The In-Between: Watching Alzheimer's Progress in Real Time | Caregiver Update

This is a real-time update from April 2026, nearly a year into our mom Rosemary's early onset Alzheimer's journey. And honestly, the weeks leading up to April 2026 is a lot! 

We share some of the specific moments that stopped us in our tracks lately. A medical video she watched with us, cried through, and had absolutely no memory of two weeks later. A store name she's known her whole life that suddenly meant nothing to her. Getting turned around in a parking lot and feeling too ashamed to ask for help. These aren't dramatic moments on their own, but together they're painting a picture that's hard to ignore.

We also get into what it's like to watch someone close to her still not fully grasp where she is right now, the gap between what we're seeing from across the country and what's being acknowledged on the ground, and why that gap is starting to feel urgent in a way it didn't before.

And we talk about driving. Not because we're there yet, but because we're starting to have the conversation with ourselves about when we will be, and what losing that independence is going to mean for her.

No framework. No tidy takeaway. Just an honest conversation about where we actually were at.

In this episode: Alzheimer's progression | early onset Alzheimer's | memory loss | remote caregiving | caregiver support | family dynamics | Alzheimer's caregiver update

Transcript

SPEAKER_01 0:00

Welcome to Conversations Through Alzheimer's. I'm Amber Marty and I'm Felicia Wood. We're sisters and daughters of Rosemary Marty, diagnosed with Alzheimer's in June of 2025. We're documenting her journey as it happens and we're sharing every resource we find along the way. This is her story and ours.

SPEAKER_02 0:18

Thank you so much for tuning in to today's episode. Today we wanted to do something a little bit different. It is now April of 2026, and we've been having some recent experiences that have been kind of challenging with both of our parents, both with our mom who has Alzheimer's and our dad, who is her caretaker. And we thought it would be helpful just to pause and kind of recap some of the incidents that have happened, if that's the right word, some situations, some of the conversations we've been having, and some of the struggles that we're sitting with with the weight of the decisioning and trying to figure out how to evaluate it, especially from afar. Because if you're new around here or haven't listened to the prior episodes, both Amber and I live in New York, while our parents live in Denver, Colorado. And so a lot of our interactions with them are things we can't pop over and actually check on in person. It's trying to really account for things from how my mom would describe their things are happening, how my dad would describe things are happening, and then us also trying to kind of sort through that and find what could possibly be the version of the truth. Today we thought we would start by going through several of some of the conversations that we've been having, the things that we've been hearing. And then as we go, we're just gonna kind of talk about how we're navigating it. So Amber, do you want to go to the first example that kind of forced us to say maybe this would be something worth sharing?

SPEAKER_03 1:48

Yeah, we've been noticing a lot um that her short-term memory, my mom's short-term memory, has been getting worse. So there's a medical therapy that she watched a video for a few weeks ago. And I know I know she watched it because I got on Zoom to help her find the video. I started the video and then I called her back, you know, 45 minutes later when the video is over, because I watched it too, and then we talked about it, and she was very upset. You know, it is it's talking about like potential brain bleeds. It goes over, it's like 45 minutes basically of like potential complications because they need people to know when you're looking into these therapies or these drugs, the possible side effects. And of course, that's scary. So she was crying, and me and Felicia got on the phone with her and you know, kind of walked her through it and explained like the side effects. It's not guaranteed, they take multiple MRIs, stuff like that, and all was well. And then a couple nights ago, I was on the phone with her and she said, Oh, I just came across a video for the IV infusion and watched it for the first time. And it was really scary. I started crying, and I was like, I I had to ask her a couple follow-up questions because I was like, Is this a video I didn't know about? Like maybe like a the doctor sent a new one, or maybe she found one on YouTube, and and it turns out it was that exact same video. She just had no recollection at all of watching it a couple just a couple weeks prior. And I was like, Oh yeah, like we me and you watched that like together on the same night a couple weeks ago, and she was like, We did. She was just she had no idea. It wasn't like a oh yeah, now I kind of remember that. So, and you know, most of the time, like with the short-term memory stuff, it's been like, oh yeah, like now that makes sense when you mention it, but like it's just been more frequent of completely gone, like shut off as if it never happened.

SPEAKER_02 3:22

I think that one is one of the more interesting ones because, like you said, like we've seen it quite a bit where something we were talking about like the night prior, she doesn't remember. Like, um, oh, such and such happened last night. Do you remember? Oh, what? No, and you're like, okay, that's like true short-term memory. Yeah. A couple weeks ago, when this happened, like it was ahead of a doctor's appointment. We had conversations about it. Our dad watched that video with her. We went to the appointment, we referenced the video, we said we had watched it, everybody was on the same page. So it seemed to have converted into a memory at that point, like because we had referenced it for several days. And so I think that's really caught us up. Like when you called to tell me that that had happened, I had that kind of moment of like, what? Like, she doesn't remember that? Like, that's it's kind of scary to think about the things that are sticking and the things that are not. And I remember that I had asked you, like, do you think that she doesn't remember that because of how emotional she was that week? Like, she was very upset about the side effects, she gets very nervous for those appointments. Like, do you think that's why that memory went away?

