Transcript
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I'm so afraid that I will have lost my own identity.
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Because I lost this poll last year of starting dialysis and everything. I started going through my own thing. Who am I?
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How am I? I stopped coloring my hair. And
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I went it looks great.
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Thank you.
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Hello and welcome to dementia discussions, the podcast for and about caregivers. If you'd like to share your caregiving story with me, I'd love to hear it. Please call me at 310-362-8232 or email me at dementia discussions.net.
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Today, my guest on the show is a member of my dementia with Lewy body support group which I facilitate through the UCLA Mary s. Easton center. Melanie Turner. Melanie's been in the group for several years.
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Melanie, welcome to the show.
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It's great to have you here.
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Thank you, Barbara.
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It's nice to be here.
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I've never met your husband and I know that's here caring for Monday. Tell us a little bit about Monty.
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Okay, well, we have been married for about 17 and a half years been together for about 20 years. She was a composer a musician. He worked for LAUSD as a vocal music instructor itinerate for 32 years. And he was also first the Cantor and then he became a rabbi and was a rabbi at the synagogue, Macomb or Shalom for many, many, many years. He was diagnosed in 2019 with multiple system atrophy, which is also known as MSA because multiple system atrophy see it comes in two different it's either multiple system atrophy C which is cerebellum, or multiple system atrophy p, which is Parkinsonian symptoms. So even though my husband has was diagnosed with MSA, C, he also has the Parkinsonian symptoms as well. It's not fun. When was he diagnostic. He was diagnosed in 2019, November of 2019. With MSA, he has other metabolic issues as well. So I'm also caring for him because he has and we'll go back to msa in a minute. Kids years optic atrophy, which means he's legally blind. It's a congenital disease. So he's had it all his life is vision just got progressively worse and worse and worse. So he hasn't been driving for about 30 years.
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Okay. He also has type one diabetes, which he was diagnosed with that when he was 27. He has two stents in his heart. He has a suprapubic catheter that he's had for almost 19 years now.
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It's been a long time he got it the year before we actually got married, believe it or not, are you kidding me? No, he has mild to moderate dementia was diagnosed with mild to moderate dementia. He has incontinence issues.
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And the dementia was diagnosed one
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like about maybe a year ish after, although I can tell that he was having cognitive issues before his diagnosis. Oh, before the dementia diagnosis before they MSA diagnosed and for the NSA diagnosed, but we didn't because he was always forgetful. It just wasn't put into real perspective. He also was pretty much diagnosed with depression. He was very depressed. And he is also in stage five kidney failure and he's on dialysis.
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My goodness, Melanie, he gets a lot it gets
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it's a lot. I'm going to describe what MSA C is for you guys multiple system atrophy, as you can tell, multiple systems failed cerebellum C, which is what my husband has, you can actually see an atrophy of the brain on a scans the movement neurologist to diagnose him. And we were referred to her because a neurologist from a time when he was in a hospital with his chronic UTIs that I forgot to mention. That's what she thought and she said I think you should see my colleague who was and we were trying to get in to see a movement specialist. And this was just made it quicker going to see her colleague, so definitely diagnosed actually, I think definitely but you can't diagnose MSA fully until after somebody has passed away. And if they donate their brain and they can they look at the brain. So that's what you think it is. He has symptoms. So a lot of the symptoms of MSA see is dystonia.
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Right there. head is down and gets hard to lift up your head.
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And it gets progressively worse.
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Also, you start, you don't, they don't stay on straight, they start bending over and over and over and over until they can't walk anymore. And then they have to be put into a wheelchair. And then from wheelchair, they get bed bound. And then for bed bound, that's where they are until they pass away. Some people with MSA also start getting respiratory, like they can't swallow, it's hard to swallow. And it goes down the wrong pipe. And then they get all this limb in there. So a lot of people who have multiple system atrophy see and maybe even P passed away from that. In the middle of the night. There's something called Sudden Death, where they can just pass away.
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If you have MSA P you have the Parkinsonian, which my husband also has, he shakes really bad when he's standing up when he go for a walk or something with a walker, which he rollator which he uses now because he there's no way he can walk without the rollator. And it's Parkinsonian symptoms. So that's pretty much where I am. It's a neurodegenerative disease MSA.
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At the moment there is just there's no cure, they give you seven to 10 years from diagnosis is usual amount. My husband has been fairly stable with his MSA.
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And when he went on dialysis, I think it even stabilized a little bit more.
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How old is your husband,
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he is 69 and is currently 6989. He was still working when he was diagnosed.
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But he retired almost immediately. He was diagnosed right before the pandemic. And then during the pandemic. He was hospitalized multiple times for UTIs. And he would get worse.
