Caregiving In The Raw-Interview with Lisa Berlanga

Welcome And Meet The Guest

SPEAKER_01
0:09

Welcome to Patty's Place, the place where we're going to talk about grief, dementia, and caregiving. I'm your host, Lisa. I started this podcast in honor of my mom, Pat, who passed away from dementia about two and a half years ago. So I want you to know that this is a place where you're not alone and we can talk about all these overwhelming subjects. So grab your cup of tea, your cup of coffee, or if you're having that really bad day, a glass of wine, and let's kind of get talking here. So I'm very excited. Today, our guest is Lisa Berlanga. She is the author of Dementia in the Raw: Confessions of a Caregiver Uncensored. She it draws upon her personal experience caring for her mother with dementia. And you speak candidly about confusion, anger, exhaustion, grief, and family conflict that caregivers often experience, but may be afraid to discuss. So welcome to Patty's Place. Thank you. Thank you so much. Thank you. Yes, I love your description because it's all of that and above, right? And more. Right? Yes. Yes. It really is.

Why She Wrote Dementia In The Raw

SPEAKER_01
1:07

So what inspired you to write this book?

SPEAKER_00
1:14

I I wish I had like a really great answer for that one. But really, because I'm not a writer. I'm not like English class and classes that I've taken, like, no, not not anything that's near or dear to my heart. In fact, I'm not even uh I'm not even a book reader, uh, to be honest. Um, so what possessed me to like, oh, I'm just gonna write a book. Um, I don't know. I I I think uh I think it was maybe just the the passion within that I really felt that I had solutions. Um and I saw that giant like arc of a um of a journey, I hate saying journey, but it was a journey. It is um, right? It's just it's just so profound. It was just so huge. Um, and so uh when I realized that I had um, you know, really found my way, um I kind of shifted my, you know, I'm gonna turn 50, I'm coming up on 50. And so this next, you know, section of my life, I'm also an empty nester. So um I I just felt like because this was so profound in an industry that I didn't know really anything about before, and I saw how um how much of a uh like it to me it looked like a gaping hole of of of information that wasn't really getting to caregivers. Um I was like, I I have to share. And and I don't just have to share like my experience. I want to share like, you know, the the physical and um emotional solutions that I came up with because I mean, you know, like I'm all smiles now, but but like you know what I'm talking about, right? Exactly. There's that that time when you are just I I don't know if I've ever been lower or um, you know, just so broken. Just broken. Um, and so you know, those those huge feelings were just like it absolutely compelled me to just think that I could power through learning how to build a book. And um, you know, and it also uh, you know, it shifted my my vision to as much as I love doing hair and being a cosmetologist and a business owner, um, you know, I I felt like, no, this is this is a much bigger, a much bigger calling I think I might have now. Um and so I'm I'm committing myself basically. And so the book was um kind of like I feel like maybe my foot in the door to let other caregivers know as I go into this industry of home health care and and and whatnot, um, that they know that you know it's it's not like a money grab for me. It's it's literally like I want to change things. So um what better way to really state my case than to put my story in a book and then share how I how I did that arc and got here.

SPEAKER_01
4:21

So that's what happened. Well, and as a hair uh hairstylist, you were part therapist anyway.

SPEAKER_00
4:28

So oh my god, you're so right.

SPEAKER_01
4:32

Yeah, yeah. I always have those conversations with my friend who does my hair. She she yeah, I love it.

Caregiving Advice That Gets Real

SPEAKER_00
4:39

Yeah.

SPEAKER_01
4:39

So what makes your approach to dementia caregiving different from other books that are out there on the subject?

