The Universe Has The Best Clickbait

You ever get those annoying, annoying little boxes on the side of your email or they pop up while you're scrolling on social media. Hey, you should friend this person. Oh, we know you're going to love this rug. You should buy this car. Excuse me, you don't damn know me. I don't ever click on that stuff. Okay, ever is a little strong. We all fall for a little clickbait. But most of the time I ignore that crap because I cannot stand a possible chance of getting a little virus on my little computer. But you know, sometimes it's late at night we all caregivers. Then what you going to do? You scrolling and you get caught and you click on that thing that says just the best wine you ever tasted, and then you go down a dark hole. But you don't really know when it's going in. What about if you are a caregiver and you're like what the hell? How come my daddy wants to make me strangle?

him.

But I don't want to strangle him. How come I'm the only one going through this? Somebody else must be up feeling this, like I'm feeling it. And then they say, hey, click, click, right here. You on the ground, click right here. You should friend this person. And then you click it because it's two o'clock in the morning and you about to go crazy anyway, so why the hell not? And you do click it. And then, and then that person is on the other side of the world and they, mama, got the same kind of dementia and they also About to lose it. And before you know it, y'all locking hands and you are going across the clouds, tip towing and fancy dancing and trying to figure out how to make things work. Yeah, only here on the Faraday Napa, because something like that happened and we found just them right here. Come on, y'all, come on, listen with me. They make it up. Parenting up caregiving adventures with comedian Daysmiles is the intense journey of unexpectedly being fully responsible for my mama. For over a decade I've been chipping away at the unknown, advocating for her and pushing Alzheimer's awareness on anyone and anything with a heartbeat. Spoiler alert I started comedy because this is so heavy, so be ready for the jokes Caregiver newbies, ogs and village members just willing to prop up a caregiver. You are in the right place. Hi, this is Zeddy. I hope you enjoy my daughter's podcast. Is that okay? What's up y'all? Season four, episode two the universe has the best clickbait. Our parenting up community is growing so fast I can't put out a episode as fast as we're growing. So text podcast to 404-737-1449 for updates, exclusives and suggestions on topics. While you're at it, share an episode with a caregiver you know you on Apple podcast and follow us on social media. Subscribe to our YouTube page, please.

It really helps.

Today's sponsor is the outside been open tour DC, Chicago, New York, Houston, Atlanta. You better get your tickets. Parenting up community. We're about to get into something very, very special. It is a dynamic duo of chicks who also podcast. I know. I know You're like Jay smiles there. You go again Finding more and more people to talk about this stuff. That's what I do. So it is Maria and Rachel from the remember me podcast. Welcome, Maria.

Thank you so much for having me.

Now, rachel isn't with us today, but I know that you can fly solo with lots of confidence, bells, whistles and bits of information.

Of course I got this.

How did you come to have a podcast in the first place? I mean, there's so many podcasts out there. Yeah, I know, I know what is it that I feel the same way. Yeah, I know your story that you said you know what I got to share it. I have something to say.

So I will say that I studied radio, tv and college. This was a passion of mine, not one that I was really putting to practice. I had fallen into other jobs and things and actually my mom had always taught me that one of the greatest healing things you can do is be creative and channel your creativity. So I was caring for my mom, who was 52, who had just been diagnosed with FTD and ALS the double whammy and I was just feeling so alone in the journey I was barely getting through, barely getting through my job. I was pregnant with my first son, I was newly married and it was wild. And a couple of years into the caregiving journey, the pandemic happens and I'm like I just really need to channel this creativity. I need an outlet, I need people to know what I'm going through, I need to do something about this, and so that's kind of where I fell into the podcast. I kind of took some things that I loved and my form of art and I was like I'm going to make a podcast about this. And the crazy thing is and I know people think this is wild but Rachel and I did not know each other. We were just following each other on Instagram, you know how you follow people and you kind of think you know them, but we didn't actually know each other. So I had searched on Instagram for people talking about FTD. I had searched FTD hashtags and I found her and she was talking about her dad and she's a really beautiful writer. So she'd write these long captions with, like, a picture of her dad at the assisted living facility and I just felt very connected to her, but I did not know her, as I'm sure there's a lot of people that probably feel very connected to you, right.

I guess I don't know because I haven't met them for real Maria, but when you say FTD, we're talking about frontal temporal dementia. Yes, not the florist.

Not the flower delivery service. Not the flower delivery service.

And I also want to ask you do you have siblings? I do.

Okay, I do, I have three.

You have three, and what decade of life were you in when your mom was diagnosed with these two whammies? That's two big whammies, oh yeah and FTD, neither of which have cures.

Yep, I was in my 20s. Yep, I was in the supposed honeymoon stage of just newly married to my wonderful Long time partner. Yeah, and I'm the oldest, so I actually one of my sisters was still in high school. Yeah, it was. It's a rough time to have this trauma kind of just settle right in.

