Alzheimer’s Caregiving: How to Divide Responsibilities and Build a Care Team

When someone you love is diagnosed with Alzheimer’s, it hits fast. In this episode, two sisters document the real mechanics of building and managing a care team for their mom, who was diagnosed with early onset Alzheimer’s in June 2025.

This isn’t a highlight reel. It’s an honest walkthrough of what they’ve tried, what’s broken, and what’s actually working, including the Skylight calendar system that gave their whole care team shared visibility, the medication tracking spreadsheet that evolved over months into something they couldn’t live without, and how they use Zoom’s remote screen access to troubleshoot tech from hundreds of miles away.

They also break down how they divide responsibilities across four people using a RACI framework borrowed from the corporate world to clarify who’s responsible, accountable, consulted, and informed. Because when you have multiple people caring for one person, communication gaps aren’t just inconvenient. They have real consequences.

And if you’re doing this alone? These tools still apply. A shared calendar, a medication spreadsheet, a Zoom session to help from afar, these aren’t team luxuries. They’re systems any caregiver can build, and they scale up the moment someone in your life says “I want to help.” This episode will give you something real to hand them.

If you’re an adult child managing a parent’s Alzheimer’s care, a spouse trying to build support around someone you love, or a solo caregiver figuring out how to hold it all together, this is a starting point. Not a perfect roadmap, but a real one.

In this episode: remote Alzheimer’s caregiving | building a care team | dividing caregiver roles | Skylight calendar for dementia | medication management | RACI for family caregiving | Zoom for remote caregiving | early onset Alzheimer’s | solo Alzheimer’s caregiver

Transcript

SPEAKER_00 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 0:19

Thank you so much for joining us today. Today we wanted to talk about what it means to build a care team for somebody that you love that has Alzheimer's, but especially with a couple of unique components like we're dealing with, which include being a remote caregiver, right? Like we've shared before, if you haven't checked out the past several episodes, we've given a lot of our personal history with our mom who has Alzheimer's. One of the dynamics of our specific situation is that both Amber and I live in different parts of New York, but that is quite far away from where our mom is in Denver. And so we've had to figure out how to be remote caretakers and how to help give ourselves and support the people who are on the ground with my mom in Denver, which include my dad and our Aunt Linda, and then some other, you know, friends and whatnot that we have in place as well. And my care team also includes the medical providers as well, but we're going to be talking more about the actual people who are either like relationally connected or who are not specifically medical caretakers that are part of a care team. So hopefully what we'll be covering today is like, how do you kind of divide and conquer responsibility? How do you protect yourself? What are different communication strategies or rhythms that we can find and get into? And I'll start by saying right off the bat what you might not want to hear, which is that we don't have all the answers. I wish that we could say, hey, here's a great roadmap because we're doing it perfectly. I don't know what you think, Amber, but I don't think that's the case. And I know there's a lot of things we've tried, and there's things that have worked out well for us that we're excited to at least share in case they inspire others. But um we've had to learn the hard way a lot, and uh we've found some good things that work, but it's definitely been a journey. What do you think?

SPEAKER_01 2:11

Yeah, I mean, we've been dealing with this for almost a year now, and we're still trying to figure out okay, let's let's add this system or let's change this, or maybe we can implement this. Like every day I feel like we're trying to get a new system in place. And luckily for me and you, like we're both very system-oriented people. So we're like, let's, you know, we'll we'll dive into it in this episode, but like, let's try this thing that works for us that at work because we both work in corporate, or like let's, you know, like start do family meetings every week, like, you know, we'll go through them, but like we're trying different things because we do still see gaps. Like, it's it's not a quick, easy fix, it's not just something like a to-do list, like, oh, we're just gonna check this off. Like, there's so many. We are basically starting to treat it as a project and and be kind of like project managers and and owners and dividing like responsibility because it's it's a hard job and we're still in the early stages that there's a lot to cover.

SPEAKER_02 3:06

There is, and well, we'll we'll go into some of those things. I think one of the things that I really value in life that I think we've taken into this um predicament that we're in is like always staying creative, right? Like just because something worked for a few months doesn't mean it's going to forever work exactly as the way that you intended it, right? Sometimes you have to layer on to things or build things or just be willing to change things. And I would say like you have to have that flexibility in mind, especially with Alzheimer's, because things can change very quickly. They can progress. Like what you were dealing with one month, the next month can take a sharp turn. And so you have to be willing to be agile and be flexible and constantly like look at, I think you have to be willing to ask yourself the question, like, what isn't working? Because if you can be really honest about that, then like Amber was saying, like, then you can put a system in place. And that's truly what we've done since the very beginning. Like, we didn't really know what we were doing or even what roles we would play from the time we got that diagnosis in June. So, what I was thinking, Amber, is like, let's kind of uh talk about what we like kind of go as chronologically as we can, or as for as for as long as it makes sense to say what happened from the time we got the diagnosis in June, and kind of how did we kind of fall into our roles and how has it changed over time? So, um, where do you where do you think what would what do you think was the first move once we got that diagnosis?