SPEAKER_00
4:45

Okay. So um, first let me let me say this because I I might have to, you know, put my foot in my mouth a little bit or back up because um when I'm gonna say this because it is different. Uh um when I was going through that uh really rough, rough, rough patch and I was looking for help. I I I did look up some books, and I do mention that in my book that I I call it dementia phone book because there is one book and I I don't say the the name of it and I won't. Um, but it just was it was too um, it was too many words to put it in the book. I get it, yeah. I get it. I couldn't read. I couldn't read. I was so my anxiety was so through the roof. And um, you know, I it was like, I mean, to put it in lack of words, you know, my mom was pooping on the floor, and I was like, what SN page is that? You know, like where's it? How do I make it stop? You know, please. Right. And you know, and I'm reading, and and I'm not I'm not gonna lie, um I know that they're within that arc of journey, you know, and I did reach the it's rewarding and you know, and whatnot. But when you're in that moment, it is not rewarding. And there was a lot of um, I was like a victim of this circumstance. I was, you know, it was a crime that my my old life is now no longer. And so um, as I was like, you know, seeking help, the books that looked in that moment that they were not going to help me. Um I just didn't realize that I didn't fit that particular stage of that book that I was reading. Because I don't think any dementia book is bad. I don't think any dementia book is wrong. I think every bit of it is information um that is necessary, but sometimes it just doesn't align in where you are in that journey. And so when I wrote mine, um, you know, I state that from the very beginning, that I was very triggered when I opened up that wonderful book, you know, that I later found was wonderful, and had every answer and lots of answers and the most wonderful guidance. But, you know, I didn't find pooping on the floor immediately. And so I was just like, this is missing out there. We we need somebody to come out and say, hey, you know, like I feel this, I feel what's going on. And and and let me just say you're right in this moment of high anxiety and and you know, you know, this like confusion of I don't know what to do. And um so so that's what makes my book a little bit different, I think. Now there could be more books that actually did do what I did. And so I I may not be like the pioneer as as I initially thought, um, because I I did give up. I gave up on books. I gave up on, you know, I bought a couple, and then I was like, I can't, um, this is not gonna help me. And so uh maybe had I given it a chance, maybe had I forced myself to sit down and take a minute to read, then yeah, I think um there probably are a lot of books that are could be very similar to mine. Um so honestly, I can't say that I don't know if it is that different, but I definitely know that I I went into it, um, you know, breaking it down into different um uh I keep saying stages, categories of I put I break it down into four stages.

SPEAKER_01
8:37

Um and I'm hoping that because it's in the raw and I do drop a couple F bombs, not like a lot, but but you know, when when you're um when you're in the middle of it all and you're so overwhelmed, sometimes it it's hard to even try to read because you feel like nobody understands what you're going through.

SPEAKER_00
9:00

A hundred percent. A hundred percent. I felt nobody was gonna understand. And even the couple people that I had mentioned it to, it was almost like, you know, I it's like starting a sentence and then not finishing it because why bother? And uh yeah, so you know, that was that whole self-like, yeah, uh no one's getting it, no one's

How Support Shows Up Unexpectedly

SPEAKER_00
9:21

gonna get it. Um, there's a whole chapter I have about how I was in a um a secret support group. I don't know if you read the chapter titles, but it's called Amazon Secret Support Group. And um I didn't, I I hadn't even joined a online support group until way later. And I remember seeing that in the paperwork of, you know, you're a caregiver. And um I didn't, I didn't want to uh I was never really like a sharing type person. And so um I didn't, you know, I was like, okay, pass, I'm not gonna do that. And then one day when I was so um the story, so that's what's there. So the book, I I'll tell a story and then I'll tell you how I got through it or what I used and then the solution right at the end. So in that particular one, um, I start off with a story of how my mom was falling off the bed. And that was a whole period where it was just madness. And um so I got desperate and I finally uh went on to finally went on to Amazon and saw um uh products for people falling out of bed. And then it was when I went to the review or the reviews that I started to read that each one of these products, um they were all five stars and everybody was like writing in all caps and like, oh my gosh, this is like the best product ever. And my parents saw falling off the boobin for weeks. We've been picking them up and blah, blah, blah, you know. And I was like, oh my God, you know, and for the first time in this, I think I was on year three, four, somewhere in there, um, when that started happening, that I I literally like, I just kind of broke down and I just like kitchen floor. I was like sitting there crying on my floor, reading all these reviews and not realizing that I wasn't alone, that there are so many others. And so as I was, you know, um reading those reviews, I didn't know that I actually needed that support. I did need that support. And so um that's how, well, that's how I I felt like, okay, this is um, this is something that I missed, you know, that feeling uh not alone and then realizing that okay, I I do need to actually talk to real people.