Yeah, yeah, your mom. Did your mom have any visible signs for a long time? Did she live? I guess my point is did it sneak up on you as a family? Yeah, Because she wasn't near you and maybe you didn't see her, or had it been creeping up and you just didn't quite know what that eye blinking was or what her foot dragging happened to me.

So her initial symptoms were a language issues and there were physical language problems that were the ALS, and there were like word recognition issues and like forming speech issues. Like that were the frontal temporal dementia. So she was like a very eloquent person that was suddenly using very simple words or forgetting words or just responding in just like very curt ways, which was not her personality or just her way of you know, her way of communicating. She also Greek was her first language and she like suddenly could not speak Greek to her family and I think she was in that time of her life where her kids were kind of all leaving the nest. You know, menopause, like people are starting to explain things as like, well, maybe she's depressed, maybe it's midlife crisis, you know, trying to explain, they thought her slurred speech was drinking, which it wasn't, and I think actually you said something about oh, maybe you live far away and so like you didn't really have a pulse on it. We actually live close and I think, because the changes were so itty bitty over time and we were with her all the time, I don't think we noticed it as much as, say, a family member that would fly in for a special occasion and see a drastic difference from the last time they saw her. But the initial symptoms were so subtle that we had no idea what FTD was. Who even knows what that is? So we didn't, we didn't know, and I think it just literally got to a place where it did creep up on us. I felt like I could no longer have a conversation with my mother, and my dad was like I got to take her to the doctor and see what's going on here, and that's where we got the double whammy. And my dad had reported that he could feel twitching in my mom's arms at night when she was sleeping, and that was one of the things that tipped them off to okay, we got to do the ALS testing as well. It was you know how. Like you think your life is one way and then you wake up and you're like oh wait, because I know you've you've been through a lot, and so you know how. You just like wake up one day and you're like my life is completely different. That's how it was and it was shocking. And I'm like 26. Like, how is this happening?

Yeah, I'm over here. I think I lost my a-her for a little bit and I could not get any words to even interject 42 seconds ago. I have a witness under my armpits having a bit of flashbacks from my personal experience of that the sky falling and breaking and what you're describing. Did you go to the primary care doctor first and then they just sent your parents to a number of specialists?

Yeah, so we're pretty fortunate. We live in Boston where there's pretty top notch medical care, and my dad so I wasn't a part of the initial visits actually because I think my dad and my mom were kind of trying to protect us kids, trying to figure out what they were dealing with before they said anything, even though we all knew you always know there's something, isn't that crazy? Yeah, kids can feel it, even like my son when he was so little he knew things were different, you know. But yeah, I think they initially went to the primary care doctor and you know the clock test they do. They did like a. They did that test and some basic tests I think they do also for Alzheimer's, and she could not draw a clock, she couldn't remember. They'd say like a word and then you know five minutes later be like what was that word and it wasn't memory for her but it was her processing.

For those of you who might not be familiar with the clock test, a fairly standard, at least in the United States, a fairly standard exam for any primary care physician, definitely for neurologist, and when they're trying to see how you're doing as an adult, they will ask you to draw an analog clock. So you and they'll say, you know, draw a clock and make it say 2pm, yeah, or just 2 o'clock, it doesn't matter if it's am or pm, I guess and you're supposed to draw a circle, place all the numbers you know from 12, you know one o'clock, all the way back to 12, and then you should draw this, the long hand and the second hand, appropriately. And it tells them pretty quickly if a person is having difficulty with their cognitive functioning. And depending upon if. First thing is is it even a circle? Can they draw a circle? Another thing is do they place the numbers, do they even write one to 12? Do they put those numbers at all anywhere on the page? Do they space them the right way, correct? Do they space them in the circle, the way a clock should be spaced? And then, heaven forbid, do you actually put the short hand by the pointing to the two, and then the longer hand pointing to the 12 that, believe it or not, that is a lot of high level cognitive processing, neurologically, and what Maria is sharing with us is that her mom did not draw the clock.

I don't even think she could start, I don't think she could follow any direction. It's crazy, though, like when I tell you that she was functioning in the world, like to other people, like she couldn't tell she was sick, like, but then I tell you that my dad brought her and that happened. It sounds crazy, but I do think that a lot of people with FTD, especially with their age, they fly under the radar, but that was a big moment for my dad to visually see like we Right, okay, there's something here.

Did they go that they start testing? Wait, let me say this over what was the time lapse between? Okay, we think this is FTD. No, let me back up even further. What made them decide from the clock to something else? For FTD, because my mom couldn't draw the clock either, but they ended up going down a series of tests that led to Alzheimer's.