SPEAKER_03 4:34

Um trauma response almost.

SPEAKER_02 4:36

Yeah, but I guess it's something we can kind of keep an eye on potentially is like, are these things kind of continuing to fade away with like around things that feel protective?

SPEAKER_03 4:48

Well, it's interesting because we've been noticing some other things that she's forgetting that are just kind of surprising. Like today I was on the phone with her, I was telling her how a Macy's near me is closing and it's 70% off everything. And so I was telling her that I was gonna go there later. And she said, Macy's, Macy's, like the words sounded familiar to her, and she's been to Macy's a bunch. Like she was a shopaholic growing up.

SPEAKER_02 5:09

She's Macy's with her multiple times. Like when I used to both work at the mall, so she wouldn't have to be around. Yeah, she goes to park there.

SPEAKER_03 5:17

Yeah, so she was saying, like, Macy's, Macy's. Like, it sounded familiar, but she was like, like, didn't know what that was, and I was just like shocked by that. And you know, the important things with Alzheimer's is you don't make a big deal of it. You don't say, like, of course you know Macy's, or what do you mean you don't know Macy's? You've been there a bunch of times, like that's gonna make them feel really ashamed and stuff. Like, it's it's important to just kind of be like, Oh yeah, it's a department store, it's kind of like, and then reference something else. Like I said, JC Penny's. Like, do you remember what JC Penny's is? And she's like, Oh yeah, we have JC Penny's here, and so it's just kind of funny how like she forgot, like, she has no recollection of what Macy's is, but JC Penny's, she she knows exactly what I'm talking about. That's funny how the brain works.

SPEAKER_02 5:58

That like gives me a little bit of a gut punch, like of sadness, because like I can't imagine my mom not knowing what Macy's is, like truly. And and that's one where like I feel like if I pointed it out in a map, or if I like like if I was talking to my mom, like I could see saying, like, well, like remember like the red star, like at the far side of the mall, and like she might be able to pick up that context and then place it and then rem like click it into place, or who knows, like maybe that one's just gone. We don't know.

SPEAKER_03 6:30

Yeah, it's just interesting. It's it's a tough. I mean, I think every part of the disease is tough, but I want to say, like, this is a really tough part right now because it's so on the border of can have a normal conversation, knows everything, and then the next day doesn't know simple things, forgetting memories, like, and it's just like it's a tricky time for the caregivers and people around her.

SPEAKER_02 6:54

I think it's also really hard because like we we notice things like that and our antennas kind of go up. Like we're evaluating this, like, okay, is she having a bad day? Is this turning into a pattern of behavior? Like, how common is this? How frequent is this? And I would say that like the past couple weeks, it's been like this really blurry area where like it seems like she's having like what we would call like some good days, but filled with a lot of memory gaps. Or like some interesting self-reporting that we're hearing for the first time. Like the other day, we we got on a call with her, and she had been telling you about like how she was finding herself in parking lots and not remembering where she parked her car. And like that was another hard thing to kind of evaluate from afar. Cause I think if you and I had lived there, we would have been like, okay, well, let's go, let's go meet at you know, TJ Maxx soon and like actually go and like see how that went. Yeah. But from afar, you kind of have to be like, okay, well, like, what does that mean? You have to try to figure out how to get really good at asking questions that one, like you said, don't cause any shame, don't make her think that you're like editing her. Um, but also that can help you figure out how serious it is what she's telling you because you you're trying to figure out, like, okay, well, how many times has this happened? I mean, and then also like you have to laugh about it because you're like, are there times it's happened that she's forgetting?

SPEAKER_03 8:23

Yeah, true. Well, I think she told us what two times in the last six months is what she said, is where she couldn't find her car for over 20 minutes. And she said she felt extremely embarrassed and ashamed, and she was just wandering up and down every single aisle. And you know, you asked a good question to her. You said, or I don't even know if it was really a question. Like, we talked about how Alzheimer's, like, for example, if you open the fridge and you're looking for ketchup, the ketchup could be right in front of you, but your brain can no longer make that connection of, oh, that's the ketchup. It's scanning everything. So is that the problem where she's starting to not see her car? Because she thinks she knows. She was like, I know, I I did park it here and then she can't find it. Is it because she's passing it because her brain doesn't recognize the car?

SPEAKER_00 9:04

Right.