SPEAKER_01 4:37

I think from my memory, I think we were in shock like the first month, like, oh man, like what do we do? Where do we go from here? I think, you know, I started looking at clinical research studies because like I wanted to see what options those were. Um, and we did end up end up getting her connected, like they had like a consultation with um, like I think it was like Boulder, CU Boulder or something, but like they even like were like, okay, the next step is getting this MRI, and I think they wanted to do a lumbar puncture for that too, or a PET scan or something. And then suddenly it got put put on hold, like clinical research studies sometimes do. And so she never ended up going through with that. Um but like that was the first thing.

SPEAKER_02 5:15

Yeah, that's that was the first thing that you did is you started looking into all of those trials um and and figuring out if there was anything there. I also remember that you were very, you've always been for for our mom and like for this situation, you've been able to do a lot of like execution style work in terms of like, I think you got us all into her portal. We were you were able to see updates, we were able to message with her doctors, like you definitely facilitated how do we make those things happen because you knew that that was gonna be really important moving forward. And I think for me, like I I also, you know, we have different strengths and approaches. One of the first things that I immediately did was I wanted to get her with a functional medicine doctor. Um, we're gonna have a separate episode about what that has done for my mom because it's it's worth a separate conversation. But I was like, what else can we do to expand and support her physically? Like that was really important to me. Like, not, and and again, we're we'll get into it. We don't not everybody has to do that, but for me, it was really important to get that second opinion from a different um perspective of what's happening with the entire body. Um, and so we got her with a functional medicine doctor who's I've actually, my husband worked with this doctor in the past. So I was able to kind of know what to expect and had a positive experience. So that was one of the first things I did. And and that happened like that following month, kind of kicking off like getting baseline blood work, getting an evaluation. And and then that kind of led us to the next phase of what ended up being kind of challenging was just once she went and met with the functional medicine doctor, she was put on a long list of supplements along with her medication that she already takes from her from her other doctors. And so we quickly had to, over the course of several weeks, figure out how were we going to sustain her being on so many medications. Um, and I know that you had a trip planned to Denver right after that. And do you remember anything about like what was going on with how mom was already organizing some of those medications? And then, like, what did you try to do?

SPEAKER_01 7:29

Yeah. So, you know, she's was especially at that time, was still in the super early stages. So she was trying to make her own systems. And my mom is has always been like um a very creative person. Like her brain may not work exactly this the way everyone else's does. It's always like, how like as long as that works for you, that's great. But when you get Alzheimer's, what works for you is not gonna work anymore. Like, we need a system that's gonna work for everybody and that we can all kind of make sense since uh, you know, she we can't rely on on just her brain anymore. So I remember I went in there and she said she would, I I don't remember exactly, it was like kind of like those garage sale stickers, like she'd have that on, and then when she took it, a pill bottle, right? Yeah, on a pill bottle, sorry. Um, yeah, like she would like put a sticker on the pill bottle, like if she took the pills or she did it, and I was like, This this is a flawed system, like this is not sustainable. Yeah, and like she had multiple pill boxes, like she had like one that was like a little travel one, and then she had another one, and she there was just medications everywhere, they weren't they weren't like labeled at all, and I was like, Oh my goodness, like this is not gonna work. So I spent like two uh hours, hours and hours, like, and it wasn't like and I of course I was going to um uh fly out the next day for like a work event, so like I did not have like I should have gotten started on it earlier, but I started this the night before I flew out, and I like wrote down all of her medications because she has to take some of them at night, some of them during the day. And I remember like going through with my mom because my mom was doing it on her own at that time, and so I was like, all right, well, you need to put like you know, this one and this and this one and this. And I could just tell she was overwhelmed. Like it was like, I mean, it would be overwhelming for anybody. There was probably like, I don't know, 15 plus supplements plus her regular drugs, and you have to remember which ones to take at night and which ones to take in the morning. And I don't remember if at that time you, I don't think you printed any, like you didn't write it up.

SPEAKER_02 9:22

No, so so it kind of again, it's funny because it all feels like it collapses into one single moment, but it it was actually over the course of several weeks because um when you left for your work trip, there were you had told dad, like, hey, this is what the plan is moving forward. And there were several phone calls with from mom and dad to you while you were on the work trip. And I remember you calling me up the night before you're flying back to to our house. Um, it was actually like it's funny we with this sticks in our mind because the day you were flying in from your work trip, mom was also scheduled to come visit us in in September as well. And so the you you basically told me you were like, I can't do it. You called me, you're like, I cannot do it. I cannot do it. I cannot have one more phone call with dad about this medication. I can't do it. And I and I was like, all right, and this is kind of how I fell into what I feel like a big part of my role in our family is, which is like, I feel like I'm kind of like the director, which is funny because my degree is in directing, but like I kind of like I was like, I will take care of it. Like I will be the person who says, here's the exact medication list, here's what you are taking. If there's any changes to the medication, it has to run through me. Like, I'm going to like lay down the law.

SPEAKER_01 10:48

Contact Felicia, do not contact Amber. Exactly.