So from the PCP they were referred to a neurologist and this is a couple neurologist appointments. In is where I, as the oldest sibling, was like I'm attending all of these, so put them on my calendar and I don't care what you say, I'm going to these and the neurologist. The way that they're able to tell that it's FTD is she had no, she was someone with a high level of education, which I know your mom is like. We could do a whole episode, I'm sure you have, about your mom and her incredible accomplishments. My mom had like a high level of education, could not form words or her vocabulary was very limited and but you know I should resay that she. I think the way that they could tell is, honestly, probably by the scans she had atrophy in her frontal lobe, but what I think led them to do those tests tests were that her age and the language issues that she was having. It wasn't, as we do hear some Alzheimer's stories early on to Alzheimer's stories on our podcast and a lot of times. You know they still can communicate pretty well but are having memory challenges. But this was different. It was presenting almost as if maybe she had had a stroke and so they did do all of the you know the MRI, I think, a PET scan, and they could see the atrophy in her frontal lobe. And let me just say too, she was in a top hospital where they knew what to look for, they knew what FTD was and they knew they could tell some markers. Also, some things like subtle things Again, like is she not making as many outgoing phone calls? Is she acting apathetic? Those kinds of screening questions. But, like I said, they're very highly skilled. You know experts in FTD so they knew to look for it. But this is not a typical story. In many ways we're very lucky.

Understood. Did you have to fight with dad or mom to insert yourself on those initial visits? Yes, I had that go. How did you do it Like, did you?

do it. I mean, I'm the oldest child. It's just in me I don't know. Wow, putting myself back there. I mean I just didn't take no for an answer. I wasn't going to let my parents do this alone. My mom was like my best friend. I really wanted answers too, because I had gotten to a place where I was like why doesn't my mom like me anymore? Why isn't she texting me? Why aren't we? Why is she acting differently? Like I wanted to know and I wanted to be there to support my parents. I don't know, it's just something. I don't know if it's the oldest child thing or if it's just who my parents are and how I felt about them. But yeah, there are a lot of discussions of like you shouldn't come to this. As soon as my mom got her diagnosis, my husband looked at me and said you're going to want to move in with them, right, and I said yep, and my dad said no, you shouldn't do this, you're young. I said sorry, we're moving in. Did you move in? I did.

Did you move your whole family in?

At the time it was just me and my husband and we moved out of our keelol apartment in Boston. And yeah, we moved in.

So yay to the husband as well.

Oh yeah, he's, he's the best, but he also knew, just like my parents knew, like she. She's not. This is what she's going to do, so might as well just accept it.

Stop, don't fight her as well. Let's just go and try to fight the disease. No one should fight Maria. Yes, get out of my way so okay, and how much time passed loosely, you know? Are we talking months or a year before they started testing to say okay, this is more than FTD?

I think at the center she was at, it was both FTD and ALS center. So I think it was pretty quick, soon after, I would say, but they did actually leave that hospital and go to another. Because when you get a terminal diagnosis like that, I think my dad was like I'd like a second opinion and so I think from the time of maybe that initial PCP visit to confirmed FTD, confirmed ALS and again, this is because all the stars aligned and we were in Boston, I think it was six or seven months, that's short.

Yes, it is.

Yeah.

I mean, that's almost like as short as a Catholic mass. That's what that's the same as like comparing, you know, a Baptist Easter service to a Catholic microwave mass. I'm Catholic, I remember I may not practice as fiercely at night once did, but you know we can. We can have a 12 minute mass on a Wednesday, just on a regular June day. That's pretty quick.

Yeah, I'm Greek Orthodox and we don't do anything quick. It's a two hour mass every Sunday.

Yeah, now, on Sundays it won't be. It won't be that short, but if you're talking about a Saturday mass or during the week, because the goal is just come in and get your prayers and get back to work, that's the notion of we just want you to go on and get in here.

But what is the express?

Yeah, yes, absolutely, absolutely Okay. So then you, you determine that you're going to do this podcast. You find Rachel. Well, you find Rachel first.