SPEAKER_02 9:06

Or that's what we and you know, we're in that that hard part where we're also trying to solve for some of these things by giving her tools, right? Like we went through and I said, Okay, well, mom, like if that happens again, like what are some things you could do? Like, one, you can just stop where you are and immediately FaceTime me, Amber, Dad, and like you can, you know, turn the phone around and we can use our eyes to see if that the car is there. The other thing you can do is like you can get your key fob out and like do like lock unlock, or like sometimes car key fobs have like a little alarm button, which she didn't seem to know what that was. So, like, even if she just presses like lock or unlock, like then the car can start like beeping and making noises, and then she can have that reminder of that's that one's my car.

SPEAKER_03 9:56

I think what's really hard though is when you have Alzheimer's, you forget about those tools, especially in a in a stressful moment where you're like, oh no, where's my car? I'm doing it again. You don't think to yourself, oh wait, you know, Felicia R. Amber gave me these tools, let me think about those. It's nowhere to be found. You can't reference that. And so it's we're having a hard time also having her remember these tools. And then so we just keep hearing about the same issues. And it's so hard being caregivers far away and wanting her to keep her autonomy and doing these things. And you know, nothing nothing like this is a safety issue. She can continue to drive and everything, but I just feel sad for her that she's like, I think this is something that like we're gonna have to really solve.

SPEAKER_02 10:34

But I mean, that's again like I mean, we have to be when we set out to do this podcast, we were like, we're gonna be authentic about these conversations. And like for me, and maybe I'm wrong about it, but like I don't know that I feel confident saying, like, she can still drive and everything, because it's like, well, how stress if this is happening starts to happen more often and it's creating that kind of stressful response that we can't even trust she's gonna tell us about. Like, at what point does that start factoring into our decision making? Like, I don't, I don't think we're there. I'm not ready to call up mom right now and say you can't drive anymore. But it definitely weighs more in that column of like, well, that is approaching sooner than I was ready for. Yeah.

SPEAKER_03 11:11

And we'll have to do some research, honestly, and maybe ask the neurologist, like, what are the signs that you know? Like it, like, I don't ever want it to be like a she got into an accident or she, you know, anything like that. Like, I we I want to call it before then, but it's also really tricky, like we've talked about because mom is so independent. She lets she drives to a nearby park to walk the dog. She wants to go to Starbucks to get her black coffee every day. She wants to go to the grocery store, even though she complains about it because it's something to do. And I'm worried that taking when we have to take that away, because it is inevitable, what other implications are we now gonna run into because she's stuck at the house and we're having to rely on dad to be driven places and it's gonna bring a whole nother problem.

SPEAKER_02 11:53

It's gonna be really, really hard. And it's something that makes me feel really emotional, really sad, and even like really angry and frustrated thinking about because, like you just said, like the idea of mom being kind of stranded at home without her ability to go take, I'm gonna call them like dopamine hitting breaks, right? Whether it's walking the dog, going to Starbucks, going shopping, going to Pilates, you know, she has some stuff that she just goes and that she feels capable of doing. And those are things that, like you said, give her a feeling of autonomy, give her a feeling of independence, give her a feeling of, I think, accomplishment in the day. Um, I went and did this and I was able to get myself ready and go do this. And then you do wonder, like, okay, if you have to take that away from somebody, like one, they're gonna be very emotional about that, but then also, like, is she gonna stop trying to get ready for the day? Is she gonna lose the ability to do that? Is she as her social skills?

SPEAKER_03 12:51

Is she gonna cook dinner because then she just can't run to the store to grab the ingredients she didn't need or you know, I think by that point, like by the time we really do have to make that really hard call, I think everything else cognitively will probably catch up. Like, she probably won't be able to cook complex dinners that she would need to go shopping for ingredients for and stuff like that. But like we've talked about, it's it's every Alzheimer's patient is tricky because, or not tricky, but like different. Because like I'll go to the the Alzheimer's care support groups and they'll say that like their mom, who's in their 90s, just wants to sit and do puzzles all day. That's all they want to do, and that's great for them. I'm sure go transitioning to just not driving and being at home is easy for them because they they already have that, or like a lot of people are like, Yeah, my mom just loves to watch TV or movies. And I can't say that for mom. She wants to garden, she wants to clean, and so like I really don't know how this transition is gonna go because she doesn't have any like I'm gonna besides playing her games on her iPad, she doesn't have anything where she can just like sit down and vegetate and do an activity. She doesn't have any like hobbies like that.