SPEAKER_02 10:50

Do not contact Amber. Yeah, exactly. If you have, if you need to, if you have thoughts and feelings, submit them to the director. I will manage all of that. And so um it it ended up being while she was here with visiting us for I think like a week or two. We we ended up having this system where like her pills were in like AM bags and PM bags, and we were able to start to kind of see up close during that time like where she would have trouble remembering or what she would get mixed up, or what was kind of forgotten. And that gave us more insight. And then ultimately that led to us getting like a really gigantic pillbox from Amazon that has like the AM and the PM. Yeah, it's been very helpful. Um, and then basically what we did is I created a Excel spreadsheet. And again, this has different variations, right? The first version of it I think had what is the name of the pill? It was like an AM spreadsheet and then a PM spreadsheet. And it was just what's the name of the pill in one column? How much should she take in the second column? And I think that was it. Yeah. And then over time, through more thoughts, and feelings, I had to then include a column that had a picture of the pill bottle. So we all knew we were all on the same page. And then I had to add a column over time of why is she taking that pill? Because again, more thoughts and feelings about because it does get overwhelming, especially on that medication. You can start to lose sight of why am I even doing this? But when you start to read it and you're like, oh, this helps support brain function, this helps support sleep, this helps support hormones, it helps you contextualize it and remember. Um and then I think down the road, like several months later, we even added a column for who prescribed it or what where the pharmacy is. Yeah, like now it's turned into a very complex spreadsheet because it kind of anchors everything and is the go-to document if there are other changes or if there are updates. And it's very helpful because medications do change for a variety of reasons. Like we've had a medication change due to uh insurance changes. So once insurance changes, certain medications don't get covered. So substitute medications had to come into place. Um, we've had changes just due to her own um blood like levels, things that have got had to get added. Um, some of the things that I think are hardest are the things that aren't just the pill in the pill bottle. Like um there's uh like estrogen patches have been added into the the regimen. So like those kind of things or are things that have to be taken like once every three weeks, or like, yeah, exactly. So we've we've figured it out, but um basically like yeah. Once I figured out that spreadsheet though, like what I do is once that anytime anything changes, it goes through me. I update the list. I usually cross-check it with my other eyes, like with what meeting Amber. She looks it over. And actually, honestly, like we've kind of gone through it together a lot of the times. I'll say, here's what I have. Can you go back through X person's doctor's notes, read it off to me? I cross-check it. Like, it takes a lot of triple checking because little things can get off. You know, you can say two pills instead of three pills, you can say the old the old um names could stick. Like you have to kind of stay on top of it. And so once it's done, then I email it to mom and dad and Aunt Linda for visibility and you. And then dad prints it off, and then he uses it every Saturday night when they pack their pills for the week. And that has also had some challenges over time. Um, maybe you can talk a little bit about that because I think it's good to be transparent about like like you you think on the outside that that should just be a really simple thing, like somebody just does the pills, but like sometimes we've found that like there's misses there, and like maybe you can kind of get give some insight into how we've addressed those things.

SPEAKER_01 15:12

Yeah. I think anytime there's a change, there's usually an obstacle course that we have to go through. Like it shouldn't be that big of a deal. Like, hey, she's now taking 40 milligrams instead of 20, double the pills, or something that seems like easy to us, but I we'll we'll we'll mention this very like a lot during the podcast of like everyone has different capacities, and I think changes in routine for both of my parents is very hard. So anytime there's any updates, we're like expecting like, do we need to get out of call and talk about this?

SPEAKER_02 15:41

Um, and like even like recently, she has a pill she has to take like 30 minutes before eating, and so like we have to separate that, and like that was a whole thing because like Yeah, we didn't even realize that they didn't note that in the instructions, and so we had to go back and say, like, hey, by the way, this pill needs to be separated out.

SPEAKER_01 16:02

Like it did say it on the bottle, but it wasn't being done, and so like we're also like the eyes on that.

SPEAKER_02 16:08

We usually find out about things that have gone wrong from mom, surprisingly, and that's that's I think that's a really normal part of one having a family and a care team, right? Like, I think even in situations where it was just one person with one caretaker, like there's probably plenty of things that get missed that go unsaid. But like for us, because there are is a lot more visibility, we'll hear about things like oh, like my big pills weren't there in my pill bottle. And we'll have to say, Dad, what happened? Yeah, where are these things?

SPEAKER_01 16:47

It hasn't happened for a while, but when it does happen, we do have to call them up and you know get to the bottom. Oh, I was going too fast, or I I forgot, like I'm sorry. And and like I said, it hasn't happened in a while, but like, yeah, we have to Felicia is definitely the one, like she said, like the response, like holding people accountable for one thing or something.