I find Rachel first and I follow her for, let's say, six, nine months, okay, and she's caring for her dad and I'm seeing these beautiful photos and reading about her journey. And I wasn't posting a lot of photos of my mom, but what I was doing was posting my mom's art, because my mom was an artist and so I post about FTD and post facts about FTD, and then I'd also post her artwork and so she followed. You know, kind of what I was trying to do for the cause, but not a lot of communication, just like you know, liking things, kind of. What was the art? My mom was a mixed media artist, so she did all different types of art but she did a lot of collage and a lot of like doodling. It's all very colorful and beautiful. I should have some like right behind me to show. But yeah, I was just posting her really colorful pieces just to like get people's attention, and then, like the next day, I'd be like here's a fact about FTD. So, and I think people, I think I started to form some like internet friends in the community. You know, we all just kind of it felt nice to be like I'm not the only one going through this, because it feels like I'm the only one going through this and so we all just kind of followed each other and liked things, and then and then and then. One day I was like I'm sick of this, I can't. I need people to know what's going on, I need a project. I know this sounds probably kind of silly, but like there was this meme during the pandemic that was like. Just remember, like during the plague is when Shakespeare wrote King Lear. Did you ever see that. I did not see that meme, but I would love you to send it to me, because that's very I was like, okay, like that stuck with me, like yes, we're in this, like I'm talking, like this was like the lockdown period, like you were wiping your groceries off with a antibacterial wipe, like that phase where it felt like we're never going to go outside again and the world, the walls, were closing in. And I saw that and I was like maybe I could do something right now, like maybe I could make something happen. I mean, of course, you never know when you set out to do something like what it's going to turn out into. But for me it was like I just want to do a project, and then I posted on my little Instagram that I have my mom's art on and I said I want to do a project, does anyone want to do it with me? And Rachel DM comes up and kind of the rest of history. I mean, we did not know each other though.

Like did you know the project would be a pocket? Okay, so did Rachel say hey, I want to do a project too, and the project is a podcast.

I posted and we actually have this like on our website. We have like a blog. That's like it all starts with an idea and it has like the screenshots of her messaging me and replying to my story. I knew I wanted to do a podcast. I the original concept for the podcast was too technical and I was like I just what I really want people to know is I want people to know how much my mom has changed and I want them to remember her for who she was before. So I just put out there I want to do this project telling stories of FTD. Is anyone interested in sharing their story? And that's when Rachel immediately replied and we started. I started kind of telling her the concept and I I think the the thought was that maybe she would be my first guest, but we got on a zoom and I don't know I think it was fate Her boys were tackling her in the background. Again, this is like when you're not allowed to go outside. So like her kids are so crazy my two year olds like crawling on my back and she's telling me about her dad and I'm telling her about my mom and like I don't have to really explain too much Everything she's saying I'm nodding, Everything I'm saying she's nodding. And I called her a couple of days later and I was like, do you want to be my co-host? And she was like, okay, I'm truly. This is how it began.

So, rachel's father has FTD.

He had. Yes, yes, had FTD.

Where is she based? She's in LA. She's in LA and prior to meeting Was her father also in heaven, already before the podcast started. Now our parents are both alive when you started. Yeah, how was that? You start the podcast with them alive. Then they get their wings, which is their wings. You're on the parenting podcast, they get their wings. The podcast continues. That's a major shift in perspective.

How was?

Rachel handle that.

Yeah, that was. That was a big turning point, I think, in our podcast, in our listenership. So we've launched the podcast in August of 2020, which August 3rd, which is my mom's birthday. So this is crazy Rachel's dad got his wings November 20th, or sorry, november 10th 2020. And my mom December 11th 2020. And leading up, you know we were producing the podcast every week or every two weeks. I mean, we didn't really have like much of a listener base. It was starting. But you know, people were very excited to find us and have Feel like they weren't alone. But then, I think, after our parents passed and we kind of like took a couple week break, we were like, what do we do now? Like, do we keep doing this? Like? And I think the resounding loud answer in our guts was like yes, you have to. And it became again like a healing thing for us. And we started back up in January and we told the stories of I couldn't get into much detail of my mom's because I was still very traumatized. It wasn't a traumatizing like it wasn't, it was a very peaceful passing, but it still was traumatizing for me. But Rachel walked us through like everything that happened with her dad and on the podcast, we started kind of documenting our grief journey and I think our friendship really grew in that time because we're both grieving our parents who had passed like one month apart, so we really like knew what the other one was like going through and so our bond strengthened. I think people really connected with our stories, even if they didn't, they weren't on an FTD journey. They connected with the grief and I think it just fueled, like our parents passing just like fuel this fire to just like let's blow this up, blow this up and, yeah, I love it.

How have you helped people normalize grief? Specifically, when you're dealing with you have a young kid, she has young children. You have parents with a disease that you know. You know it's going to get the best of them sooner than later. So you're in this thing called the sandwich generation.

Yeah.

And you're trying, you're handling grief, you're telling stories about it, you're trying to help others this you know managing coping with grief with adults and kids. How, how, how have you helped people really Get to manage that thing?