SPEAKER_02 13:53

Well, I have to wonder because one of the things we've talked about is how we caught this really early. I mean, don't get us wrong, there were signs, right? There were but for some of those for some of those one I do imagine that it's probably um like your your nature, like you're talking about like some people are more go-go-oriented, some people are more sedentary or something. But also, are those folks that you're hearing that story about, did they become that? Because slowly over time it got too scary to go to the store. There was too many things. And so instead of admitting it, they just started to stay at home and adapt and do other things to kind of cope with their time, and it turned into that. And then that became a baseline that seemed like normal versus what we are doing, what we're seeing of seeing somebody who was in this kind of state while they were being diagnosed and now watching that process. Like, I don't know if we'll know the answer to that, other than in the future, once those things get taken away and see how she does cope. And and you know, it brings up the other question about around how do people perceive the people who have Alzheimer's? Because for us, I think we know, or we imagine at least, that when mom gets to that state where she can just sit on her iPad and play a game or she's at home, kind of bound by being at home, like that makes us feel sad because we know it's not the mom we always had, and doing the things that we know she loves to do. But also, like when you're a caretaker, you love somebody with Alzheimer's, like it is so painful to sit with that reality that it's almost easy to be like, oh, she's fine, she's playing her game. Like, she's she's good. And I think that that's another big part of like what we're going through is like the the people in the all the person with Alzheimer's lives and around like surrounding them that it's so hard to deal emotionally with what's happening that you kind of either try to buy into a delusion around it so that it's not so painful for you. I don't know. What do you think about that?

SPEAKER_03 15:58

Yeah, I think that's kind of what we've been dealing with with our dad a lot, who's the kind of the caretaker. And it's it's really hard. It's it is really hard to because you know, we've been getting some calls from our dad recently, the last few weeks, saying, like, I think I think your mom is progressing. And that's hard to hear because it's like, well, you see her every day, like, what do you mean? But then some of the examples he gives, it's like, well, me Vlish have been knowing this for a year. Like, I think he's been so in denial that he's just now seeing what we've been seeing and realizing where she's at. Because up until now, he's like, Oh, she's fine, she's fine. Like, I think that's why she was so resistant, like in saying, like, there's no way she has Alzheimer's, because he didn't see it, but it's taken like a year, it's like he's a year behind almost.

SPEAKER_02 16:40

Yeah.

SPEAKER_03 16:40

But at the same time, there's times where, like, today, for example, like she was out of some supplements and he just told her to go on Amazon and order some. And I'm like, she she can't do that anymore.

SPEAKER_02 16:49

It's just he doesn't I think that's been the hardest part, like, same sort of thing. Like, there have been times that have come up with dad where, for example, the other day she didn't have her hearing aids in by like middle of the mid-morning. Yeah, yeah. And her her memory therapist has said, and the research shows, like, if you have any kind of hearing loss, hearing loss leads to significant cognitive, well, I should probably shouldn't say significant because I don't know if that's correct, but cognitive decline, right? Like the two are linked together. And so the memory therapist had told them, like, the second you wake up in the morning, you need to get your hearing aids in. And so the fact that it had been mid-morning and she'd been home with dad all morning, who, again, from our perspective, retired to be a caretaker for her and be there for her and help make sure she's doing what she needs to be doing. And well, what what happened on that that call where you realized that that had happened?

SPEAKER_03 17:44

Yeah. So I was on the I called my mom during my lunch around, you know, 12:30 Eastern. So it was about 10:30 a.m. for for her, and we were just chatting, and then she was like, Oh, I just realized why I can't hear you very well. I don't have my hearing aids in. I know I was giving her like a little bit of a hard time, like, mom, that's very important. Like, go get him right now. But while she hadn't had him in, I think she must have had me on speaker or something because I heard my dad. And my dad's like, that's very important, Rose. You know, go put him in. And I said to him, I was like, Dad, you need to remind her. You're the caretaker. Like, if you notice she doesn't have him in, just go remind her. And he said, She needs to be held accountable for her actions. And my jaw hit the floor. And I literally yelled in the phone, She has Alzheimer's. And he said to me, She has no problem remembering to go shopping every day. And I got so angry and I started giving him a lecture, and apparently he just walked away and went downstairs. And I was so frustrated.

SPEAKER_02 18:39

When you told me that story, because like you called me up later that afternoon and like told me that, and I feel angry hearing that story. And you know, again, like to be transparent, like because we want to be transparent, it's hard for us to have these conversations and this frustration, and then decide like, do we want to share this with the rest of the community listening to this podcast? Because the last thing we want to do is be disrespectful to our family, or you know, but we don't we don't want to do that. But at the same time, like that kind of response, we know that our dad is not the only dad in the world who's saying things like that about a person that has Alzheimer's. And like for us, hearing that response is appalling. Like, there's no other way to hear when you're a daughter, your mom has Alzheimer's, and you're across the country, and your dad doesn't even recognize that a her disease is one that she does not have the memory. You can't be a held accountable, you can't be accountable for something you don't know to do. Yeah, and that's the truth. Like, if it was something that she knew, then sure you could be accountable. She has Alzheimer's, it means she doesn't know.

SPEAKER_03 19:47

She's not it's like telling Oliver, who's not even two years old. You should remember every day. It's like the concept is like, why would you expect an almost two-year-old to remember to do something every morning? You wouldn't. And it's the same thing. My understanding is like, of course, she knows how to go shopping. She's been shopping her entire life. It is ingrained, it is like part of who she is, like we were talking about. It it is something she's always done. She loves shopping. Of course, she knows how to do that. It also involves other steps, knowing how to drive, doing other stuff, like it's connecting different neurons. Then her hearing aids, which what did she get? Like 10 years ago, maybe, and then consistently started using the last couple years, and then like really started consistently using like the last year when she knew this was a thing. Like, of course, she's gonna forget most days. And we're not like saying like dad has to set an alarm and go up there and stuff, but like he needs to be an enforceable habit so it does become more of long-term memory for her.