SPEAKER_02 17:06

I think the biggest thing that I try to, I think, I mean, this is true of assembling a care team, right? It's like nobody wants to sign up to be a caretaker like this. And if people do have that in their life, like they're probably choosing it as a job, right? They're probably working with in geriatric family medicine or they're a nurse, or they're a they're literally their profession is turned into that ability to serve others in that way. I think when it comes to your family, like we all have lives and we all don't plan on something like this coming up. And so when you're put into a situation where life makes you a caregiver, um it can, of course, you love your family. You want to do anything to protect them and be there for them. But there it, like Amber said, like it also can touch on your capacity issues and there can be natural resentments that come up or feeling like I'm not good at this, and now I have to be. Like, you know, I think sometime we'll have my dad on and probably other people on to give their perspective on this, but it can be really hard to be suddenly responsible for things that you never had to play a role at. And so I think that's one thing I've really tried to bring into all of the moments of like managing this and like trying to hold account the systems accountable is like we don't need to spend time blaming each other or getting angry at each other for what's happened. I think it's just really important to give grace, not assign blame to people and really try to stay focused on the fact that like it doesn't really matter what happened as long as we know that what happened was broken and we can improve it moving forward. And and not again, not this was so broken, it was bad. We're not assigning like the blame to it or the negative characteristic. It's just a matter of that's not supportive for our overall processes, it's not personal, exactly. And I think that's really extremely important, right? Because we're all giving ourselves and like we also don't want mom to feel like it's a burden. Like, I don't ever want her feeling like us loving her and caring for her and doing all of these things is something that she like owes back to us on anything. Like, I think she's having a hard time receiving that. But like, I mean, that's a whole other episode of like this is the least we can do for her. But that brings us to our next point, which is to how to divide and conquer in terms of roles and responsibilities. So I've talked a lot about what I do, but I mean, Amber, you have done so much for mom from afar. Can you go over some of the things that are like your responsibilities and some of the strategies that you have found that help you do what you do for mom?

SPEAKER_01 19:56

Yeah, I feel like I do a lot, but I'm sure we all feel that way because we do our own capacities. I am the executor. That's just how my natural thing that I do in my professional life and in my personal life, and have kind of naturally fallen into this role. I I get things done, you know. My friends and family have always said that. Um I like some examples of this is like even right now, my dad called me and said, like, we're trying to, you know, finish the SSI disability stuff. Like, I'm gonna give you the caseworker's number, like, you need to finish talking to her and facilitating all this. Like, he's at his capacity, he doesn't understand, he understands his limit and is doing the responsible thing and now handing it over to me to finish executing it, which I appreciate because it's gonna go a lot better for me and everyone else because I'm good at that stuff. Um, and so like I can call her during my lunch break and say, like, okay, I just got these forms or whatever. Um, like another thing I do is like I I call mom probably two or three times a day, just as like a um general check-in. Um, and there's a lot of things that like we gather and like we don't even like necessarily talk to her about it, but like, you know, it's like little flags in our brain, and then I can come talk to Felicia about it, and we can consult and say, like, okay, do we need to address this? Do we need to log it in our symptoms thing? Do we, is it nothing? And it's just a bad day. Uh oh, the other thing I do from afar is she's been seeing a mem memory therapist, which I haven't been doing this as much recently, and we need to get back to, but um, she's been seeing a memory therapist, and I'll actually work with her on FaceTime on stuff that the memory therapist does, like little games, like where it's like, okay, here's a picture of a car. What does a car start with? Like, she has to say the name, like, and then she has to like what does it start with car or what does it end with? Err. Um, and then I'm like, okay, how many syllables does it have? You know, it's like those types of games that the memory therapist is having her work on, and that we need to continue working with her. And we're using tools like FaceTime to facilitate that.

SPEAKER_02 21:56

Yeah, because you truly do so much. You also tend to be the Person who she troubleshoots with. Like when she originally did the SSI, she had filled it all out by hand herself and we never saw the forms. And then it was originally rejected by SSI. And so we had to go back through. And Amber was the one to be like, I'm going to fill these forms out, send the corrected information, assemble it all together. And um that kind of translated ended up that way because you ended up on Zoom with her trying to help her log in because she would spend hours trying to do something like that herself. And Amber usually ends up, yeah, exactly. Amber usually ends up interfacing with her while she's in the middle of a project that really somebody else should do. And Amber usually ends up taking it over and helping. And that is actually something that we're actively working and trying to change, which is how can we start the project ourselves and allow her to finish it versus the opposite, where she's expended all of this brain power doing something that has all of these steps and is very challenging for her. And then we end up finishing it. Like we need to figure out, we're trying to figure out how do you reverse that. Um then the other thing that you do is calendar.