SPEAKER_01
11:45

Well, but I wasn't that yeah, it you don't realize it because you feel so alone, but when you start to talk to other people who are either going through that with their loved one or have gone through it, there's such an instant bond because you know exactly, even though every person with dementia is slightly different, for sure, there are things that are similar and it's just that helplessness that you feel that you're able to bond with people.

The "Helping" Myth And Burnout

SPEAKER_01
12:15

What do you think are the biggest misconceptions people have about being a family caregiver?

SPEAKER_00
12:21

So I just I just talked about this the other day. Um the biggest misconception, I believe, uh, is the fact that other we think it and other people view it as though we're helping. And now I I can't stand it. I can't stand the word I'm helping. Um, because it you're not helping. You've taken on a job, you've taken on a profession, you've taken on somebody's profession. They get paid for this, they get paid, they they know what supplies they need, they know what tasks and duties and and things are supposed to be accomplished. And um, you know, so that that misconception of, oh, you're just helping or you're just at home, you know, it's very similar to the stay-at-home mom, which I had been as well at one point. And that's also very angering, right? Because you don't realize, you know, there's there's so much. It's so taxing. Um, and and you don't only have to stay on top of what you're doing, you gotta stay on top of yourself, right? You gotta take your own self-care, you gotta come with that happiness and that joy and that whatnot. And, you know, I've been in the office environment too. And it's like not everybody's walking in there with, you know, that joy of, you know, getting ready to do a bunch of emails and reports and whatnot. So I just can't imagine that if, you know, if you're a coworker and you gotta go wipe their bottom too on top of the emails. That would be ridiculous now, wouldn't it?

SPEAKER_01
13:50

Yeah, it would be, yeah. And and you know, people always tell the caregivers, oh, you need to have self-care. And sometimes it's hard for the caregiver to be able to even say, you know what, I just need uh time to sleep. You know, oh God, yes, I remember the one time well, my mom lived with me for a month before we because we were advised that she had to go into memory care because she with that. And um, of course it was during COVID, of course, during all this. And so wow, so it took a while to find the right place for. And the one time I remember I I I texted my cousins and I was just like, could could one of you just please come and spend the night with her? I I have to sleep, you know. And and thankfully one of my cousins came and and my mom was up all night, and they watched they watched murder she wrote the entire night because that's what she wanted to watch. She was just like, I know, but I was so appreciative because it was like I just needed to sleep, you know. Uh yeah, and it's hard to be able to to talk about your needs as a caregiver because you feel so burnt out, and then you feel guilty because oh you know, the other person's sick. And so you you feel so conflicted the whole time.

SPEAKER_00
15:04

Yeah. Yeah. And then yeah. And not just that, then you feel like, and then like the result is you feel like you're failing. Right. Like I well, what else do I do? What can what can I do? You know, you're so defeated by all of that. But the sleep deprivation is wicked. That's yeah, real thing.

SPEAKER_01
15:22

And and especially with dementia, because a lot of times when they get to the sundowners, they they do. They, you know, their whole their whole day is different, and they are like up, you know, and then they sleep all day and you know, and and you don't know what to do, you know, and and you're so out of sorts, yeah, you know.

