in Pensacola, if he wasn't, if I hadn't moved, all three of my kids wouldn't have been by his bedside. So I try to remember that when I think, why did I sell my house? You know, like this beautiful house Jim built me. But there's a lot of um on this side of it, a lot of guilt of thinking I should have done things. Why didn't I? Why did I? There's a lot of that on this side of it.
SPEAKER_00:Um there's nothing, nothing about this disease, it's normal.
SPEAKER_01:And people keep telling me, you know, you did the best you could under the circumstances. And I'm like, what was my brain thinking when I thought to, you know, and I couldn't tell you. Well, I I know what I was thinking. He said he wanted to move closer to Android. Made happen. You know, it's just we were fortunate enough for me to be able to make that happen. But it's yeah, there's nothing normal, like there's no, you know, scripts to follow that's gonna the disease is gonna do this, this, this, and this. You know, it's it is all over the place. And if two people are the same, which everybody will hear when we get that um the recent filming we did when I interviewed those seven people at Louis Body. But anyway, I guess this is a roundabout way of saying, you know, please join a support group. It doesn't have to be ours, you know. Somebody posts every day, which you know, what what group is up? Because we have Monday, Friday, or for anybody with Louis um andor caregivers, medical medical professionals can join them all. That would be nice. Um, we have one for um two now for caregivers, and then Thursday is one just for Louis, Louis body people.
SPEAKER_00:Um yeah, the two for caregivers is one Saturday and one Monday.
SPEAKER_01:Mm-hmm. One is like one, three o'clock, and then I think the Monday is at seven o'clock at night Eastern time, you know, for the people who may still be working. And so we're trying to do our best, you know, to have things for people. And I know we haven't been as uh consistent with the podcast, so we really do appreciate that everybody, you know, when one comes up, I think there's a way that people can set their set something that they'll be notified as soon as the podcast goes live. I probably should check into that too. We need it, anybody out there listening and they're really good at tech, please send us a message. You can send me a message and messenger and then I could call you. Um, yeah, those kind of things. Um, because it is it is hard for me sometimes. Like, what did you text? You texted me something really sweet today, and I'm gonna try not to cry because I get these messages with Curry, and we talked about this last time. Um, about I know when he's struggling, I feel the need to protect you and not try to record an episode knowing you're struggling. You know? So, you know, I try to walk that that fine line. Um, and I think you or your wife said, well, do it because people need to see what you're like at, you know, at all times. And I'm like, okay.
SPEAKER_00:Yeah, that's what Linda says.
SPEAKER_01:Yeah. And you'll attest to the fact that if there's a topic that comes up during the Monday, Friday Zoom meetings that I know is gonna trigger me, I'll just disappear off out because it there's at least two people, sometimes three, that are so-called co-hosts of the meeting. So I know, and it I don't have to say, hey, listen, I'm being triggered, I'm gonna leave. In our meetings, you can come and go as you want, you don't have to tell anybody you're leaving. Get up and go. So, you know, sometimes there are topics that you all need to talk about that I know is gonna throw me down the grief hole, and I just walk away. And, you know, that's the beauty of our group, I think, because nobody, you know, I'm not getting a thousand messages or UK, you know, or if somebody leaves abruptly, like sometimes they just have to go for a doctor's appointment. It's just, you know, they're they're tired. Or so you can come and go into meetings, but it's just so important to connect with other people with the disease and other caregivers of people with the disease. Um, and I say kudos to COVID, because I think this became more normalized. You know, Zoom meetings and meeting online.
SPEAKER_00:Um because I think it's for COVID.
SPEAKER_01:Uh yeah, we know who this I don't think we would have started the the group, the Zoom groups or the podcast or you know, yeah, I agree. Yeah. Um podcast, I think, because we I was still researching that while I was still teaching, but you know, I do think um doctors' meetings being virtual now has helped people be more comfortable going online. So that was our roundabout way of saying please try to join one of our meetings. Um they're all list they are listed under that featured. Is that what it's called? Featured now. Used to be something.
SPEAKER_02:Yeah, featured.
SPEAKER_01:Yeah, under featured and it lists all the the times that we have our meetings. Um yeah, you're you're not gonna regret it because you're gonna meet somebody that has symptoms like you have or a caregiver going through the same thing. And it really is, I don't know if I would have made it without the support groups.
SPEAKER_00:Um I know, I know what you mean. I don't know where I'd be without it. Uh I I still ever I walk away from every Zoom meeting uh where I've learned something that I didn't know before.
SPEAKER_01:Yeah.
SPEAKER_00:And it may be small things or it may be big things. Right. Uh but I I can all honestly say I'll I always learn something.
SPEAKER_01:And it's because somebody will say, hey, this this just happened the other day. And then there are usually several that they've experienced that before. And okay, well, what what do you do to deal with that? And then that's that's kind of because you're just trying to even just there's tons, you know, there's not tons, but there's research on Louie Body, but it's nothing like hearing it from somebody else who's experiencing the same thing and how they're and how they're coping. Um so anyway, this episode will be out soon, hopefully, because I don't know if you told told you Andrew bought a house while he's trying to sell a house. He broke he bought a house, he bought a house and knocked all the walls out in the middle. It's like construction zone.
SPEAKER_02:So I'll send them cool.
SPEAKER_01:I'll send them a message later today, and hopefully he'll be able to um yeah, it's it is very cool. I'm excited for them. It's just, you know, I gotta say, knock knock an hour out. I need you to to go.
SPEAKER_00:Did he buy it down there in in New Orleans? Yeah. Or are they moving?
SPEAKER_01:Well, he he lives on the outskirts of the city of New Orleans in Mettery, but they're not gonna have kids, and they're real big in the Mardi Girl parade and stuff, so they bought a house in the city of New Orleans. So they're very, very happy. They're just they just have to redo the whole thing. But anyway, um, thank you again for everybody uh for listening. And just a reminder, we are not giving medical advice. Um we're just sharing our open and honest feelings and thoughts as we live with those people with Louis body and the caregivers that um live with Louis body dementia.
SPEAKER_00:So all right, 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 help get you the right answer.
SPEAKER_01:And remember that we post the links to the podcast in both the Louis Body Roller Coaster Facebook page and our Our Journey page, as well as uh under features, what we were just talking about, or it always has the link to the Zoom and uh for the Zoom meetings. But if you are interested in helping us volunteer and advocate, or you know technology, please reach out at LouieBodyrollercoaster gmail.com, or you can send me a message through Messenger with your number and we can connect that way. Um more people who reach out, yeah, and the more hey, I'm not done talking. The more people reach out, the more people reach out, the more people we can help. No worries.
SPEAKER_00:Below the link, and we that's where we post the information on supporters.
SPEAKER_01:Um I think it's under folks. It's under feature too. He if I was next to you right now, you were looking down as I tried to talk. It's under the feature too, I think those those links.
SPEAKER_00:Yeah, it is.
SPEAKER_01:But anyway, until next week, this is Linda and Curry signing off.