SPEAKER_01 23:08

Oh yeah. Yeah, there's a couple of things. Just going back a little bit. Um, I just want to touch on the Zoom because that was such an important thing that I want people to be aware of. Um, it's such a great resource. Like FaceTime, for example, like somebody can share their screen, but you can't do remote remote access. And on Zoom, you can. And unfortunately, you only have 40 minutes unless you're like paying for it. So you have to be very like quick as you can. And so, like how it usually works is me and mom will start on FaceTime because she has to try to flip her screen around so I can see her Zoom. Because no matter, even if we did this every day, she has Alzheimer's, and she and I'm like, click the green button, click this. Yep, the green button, it has a circle, and she and then and like you have to try to figure out like, okay, nope, can you just read me what you see across the screen? And then she's like, Okay, I see a green button. I'm like, Yes, that one. You know, like they can't connect the dots. Um, so it takes a good 10 to 15 minutes just to get her to share her screen and allow access. But then I may I basically feel like a hacker at that point. I'm like, all right, now don't touch anything. I'm gonna get in the computer and do everything we need. And so, like, it's like a lot of times it's like, you know, you scan in those documents. I'm trying to find this this particular one. And so I'm like, it's gonna take me 10 seconds to go find that file, but it's gonna take me an hour and a half to try to explain what a desktop is because she's forgotten and how to go to what fault folder and remember where I put it. Um, so that's a huge part, like a huge resource, I would say, Zoom for getting into somebody's computer um with their access. And and and they do have to be in the earlier stages because even with my mom in the earlier stages, it is very hard for her to send as like go to her email, accept the Zoom link, open it up, share the screen. Like, so there might be having to have somebody else there, like either another caretaker or something to quickly open the Zoom for them. But um, yeah, that's been a huge resource.

SPEAKER_02 24:56

There might be a program that we could look into that just allows a person to remote as long as they have a certain access. So that might be something that we do too. Cause if you can, like you said, bypass all of those steps, yeah, that'd be helpful too.

SPEAKER_01 25:08

Yeah, I'm sure there is. Like we can't be the only people out there that are dealing with this from afar. But in the meantime, Zoom is a great question. Um and it's pretty. Um, what was the other question you asked me?

SPEAKER_02 25:20

This I said the calendar. You do all everything with a calendar.

SPEAKER_01 25:24

Yeah. Yeah. So the other thing, like Felicia mentioned, is I do everything with the calendar. So this was something that also came about in August. Um, my mom was trying to manage her own calendar, her own appointments, and we knew that was something that was not working. She was, but there's so there's two parts of this. One, she stopped using technology as much. So she had like a calendar, just like a you know, paper one you get every year on her calendar, and she was writing it. And with Alzheimer's, a lot of times what can happen is one, they forget to how to spell things, and then that's her confidence is going down, and she's feeling like I'm so stupid, which is not true, and stuff, but she's like, I can't spell anything, and she was feeling sad about that. And two, like the spacing of letters when she's spelling and stuff. So like she couldn't, she would start writing and it would go to the next day, and and then she couldn't read her handwriting, and and we were like, this isn't gonna work. We need some type of digital calendar. And the other part of that was like there was multiple times. I don't know if you remember, Felicia, it just came back to me of like she would end up going to the doctor's office the wrong day or the wrong time. And we were like, this is becoming a big blocker, like she could no longer do this herself. We didn't we need to go.

SPEAKER_02 26:27

We didn't know when anything was happening, right? It's like we would hear about it after the fact, like, well, I had a therapy I showed up and it was two hours before, and like it was it was turning into every week where things were getting mixed up. Um, and she, I mean, she had some bad luck with that too, where there's like a whole time zone thing that happened where her appointments kept getting put into a different time zone. And so yeah, we we had to that was actually a big thing for us to sit down and figure out like, how do we take this over? Because again, this is something that's just not perfect. Like, we try to tell mom, like, if you're going to Pilates and you get another appointment, just text us when the next appointment is. Like, take a picture of the card and send it to us. Like, there we try to figure out the fastest way for her to communicate it, and it does not always happen.

SPEAKER_01 27:15

But most of the time, the problem right now, I've I've learned is she still, and it's great, but not realistic. She still believes she'll remember. And so, like, she'll talk to us. She'll have a couple appointments to tell you, and I'm like, what are they? She's like, I don't remember. And I'm like, This is why you have to tell us right away. I know. I'm like, wait, but you don't know. That's the problem.

SPEAKER_02 27:35

Well, that is the thing I've been again, like I'm preaching to the choir here with you, but like I've tried to say that has not really sunk in, is like, and I it makes my heart hurt because I feel bad for her. I'm like, mom, you've been using your brain to remember things your whole life. Like, your brain has been your system, but that system is not reliable anymore. So, like, we need a different system. And we're really trying to get her to realize like, use your resources around you, like, use us, use like, well, something we change now because my mom, because that's not working.

SPEAKER_01 28:10

We've told her over and over, actually, starting today, we are changing all of the phone numbers on her doctor's offices to get to meet. Like, she went to the dentist and she changed it to where when she signs up for her next appointment, I get the text message. So that we can the reminder messages.

SPEAKER_02 28:25

Exactly.

SPEAKER_01 28:25

We're we're we don't have to worry about it. So that brings us to like what our solution was. Um, we actually ended up getting, we did a lot of research and we ended up getting the Skylight calendar. Um, this is not sponsored, although if Skylight wouldn't like to sponsor us, that's great. Um, but this is just a resource that we're sharing. Um, it's basically, I think we have like the 10-inch version. We hung it on her wall, and then it comes with an app. So me, Felicia, my dad, and my aunt Linda, everyone in the care team has access to the same app. So if she tells any one of the four of us uh uh there is a uh an update with the appointment or hey, I have you know Pilates this time next week, whatever, anybody can put it in the calendar and it'll just show up. And she has loved that. We can color co-coordinate it. Um, if there's any updates, we could put it there. Like it has been great.