Yeah, I think honestly it's somewhat simple but it is challenging for us. I mean, we have to be vulnerable, we talk about it period, like we don't shy away. I think we try and kind of knock down these preconceived notions that you know there's stages of grief that you go in order, that you know I think our, our parents generation was very much like no adult problems are for adults and don't talk to kids about you know, the things that are happening. We're very honest with our kids and honest with our listeners about what we're telling our kids. We just share a lot about what we're going through in the ups and downs of it all and I think that's what's helping normalize. It is like Sometimes I talk about how, like one day I went on stories and I was like I'm in a Starbucks right now working and there's a mom and daughter sitting next to me and they're giggling and like talking about you know, gossiping, whatever, having so much fun and today it made me smile. Tomorrow or another day or another song was playing in the background. You don't know I could have been balling seeing the two of them sitting there. But I think, just talking about the complexities and just breaking down like these stereotypes we have about grief, I think, is what is helping people feel less alone is, you know, just just getting out there and talking about it. And I think, too like for me it was helpful when we had someone come on the podcast and talk about her mom's passing, before my mom passed, and all the grief that she went through. I remember being at my mom's bedside when my mom was passing and remembering this girl's story and the things that she said, and so I think, you know, just hearing someone else going through it, I just it sounds simple, but that's what it is. It's just talking about it, you know, and not shying away from it and not trying to wrap it up with a nice little positive bow. You know, sometimes it's dark and that's the truth. Yes, yes.

My grandmother. She did not have any form of dementia, she succumbed to cancer and that was what her side of the family was Known for, but on bomb and good cooking and cooking the two C's so. But she Believed in sharing A softer Said version of the hard truth with children. So she was the one I probably. I got my menstrual cycle when I was eight, so by the time I was 11, I really knew where kids came from and she told me about sex, drugs and rock and roll and she always said I don't want she called me baby J, I don't want baby J to learn in the street, because what if what she's told is in the right? And what if what she's told is incorrect? And then she believes it and, you know, goes out and is misled and makes even poorer decisions With bad information. So now, when it came to Kind of grief or matters of the heart and money, she didn't tell me every single bit. But I can recall her Going to toe, toe to toe or taken to task the other adults To say we can't keep everything from the kids, or we shouldn't. At least you know how are we going to Filter this information to tell them something.

It goes on this happening, because they do, they can feel it yeah they can.

They can totally, totally feel it. I know the tag of the Remember Me podcast is Accept the Good. Yes, how did you come up with that?

So that all the credit goes to Rachel and her dad. So this is something we put in our intro when we first put out the podcast, and it was just a nod to Rachel's dad. He would always tell her as a little girl they had a very, very close relationship and he would say, just, you know, in tough situations he'd say accept the good. You know, this state didn't turn out exactly how he planned, but what was the bright spot? And it's just all about looking for the light, because there is, and it's not a toxic positivity thing, it's a, it's reality, it's. It's some days it's very hard to find the light, but it's there and if you can shift your mindset when you're grieving or caring for a loved one to just try and find a little pocket of something to hold on to, it will carry you through. So we talk a lot, a lot, about Accept the Good. We just didn't accept the good. Challenge two in July and it was like so amazing to see how many people did it and like it would be like I was able to get my mom outside for a walk today. It was only five minutes, but she saw some sun, or you know, I got to go have ice cream, my dad's favorite ice cream that we used to always get together, and I thought of him like just these little moments, you know, and just trying to hang on to that Very powerful.

Those are things we can control.

Yes, that's what I don't you can control when you're dealing with a loved one with dementia. There's not. Most things are out of your control. So correct, but I can't control.

Accepting the good. Yes, there is some slice of good that I can find in each moment. I had the honor and pleasure very recently of Holding visual over one of my best friend's mom as she transitioned in hospice. I'm going to try to hold it together this moment, but I believe that would fall under and accept the good challenge, and I want you to let me know if I would. If this would qualify Maria. Yes, so we go from. She has a very bad Episode about two am one morning, nine one one is called. She goes to the hospital they live in a different state Then she's in the house in a standard room for about two days. Then she goes to ICU for about two days and then she goes to hospice. She ends up in hospice for about a week and then she gains her wings. So that's the wrap up. We don't really know it's about to happen that fast. We know she doesn't have five years left, but we don't know when she goes to the hospital that it's going to be less than a week and she's never going home. Nobody knows that. The doctors don't even suggest that Level of speed. So we're there. So we're there and I'm going to give you three good things, ok. First good thing was that this hospital had hospice in it. Wow, who I didn't know you could do that.

I didn't know that either.

It was a major medical center and sometime in the recent past I mean, you know, not 20 years ago, but in the last two, three, four, five years they took one floor of one wing and converted it into hospice. Wow, that's the first thing. So once the family decided, they just wheeled her through some underground corridor almost like you know, that was built as a bunker for his World War One and took her. That's, uh, accepting the good, ok. Another one was they had a room available. You know, hospice, you don't know where, that's not a room, you know, sometimes it's not a room. They had a private room available and there was no limit on how many people could come in. Oh, wow, or what day or day or time, just 24, seven.

That's amazing 24 seven.