SPEAKER_02 20:40

I this is and this is the hard part that I think again, like this is a peek behind the curtain of the kind of conversations you and I have. We don't always agree a hundred percent on how to approach everything, and that's why it's so nice to have each other to kind of be like sometimes it's like, okay, you calm down on this, okay, you don't calm down on this, like you need to get more angry about this. Because, like, for me, like I was thinking about it, and I actually had to talk about this with my therapist this week because it was really frustrating for me. And one of the things I was thinking about is I'm like, it's very hard to figure out how to approach dad, right? Because we know that he's defensive, we know that he doesn't want to be told what to do, we know that he kind of has a set idea of what he's responsible for. And so it has not always gone well in the past when we've said this should be how you should be reacting. Like you, we expect this out of you. Um, it usually doesn't go very well at all. And then that's hard for both of us because like we get upset, like he gets upset, it can cause a wedge between us. Like we want to keep mom feeling safe. Like, we don't, we're dealing with a lot of dynamics here. But when it comes to this whole thing about the hearing aids, like I told you, I'm like, we haven't done this yet at the time of recording, but I told you I said, I think we need to sit down with dad and really say, like, what are you willing to be responsible for as a caretaker? Because right now, if it's Filling up her pill bottle once a week and taking her to like appointments, like half of her appointments, is that it? Is that all that you retired to be able to do? And is the like ask him kind of honestly? Like, is every morning asking her if she has her hearing aids in and giving her a gentle reminder to do that if she hasn't? Is that too far out of the capacity to ask of you right now? Because if the answer is yes, we need to know that. And then we'll do it. Then we will call her every single morning. Yeah, we're already up two hours earlier than her. And like, will that be a change? Will that be something like we either have to add onto our work calendar or figure out how to do? Like, sure. And like to be honest, I feel really mixed about it because there's a part of me that feels like that's not hard to do at all. Like to be able to just make sure every morning my mom has her hearing aids in, like, I should be able to do that. And then the other part of me is like, well, the mornings are always crazy. I have a toddler, like, I've got work meetings that start, I've got different pieces that are moving all the time. Like, what if I fall short and I forget? And then she doesn't have her hearing aids in because it's supposed to be my responsibility. And like, that's really tough when you're far away.

SPEAKER_03 23:11

Well, it's also gonna build resentment towards dad, who can literally walk up the stairs and just see if she has them in, and like that's a recipe for disaster.

SPEAKER_02 23:20

And that's the hard part, I think, for for me as like a daughter, and like in this situation, like why is that too hard? Like, why does this have to be a fight? And if if we're fighting over things like this now, what is it gonna be like as it gets worse?

SPEAKER_03 23:36

I've been wondering that more and more. Like, this is the easy part, even though it's hard and like a struggle, like she can bathe herself, she's not having accidents, she's like both like like peeing herself or like the car accidents, you know, like because that is that is a thing. It like it's gonna get to a point. And like this is this is the easy stage. And if he can't, if he's not willing to do more than this now, like you said, we need to know so we can take further actions to figure out what's best long term.

SPEAKER_02 24:08

Yeah, and I mean I think that's another hard part to figure out is like I I told you, like, one of my ideas is like maybe we just need to start having family meetings because right now, like, we're kind of like care team by reaction need, like a pill list has been updated, or a login has been set, or an appointment has been made, or kind of like back channeling over text. But I told you, I was like, I think we need to maybe formalize this and say, like, dad, every week we are meeting for a minimum of 15 minutes. We're gonna ask, how is how has she been doing on X, Y, and Z? Like I said, I think we need like a frame of reference and like we need to start having more accountability, like, and we need to be able to say, like, what is the goal for this week? What is the priority? Is it to like for this week? I was thinking, like, she has her lumbar puncture next week. We need to, as a care team, keep her as calm as possible because every time we have these things, it causes a significant amount of stress for her, and stress is the worst thing for Alzheimer's. So, like, that would be if we can have this meeting, it'd be like that would be great. But then this is the hard part of it being in what is the ideal and then what is the reality? Because I'm looking at Friday, the the weekend of Easter in Orthodoxy, which my dad is very Orthodox Christian. Can I can I get even 15 minutes of dedicated time of dad actually listening and talking to us about this and him making it a priority? Probably right now. I don't know if that's the case.

SPEAKER_03 25:42

Well, I think we've just been noticing his priorities, and that's what's alarming because it doesn't, it seems like other things he has going on is more of a priority, and that's what we're so concerned with. It's like it's becoming a pattern of behavior.