Sundowning And The Torture Of No Sleep

SPEAKER_00
15:44

Yeah, no, I I yeah, I got a whole chapter on sundowning. That um that that part where um so I I don't know about you, but I was the what's the sandwich generation. So you have kids at home and then you have the parent. Right. And um, so when she was up and screaming and getting into things and turning on water and the refrigerator and the stove and the cabinets and every every cabinet you could possibly imagine. Um, you know, everything was open and everything's out. And um, but what she used to do was uh she'd call for me and uh you know it was Lisa, and yeah, so you know, I'm like jumping up out of bed and I'm running over there to see what the heck, you know, and um, and then she'd she'd give me this like the stare, you know, so she walked in as soon as I walked in, and then I'd be like, Yeah. She'd be like, look at the dog. And I was like, No, I don't want to look at the dog. You know, like, oh, this is like every hour? What are you doing? Right. So yeah, um, so that there's uh so the chapter when I talk about the sundowning, or when I actually I I make a whole nother chapter, um, I call it Fat Raccoons because uh we were tired, so sleepy, and uh we were eating like constant. I was cooking like constant and baking and so much sugar and coffee. Um as I was constantly crashing, um, just tired. And uh so I really I go into the the real of it. So sleep deprivation is torture. It's torture, real torture. And I had seen, I had seen, I don't know, what I was watching. I don't even know why I would remember it, but it was years ago, there was like something on the news, and it was talking about the prisoners in Guantanamo Bay and how they were moved from cell to cell, um, like every hour, uh, with all the lights on. And then they'd have like vacuum cleaners and loud music and all of this, and it was a torture tactic for these prisoners. So I was like, I knew it. I knew I was being tortured, you know, like you're torturing me. You don't even know it. This is like munch house and my proxy into the max, you know. Like you're hurting me, but you don't know it, or you know it. And yeah, and so um, so yeah, that that sleep deprivation, oh my gosh, you know, like that sundowning, they just they had their clock is wrong, you know. Um but yeah, I went I went through that about six months. Six months. It was it was a long um, I called it zombieland actually, because she was like a zombie, you know, you know, they're up all night and you just you're begging for sleep, but you're I I I remember begging for like a block of sleep. Like, can I just give like four hours? You know, why is it why is it one or two? You know, it's it's such a mind like warp that you go into. Um yeah, I it's so crazy, right?

SPEAKER_01
18:46

It's just like the craziest journey, like it really is. And then like you find um how they hide things in the craziest places and stuff. And you like I I know when my dad was packing up the house, he found stuff that was just crazy. And then when I was helping him, like it, you know, like the wands that you use to to clean the toilets, you know, the disposable ones. She must have had 10 of them like in her dresser drawers and stuff like that. It was just like and he found like her cell phone wrapped in a sock, wrapped in something else, like behind a kit. Yeah, and it not that she ever used her cell phone very much, but it was like just the craziest things that you found. Yeah.

SPEAKER_00
19:29

Yeah. So you know what I kind of figured out. Um, I mean, it took a while. It's so weird. I it's weird to to get like thrown into something, and then and you're just kind of scrambling. You're I I felt like I was on constant reactive mode. Yes. Um, just just reacting to whatever new thing, that whole Easter egg hunt of what little pill bottles, little cubbies, every cubby, right? Every cubby, there was something uh hidden. And um yeah, so uh, you know, it took a while, but I I kind of, you know, after taking that step back and kind of looking at it, I'm like, oh, you know, um I think I think this is what maybe one of the things that kind of hit home for me was I had to put myself um in her shoes in the respect of if she is uh like losing the mind, right?

