Episode Transcript
[00:00:04] Speaker A: When you see the moon and the night, you gotta have them all because they're here.
And when that fight starts to be a better fight, gotta have it all tonight somewhere.
[00:00:33] Speaker B: Because we have real headphones. Jules.
[00:00:35] Speaker C: Jules, I can tell you how to do that. Look on the right side where it says the people are listed. And you can scroll down. And then underneath the pictures, there's a volume indicator that's just.
[00:00:45] Speaker D: Oh, wow.
[00:00:46] Speaker C: That's just the volume indicator for you. So you can decide how loud you want us to sing.
[00:00:52] Speaker D: I am so impressed with the high tech situation here. This is like a real great.
[00:00:57] Speaker C: I'm turning your volume up right now. There we go.
[00:00:59] Speaker B: All right, listen, you're. As dad would say, you're not playing with kids here.
[00:01:04] Speaker D: I mean, it's impressive.
[00:01:06] Speaker C: No, we're not. So first. First item of business is happy birthday to Julie Halpert.
[00:01:12] Speaker B: Happy birthday. It's your birthday.
[00:01:14] Speaker C: She's 39 today, so. You're looking great for 39 again.
[00:01:18] Speaker B: Your hair looks cute.
[00:01:20] Speaker D: I'll get it cut yesterday. That's why it does look very cute.
[00:01:23] Speaker C: You're camera ready. That's good. It's gonna be good for our video snippets that are coming soon. Theater near you. We're going to be doing that in 2026 for extra promotion.
[00:01:32] Speaker B: Yeah. What have you done for your birthday so far?
[00:01:36] Speaker D: I taught all day, and then I've been working.
I had a little lunch and then I been working the whole time, and that's about it, so.
[00:01:43] Speaker B: But tonight you're going out to dinner?
[00:01:45] Speaker D: Yeah, we're going to this new restaurant in a new hotel by the medical center. We'll see if it's good.
[00:01:51] Speaker B: There's a new hotel in Ann Arbor. I didn't even know they allowed hotels in Ann Arbor.
[00:01:55] Speaker D: It's a. It's a Wyndham and it's right by the medical school, so, yeah, we'll see.
But, yeah, it's supposed to be good.
[00:02:03] Speaker B: Okay, good. Well, you know, keep us posted.
[00:02:06] Speaker D: Indeed.
[00:02:07] Speaker B: Indeed.
[00:02:08] Speaker C: Nice transition.
[00:02:11] Speaker B: Buzzword.
[00:02:11] Speaker C: Somebody's been listening.
[00:02:13] Speaker B: Yes.
[00:02:16] Speaker D: I have been listening. I didn't catch the last episode, but I'm caught up until then.
[00:02:20] Speaker B: Well, that's exciting.
[00:02:21] Speaker C: Well, for those of you listening in, the siblings are back together for. For this special episode where we're going to have little conversations with ourselves and our caregivers. And it's been a little over a year since mom moved back home, and we thought we'd do a little check in just to see what our observations have been. If there has been Any observations and give you an update on how mom's doing.
Karen, you want to start?
[00:02:49] Speaker B: Sure.
Well, definitely.
I've noticed, obviously, and I would assume all three of us would say this cognitive decline. I mean, not overly dramatic, but certainly, you know, I felt like she kind of maybe when we moved her home, was able to carry on a little bit more of a conversation.
Julie and I have talked about how I don't think she knows our names. Julie, when we were calling you this morning to sing the Happy Birthday song, by the way, we left you a voicemail, JoJo and I, I said over and over, you know, it's your daughter Julie's birthday, and I've stopped saying things like, do you remember when, you know, you gave birth? Those kinds of things. I'm not asking those questions. But even the many times I said your name before we sang the song, and then you could probably see that she kind of stumbled upon your name. I thought it was funny the last episode where she sings Happy Birthday as one of our interlude songs, she said Janice, which. That kind of came out of nowhere. But I'm assuming. Assuming you're noticing the same thing, right?
[00:03:59] Speaker C: I, you know, it's tough for me because I'm there all the time. So anytime you're on top of it every day, it's tough to see the change. The things that I've noticed is honestly, the, the, the top line summary is I haven't noticed much, definitely some gradual decline and just, I can just record, like, different habits and behaviors that I've noticed. Like, she used to watch a lot more tv. She used to sit in that couch and enjoy watching tv. I know, Karen, you mentioned maybe that's something to do with the stability of that seat position in the couch, which isn't as firm as the, the front room chair. But she's definitely, even when I sit her down to watch CBS Sunday Morning, she'll often just get up and start walking around the house. And that's, you know, interestingly another thing I've noticed, she's doing a lot more walking around the house. And so her agility is still pretty solid with that walker. And she spends a lot of time walking around. And I think part of it might be that she gets caught in a loop when she starts walking around and she doesn't realize she's been walking around for like a half hour. And so every once in a while, I'll be like, hey, mom, you know, I'll direct her back to the chair. But I obviously, I loved her. I love her not Sitting in that chair for hours at a time. So as long as she wants to keep walking around, good for her.