Third, they had music therapy. There was this awesome chick who had an acoustic guitar and all you had to do was say, hey, what genre of music does your loved one prefer? And we said her favorite is Gladys Knight and like the temptation, whatever. No, no, actually, we had not said that, we had not even told her that the first song she sings is my Girl by the Temptations. And that was one of the person who was in the bed, you know, passing away One of her favorite songs. Wow, she's playing this all instrumental, sounding like a hummingbird and we all like, do you?

even know which song she's playing. That's amazing.

OK, the are those big except the good.

Yes, that's huge.

OK, well, I can join the group.

Oh, you definitely can join a group. We knew you were a part of the, except the good crew.

Thank you. Yeah, it is something that I Encourage, even myself in moments, right, I just try to catch myself from ruminating, which is what I learned from my years ago. If you just find yourself going down that dark hole. This didn't go right, if I'd only done this, if I, if, if, if, if, if. Hey, that's all over. Yeah, look at what happened and find something positive or good about it, Because, no matter what happened, it could have been worse.

Oh, yes, yes, that reminds me of like a little, except the good story that I think may be helpful to some listeners that are caring for loved ones. So talk about ruminating. I would ruminate on all the things my mom could no longer do with me. I was pregnant. I was pregnant. She could barely, even, like, acknowledge my pregnancy. She couldn't speak anymore and I was living with her and I just just thinking about all those things she couldn't do. And then I had decided this is before I knew, except the good. But I was practicing it sometimes. I decided, ok, on Thursdays we're going to go in the drive through because she couldn't, she wasn't very mobile, but we'll drive to the drive through Starbucks and get her favorite drink and I'm going to blast 80s music on the way, because she loved 80s music, because that was like her heyday, like her college days, and I remember like some days it was hard getting her in the car or you know, she started to have a hard time sometimes with the straw or like little things would happen, but I just kept doing it and just focusing on OK, but on Thursdays this is what we do, and she would smile and laugh and, like I, would just make kind of like childlike jokes that she would really cackle at and we just belt out songs because she this was crazy, she could no longer speak, but she could sing songs that she had from memory. Isn't that weird?

That is so weird, so weird. My mom can also sing any song she ever enjoyed. That, you know, that really meant a lot to her. I have a playlist, I pay, I look, I pay the electric bill, I pay her health insurance bill and I pay all of the streaming music things. So it plays in the car, plays on my phone because I have the playlist, because I have curated all her favorite songs is about two and a half hours and no matter what is going on, I'm going to press play. So I'm like, ok, it does. I don't care where we are in the doctor's office. If Zeddy starts having a little bit of a panic or a freak out, I just put the music on. She gets distracted because she starts singing yeah, your songs. And your mom couldn't even talk. She couldn't.

She couldn't speak, she, she was down to just like saying like yeah, or like you know, actually not to get very super religious, but the last words my mom would ever say is Jesus, everything she saw. She, just that was her last word Jesus, jesus, very firm in her faith. But yeah, but she put it. We put on the 80s music and it was crazy because I could hear her voice and the like I wasn't hearing that anymore, you know, like a consistent sound of her voice. So, yeah, she, we really enjoyed our little Starbucks trips and get our Ta-Zo-Chai and play our music and I just try and focus on that. It was hard, it's not easy, it's a practice, like you have to get into the mode because it's so easy to be like my mom's not here and she should be helping me get ready for the baby and this, and that that takes a lot of energy. Yeah, yeah, the ruminating. I learned that word too when I was caregiving, so from my therapist. Yeah, it's, it's a thing, but yeah.

Were you in therapy while your mom was alive.

It wasn't until probably like after I had my son and we were still living with my parents and I brought him home to their house. So we lived there for the first six months of his life and I had terrible postpartum depression which I think Like if I wasn't in a constant state of trauma and caregiving, I probably would have seen that that was going to happen, because it's just so much stress, so much. But I was very insistent, like I'm going to be fine and. But I did end up seeking therapy and I'm still still in it, because after your loved one passes, it doesn't mean this journey is over. You know, it still affects your life so much, going forward, even after you've gone through so much, going forward, even after they get their wings, and there's always things you know to sort through. So yeah, I'm a big believer in therapy.

Ditto, ditto from the time you're so. It was about. Was it about a year from the time your mom was diagnosed until she gained her wings?

It was about four years.

Four years.

Yeah. And then you know, there's like the six months of visit, really this, you know. And then after that, my husband and I moved in in the following year, I know that year I got pregnant with my son and have my son the next year. And then, yeah, yeah it was. It felt really long while we were in it and then as soon as she passed, it felt like it was a blink. It was very weird. It was like I snapped out of like the trauma of it all and I was like, oh my God, what did I just go through? And I just think still, even with this podcast and like a hundred episodes and all the people we've interviewed and everything, like I still just don't think some people in my life really understand like what that was like, Because it was really something.