Communication That Calms Fear

SPEAKER_00
20:26

Um she's in confusion and she's scared. Yeah. So I I like to use this analogy. This is not in my book, but I like to use it. Um I always say, like, imagine, imagine you and you and I are in in a car and you're driving, and and we're, you know, it's nighttime and we're driving and we're in like the forest or something, you know, where the tiny road and just trees, and it's scary. Um, and then we're lost, right? We're lost. And I'm in the passenger side, and I'm telling you, I told you to take that left turn back there, and you know, my tone is like you need to turn around or stop going this way, you know, like that that noise, that that mom voice, right? Do this. I told you. Um, now imagine you're that driver, you know. I mean, we could be friends, we could be related, relatives, whatever, but you're already scared yourself. You're in the driver's seat, you've always been in the driver's seat. And now, now your co-pilot is like yelling at you. You're gonna, you know, depending on the type of person you are, or had always been, if you're the, you know, um maybe the kind that is able to react fast and to snap back and to be like, you know, angry, or maybe you're the type of personality that is a little more like where you it would hurt your feelings and you'd start to cry. Um, or you know, however, you kind of take that personality is how you're gonna take that person, you know, how they're they're treating you. Um, and it and it does kind of look like gaslighting because if you don't remember that I Said, hey, take that left turn back there. And I'm telling you, I told you to take that left turn. You're like, what you never told me. Right. You know, now you're even more uh your head, you know, you're in that space of just in that moment, you're not gonna be okay. You know, uh, you're already minus the mind, but you're not gonna be okay if that is the moment you're in. So that's where I started. Um, I had uh looked up, there was um, I think it was that phone book, that caregiver phone book. Or maybe it was, or maybe it was online, but there was rules of how you speak to somebody with dementia. And um, and so when I seen them, I was like, oh gosh, this makes sense. You know, I I can't talk to her like I would, you know, like I'm expecting her to know these things, or that I'm expecting her not to feel the fear and the confusion of she knows she doesn't know where she's at or what she's doing or what that moment actually is, only what's presented in front of her at that time. So I printed out like 10 of these, um, how to talk to somebody with dementia. And I made a giant poster and I put it behind her bed so she didn't see it. But I put it behind her bed. And uh, and every time I would go in the room, you know, I would read it. Okay, like, you know, don't say anything bad, be positive. Don't, you know, watch my tone, watch my, you know, and I would, I would literally read them, you know, and just like, okay. And so I'd looked on her and be like, you know, I'd try to have this new kind of um uh just a just a new tone and a new perspective of of how that and I did notice like what a difference, you know, exactly. What a difference that made.

SPEAKER_01
23:43

It really did because it it took me, I agree, it took me a while to get to that point. But once I did, it was such a difference. And then to be able to step into her how she I I think about that sometimes even now, like how scared my mom must have been to not know what was going on, you know, that has to just be so frightening. And you know, so I I I'm glad that I finally got to that point where I was able to enter her world and and just kind of go with it because then I yeah, you know, now I have moments I like think back on and you know, some of them were funny that I was with her, or I just got those, you know, times to be with her. And then when she did get scared sometimes or that, she would be like, Don't leave me, don't leave me, you know. I I you know, and I was able to calm her down, you know. Oh nice, yeah. So uh I felt good that I was she felt that I was somebody who was safe because she didn't know who I was.

SPEAKER_00
24:38

Yeah.

SPEAKER_01
24:38

She just thought I was this really nice girl that came to visit her.

SPEAKER_00
24:41

Well, did you, since you brought that up, did you um was there like a pivotal moment for that? Or did did did that kind of that already happen? And it wasn't.

SPEAKER_01
24:51

Well, did you how did so my mom wouldn't get diagnosed? I tried really hard. Yeah. She just she just wouldn't do it. And luckily, like as I've said before, my parents had done um powers of attorney for healthcare and all that years before. And she looked at me and she looked at my dad while she was we were she was still in the house with my dad. She didn't know who either one of us were. And so I looked at my dad because my dad had a very difficult time. He was in denial, he did not want to admit that something was really wrong because my mom was the anchor, you know.

SPEAKER_00
25:24

Right, right.

SPEAKER_01
25:25

And I said, I go, we have to do something. And so it it just like I don't exactly know when it happened with her, but yeah, she didn't know who I was.

SPEAKER_00
25:37

And did you did you have a um did you have like a was that like a like a hurdle for you? Did you were you able to like accept it like right away, or did you how did you process that?