Getting her steps in and being vertical for a little bit, that's good. The only other thing I've noticed is that we started to do put a little chair up between the main house and these breezeway steps that we have that take you down to the garage and outside.
She has been exploring on her own, getting down there, and she's still in physical enough shape. Even then when we help her up and down, she's able to use the railing and get down and up on her own.
And a couple times she's tried to do that on her own. And then when she gets down there, she's down there without the walker. And I just don't know what the plan would be. Then it's like, not much wait.
[00:05:54] Speaker B: She's actually gotten all the way to the door where she could leave the house.
[00:05:58] Speaker C: At one time when I was upstairs, I don't have eyes on her 24 7, but one time, I think when I had taken a shower or something and I came down after and she was sitting in the front room chair, but the breezeway door was open, so she had, I assume, been able to walk down there, open the breezeway door, which, you know, all you gotta do is then walk outside. And then probably was like, okay, what now? And obviously she can't, like get the walker down there behind her, which is a couple steps above her at that point. And then she decided to abort and come back into the security and the safety therein of the home.
[00:06:37] Speaker D: She was returning to the scene of the crime.
[00:06:39] Speaker C: Yeah, she was.
[00:06:40] Speaker B: So, like, exactly, literally where it all began.
[00:06:43] Speaker C: And then, you know, another thing I've noticed over this past year is that in the beginning I was very concerned about any movement. So, you know, I'll be upstairs. We got the camera alert, so anytime there's a motion alert and she gets up and starts walking around, I would be very alert and making sure she was okay walking around and sometimes even go down there to supervise the walking around. But she's been so fine walking around. She's certainly very able to sit in her chair and get up on her own, walk around and come back. That that hasn't been a big deal. I still watch the cameras, but she's totally fine.
And so that was something that I. I got to be comfortable with is like, just because she's getting up and walking around doesn't mean I have to, like, have an alert and go down and totally change what I'm doing at the time. But I've definitely been watching the potential for escape out of the breezeway door more. And so we put a pretty sturdy chair from the dining room in that position and that seems to have done the trick. She. She ganders at it and she's like, nah, I don't think I can manage this effort. And then she moves on. So that's been solved, but she's still exploring and getting up and moving around. So physically, I don't know much decline that I've. That I've witnessed Bulls.
[00:07:57] Speaker B: What do you think?
[00:07:58] Speaker D: Yeah, well, first of all, you know, it is interesting and curious that she's trying to. Because I've always been concerned. It's pretty common. You should ask one of your experts about dementia patients wandering, trying to get out of the house. And that's always been a big concern and something we haven't had to worry about. That's when things get scary. I mean, of course she can't unlock the door if we lock the door, but that would be more troubling, as you say. I can't imagine that she's going to, like, go through all those hurdles and there's grabbers in that breezeway which make it safer, of course, for her.
[00:08:29] Speaker B: But although I will remind you that the grab bars were where she smashed her face in on the original escape effort that brought us to assisted living. So it's great and terrible.
[00:08:40] Speaker D: Well, although I think she was not using her walker at all then, but I guess, yeah, it doesn't matter because she has to use the steps and I don't know. But in terms of what I've seen, I would say it's inconsistent. Like, there are some days I go and I see her about once a week, and there's some days I go and she just seems so out of it. Like she. She's just babbling on about nothing. She doesn't seem like she's really aware of her surroundings. And then other times I'll go, especially if, like, my husband comes, Scott comes with me, or if one of our girls are in town, she'll just light up and you'll say, you know, how. How are you? And she'll say, I'm great, and how are you? And she. She seems really coherent, so it's almost like there's, like marbles in her brain. And sometimes they're getting in the slot and other times they're not getting in the slot, you know. And interestingly, Andrew, about the tv, I notice she does. She seems totally Uninterested in TV or at most maybe for like, a few minutes.
And she spends most of her time, like, reading out loud. I have to say, the one fascinating thing, and again, I'd like to hear from your experts about this. Her. She can read perfectly fine still. And I don't think she understands what she's reading.
[00:09:50] Speaker B: Yes.