And if you had the opportunity to try and put it in like you know, one nice little nugget for someone who hasn't been a caregiver to say this is what the hell we go through as a child. It's parenting up there. You're parenting your parent who has a form of dementia, so that means currently there's no hope of a cure. Like I'm not I am not trying to throw shade on people with other diseases, but if you have AIDS, hiv or cancer or things of that nature, there is a slice of hope from the beginning of a cure. Yeah, we don't get that from diagnosis. We're counting down the days to say goodbye and then we also are watching them, forget who we are, yeah, or forget things that they did yesterday, so or how to communicate with us, or lose their personality, what you know, let's. Let's say no filter, and you're not worried about trying to not hurt Uncle. So and so or Right, if you could just say this is what is like.

Wow, um, it is Such a good question it's so hard to synthesize, but Um, as a child I'll focus on that Um, seeing the person that care for you and loved you and you know I was fortunate that my mom Was like my hero, she, she really was a beautiful person and my cheerleader and the person I look to for guidance and hope and encouragement. And to see her change slowly and lose her ability to communicate and engage, and see that all happen In my twenties, as I'm getting married and having a child, it was the most excruciating pain that I've ever been through and we'll honestly continue to go through as she's not here. But to lose someone like piece by piece by piece by piece, it's like slowly ripping a bandaid off as slow as possible. It's, it's the most excruciating pain. Um, yeah, I, there's really not even words. I mean, and I think the after two of like, after they're gone. I feel like I've had to learn how to like parent myself and that has been if I look at an, except the good has been the most tremendous growth opportunity in my life but has required a lot of work and I could see how people can go the other way into a very dark place, because it's not easy to become that person for yourself, to become the cheerleader and to become your like, look for the guidance and light in yourself and trust yourself when you don't have that anymore. That is hard. I don't know if I'm explaining it well, but it's like when you lose that, it's just like there's this gaping hole and like I think the ultimate growth is to try and find it in yourself with the tools they gave you. That's kind of the journey that I'm on right now is just it's hard. It's really hard to be a lot easier if she was just here, you know.

Hell yeah, ingo, maria, yeah, I think that is that. That sounds very golden rule. Remember me to me. I know I'm not a producer or a co host of remember me, but that sounds very remember me, ish. It sounds like the quintessential essence of your mom being remembered and what she poured into you and how she instilled things in you, being front and center for you, and that is. It sucks to have to do it. Yep, it totally sucks to have to do it. I my With those who may not be. I know Maria knows a bit about this, but my story is you know, I'm an only child and then my father had a massive heart attack In January and then, 90 days later, my mom was evidencing something who, to me, I was like no, this is not, this is not grief of a widow, this is not depression. That her boom and died. This is something else. That was maybe like in April, but by July of that year she was effectively diagnosed with two forms of dementia. So within a six month period that Cheerleader Support Foundation Protection Advisory Council that you speak of I had two strong pillars and then, six months later, I didn't have either. And so the notion I I agree, and I haven't heard anyone else Speak it so clearly as you just did and thank you, but that the concept of you also have to parent yourself, but as long as your parent is alive, even with they have dementia, there's a part of you who still believes that they are parenting you. Oh yeah, eating you and telling you to do something. Because I know, right now I'm like, literally like three days ago, I whispered something to Zeddy and laid my head on her chest and asked her something. Of course, she didn't give me any words, but I just laid her on her chest and she patted me and she said uh-huh, baby, uh-huh, that was good enough fast.

Yeah, I would love that. I even looked for that, just that like physical comfort for my mom when she was bedridden, Like just like the pat on the. And when you have such a deep bond with someone like that, you don't really need words for them to feel, to feel their love and to feel. You know you got this, Jason Miles, keep going. You know like you got it, Like from the path.

I don't know if I'm making up crap and my mama would say girl, I did not say to go do that shit, but in my brain it feels like you know what, what I was thinking I should do. She's telling me to do it. That's how I feel. But I can't do that with my father. Yeah, right, I completely. Uh, Zeddy has a thing when she says I immensely ascertained. That was one of the big things when she was still using her big words, because she used to have a very large, extensive vocabulary, and now she doesn't say after, since her stroke, she doesn't say many things at all. But it's a part of my lexicon now when I am teasing with my friends and I say when I'm trying to say that I'm doing something big with my big brain, I'm trying to immensely ascertain anything at all. But those moments, for those of us who are parenting up, those moments, even when they are not articulated, are still precious and they are critical because, even in a diminished capacity, they're ours. Yep, and thank you so much for sharing those during your time as a caregiver. And, even more importantly, now Tell me what you do to let the steam out. How do you now? Self care is the buzzword Blah. Yeah, sometimes you may not have enough time for it to feel like it's self care. But how do you stay balanced? Keep yourself from jumping off the top of the roof?