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And then he'd have to go into a nursing home because until he could walk again, I could not care for him because we have 16 stairs in our house, the bedrooms, the bath, it's all upstairs. The pandemic I was alone a lot because he was in either the hospital or in nursing homes and Tennessee.
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So this complicates things more than dementia is complicated enough, right?
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It is an his dementia.
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It's more short term memory.
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Sometimes he can't remember who people are, but only if they're people that he hasn't really seen in a very long time. But it's more the repetitive. What are we having for dinner? What are we having for lunch? What are we having for breakfast?
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I'll give him insulin. I'll tell him okay, I'm giving you five units of insulin right now. All right. And then a minute later, after I've given him a shot, he'll say, did you give me insulin? How many units did you give me? It's more, that kind of thing. I can't say he loses things anymore, because there's nothing for him to lose. I I keep everything pretty much for him. Me can't really do that much anymore. Anyway, I mean, he can walk he can move he can do.
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He's funny. He still has, you know, awareness. I don't think he thinks he has dementia at all.
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He doesn't have the insight at this point.
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Did he ever have the insight? He's always forgotten his keys. He's following his because of his eyesight. We're always looking for it because he would never put it in the same spot. I see. We're always looking for things. Gosh,
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so where are you at first confused? Like, is this just him his kind of absent minded this? Or is this real? Or
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did it started to sort of affect his work? His employers were attempting to fire him. And not from really this because nobody really knew there was anything wrong. I mean, he would fall down at work and stuff, but the memory he would do like lesson plans and I was noticing that he seemed to be doing the same lessons over and over again. So he he couldn't seem to be able to memorize. Like if I drew up a lesson plan for him was sitting I'd say okay, you're gonna do this, this this. He couldn't remember what it was. He used to be able to read with a magnifier, like he had a jewelers name. But he he started not to be able to read as well.
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And, and now I know that I guess, jumbling kind of jumbles up in your mind. So
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he wasn't aware that he was having trouble at work, but they were aware.
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I'm not quite sure they were trying to get him like he would at work. He would sit like this and he will he put his head down and his eyes closed between classes. He wasn't asleep, but because they knew he was legally blind. He had an A Aiden, he was hired legally blind, they knew it. They would say he was sleeping, but he wasn't sleeping. So if you talk to him, his eyes would open up and he would answer you. He's aware that he can't do as much as he used to. And sometimes he gets mad at himself now that he should be able to do things that he that he can't do now. So he is aware of that. And it's frustrating for him. Like, what sorts of things does he get frustrated about? Well, like, if he can't read trying to put on a, like a jacket, he can't get his arms in the sleeves, he can't get his arms and the sleeves, he can't figure out how to get his arms in the sleeves, then he gets angry, I'll sit near you to relax your arm and let me help you. He doesn't really want me to help him because he knows he should be able to do this by himself. But I think
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that's because he can't see it. Because he can't, I mentioned, understand it more,
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it's a visual thing.
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There are some things that you can't do. Like when he he eats mainly with his hands, which is kind of okay, when we're here in the house. But when we go out to dinner with other people or at a restaurant, it's hard, he will try then not to and eat to try and eat with the fork. But he doesn't really like me to feed him because he can still kind of beat himself. But he will let me like it by saying we're at the end, and I'll save you please let me help you with the rest of it. Or he's having a yogurt. And I'll say I need to get all the rest of it out for you. Because I gave you insulin for this yogurt, you have to eat all of it. But
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it help to eat with like a weighted spoon. Do you think or it doesn't help?
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It?
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Doesn't. He feel spirit? And sorry, is that hard?
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So that's limiting for you. You can't really go out to dinner with him and friends. You do it anyway.
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We do it with friends.
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We do it with family, because they all know. And nobody says anything. And then I'm always up there wiping his hands with the napkins and all of that kind of stuff really
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order like a hamburger that he can pick up or what will he order? It
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depends on where we are. So sometimes it's things that he can pick up any sometimes it is it like if it's pasta. Yeah. How does he do that? With his hands, for the most part, because he can't pick it up. So eating is problematic, and everybody is really good.
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And we're at the point where when we go out, I put a bib on him. I bought these really big bibs that look like he's in a tuxedo. He's at the point now I put a bib on him. He doesn't stop me at all. I just say we need to keep your clothes clean.
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And he lets me put a bid on him.
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It doesn't matter if we're at a restaurant or not. He's got a big barn. If we go out to friends homes and eat, I put a bib on him. They just say, Oh, you look great, not knowing. And that's it. And he lets me because he's at that point where he's just letting me because he doesn't care anymore. He would never have been caught dead in one before.
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So was it a big blow when he lost his job?