SPEAKER_01
25:50

It was it it was um, you know, I think in the moment when we were going through all that trying to get her diagnosed, I don't think it really hit me really hard. It but one day I had gone to visit her at memory care, and um, because I would go visit her every and I'd go every day. And sometimes when people would come to see her, and a few minutes later she would call when she could still use the phone and she'd be like, I don't know who that was that came. And that particular day she called. I was at the elevators, I hadn't even left the building yet, and she called and she didn't, she was talking about who had just come to see her, and that just hit me so hard. Like I just not on the phone with her, but like when I got off the phone, I just started crying, you know. Yeah, and it it is, it's hard. Um, but I always tried to, in the back of my mind and in my heart, feel like somehow she knew we were connected at some level because she didn't know who my dad was either. And she would keep she keep asking for um, my dad's name is Don. So she kept asking him, Have you seen Don lately? And after and that was hard on him. He had a real hard time with it. And then after a while, he would say to her, Yeah, you know, I did see Don lately, you know, because we realized she was looking for him when they had first met. Right. And so she couldn't, yeah, she couldn't make that connection that, you know, because I would show her pictures from you know people how we were now and and you know from years ago. And when she saw a picture from them, like, you know, when they first got married, she's like, Yeah, that's my Don, she would say. Yeah. And so and and it's hard because you're like, Yeah, you know, but I really feel like even when they don't know who you are, at some level they do, they just can't express it. But it's hard, it is hard, you know. Cause then my mom would ask me about my mom. She'd be like, How's your mom? Or give this to your mom. So then I would just tell her about herself, you know. Yeah. And she'd be like, Well, you just come visit me anytime. And I'd say, Okay. But it is oh gosh, it is it's hard, you know? Yeah. Um,

Practical Tools And Getting Organized

SPEAKER_01
27:51

what would you say are some of your practical strategies or gold solutions, you call it, that made the big biggest difference in your caregiving journey?

SPEAKER_00
28:00

Um okay. I I mean God, there was the there's so many. You know what I'm saying? Like it, yeah, like every time I hit a hurdle that I had to jump over, you know, I I thought that was the best solution in the world because I because I just I'm like, I did it again. I was able to get through this one too. Um, I mean, you know, that could have been it literally could be, oh I don't, there's so many. It literally could be the the dog pads I was using to to put under her, uh, you know, uh or on top of between her the and the sheet, so that I'm not doing laundry, you know, 18 times a day. Um that is a that's like the biggest gold. I mean, that's so huge on a on a super practical um note, you know, the dog pad underneath her. Uh so I don't have to do laundry that many times because that's exhausting too, right? That's tired of the cleaning is a lot. Um, but then there were um bigger, uh more monumental, like how about just the the generality of getting organized? Yeah. Um, nobody told me like, hey, I mean, I I didn't, I wasn't like all over the place as a human, but I didn't know that the more like I didn't know um that whole job description that I was telling you about earlier about how we don't really know that we're not helping. Um, you know, it wasn't until I had to make a um uh list of things to do for somebody else to come in and take care of her for a minute. You know, I had 36 pages over, you know, a course of a couple days uh to take care of her. That was just sufficient for me, you know, it wasn't everything that I do, it was sufficient. But once I saw everything laid out, I'm like, oh my God, you know, like I'm doing all of these things. And that was a gold solution in the respect of not only did it make my job easier to do the taking care of her, but talk about like standing on some pride. I mean, you know, I was looking at this list going dang, you know, like I'm really, really doing this. Like I am, you know, really handling this situation. And so um, you know, that was a huge gold solution for me because it's the credit that we don't give ourselves, right? Right, you know, we and we make these tough decisions, like, you know, even having to put her in memory care, are you kidding me? Like that's huge. That is it's that's it's not just like, oh, I did this. No, no, you like the decision making and the heart that goes into that, the emotion, everything you're carrying on your shoulders, um, you know, that's a lot. And so when you make these decisions, we're always second guessing ourselves, right? I mean, yeah, it's not like it's definitive. We don't see uh this is a correct box you check and this is a wrong box. So, you know, I I think organization was um I I don't, I don't think um, you know, that might be one of the things that I also believe that isn't really discussed enough. Maybe it is, I maybe I'm not out there enough, but or I just think it should be um more out there to say, like, look, you you gotta get organized. You have to plan out this day, you have to plan out your tasks. Um, because I mean, at a bare minimum, you can't be successful at anything if you aren't organized, right? If you don't delegate the right amount of time and attention to something, um, you know, you might be okay at something, or you might just pass the bar. It's kind of like the reports I did in high school with my cliff notes. I was really getting by.