SPEAKER_02 29:12

Yeah. It it is great. And I will say again, we kind of have our roles with this because while any of us can put stuff in the calendar, usually Amber is the one who puts it there or Aunt Linda. Like between Amber and Aunt Linda, they're the ones kind of managing the calendar more often. But I'm really grateful for this system because if I'm on the call with mom and she's like, oh, I think I have an appointment, like what time is it? Like, or some if some sort of thing comes up regarding the calendar, I can quickly go in on my phone and see exactly what she's seeing. And and that's again, it kind of works to support multiple functions.

SPEAKER_01 29:47

Well, yeah, and it's I mean, it's not just calendar, like we talked about like her estrogen patch earlier, like she needs to change that on Mondays and Wednesdays. We put that on the calendar. Like, she, even though she's not working, she spends a lot of time like fiddling on her computer still, and so like it's right next to that.

SPEAKER_02 30:00

So she she looks at that every day, and so we build reminders and yeah, and that's one of the things that we've found to be very helpful with Alzheimer's is like physical, like reminders and lists, like to-do lists and things. So that has been a really great strategy for us to try to keep her organized and to keep her life as consistent as possible, like while we kind of move along the journey.

SPEAKER_01 30:25

Yeah, exactly. Um anything else I do. Oh, I think just in general, like you said, like troubleshooting. Um, like if mom's like, I'm trying to do something on my phone, like I'm usually the one she calls, usually, because no offense to you and dad, but I'm usually the most patient um most days. And but I think mom knows that. And so like I'll sit there with her for quite a while and be like, no, it's not that button. No, or I'll be like, well, why don't we just you know get on FaceTime really quick so I can share a screen? Like, I don't maybe I'm assuming that's why maybe she just wants to talk to me. I don't know. But either way, she she knows to call me if she's trying to troubleshoot something, and um, so I do a lot a lot of that with her.

SPEAKER_02 31:08

I think it's also because of your availability, like a lot of times with my life, like I'm just juggling multiple things at once. So it's hard for me to drop everything in that moment to help out. And that's kind of what she needs, is like she does kind of need somebody who can drop everything and help. Um, and you've been really good about doing that. Like, if you're in the middle of something else, like you tend to be able to like set those things aside. Um, and I wish I could. Like, it's one of those things that like I've had to have some self-acceptance about like what I can offer because it is much harder to be like, I'm sorry, I'm on like right in the middle of bath time, but like we let's hop on a Zoom. Like, I don't have that same availability.

SPEAKER_01 31:48

Yeah, that is that is true.

SPEAKER_02 31:51

But yeah, but I will say, like, one of the things that I tell you often, and I think is also important for all listeners of this, is like, I think it's really important to check in with each other and remember that like just because you started being the person to handle a certain project doesn't mean you have to remain that person if it's no longer working out for you. And like that was certainly the case with the medications, like when you reached that point and you were like, I'm not doing this anymore, like somebody else has to take over this part of it. Like there wasn't that wasn't a problem. And I think that's something that we've had to talk about with with dad as well, and like why like we're so grateful we have Aunt Linda there, also because um sometimes like one person can't be the only one who accompanies to every single appointment. Um, like we found it really helpful for mom that there's a few appointments in doctors that my Aunt Linda always goes to with my mom versus my dad, handle the different like the neurologist appointments. And we kind of they've kind of divided and conquered in that way. And it's been, I think that's been a really helpful piece just to kind of spread um not only the like the workload of that out or like the amount of tasks, but also just to get different ears and eyes on different pieces of the puzzle. Like, I think that's one of the most important things that I'm just really grateful for in our situation. We have so many people involved. Um, we we try to zoom in to as many appointments as possible, or like it's not we don't need to do it as much if my my aunt attends the phone calls because or the the meetings because she is very detail oriented and makes notes, sends them out, like awesome. Exactly. Um, but we've we've just found that like dividing and conquering is a really important strategy because one person trying to do everything can start to feel really overwhelming and and nearly impossible, especially if you're trying to do many things, which which we are, especially I think due to mom's age, like we've got a lot of different components going on.

SPEAKER_01 34:04

Yeah. And like I go to a couple different Alzheimer caregiver support groups a month. And I gotta say, we're very lucky to have so many people on our care team. Like they're like just having a sister who cares, people are like, oh my god, you should treasure her. Like they would die to have just one of their siblings help with them. Like they're so overwhelmed, you know? And I honestly don't know. I can't think of anything else that has this many people on their care team. And I will say, like, everyone, like, I don't know anybody in the in the support group that has people in the early stages, like their their loved one. Um, and maybe when they were in the earlier stages, they had more of a care group, and as things progressed, I have no idea the the backstory. But I what I will say is a theme that I've heard quite often is that they are the only one. And I remember this one guy, um, something that really stook out to me because everyone kept saying, like, I I I had to beg somebody just to come here, like, go here for this hour so I can come to this appointment. Like, I I'm all alone. Like, does anyone have any suggestions? And this guy said, Like, I've been doing this for a while. Like, you know, you hear a lot of times you say, like, oh yeah, my wife has Alzheimer's, and people say, I'm so sorry. If there's anything I can do, let me know. Like people say that as like just like a phrase. But he's like, Do you mean that I'm adding you to this list that I have? I don't know, I'm assuming it's like on our phone or something. He's like, I have a list of people who I will call. Like, if you are serious and you want to help, I need an hour here and there to take a shower or go to the grocery store or go to an appointment. Like, I but like my wife is at a point where she can't be left alone. So, like, if you're willing to come over and watch some TV with her, play, do a puzzle, or talk to her, like I'll add you to this list. And he's like, It like you cannot do everything at once. You can't. It is impossible. Like, if there's people at your church, if there's people at your your work, whatever that are willing to help, take them up on that.