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You know, we were I was hoping he could hang on for a couple more years. But even I was at the point where I was like, there's just no way he just could not. And he couldn't teach on Zoom because he can't see zoom. He even if he could have stayed on during the pandemic to teach it would he couldn't have done it. And so it was at the Perfect Point. It was the perfect stopping point for him because he just couldn't do it. And it's been almost three years in June. It'll be three years that he's been now for four years. It'll be it was four years since he's been retired.
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Is that a big change for you?
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Well, he's home. And the only way I can work now, which I still do, is to work from home.
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Because while he even though he has all of these issues, I still can leave him alone for a shorter amount of time, even though I'm his sole caregiver.
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So I can go to the market, I can be gone for about an hour and a half, two hours. And he's usually he's usually fine. I sometimes try and go when my son My son looks at me. So if he's here and I go, that's fine. But even if he's not, when I'm in that area, he has his phone if he needs me could call me. And that could come right back. If I'm not in the area, I have to bring him in. And I feel bad for him. Because when he retired to us to say oh, I'll be doing more Rabbi things or we can have a website and I'll do more lifecycle events. And that's just gone. That that went the way up. He can't do that. It's like playing the piano for him now is really hard. He hasn't picked up a guitar and years cups like three years at least he used to play the guitar there in the garage. Wow. So he played piano guitar. Well, the he's been composing on pretty much all of his life. I mean, he wanted to be a rock star. He went. Yeah, when he was younger, wrote his own music wrote music for the synagogue that we go to songs are still sung But it's he can't do
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that. And do you think that's part of his depression? Well, you don't want
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he's not really depressed anymore. No, we had them go to US psychiatrist to get on the correct medications because during working when he was working, he will key was depressed, depressed. He used to say to me like that Old Man River Song. I'm tired of living but scared of dying. And we've got him on the correct combination of medication now.
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And he he's not depressed anymore. He doesn't say he infected does not want to die at all. Not that he did then either. But he's, he seems to be pretty happy with his life. As long as he's with me. Like right now he's listening to the Dodger game. He loves the Dodgers. So I mean, he's pretty much he just listens to the television Law and Order on over and over again, all the variations. He loves that criminal minds. But he doesn't like going out that much anymore.
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So that's interesting. He listens to the TV, he can actually see it or he can't see or not see the TV. So he remembers what's happening.
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He can understand what's happening just by listening.
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Maybe. I know he doesn't remember it. Because he can watch the same episode. If it comes, if it repeats, he wouldn't remember it. He
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walked in and said, Hey, what's the score of the game? What he would tell me?
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Oh, he would?
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You would know it.
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Okay. All right. So at the moment he can remember. Yeah, and for some reason with the doctors he's really good with his memory is is really pretty good. But other other things.
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Lots of books, some movie plots, he remembers. But it really it all. It all depends. He remembers songs. He sings. I mean, we have the set. And we have a lot of conversations looped.
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Yes. Tell us about we were talking about that in group and we were all chuckling tell us about that.
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So it's it's like I'm really lucky because he'll tell me he loves me a lot all the time and appreciates me and she says I love you and I say I love you and in then he'll start singing like the Partridge Family Song. I think guy love you. And then we talked about the song. Do you know? Okay, now question eight. Do you know who sang that song? And then I have to sometimes sometimes I'm really good. And I will pretend like I don't know. And I will let him answer it. Sometimes.
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I'm just, yeah, it's Partridge Family. Yeah, I know. That was David Cassidy. Yeah, yeah. No, he's not alive anymore. We have all these conversations. So did he die? Yeah. Yeah, he did. Why do you die? You know, and then we so we do the green acre song along? Because he'll say you are my wife. And I'm supposed to say goodbyes to the light. And then you'll continue with the end of the line. Or if I say, Oh, you're my best friend. And then we did The Courtship of Eddie's father be blue. Let me tag right. So have these lengthy conversations sometimes like that? Yeah. And he does them over and over and over again.
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And he doesn't remember that.
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We've done them over and over and over again, if he does it, he has no inkling we could do it every single day. He doesn't remember, multiple times a day, multiple times. He does remember jokes. He's told me multiple times. Sometimes I'll wait for the punch line. Sometimes I'll say, oh, but it depends on my mood. Patients I am within a
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day exactly if you're short with it or not. If you're tired. Yeah, everyone can relate to that. Right? The short term memory loss, the repeated stories, the repeated songs or repeated questions.