SPEAKER_01
31:44

Well, it is it is because now all of a sudden you are even with memory care. I still the nurses in that would call and be like, hey, you know, um, her medicine, making sure her medicine was on top of things, or being able to then say, you know, something's not right. We need to get the doctor in here, or have you noticed XYZ and like really being on top of things? Uh plus being on top of your own life is hard. Right. You know, it's like you have lists for her, you'd have I you have lists for her, you'd have lists for you, and then you're like, oh, okay, you know, yeah, and you're just like, oh my God. So if you could tell every new caregiver one thing before their journey begins, what would it be?

SPEAKER_00
32:27

One thing, one thing, one thing. Oh gosh. Yeah, oh man. Yeah, make the schedule. I would say make the schedule. Make the schedule. I think um what we don't know is we don't know how much we are biting, you know, we don't know how big of a bite we're taking. And like I said, it's that misconception of, oh, we're just helping, oh, we're just bringing our parents in for a minute, or you know, for oh, now it's that we're at this stage, and so we're just gonna now they're in our home, like it's not gonna be a big deal, or it's whatever. Right. Um, yeah, I, you know, it's uh, you know, it's uh nobody would nobody would bring a brand new pet in the house and not know you're gonna have to clean up after it and feed it and schedule and do inventory, make sure that they still have food coming in and um, you know, uh make sure they have grooming appointments. And, you know, there's then that's a dog or a big cat. We're talking humans. So I think that's that's what I would I would say to a new caregiver is you're gonna have to be realistic and you're gonna have to look at this as you're not helping. This is gonna be a job. You're gonna have to look at everything that will need to be. Uh, also knowing that uh what you have today won't may not be tomorrow because it gets, you know, the plate starts getting bigger and you start putting more things on it. And um, yeah, and you should also um, you know, maybe look for some resources. I probably join that group right away, join that whatever, you know, if it's dementia or Parkinson's or whatever the case is. If you don't know about it, you know, like the back of your hand, you need to be a part of something so that you can start seeing what other people are saying. Uh, so you have a heads up. Because being, you know, thrown in the middle of a war, you don't even know what ammo you have. You're just like, I'm here now, and I'm, you know, dying every which way. So yeah, I would definitely say that.

SPEAKER_01
34:28

Yeah, and I yeah, I would I would say that too, you know, whether it's online or it's a place in person, it it it does help you not feel so alone and you have so many emotions that are going through it. Cause it's hard when you look then at your parent and you realize now you're the one that's taking care of them, you know, and they're sick and it's not gonna get better with you know dementia.

Holding On To Moments And Memories

SPEAKER_01
34:51

Right. It's not, and I would also say too, one thing that dementia teaches you is to be in that moment and to try to appreciate or enjoy the moments you have with them because like I, you know, my mom for a while there, she would call constantly on the phone. You know, some days I swear she called me 30 times. And um, you know, people will tell me you don't have to answer the phone every time she called. And I I didn't, you know, if I couldn't, if I was at work or things like that, but in the back of my mind, I always kept saying I wanted to answer it because I knew there was gonna come a day when she wasn't gonna be able to call me anymore. Yep. And that day came. And so then I was like, I'm glad I did. And luckily I saved a few voicemails just because, you know, and and the day came out of the blue that she couldn't use the phone anymore. And then you kind of I kind of missed it that she was calling me, you know, 30 times a day with it. Yeah, yeah, you know.