[00:09:50] Speaker D: But she absolutely can read anything. And it's. So she could spend a lot of time just reading cards and books, passages from books and magazines out loud.
And that has continued.
[00:10:03] Speaker A: She.
[00:10:03] Speaker D: She also still plays the piano, so we're getting some good musical footage from her. But, like, I'll always say to her, do you want to play the piano? And she'll say, if you want me to. Like, she's doing me a favor.
[00:10:15] Speaker B: Like, yeah, I sure want you to. But that's command performance. Yes.
[00:10:19] Speaker D: Oh, and you know what she does? She used to sing. And she would, like, at least, like I said, let's say it's, you know, I get a kick out of you. She would start by singing I get a kick out of you and sing a little bit. And it would go into her usual, you know, somewhere over the rainbow. But these days, everything is almost. Basically, she just plays Somewhere over the Rainbow.
[00:10:38] Speaker C: Right.
[00:10:39] Speaker B: She has, like, the same couple notes that she starts with, and then within. I almost thought we should do, like, a listener challenge. How many seconds do you notice until she morphs into somewhere over the Rainbow, which, by the way, is getting closer and closer. The last couple recordings you sent me, I think we got to, like, five seconds. And I thought, oh, that's. That's impressive. That felt long. But, yeah, for sure.
[00:11:01] Speaker D: And then last week, it was getting to know you, and she just sang getting to know you in every single song, even though the song wasn't getting to know you. But I don't know, I just feel like I agree with Karen. I'm sure she doesn't know our names, but I still believe she absolutely knows who we are.
I wasn't sure when Thanksgiving rolled around in my girls were in town if she. It was hard to tell, especially with our older one who hadn't seen her as much, if she really knew that that was her granddaughter.
I don't know. I will never know. I have no way of knowing.
[00:11:32] Speaker B: And it's funny because she does this thing where she'll say, oh, it's so good to see you. And so you think, oh, she sees me. She knows who I am.
And then I think if you were to go deep and ask questions, which we don't do. We know that's not the right move. But I think. I don't think she'd be able to tell a name or a relationship.
[00:11:54] Speaker C: And. Yeah, and that's probably true. And I also noticed with the piano, I guess that's another behavioral change. She definitely just doesn't play the piano as much as she used to. Left her own devices. If you didn't prod her like Julie when you're there, like, she would never go to the piano. And like anytime you ask, she probably say, no, I don't feel like it. So it's definitely something she has stopped doing on her own or seeming to have top of mind in what she likes to do.
[00:12:20] Speaker D: But Andrew, did she used to say, I want to do the. I want to play the piano now she initiated that.
[00:12:25] Speaker C: No, but she sometimes would on her own go to the piano. And sometimes and more times if someone said, hey, you want to play like the caregivers, you know, prod her along and do you want to play the piano? She'd be like, oh, yeah, let's do it. You know, like, definitely the volume of time hearing the piano played in the house has definitely gone down.
[00:12:43] Speaker D: I agree. And also another change.
Of course, this is. Doesn't. It makes more sense now because the weather's bad. But even when the weather is nice and I would say, do you want to go for a walk? I'd really have to prod her and because I think. I wonder if she's more scared that she's going to fall or just. I think it's. She knows how much of an effort it is getting up and out. Like she has an awareness, I think, of the challenges of just sitting up. It's hard for her to sit up. I also noticed. Oh, by the way. Yes. In terms of changes. Another one I noticed when I took her out for ice cream, which by the way, continues to bring an enthusiastic response.
Yes.
She still seems to remember that. But she was in the shit. She was in the car. She was. Getting her in the car was extraordinarily hard. Like she forgot how to. She could put one leg in, but she didn't. She couldn't figure out the motor skills to get that other leg up and in. And then when we were at the ice cream place, it became so difficult and I started freaking out a bit because I thought, I can't lift her into this car if she can't get the legs up and that getting in and out and her mobility and we go on walks. It's extremely, extremely slow. All of that seems to be really declining.
[00:13:55] Speaker B: Yeah. And then there'll be other times I've had the same thing where I feel like, oh, my gosh, I'm worried that I can't get her in and out of the car. Can't get her in and out of my house, where I bring her. I try to bring her at least once a week. And then other times she's kind of doing it.
There's a real big inconsistency there.