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And sometimes I'm really good. And sometimes like I caught myself the other day, or even maybe even today. I told you, and then I put my hand in my mouth. No, I know. You don't remember that. I brought this. I know you don't. But it's my own frustration coming out. It's not. It's not him, because he can't help that. And I know he can't help it. Everything
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together forms who he is, it's hard to know which part is the hardest for you. Is it the stooped head, which makes it probably like hard to eat? Is it the unable to use the utensils? Is it the dementia, the memory is that the incontinence? Is it the dialysis? You know, there's
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so many issues so many?
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It's actually it just depends on what it is. Some days, we go fine, and we and everything is falling great. And some days he's incontinent, and then I have to worry about that. Can you make it to the bathroom? Can you not make it to the bathroom?
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It's just a multitude of things that I have to try on a daily basis. I actually I just try to take everything like one day at a time. Because that's really all I can do. I can make some plans for future things. But plans are relative because they can they can go up in the air sounds and I talk about that because you you do have a plan coming up for a trip. I do I'm going to see My daughter across the country, and for the first time, I'm going to have to hire caregivers. And I'm finding that process pretty daunting. Just calling the agencies, I found one that I, I, I just because I've talked to them a couple of times, and they're going to work with me. And I don't want to spend any of my other time, I got very frustrated calling some of those other agencies and I thought, this is like a one time thing for right now. Because even though it's hard for me to do it all I can, in a Intel, I can't, this is how it's going to be because it's a financial, we're not. It's vital issue, too. So I don't have any like one thing, I do manage everything. So I assist it with everything, the meal prep the medications, the diabetes management, I change his catheter. So we change it once a month, and I do it is to help me a little bit. But now I she doesn't, I just do everything. I shave and Shower him. I make all the doctor's appointments, I have to get him there. I walk with him, I guide the role later, when we go out for a walk. Today wasn't a very good day for a walk. But he made it through it almost did a good job. And then we came in, the doctors had told me that they pretty much think that on the person that's keeping him alive.
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I don't imagine that's true. Because Because if he were in a facility, yeah, how would he get all this attention, he couldn't eat. And they
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wouldn't be able to manage his diabetes, because she did it before I took over. And he was out of control for years and years and years. And now he's in control. And yeah, so I'm, as I said, I'm worried about my upcoming trip. Because thank God, my son is here. So he'll be able to take him to and from dialysis. But you know, nobody wants to deal with my husband's incontinence issues.
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My son, who's his step father doesn't, I said, that's fine, I'm gonna hire somebody to come and just in case, he needs to use the commode upstairs, or he has a problem, somebody else is just going to be dealing with that, I'm probably going to have to prepare all the meals before we go so that I know how much insulin and I can write it all down on sticky notes. And so it's going to be a lot of prep work. And I'm trying to figure out now already, what meals I shouldn't make for him. Dinner mainly lunches easy.
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Well, the agency usually can send someone who has worked with sliding scale.
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Insulin,
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well, the drums on the care, the it depends on who I get here. I'm gonna have to wait
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and see for that people tell them that he's insulin dependent diabetic. They know. The
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company already knows.
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And we've already had this discussion. It's just getting the right person in here to help. But he told me not to call back till May 1 and I leave on the seventh team that go Yeah,
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that's plenty of time for an agency. That's, that's a long time for an agency. And that's
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what they said. So I'm not I'm trying. I am trying not to worry about it too much.
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Well, like what's the worst thing that can happen? He ends up in the hospital, and then he's in the hospital. And they probably know him already. Is he's been at the hospital so many times. His doctors very good and knows how to. Yeah,
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I mean, your worst case scenario might be the best thing actually. Because then there'll be 24 hour nursing care for him. So that might not be actually the worst thing, right?
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It might not be we'll see what happens. It's not you know, it's yeah, I'm already on meds for that. So you're
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on meds for I O.
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That's what I was. So let's transition to you. Honestly, I don't know how you keep it all together. I don't think anyone I think we're all amazed by you and group. Yet
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do what you have to do is is what I say. And I'm really glad I'm in group. I'm in more than one group. Because I find that these support groups, to me, are a lifesaver. They're a real lifesaver for me. I've gotten such good advice from everybody who's gone through this longer than I have. And I love this Lewy Body group because it's since symptoms are kind of the same. You guys get the medical aspect of it. It's hard. When I was dating my husband, and I knew he had diabetes. I used to work in retail and one of my customers said to me, maybe you want to rethink this, maybe you don't want to be going out with somebody who you already know, is ill and she said I know because I am a caregiver for my husband. And it is really hard and it's not but I love him how how do you tell somebody I love you but no nevermind, because I I mean he wasn't as bad as he is but for myself
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and diabetes along if managed. Can can be okay. A lot of younger people have diabetes. For me,
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I'm exhausted all the time. I really am. I take naps whenever I can. I told my husband, I'm going to take a nap. Now he goes, naps are good.