SPEAKER_02 35:54

Say yes, yeah.

SPEAKER_01 35:55

Say yes.

SPEAKER_02 35:55

Gosh, I think that's I think that's uh an incredible suggestion. And it did give me one other thought that I think it's worth sharing, which is like anything that can make your life easier, do it. So, like one of the things like in that situation, don't be afraid to use things like shipped um or like target delivery or like pickup orders, right? Like it can be very difficult if you are still committed to like going to the grocery store with your person and like bringing them through all the aisles. Like, if that's no longer working, like figure out how to do your grocery pickup. There's so many stores. Target does pick up, like um Costco, Sam's Club, like every they're almost everywhere nowadays has a version where they'll bring it out to your car, you can place an order or even have it delivered to your house. Um, even things like Instacart for for grocery delivery, like or Amazon. Um or Amazon, exactly. And and we've had to use that too, where like, mom, do you need something? Like, let's get it to you. Like just trying to simplify as much as you can. Um, although, I mean, there are a lot of systems out there now who that can help you in that way, but nothing really beats the support of a of a person who's in this with you. And I think that really matters. And as much as we are interacting with mom and supporting mom through either appointments or I mean, a lot of a lot of what we have to do as a care team is just be willing to communicate and and be willing to disagree. Like we do not all see things the same way. I mean, even as aligned as Amber and I are, like we um process a lot of this together. Like there are things where it's like, I don't know if I totally agree with your approach or what what your preference is on that. And usually being able to talk it out allows us to arrive somewhere in the middle, which is probably a more balanced approach. Um, even now, like sometimes we don't agree about, like as between the four of us, about all of the medications that mom is on. Like we still go like ring around the rosies about does she need it, are these supplements even helping? And like that's a whole, again, a whole other conversation. Um, but as as hard as that can be in the moment, it's like something I'm extremely grateful for because, like, again, how awesome that people care so much about this person that they're willing to argue with each other about what they think is best for her. And that just shows like that there's a lot of love there. And um, I'm really grateful for that that we're not in it alone. And we we really try to like from afar, like we've talked about like strategies of you can do from afar, is like find ways to like say thank you to the people who are there on the ground. Like, we just sent my aunt a gift card the other day because there was an incident that happened where my mom had to go to the emergency room, and um my aunt had to drive up from where she was 45 minutes in the snow to go be with her. And we were just like, like, thank you. Thank you so much for being able to be there. Cause like we can't just hop on a plane at the last second for things like that. And it's so hard to not be there, and we're just so grateful for that. So, like between her and my dad and my best friend Amber, who was able to take her to the hospital and go pick her up and check on her, like, I think that's another piece of being part of that care team, right?

SPEAKER_01 39:19

We're still figuring out the best way is to communicate with each other and stuff. We've been noticing like big communication gaps, even whether it's like, well, notice my mom will like repeat the same stories to each of us, like thinking like, oh, I thought I told you, but like she've told Felicia that five times. And and so, like, it's important for all of us to communicate. Like, like we heard like a story from my mom the other day that we're like, oh, is this starting the next like progression of this disease, or is this just like a one-off event? Do we like we needed to all communicate like and hear these stories and make sure everyone's aware so that way if it becomes a pattern of behavior, we know kind of the next steps to take. And so we're like, we need a way to all communicate with each other. And um, especially with my dad, is he's the one, you know, living with her and stuff. And so we decided we should start having weekly family meetings, 15 minutes minimum. Um, and some weeks might be nothing, might just be like, how how is everyone doing emotionally? Like, does anyone need anything? It might just be as easy as that. And we're gonna say, I'm good, this week has been good, you know. My dad can say, like, yep, your your mom has been great, she is eating really well, or whatever. She can he can give us updates. And we can say, like, well, like that's great. Like, we've also noticed this on the phone because we talked to her every day, or oh, we noticed she was struggling with this this week, which is abnormal, or whatever, you know, just to get everyone on the same page. Like, we also want to go over like any appointments that are coming up. Like, we had an issue where like my dad drove to the wrong doctor's office. Like, so just like making sure everyone is like aware and and and knows what's happening. Um, or like if there's any issues or blockers, be like, hey, this isn't working, let's all brainstorm better ways to get this again, not blaming. We don't care about whose problem is, we don't care about the past. We just want to figure out the best way moving forward. Um, so like let's let's figure out how to do that. So we just had our first meeting last week. Um, and we're gonna continue that this week and going forward. So, you know, in in one of our live updates that we do, we'll update you guys on how that's going and how that's evolved, because I'm sure it will. Um, but the other thing with that, we're actually going to present to my dad probably this week is I don't know how many of you listening are in the corporate world, but something in my corporate job that we use is called a racy. It's R-A-C-I. It stands for responsible, accountable, consulted, and informed. And basically it's a spreadsheet or a table that has like um who, like the R A C I at the top, and then who is like and then the task on the left, and then who's responsible for that task, who's accountable for that task, consulted, informed, so on and so forth. And I think for having like if there was just two of us, if it was me and Felicia only, we probably wouldn't need that. But because there's four of us on this care team, we really wanted to have it just laid out of like who's who's responsible for what? Let's make sure no gaps are are are there. Let's make sure if something does drop, we we know, like, hey, you're responsible for this. What support do you need to make sure this is executed better in the future? Like it's just it's it's just another resource for us that I think will really help.