I've noticed that getting her down the couple steps to get out of my house is challenging. And I think the other piece that I find interesting is that it used to be that I would bring her over to my house during that two to five time on a Saturday or Sunday when we didn't have caregiver coverage, just so Andrew could be at, you know, at the house alone. Which I know for me is one of my favorite things to be in my house alone. I would think it would be nice to get her out. She used to love it. She would look forward to it. We would go for walks around the park in my neighborhood. Now I can have her here from maybe about an hour, an hour and a half. And then she'll start to get up and I'll say, what are you doing? And she'll say, I'm going home. Which I find kind of amusing because obviously I don't know how she's planning on getting there. And I'll say, oh, well, Andrew will be here in 15 minutes, or I'll take you home in 15 minutes. But I think that part of that wanting to go home or not wanting to get out of the house is just she feels so comfortable and content in her house. Specifically in that chair in the living room.
[00:15:11] Speaker C: No, for sure, that chair. And I know the interesting thing is, which is last week, she's also been having, like, some fun taking the pads, the protective pads off the chair. It was. Got to keep an eye on that.
[00:15:23] Speaker B: And so I noticed today when I was there, you had quite the rig. The.
[00:15:28] Speaker C: It's retrofitted in there. It's part of the chair now. And.
But, you know, it happens. And so she takes it off and then she ends up sitting there for a little bit. And sometimes there's some leakage that comes on the chair. Anyway, I was like, okay. Instead of using my turbo carpet cleaner stuff to try to get it out of the cushion cover, I was like, oh, this cushion cover you can wash, right? So I washed the cushion cover. And while it was being washed and dried, the Chair was off limits because there's no cushion there. So at first I put a bunch of books on there. Of course, she tries to sit on the books.
And then I. Okay, now we got to turn the chair around and just, like, completely cordon off the chair just for a couple hours while washing and drying is going on. And then the next thing that happened was she subconsciously, in protest. I think I found her sitting because, you know, the walker has that seat that you can sit down in. So she had placed the walker right next to the chair and was sitting in her walker next to the chair. Like, I'm waiting for this chair to become available.
Like, okay, I got you. I got you. And, you know, it wasn't completely dry, the cushion, but I was like, okay, I guess it's time to get that thing back in action. So, yeah, she. There's a comfort level there that is quite the serious. The.
[00:16:45] Speaker B: Project to get that cushion off the chair, the COVID off the cushion, and get it back on. I'm just.
[00:16:52] Speaker C: When you take the COVID of a cushion off and wash it, and that cushion has been there. I don't know how many years has that chair been there? I don't know if anybody's.
How many?
[00:17:01] Speaker B: Maybe 30.
[00:17:02] Speaker C: Yeah, maybe 30.
[00:17:03] Speaker A: Yeah.
[00:17:03] Speaker C: The inside of the. The cushion has little flaky pieces of, I don't know, garment or something. Material deteriorated, decompose.
[00:17:13] Speaker B: Yeah.
[00:17:13] Speaker C: So when you wash it, all those. All those things come flying out. So I had to do a little bit. It wasn't a big deal, but I did have a little removal job in the. In the washer to. To get those out, but it worked out. And, yeah, it's work getting it back in over the cushion. And now that cushion is completely discolored from the rest of the chair, which doesn't mean anything, but it is clean.
[00:17:34] Speaker D: But I think that. I mean, it's clear that she's looking for safe spaces, spaces that are a form of security for her. And she's comfortable with. I think the couch is much more comfortable. And the problem with that chair when I'm there is like, let's go in the family room, because I can't sit anywhere near the chair, look through photo albums, which I like to do with her, and sit while she's reading. And I can't sit next to her, but she's just like, no, I'm sitting here. It's like she's glued there, so. And she doesn't watch TV anymore, so she doesn't need to be in the room with the tv.
[00:18:02] Speaker B: So after all we went through to get that new couch so we could all kind of hang out there together. And she wants nothing to do with it. But even at my house, I notice if I put her on the couch, she's kind of leaning over from one side to the next, so I sort of have to prop her up with pillows. I mean, it really is that progression I absolutely see in a pretty huge way.
[00:18:23] Speaker C: Yeah. But again, in summary, I think compared to when we first brought her home, I would say that it's pretty remarkable, the relatively small level of decline that we've seen. She seems overall pretty stable physically, in good shape.
[00:18:38] Speaker B: Physically, she's very straight.
[00:18:39] Speaker C: Even, like, mentally, like, when somebody talks to her. And her ability to have a little conversation and respond to something very direct.
I don't notice much of a change there.
So good for her.
[00:18:50] Speaker D: Yeah, I think she's. The bottom line is she's really happy there. She's still really happy in her house. She loves her caregivers. She, you know, she just.
[00:18:59] Speaker B: It.
[00:18:59] Speaker D: You know, she seems content. Right. So.
[00:19:01] Speaker B: Right. And I do feel sorry when we're.