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You take a nap, you need what you deserve a nap. I feel like and he's so sweet. Like the like, the naps are we are claiming my life. Because for me, like I'm an artist, and I love to paint, but I can't get myself, I have five different price start projects, and I can't finish them. I have no energy to be creative. It's like all that creative energy that I had now, I put into care for my husband. So there's nothing much left. Really. For me. I still do things that I enjoy. I read all the time. So I'm an avid reader, I go through books like crazy, because usually when we're eating, I'm reading because we're not in a conversation. So I read a book, you know, I still enjoy myself reading, I still go out, I go shopping, I go to the theater, I have to bring my husband with me now. So I try and choose musicals, that I know that he will enjoy the music.
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And then we can't see what we're going to see. But that's okay.
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He's alright with it. But so I still I still make time I still do things. But I just don't feel like I have my own life. And it doesn't sound like you do to get resent that it's not really resentful right now. It's more sad. I have these grazing travelline. They're doing all of these things. I have multiple friends who are just traveling all over the place. And even if I did travel with my husband, I don't want to go with just him.
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Because of a be bored. I'll be by myself, even though I'm with him, I'll be by myself. And if he can't communicate with you, well, he can communicate with me. But there's nothing really much that really wants to do.
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And
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so like he can see sights and talk to you about me.
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Exactly. He can't. So the vision part of it gets really, really tough because he also limits and the fact that he really doesn't want to do anything I can't say to him.
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What do you want to do today, honey? Nothing? Not much. And you'll say to me, Do I have anything today? And if I say no, like if there's nothing? He'll go, Oh, good. Because that means he doesn't have to. I mean, we get him up, he gets dressed every day. He's not lying around in pajamas. We get dressed because of me. Can we go out? We go out for a walk. Sounds like
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it's stressful for him to get up and out.
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I don't know, sometimes he likes to go out, I really don't know, it's hard to know,
00:27:38.849 --> 00:27:42.690
he has a sense of relief staying home. So you wonder, well, then I don't have
00:27:42.690 --> 00:28:24.029
to change his catheter bag to a leg bag. He doesn't want to do physical therapy. He doesn't like going there. I can get him to go. And once he's there he'll go. But he doesn't see. See that it's doing him any good. The good thing though, with my husband is that he's pretty funny guy. So we get to laugh a lot. As long as we can laugh about everything. It's really good. And as long as see like when we first got the commode she refused to use it, refused to use it. He doesn't like to go to physical therapy because he doesn't help go and he'll do it. But he doesn't see a need for it is helping well, they cut them down to once every three weeks. So I don't know.
00:28:24.240 --> 00:28:45.119
But it is because that way if something slips, they can reassess them in a bit. But we found a really good tool to help his Estonia so when he's on diet on dialysis, I put up a new window which cut like a neck brace. Find him to keep up, keep his head up. And so that's actually helped. I think, with his dystonia. Would that
00:28:45.119 --> 00:28:49.109
help while he's eating? Like would that help keep it on him all the time. He
00:28:49.109 --> 00:28:55.349
can still his dystonia isn't bad enough yet, where he can't actually lift up his head.
00:28:52.319 --> 00:29:01.079
There are people who have that he's not there yet. And I'm hoping knock on wood that he doesn't get there. Because you never know. You never know.
00:29:01.410 --> 00:29:05.099
But I wear that brace more often like so that he could be
00:29:05.970 --> 00:29:08.519
bothered him with it.
00:29:05.970 --> 00:29:19.829
He wears it for like about 10 and a half hours a week. So it's still a good enough time because that. Yeah, so I can't remember what the other question was that we just talked about. So we're talking about
00:29:19.829 --> 00:29:25.380
you and how do you stay sane, basically. Well,
00:29:25.380 --> 00:30:18.299
I stay sane. As I said, I have naps. I live in the moment. I try to go outside. I like to go outside I walk my dog. I get to cuddle with my dog and grateful I'm really I have gratitude. I'm not a journal writing person. I don't like to write things down. But I will say things that I'm grateful for out loud sometimes before in bed. I tried to live in the moment I try to laugh as much as I possibly can to try and see the humor in it. So sometimes my husband and I have a laugh about something when we first got the commode or my husband he refuse to use it. He just refused. I can make it to the bathroom, I can make it to the bathroom, I can make it to the bed. Now he sits there and says to me, is it open? commode open says he said, I'm so glad this is here. And that's just upstairs in our bedroom. It's right by the bed.