Yep, yep. So I agree it's not the traditional. You know, bubble baths and manicures, those things are great, but my thing is saying no. Self care for me is saying no. And so I learned throughout my caregiving journey I was still trying to keep up with all the other things Still seeing friends, still when I could, like you know, still trying to keep up with all the things before my life of caregiving, and then I would end up being resentful or exhausted or it just it never served me to go along with the things that I didn't even really want to do or didn't have the space for. So saying no is really like a I don't know if that's a weird answer, but saying no is really a form of self care for me. If I'm not interested in overloading my weekend with a ton of different parties, like no, sorry, and I just make that space for rest or for, you know, maybe I just need a more fulfilling activity of like doing some art or, you know, doing some more of those traditional self care things, but like I have to say no to even have time for that stuff. So I think it's been hard for me as like a people pleaser, but I've been just really setting a lot of boundaries and I think that's and trying not to feel guilty about it you know, that's really been my best and most kind of unique form of self care. Yeah, I don't think I'd like to self care when my mom was alive. I just don't think I really did. I think I I that's the honest truth. I wasn't good at it. Maybe I thought you know manicures and like a bubble bath sometimes, but it was nothing sustaining. I think probably the biggest form of self care during that time was like therapy, and which is a great one, and just some of the tools I've gotten from therapy are my newer self care of just setting boundaries, saying no and just valuing my time more and valuing what I want more than just being maybe a little bit selfish sometimes. So, I don't know, is that bad? See, I still even feel bad saying that, but it's true, I don't know, I don't know, I don't know. Yeah, exactly, exactly. Do you get exactly what I'm saying? Yeah, right, right, yup, that's true. Yep, let's try. Yep, thank you, thank you, yes, thank you so much. Thank you for having me and thank you for all that you do as well. So appreciate it. Yes, so you can follow us on Instagram at Remember Me Podcast. You can listen to Remember Me wherever you listen to podcasts. If you want to learn more about that, you can go to our website, remembermeftdcom. And yeah, just listen. And if you have any questions, we're always on DM and always here to help, so yeah, there's something good in everything.

I know that's that's. Isn't that crazy to think that even with FTB Fronto Temporal Dementia there's something good. Right, both of their parents are deceased now, but there's something good, that's some. That's what they learned to find the something good in every day and every moment. I mean whether you are with your LO or you had a stoplight or you are pissed off with somebody at work. It wasn't even your damn turn to work on that project, but you knew your coworker wasn't going to get it done and you didn't want your boss to thumbs down the whole team. So you did it right. But what's the good in it? The good in it is that maybe you didn't get cussed out and you did get to leave work early on that Friday. Right, maybe you don't get all the credit you think you deserve, but the good part is you did get to leave early on Friday and your boss sees you. Some other coworker nudged your boss and said hey, you know who did that shit. You know who didn't do it. Number two, self care, is saying no, y'all remember the game that they taught us all as kids. Okay, for those of you who didn't grow up in the ultimate, I don't know if y'all did it, but they played a game with us called peekaboo. So you hold your hands and then you move the hands from your face and you say peekaboo, as if, because your eyes are closed, the rest of your body cannot be seen. And it's so fun. That's how I felt when she shared self care is saying no All this time. All this time I'm over here trying to make myself care as a caregiver. Be big, right, gotta go on vacation. Gotta go out to dinner. Gotta have a girls trip. Oh, jay, I gotta go scuba diving. No, just say no. If somebody asked you to do some and sit on the couch Parenting yourself after your LO has passed on, what the hell, what the whole hell. Okay, not only is that something to consider after your LO has gotten his or her wings, but the notion that you have to start parenting yourself while your LO is still alive. But they can't really give you advice, they can't really cuss your ass out when you make a dumb decision. And, as simple as it sounds, there's a whole lot of people like I'm so sick of my mama telling me what to wear, what to do or who to date. There's a whole lot of us so wish our mama, who is still alive, would say to me even Jay G, why the hell are you still fooling with that fool? I wish I had to answer to my mom about where I'm going, what I'm doing, what I ate, what I'm wearing. You know what I mean. But the notion that, even though they were caring both of them caring the creators of the Remember Me podcast, people with dementia, want to be remembered and they're saying let's still remember them, just because they aren't able to speak for themselves as eloquently right now. Let's still remember them. I think we can do that. You gotta remember, you gotta start learning how to parent yourself, because your mama or daddy, who's still really here, ain't really, I don't know. Y'all might have to go. Uh, read Open that 1738. It's been a minute since that, remy Martin. Alright, anyway, today's sponsor is the outside been open Tua DC, chicago, new York, houston, atlanta. You better get your tickets. We made it. Thank you for listening. Please share with someone you love. Subscribe for continuous caregiving, tips, tricks, trends and truth. And pretty pretty please with Brain Health Sweetener on top Review on Apple Podcasts. Subscribe to our YouTube page and follow us on social media too. I'm a comedian. Alzheimer's is heavy, but we ain't gotta be.