SPEAKER_02 25:54

It feels like an inconvenience and like the last thing on the list versus like the biggest priority and the top thing on the list.

SPEAKER_03 26:01

Yeah.

SPEAKER_02 26:02

And again, it's like, how do you confront your loved one about a situation like this? Like, I don't want to make my dad feel bad. I don't want to make him feel defensive, but I also feel like if I don't advocate for the situation now, am I also letting my mom down? I know it's very tricky. Yeah, and I will say, like, going back to like what started this conversation with with dad, it's like it does feel like some of his interpretations of what she's capable of feel really unrealistic. Like, I think we'll probably share this again example again in a future episode when we cover this, but there was an appointment that we were at, they were all at together and we were on FaceTime because it's kind of been our new standard is to join these appointments as many as we can on FaceTime with them, which thank God we do, because like you need multiple years listening to that, which we can talk more about. Taking notes and stuff, so they can just focus. After the appointment had mostly concluded, you know, we had hung up the phone, we thought they were just gonna head out. Well, turns out like there was a piece of paper that like had been given to them that had instructions for booking an appointment. Like, again, if in the normal world, or an idea, I guess let's just call it ideal, he would have taken a picture of that piece of paper, texted it to the group, we would have had a record of it, we would have all been aware of it, like nothing could get lost. Instead, he hands the piece of paper to mom and says, Here, you keep take care, keep this in a safe place.

SPEAKER_03 27:32

He he folded it up and put it in her wallet. He said, It'll be safe in there. And then she cleaned out her purse later that day and forgot that it was in there.

SPEAKER_02 27:41

Right, but but we weren't there, so we don't know if he said, put it in your purse and remember to do this on Monday. All we know is that on Monday, when she went, when he wanted her to go follow up on that appointment, that she had at some point, whether she knew it was there or not, had not thought it was important and cleaned out her wallet and threw it away. And he lost it over that. And he was, I knew I shouldn't. I and he does this thing where it's like not just like you can't be trusted, it's I knew I shouldn't have been able to trust you with this. Instead of just like I should have known better.

SPEAKER_03 28:19

That's just as bad as saying it's your phone. It's so unhelpful, it's so unhelpful, especially with somebody with Alzheimer's, like tone. We've been doing a lot of research on this, like tone and not just words, but like like like size and like your nervous system can pick up on it, regardless if they're the early stages or the later stages. Like your body can still pick up on tone and inflections and stuff, and that's why it's so important to like remain calm. And if you need to have a minute, that's not to say you can't be frustrated. It is a very frustrating disease, especially as a full-time caretaker. But I think it's important that my dad and and probably many others learn to just walk away, have that moment, call us and say, I I'm so frustrated. I put this piece of paper in your mom's purse, but don't do that around them, like they're just gonna feel ashamed and and sad and trouble and like they're not good enough.

SPEAKER_02 29:07

And I think I will say too, like, it's definitely not easy. Like, I've had conversations with mom recently where I can tell she's forgetting something, or like, for example, she's trying to follow a pretty strict diet, and the other day she was like, I thought I can't have chocolate, and like it's normal to be like, we've talked about this a million times, but yeah, it's like a knee-jerk reaction. It is a knee-jerk reaction, and like you have to catch yourself and be like, it's okay. Like, I I end up trying to, I tried to tell her, like, well, you know, like that's I understand why you think that, and like, but like really all that really matters is like, and then kind of went through the the list, and you know, but then I can tell that she's picking up on the fact that like she can't remember, and then it starts this downward spiral, and it's really hard to be encouraging enough and like kind of act like it's not a big deal, but then also provide her information that she needs, like it's a really tough balance. And you know, in that conversation, one thing I had to tell her was, you know, mom, like I said, you've been relying on your memory your whole life, right? We all do. We don't we take for granted how much we rely on our memory. Yeah, when you run to the store, what's on your shopping list? Well, some people keep like I rely on my memory and I do usually forget things. But even like about like what you can or can't have, or like what you need to be doing. It's like you just keep that, you always are using your memory in ways that you don't take, you don't acknowledge, you don't realize. And so I told her, I said, mom, like you're relying on your memory to remember like what you can and can't eat. And like unfortunately, like your memory is just not your best tool right now. And you've gotta, we've gotta figure out if we can like keep a list in your purse or check the list on the fridge, or and you're trying to be encouraging of that. But then, like you said, it's like even if you get the least bit frustrated in that conversation or you you're trying to anchor it down, like they can pick up on it.

SPEAKER_03 31:04

Yeah. Well, not only that, but like I said earlier, you have to hope that they can use their memory enough to remember those tools to to look, say, like, oh yeah, I have the list in my purse. Like I printed a list of what she can and can't have inside her cupboard last August, and she doesn't use it.