00:30:14.700 --> 00:30:58.980
So if he has to go kinco I try and do things to make my life easier. Last year I read put in an acorn. stairlift so that I don't have to walk him up and down the stairs, go with him to fall down the stairs. We do that home improvements to help I try and let him do as much as possible. But I've had to take things away like he wanted. He always wants to take his dishes to the sink. First I said to him, No, you can't. Only when we're using plastic, but even then he would drop it and then my dog would run and go get things and my dog is an alpha and he likes to you can't get things away from him. Once he had that. I just said I can't just have to make my life easier because it's hard because I'm always on call. I'm on call 24/7.
00:30:59.309 --> 00:31:06.839
I'm not sure it makes him feel better when he can do things like that. I'm sure it makes him feel like he has a sense of purpose. He's helpful. Yeah.
00:31:07.109 --> 00:31:24.450
And I totally understand it. And I understand when he gets frustrated. And sometimes he yells at me. I'm not saying it's all hunky dory, he yells at me and I yell right back at him. I say you stop yelling at me because I'm the one that's taking care of you.
00:31:21.119 --> 00:31:39.599
Sometimes if I'm at my wit's end, I'll say I'm gonna put you in a home if you don't stop this, because I can't, I can't do this. And he'll think about it, he'll usually apologizes to me. And a lot of times he does actually have the wherewithal to say, I'm really mad at myself.
00:31:40.200 --> 00:32:00.660
I'm really not taking it out on you. I'm just I'm angry because I'm angry at myself. I can't do this. I shouldn't be able to do this. I can't do it. But it has to be so hard. Some of these things are simple, simple things that he can't do. Exactly. Thank goodness. He's appreciative of you. That must make it easier.
00:32:00.660 --> 00:32:06.660
But like he talked about at the beginning, I'm sure there are moments when he's angry. Yeah.
00:32:03.599 --> 00:32:29.819
And he lashes out at you. But it sounds like for the most part, he's pretty appreciative. He is He says, Thank you a lot, a lot, a lot, a lot. And he tells me he loves me a lot, which is really nice. And we, we hug and we kiss we hold hands and we can and it's nice. It's not where I thought I was going to be at this point in my in my life.
00:32:30.029 --> 00:32:50.819
Yeah, I'm sure you thought you'd be rich. Well, how old are you? You look so young. 64, you are young 64. So maybe you're looking at another year or two of work and then you are going to retire probably still have to survival. I can't rely on it. Not at the end. No.
00:32:46.140 --> 00:32:51.660
So like you said, you never imagined this.
00:32:51.690 --> 00:33:11.339
I even in our relationship. There's only so much we do. Sometimes I think I'm I'm wasting my life. This is my life, too. But I don't have a lot of support, to be able to go places. So we are a blended family. He is my second husband.
00:33:11.579 --> 00:33:40.500
So I have a son and daughter with my first husband, and he has a daughter with his first wife. My son moved back home about three years ago, he was only out for maybe a year and a half. During the pandemic. My daughter lives back east and his daughter lives in Northern California. She lives near San Francisco, when we my husband first got the diagnosis and was really, really sick. My stepdaughter was really there.
00:33:41.039 --> 00:35:10.079
She even though she she would call every day to find out what was going on. She's a speech pathologist. So whatever she could do to help. And she works the VA. So she was talking to colleagues about what was going on and how, how she could help remotely and she even came when I thought we were going to have to move during the pandemic was before we got the stair master and stuff in. And she helped me like pack up books and pack up the garage. And she she was really, really good about doing this. And if if my husband was very obstinate with me, I would call her and I would say I'm ready to get a divorce. Please talk to your father because I can't, I just can't. This was like right during the day, first beginning of the diagnosis when he was still more of himself and really getting angry and really why can't I do this and storming out of the house. I'm leaving and then turn around and come back. Where were they going? But now it's just not that way. When did that change? Maybe a couple years into it. I don't know when I think when he started to stabilize. I mean she doesn't call that often. I know she's raising this Six and a half year old with her husband and she's got a full time job and so Miss He, but her mother's allowed to come from visits but we are not.
00:35:10.139 --> 00:35:16.800
Do you think that's because she doesn't want to see her dad? In the state he's in or what? No, I've
00:35:16.800 --> 00:35:38.010
asked her. She said that doesn't bother her. I honestly don't know why it is. I know he would bring him there, wouldn't you? i Yeah, we wanted to go for our granddaughter's birthday last last year. And she said you don't have to come. I'm telling my mom not to come to.
00:35:33.929 --> 00:35:46.079
She said her mother in law's up there. Fine. They she lives here. This was right before dialysis when we could have gone up there for a birthday. No, no, don't come
00:35:46.170 --> 00:35:48.480
down. Might have been the last trip. Actually.
00:35:48.719 --> 00:35:52.289
That might have been probably a last trip tree, you guys.