[00:19:05] Speaker D: I was just saying.
[00:19:07] Speaker B: Go ahead. Sorry.
[00:19:07] Speaker D: I was just saying I agree with Andrew that it hasn't been like, you know, she's not, like, staring into a wall, not knowing who anybody is. We're not there yet, for sure.
[00:19:14] Speaker B: Yeah.
When I take her anywhere, to my house, wherever we go, and we come home, the minute we pull down that street and she sees her house and she says, there she is, and she could not be more excited. And on an emotional note, I'm just gonna say that I.
You know, we talked about this at the beginning, how deeply she felt about that house and how she was attached to it. And I often think of, you know, what our goal was here. And our goal was to try to provide the best care for her in the best circumstance that we could. And I think we've done that. I think we each owe ourselves a pat on the back and each other for making this decision and doing what I consider to be the right thing for Mom. I think dad would be incredibly proud of what we're doing for mom because they worked hard to have that house, and she's been very specific that that's where she wants to be. And we're lucky that we can do this.
[00:20:15] Speaker D: Yeah. That's the takeaway, indeed, is that we're lucky that we're lucky that we can do it and that we also have a great caregiver team. I mean, Andrew managing the care. Fantastic. And also this great team, which is not easy to find.
[00:20:25] Speaker C: So, so lucky makes it all so lucky that we have that.
[00:20:29] Speaker B: Yeah. I think we have to also really focus on that, that we would not be able to do this if we didn't have these lovely, lovely women who just adore her and take such great care of her. It always cracks me up that they say she's the sweetest patient we. The sweetest person we work with. And I think, oh, girl, Lucky, Lucky, you weren't here a couple years ago or even a decade ago. I don't think anybody would have described mom as the sweetest person they know.
[00:20:57] Speaker C: Well, just so you know, there is the occasional meltdown in the shower. Like the other day, Shara gave her a shower and getting into the shower is fine, but getting out of the shower, she said she had a complete meltdown. It is rare, but sometimes, you know, there's some confusion and fear that goes on, which I'm sure is just part of the disease. But yeah, overall she's very amiable.
[00:21:16] Speaker D: I imagine that's going to happen more often. Maybe not. Maybe we'll get lucky, but I mean, I think we'd be naive to think that it's going to just be always smooth sailing. I think it's.
[00:21:25] Speaker B: But wouldn't that be amazing?
[00:21:27] Speaker D: Yeah, it would. It would.
I don't know, I guess I'm a little more of a pessimist, but we'll see.
[00:21:33] Speaker B: No, you're a realist and I agree with you. I always am thinking I. What's next? What's coming our way? We've been so lucky. But I. Let's revel in the joy of it for, for now and, and continue to do check ins and see what we notice because I think it's. It's meaningful just to have quick combos to see where, where things are going.
[00:21:51] Speaker D: Yeah. And again, our caregivers obviously are on the ground certainly more than I am. So, you know, I, I'm curious what their impressions are too.
[00:22:01] Speaker C: Yeah, we will get their impressions shortly and for now, thank you guys for the feedback and we'll be right back.
Or maybe we won't. So I'll put some space in here in case we want to edit that. I think we're going to add some caregiver feedback, but anyway, I'm going to stop recording right now.
[00:22:27] Speaker A: Embrace me, my sweet embrace of all you.
Embrace me my eerie place above you.
Take one look at you my hyrule trypsy in me you and I will always be the trypsy for me.
[00:22:55] Speaker D: I love all the many.
[00:23:00] Speaker C: You.
[00:23:08] Speaker B: Well, thank you for listening in on our JoJo recap. We just wanted to spend a little time going over what we notice about what's happening with our mom. You probably notice with your own parents, relatives, if you're caregiving. The changes happen over time, sometimes gradually, sometimes rapidly. But we think it's a really good idea to just keep track and discuss it with each other. Because we're fortunate to have each other. It's nice to be able to see if we notice what other people notice. We mentioned that we're going to be talking to our caregivers, which we will be doing in future episodes, but we thought for today we'd keep it relatively brief. So we look forward to having you join us for our next episode of if It's Not One Thing, It's Joanna.
In the meantime, if you have any questions, comments, feedback, we'd love to hear from you. You can email us@ifitsnot onemail.com and as always, we build momentum from listeners like you. Please, like subscribe and share our podcast with anyone you think could benefit from it. We appreciate you listening and we will catch you next time.
[00:24:20] Speaker A: Blossom of snow, May you bloom and ro grow, Bloom and grow forever.
Bless my homeland forever.
Sam.