SPEAKER_02 31:20

Yeah, and I I created a list in February that was a mixture. I like I tried to do a bunch of different things. Like one, it was like quick, stable things she can like meal ideas for every like breakfast, lunch, or dinner. And then I had another sheet in there that was like easy things you can grab that are high in protein. Just like give her ideas of things. And then at the very back of it was like, okay, if you go to Tokyo Joe's, like, here's what you can have like no sauce, this kind of again, like same thing. I I did it for Kava, Texas Roadhouse, Chick-fil-A. And I realized that she hadn't been using it. And that was another thing I told her because I said, Well, remember I sent you that list, and she was like, You did? When did you send it? I'm like, mom, don't worry about it. And she's like, Well, no, I want to use it. And I said, Mom, like, I'm not frustrated by this at all. Like, you're either gonna have tools that work for you and you use them. And if you if you have a tool that you can't use or that's not, it's because it's not working for you. Like And then we need to figure out a different tool. Exactly. I think that's the hardest thing, Amber, is like being far away, it's even harder to try tools. Because like if we were there, we could print it out ourselves and laminate it on a card and like show her it, and that conversation might even be enough to help it click. But virtually, like, I feel like it's even harder to be able to give her tangible things that can try to trigger anything.

SPEAKER_03 32:48

Well, I know help, but we uh we were having a FaceTime call with her when we were talking to her about reprinting it, and there's two things I want to bring up around this. One, I said, like, oh, well, I I think I said, like, let me call Felicia in here really quick because she can print re send it to you in two seconds. And then she was like, No, no, like you guys are so busy, like, I don't I don't want to impose. And like we're really trying to get across like the message of something that takes you, hours can take us five seconds. Like, we're more than happy to drop everything and help you, like that is our priority, is helping you. So, like, never feel bad, never feel like you're imposing. Like, we want to help you, we want to see you succeed. And don't because she was like, She she kept saying, like, you know, when was it? Like, I can try to search in my email. And I'm like, why would you do that?

SPEAKER_02 33:38

Yeah, yeah, we're trying to get that across to her, is like, do not spend hours doing something it could take five minutes for us to do, and not it's not even just the time, right? Because like I do think it's good for her to practice searching, type on the computer. Like, I'm really big on like being like, help her do it, like let her do it, but because I want her to remain as like engaged and capable as long as she can. Like, that's something I worry about. The neurologist said to make sure it's important. Yeah, but at the same time, like there is like a stress cost of those things because if doing that, especially alone, is gonna cause significant stress, then it's not good to do it. And like you said, it's better just to be like, don't worry about it. Like, just have like you're still gonna be doing something, tracking your email and printing it out, so just let me send it again. It's no, no problem.

SPEAKER_03 34:29

Well, and that so we did end up having you send it again. We had her print it off while we were on the phone, but I would be very curious to call her now and see if it's still sitting on her desk. And it's been a week. Like, we I never heard of what happened to it since then. Because again, we're not there. We can't rely on dad to be like, oh, this is nice. Like, let me help you cut it out and laminate it and stuff and put it in your purse. Like, I think it just is probably sitting on her desk.

SPEAKER_02 34:51

Yeah. Or it could be in the trash already because she doesn't know what it is and throws it away. Yeah, so it's very hard. Yeah, and I mean, that's another thing that I will say is like really tricky is even in those moments where we're like, okay, like, hey, like, let's get you connected and get this printed out. There was another thing that during that same conversation where we had to have her, she needed to do something on her phone, and we were like, Okay, we are gonna share your screen, and we're gonna have to figure out. I I can't remember what that was.

SPEAKER_03 35:23

It was her, she was she was trying to text us a picture, and she was like, I'm on my messages, and it there's just white bubbles on the side, and we were like, What could she be talking about? And so we're like, you need to we we have to see a visual, like let's share your screen.

SPEAKER_02 35:36

She had ended up well, so this is this is actually kind of funny because wants to delete every message, like she is it's just a recent thing, it's gotten worse, yeah. I would say it's like escalated. I think she's always had a little bit. I think it's like being in the older generation when you're constantly worried about like running out of space, and so you're like, Yeah, I've got to delete my text. I can't have them on my phone, I don't have enough storage. And so, like, I had to tell her the other day, I was like, mom, like, raise your right hand. I am never deleting a text again. I was like, mom, you could never delete a text again for the rest of your life, and you won't run out of storage. Like, they don't mean the same thing they used to. You have to like stop deleting your texts. And so she then had tried, but somehow found her way to only seeing her like recently deleted texts, which all have bubbles down the side, so you can permanently delete them. And so we had to share the screen to figure out what part of her inbox she was talking about because which we got her out of there, and then we tried to like show her like how to like pin messages and all of that, too. But it's a tricky balance between like trying to optimize things for her and also just like give her the simplest solution. Like, there's a lot we don't know about navigating this, like we're just kind of winging it as we go.