00:35:52.739 --> 00:35:54.030
I mean, we could still go I could
00:35:54.030 --> 00:35:57.719
find that thing around the dial schedule. I guess you could be could
00:35:57.719 --> 00:36:04.440
you know there are cruise ships that they do haemodialysis on cruise ships.
00:35:59.369 --> 00:36:04.440
So I'm not ruling out travel.
00:36:04.710 --> 00:36:22.739
It's just as I said, to just to go with him. The kids would have to come or we'd have to go with a couple or something. And I would just be it's too hard by myself to none of vacation then because I don't have any other stimulation. Now you would need help for sure. It's hard for me.
00:36:18.840 --> 00:36:34.650
I don't get help from my stepdaughter. My son helps me when he can. My daughter is across the country. So she she can't help her stepfather either. So
00:36:34.920 --> 00:36:37.530
and it's expensive to hire caregivers.
00:36:37.889 --> 00:36:48.300
Yeah, my parents can't certainly can't help. They're in mid to late 80s and 90s. And nobody wants to deal with my husband's incontinence issues.
00:36:45.480 --> 00:37:10.260
And they certainly don't Dubai go over to see them. You know, when they have their own health issues to deal with? Yeah, so it really boils down to you. It's me, and if something happened to me, like, like my stepdaughter would have him in a facility like this. Oh, yeah. It'd be really good at putting him there. I manage and it finds no one else
00:37:10.260 --> 00:37:11.280
to take care of him. Well,
00:37:11.519 --> 00:37:45.210
I mean, if there's no one else is no one else to take care of him. It's just me his his sister moved to Arkansas a couple of years ago. And she she's not in any shape to help him either. So it's really it's just me, it's just me. He tells me all the time. He says, Thank God I have you are so lucky to have you. Yeah, he knows. When I tell him, I'm really lucky to have him too. Because before this and everything, and even still now he's still still my husband, he's still my love. And we're in this together, for however long it's going to be.
00:37:45.210 --> 00:37:53.460
And I don't know how long it could be 10 years. He's healthy, even though he's not healthy, if that makes any sense at all.
00:37:53.940 --> 00:38:19.110
I've dealt with all of these issues, even when he had his issues. I'm just afraid. I'm going to be too tired. I know what happens to caregivers. My aunt was a caregiver for my uncle. And when he passed away, she seemed to have lost all desire to do anything. She sleeps days at a time still, even though it's been years. I don't want that to happen to me.
00:38:19.800 --> 00:38:34.409
I'm so afraid that I will have lost my own identity. Because I last this whole last year of starting dialysis and everything. I started going through my own thing, who am I?
00:38:34.440 --> 00:38:40.199
How am I? I stopped coloring my hair. And I went it looks great.
00:38:40.530 --> 00:38:46.139
Thank you. Although I almost feel like I look older now that my hair is not red. You
00:38:46.139 --> 00:38:47.550
can always dye it back.
00:38:47.760 --> 00:39:20.429
I can but I don't know if I want to. Now I have a head full of pretty much white hair instead of Red Air was going through this whole thing of of the flu. I am I am a caregiver, but I'm more than a caregiver. I have other stresses on me because of my son and all of his stuff. I had to put him through school this year, even though he's 32 years old. It's just hard. And I really sometimes I'm just afraid of losing myself and not knowing who I am anymore.
00:39:16.079 --> 00:39:40.320
Because it's almost like when you're an empty nester. And when you're an empty nester and your kids leave and you think oh my god, but I'm, I'm a mom and, and in what am I now that they're gone? I I don't I hear all the time. And it's the same thing because I'm still doing the same things I was for my kids.
00:39:40.380 --> 00:40:16.679
So I guess that's good to be aware of right? And good to think about what you like and you're talking about your interests. Go into the theater, or eating going out to meals with friends. You probably like to go out to the movies. I mean, there were lots of paths you probably love to do that you're not doing you'd love to do Probably would travel if you could. So I would say, hold on to those things. Right? Hold on to the Melanie, who has all of these interests are your canvases, the unfinished artwork that you've got sitting there, I mean, these are things that you will get back to,
00:40:17.099 --> 00:40:27.210
I hope. So it's really hard, I just don't have the energy. And sometimes I know caregivers, we just have the energy to get through a day.