SPEAKER_02 42:20

I think it's also extremely important because the consulted piece is a really important piece of the puzzle too. Like if you're if you're making the decision on how you're gonna do it and how you're gonna hold yourself accountable, like you might be missing part of the picture. So it kind of goes back to that whole idea of like getting outside opinions. And I I would say that that's one of the most important things you can do is get somebody else's opinion on what it is, because they might say, like, why are you complicating it? Like we've had that across the board, all of us. Like, why are you complicating it? And you're like, Oh, I didn't think it could be simplified until you somebody else tells you that it could. And so I think that's another piece of it that's super important is just that consulted piece. And then, like you said, also is like the informed part. Like, who else needs to know about this change? Because it takes a village. Communication is key.

SPEAKER_01 43:11

Yeah.

SPEAKER_02 43:11

Are there any other pieces of um strategies you wanted to make sure that we shared?

SPEAKER_01 43:17

Well, I'll update you all again, probably one of the next live updates. Right before we started recording this podcast, I'm I'm starting to build, I'm trying to use the Notion platform, if any of you have heard of it. Um, it's basically, I think it started out like I remember using it in college a decade ago for like note-taking, and now it like has AI integrated into it. And you can do tables and calendars. And I basically want to create a dashboard for all of her care that will have links to her portal with her username and passwords, a folder with all of her test results, like basically a one-stop shop for everything I think will be really helpful. And it's very overwhelming because, like, I mean, all of us are dealing with our own medical stuff, our own lives, like, and now we're having to do another person's everything. So, um, just not having to remember what is where and who has the passwords to this, and and oh, can you send me that test result? Just having a one place that everyone can reference, I think is gonna be really helpful, and I'll I'll let you guys know if that is successful for us.

SPEAKER_02 44:17

Yeah, I think, I mean, I'm so grateful you're doing that because I think the one of the most important things when it comes to having a care team is like really asking yourself like what's sustainable. And so the a lot of these systems and processes that we've talked about are really just about how can I do all of this in a sustainable fashion. Um, so I think that's really important to keep in mind. And there's I hope that as you've kind of heard us talk about a lot of different ways that we've strategies that we've tried, ways we've tried to approach it, um, that you're that you're kind of maybe got some ideas that you hadn't thought about. I also hope that you know, like if you are in the situation where like you feel like you have limited support, there are there are other things that like we haven't gotten to the stages where we've learned a lot about like things like um hired help, like geriatric managers. I'm not sure exactly what they do, or there's social workers that can help support. You know, you you don't have to do it all alone because like Amber said, like it's a lot to manage. And I think that the people that we love that have Alzheimer's, like they can feel stress, they can feel um emotions, even if they can't, they no longer have words to describe it or can't necessarily use their cognitive power to say why they feel uncomfortable. So anything you can do to take care of yourselves that you can show up more present, more holy, more more loving to them, like hopefully some of these strategies and ideas help you to do that.

SPEAKER_01 45:45

So remember the Alzheimer's Association. When in doubt, give them a call 24-7, free resource. If you're like, I don't, I can't do this anymore. I need, I need an I need an idea. They will help.

SPEAKER_02 45:56

Exactly. So remember that. Remember to say yes to the people who are willing to do something for you. And and also, you know, think of some of the ideas that we've talked about, whether it's picking up groceries or perform like playing a short game or are or helping with the Zoom thing. There's so many things that you um, like even if you ask somebody, hey, can you help with this? Like, hopefully there'll be somebody there who'd be like, Yeah, that's no problem. I'd be happy to do that. Like, I think people are more willing to help than sometimes we can feel they are when we're in the overwhelm, when we're in the all of the anxiety, or we're in the the very limited bandwidth. So do what you can to take care of yourself while you also take care of your loved one. All right, guys, that's it for today. We'll be continuing to share this journey, our experience. We're gonna be diving into many more topics in future episodes. So hope to have you join us again then. Bye-bye.

SPEAKER_01 46:48

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.

SPEAKER_00 47:05

You can reach them anytime at 1 800 272 3900.

SPEAKER_01 47:11

You can also reach them online at alz.org.