SPEAKER_03 37:00

Yeah. Well, and it's really tricky, like you said, too, just to give another example of like you know, live that we've been dealing with. Like, I briefly mentioned this morning that my my dad wanted her to order some new pills that they were almost out of, and he still thinks that she's in a place where she can go to Amazon and do it. And I think, and this is why the weekly meetings are really gonna help, because I think he thinks, oh, the she like the medication showed up. He doesn't realize that like we're helping her. Like, she doesn't say, like, oh yeah, Amber had a help me and and everything. It's like he just thinks she's fine. But like I called her and she said she was, I don't know how long she was on there. It took her like probably an hour just to add one of the medications on Amazon. Then I happened to call her during lunch, and she was like, Oh yeah, I'm doing this. And she was like, hmm, I don't know if it's this, you know, supplement or this supplement for the next one. And I was like, Why don't you look at order history? You just ordered it a few months ago, and she's like, Oh, where do I do that?

SPEAKER_02 37:52

Like we also have a list on Amazon. I don't know if you remember that, but we have a list where you can just go in and learn how to get there. Quick, click, click.

unknown 37:59

Yeah.

SPEAKER_02 37:59

But like it would take dad three seconds. Not for mom. We did not do that so mom could order her pills. We did that so dad would know what every single one we have on the list.

SPEAKER_03 38:10

Exactly. And so I was like, Mom, why don't I just do this for you? And she's like, Oh, okay, like that'd be great. And so, like, I'm I can log into their account on my phone, I can go to their order history. She sent me a picture of the three that they need, added it, was there tonight between five and ten. Took me two minutes, and like she was gonna sit there for probably another two hours trying to figure out how to order it. And I don't even know if she would have ordered the right ones or charge the right card. Like when I went in there, could the one she did have in her cart was set up to go to me.

SPEAKER_02 38:37

Like, yeah, there's so many complexities. Like, and I think that's the part where we have to start these weekly meetings because I truly do believe, I don't believe that dad would knowing she's gonna struggle that hard, like force her to do it again. No, it's not like a malicious thing. I think it's intentional. I think he truly believes it's not gonna be filled for her that she can see which address she's gonna be able to check, check, check those things. But it's just like the SSI paperwork, right? Like she had been given a packet to fill out for SSI and then was denied. And so we had to go in and like digitally do it. And this thing was so complicated. We were like, there's no way that she got it.

SPEAKER_03 39:18

It took us a while to figure it out.

SPEAKER_02 39:20

And it's like the fact that my dad can't reliably understand what her capabilities are, is terrifying. As again, faraway family members, it's really hard and really frustrating. And like we're really lucky because we have another person there, like my mom's sister, who can be eyes on the ground, and thank God like she fills in gaps that my dad doesn't in terms of like being detail-oriented, knowing everything that's going on in the areas that we've helped her with. Like, she is she is the best, and I'm grateful for that because if we didn't have her there on the ground, like I would feel even worse and more scared. Yeah, I don't know. I mean, I'm glad I hope that sharing this in real time, like it feels very vulnerable to share such a personal episode like this. But I just again, like, I really have to believe that there's other people out there who are navigating these same things. And like, I hope that either like some of the ways that we're trying to solve this, like maybe trying them will work for you if you're needing ideas, or maybe just hearing that like we're going through it too is enough to comfort you and make you feel less insane. But um, yeah, I hope that this has been somewhat helpful.

SPEAKER_03 40:36

Yeah, when me and Felicia talked about this episode, we really wanted to to do it because we didn't want anyone to listen who's listening to this podcast to feel like it's not relatable. Like, that's the whole reason why I wanted to do this is to have a relatable podcast, especially going to these support groups and stuff. Like every family is screwed up for lack of a better word. Like it is a hard, hard disease. It's a lot. But we just wanted to say that, like, even though like our other episodes might say, like, oh, look at these tools, look at this stuff, and look at it, might appear that we have our stuff together, but like this episode of what we're sharing now, this is our daily life. And it doesn't stop. So I think we'll probably be doing be doing these like live updates probably once a month to kind of give you guys an inside look into what's happening. I think it will probably be a little bit delayed into like what's actually live. Like we said, this is being recorded in April of 2026, live-ish. Like, we want to document this journey in real time for everyone. And we really hope you enjoyed this episode.

SPEAKER_02 41:39

And I would also just add that like we'd want to hear your stories too. So, like, whether you want to shoot us an email or send us a message somehow, like on social media, like if this has resonated with you and you feel compelled to share too, like we would love to hear your story. We'll talk to you next time.

SPEAKER_03 41:58

Bye. If this episode resonated with you, or if someone you love is navigating an Alzheimer's diagnosis, please know you don't have to fight it alone. The Alzheimer's Association is a free 24 7 resource available to anyone who needs support. Whether you're newly diagnosed, deep in caregiving, or just trying to understand what comes next. You can reach them anytime at 1 800 272 3900. You can also reach them online at alz.org.