00:40:23.519 --> 00:41:42.119
Sometimes it's just getting through the day. Sometimes I have to sit there. And if it's a Murphy Law Day, I sit there and go, Okay, it's alright. This too shall pass. Sometimes I have to say the Serenity Prayer, which I took a picture of and have on my phone, just in case, I have to realize that there are certain things that there's just nothing you can do about and you'll only have to worry about the things that you can, and just take deep breaths and maybe do some yoga and try and exercise and just chill. only think about what's going on. Now. There's some days are like that. Some days, you can plan. Some days, you just have to say, I woke up today, it's a great day. Be grateful for that. And be grateful for everything that the little beautiful things that beautiful, beautiful clouds, it's, it's a beautiful day and be grateful for the rain. I start saying what I'm grateful for. And sometimes it really helps me fall asleep at night. And just to say when I'm grateful for because there's so much to still be grateful for there really is and I I appreciate that. And
00:41:42.119 --> 00:41:46.409
that's good that you're in touch with your gratitude. Absolutely.
00:41:43.619 --> 00:41:51.809
Especially on those days, we think I'm exhausted, I can't do one more thing. I don't even know how I'm gonna get through the day. Exactly.
00:41:52.050 --> 00:41:58.320
Just an hour, I gotta go take an hour nap just an hour. And it helps, right?
00:41:54.719 --> 00:42:43.019
Sometimes Sometimes I wake up still really super tired. And I have the new right myself out of bed. But you know, sometimes not. And you just you do what you have to do, you have to do it to survive. And then you have to realize that as I said, it's isn't it's not going to be forever. And so you really need to be able to keep in touch with friends, if you lose touch with friends. And yes, it's really easy. Nobody calls my husband anymore, none of his friends. We see people in groups, like once a month. Okay. And that's, that's pretty much all that it is. I have a girlfriend, that will we make time, like once every two weeks, and we try and get together for a few hours.
00:42:38.760 --> 00:43:31.710
You have to make these community friends like going to the support groups, and you can throw misery there. I'm even going to I'm going to start my own support group for I think that's great. Yeah, I think we're going to try for, we're just trying to get a platform, try and get the platform. But may 7 Is my start day I'm trying to do it. The second and third Tuesday's because I don't want anything to interfere with my other support group. So it'd be the second and fourth Tuesday of the month. Last would it be for MSA, anybody can join but it's specifically for people in the Pacific Time Zone because most of these Nishan MSA cure PSP, they're all on the East Coast.
00:43:27.960 --> 00:43:58.980
And so all all the times or East Coast times the MSA support group for me, I can't get to really any more. Because even though it's eight, it's eight o'clock at night, then it's five o'clock for me, I have to go pick up my husband from dialysis. They won't let me join on the phone. I guess it's some sort of thing if you're using somebody else's platform, I guess it's against the law to be listening, die in an accident.
00:43:53.369 --> 00:44:03.960
And there's so the facilitator who knows what's going on, he doesn't want me to join while I'm in a car listening.
00:44:04.440 --> 00:44:11.280
I see. So you're doing your own. So you're starting your own workgroup out here on the West Coast. That's a great idea. So that
00:44:11.280 --> 00:44:25.199
I can do it on my own time. And so that those of us who I mean, it's dinnertime in California, if it's from if it's from us from 530 to 630. That's mill with me, that's dinner time. You're
00:44:25.199 --> 00:44:31.440
the leader, you can do it whenever you want. You can do it from seven to eight 630 to 730, or whatever.
00:44:31.530 --> 00:44:32.309
Exactly.
00:44:32.460 --> 00:44:49.079
And just you you have to do things sometimes just to help yourself that is also helping others because that's how all of these things get started anyway, somebody did it because there was a gap in something that they needed and then they were able to support other people
00:44:49.139 --> 00:44:59.820
weigh my sentiments exactly. That's how this podcast came about. So there you go. And that's what we're supposed to do in this life isn't residential said help other people we're supposed to be of service. Yes, I'm
00:44:59.820 --> 00:45:16.500
sorry. And I feel like at least for me, even to my husband, I am of service to Him, just like he, when he was able to do it, he was of service to me. And we give back. I'm giving back to him and, and he's grateful for me for giving back to him. And
00:45:16.769 --> 00:45:20.789
it's a beautiful note to end on. It really is grateful to
00:45:20.789 --> 00:45:28.170
have him and to have you and to have community. And it is just nice to be able to be grateful. And
00:45:28.170 --> 00:45:39.119
we're grateful to have you and group too. So to see your face, you're smiling. I really feel like if you can do it, everyone can do it. Melanie, thank you for being here today.
00:45:39.389 --> 00:45:40.289
You're welcome. Bart's
00:45:40.289 --> 00:45:43.019
a lovely to talk to you. It's always great to see you and group
00:45:43.619 --> 00:45:44.909
and it's always great to come.
00:45:45.000 --> 00:45:45.780
Thank you.
00:45:47.940 --> 00:46:09.690
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00:46:10.170 --> 00:46:14.789
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