SPEAKER_00
35:53

I yeah, that's a tough um, yeah, and that's that's a tough um like line to walk because uh you are tired, you are, you know, overwhelmed, and uh and then and then you are meant to see uh the brighter side of, you know, uh that also kind of reminded me of like when you have little kids, right? Uh you're you're you're trading in one set of of problems for another set, you know, like, oh I wish I wish you could talk so you could tell me what's wrong instead of crying. And then they talk, you're like, oh, when are you gonna stop talking? You know, like right, right. It's a lot. So, so yeah, I I know that. Um, I know that feeling too of um when you start getting a little bit less of them. And then you're like, did I take that for granted? You know, I did the same thing. I I've been taking videos um of her. And I'm glad I did kind of I got the kind of the tell end part where she was a little more um more verbal. She's not as verbal anymore. Um, but I was telling her jokes and recording, you know, her reactions and the jokes and things. And um I would even, you know, there were nights after after that where I would play them on my phone and then, you know, get all choked up and kind of teary and be like, okay, I know that she's having these moments still. I know that she's still enjoying, you know, the moments that I can give her and that um and that little bit that we have. But yeah, I know exactly what you're talking about. Yeah.

SPEAKER_01
37:23

With it. So

Where To Buy The Book And Wrap-Up

SPEAKER_01
37:24

your book, Dementia in the Raw, Confessions of a Caregiver Uncensored. Where can somebody purchase this book?

SPEAKER_00
37:31

So um it's on Amazon, okay. Barnesandnoble.com, Walmart.com. Um, I think it's it's barely uh it barely got released just uh a month or two ago, month and a half ago. Okay. Um so so I haven't really started marketing it yet or anything like that. Um, I'm kind of waiting. Uh I wanted to wait for a couple reviews first. And it looks like I'm uh great reviews are coming back. Um so I will start marketing it a little bit, probably at the end of this month. Um, and then um go from there. But yeah, and then I have, of course, my website, so DimensionLeraw.com uh or my name, LisaBurlinga.com, also goes uh to the same uh website. And uh my email is there if anybody wants to contact me. But yeah. Okay. And your was it your daughter that did the cover? Yeah, so my youngest, uh I keep saying it's so weird. She's 19 now, um, and she's a a sophomore in college. Um, but yeah, when I just had this, I didn't even title the book until I was about maybe 85% done with it. And I just woke up one morning because at that point I had said a lot of things that were it's so crazy. I I mentioned earlier that I'm not a sharer, and um, and then I the stories that I have shared, I'm like, these are stories I I wouldn't even put like on Facebook or like to tell friends or people. And then I thought, oh my gosh, you know, like I am telling the world now that, you know, the most intimate things, and I'm saying it with like no holes bars. I'm just like, here it is, you know. Um and I did that on purpose because I was like, I'm not, you know, not that that's the type of person that I am. I just I kind of feel like I really just put myself on a stick like a marshmallow, you know, like um just go ahead and roast me. I don't care, but I I know this is gonna help somebody because I I I know that level of of craziness. And so when I woke up one morning, it just kind of hit me. Like I felt like these are stories, like just like when you go to confession and you would tell a priest, you know, you tell one person I I said this, did this. Um, and so that's when the image like hit me where it's like shh, don't see that. And so I told my daughter, and she was like, I got you. So she's she and there's actually I have a photo of her um on her pad where she was drawing on it that I'm gonna I'm gonna upload it, I think, to my website because um that was incredibly special to me that she really, really got it. And you know, I didn't um I don't know if you've noticed a lot of the dementia books, uh they're you know, a little bit they're very endearing, heart heart, you know, you see somebody with you know flowers or a butterfly or you know, holding hands or the or an elderly person with someone else. And um, you know, I'm not not to say that I'm not uh that type of person either, but I am also someone I can totally laugh at myself and not take as seriously. And so I I went with the comic book kind of you know idea because it's different. And um, you know, I just didn't, it's like it's a serious subject, but at the same time, I just want people to know that like it's just real, you know, it's just real. And uh and without, you know, I I also want people to know that like, you know, when you when you get there, when you get from this side to this side, um, you know, I can you like you said some stories are funny now, right? I mean the the just talking back and thinking about that sleep deprivation, that was the worst thing. I I don't know if I've ever gone through anything like that in my life, but now I look back and I think about her telling me about the dog, and I'm like, death and dog, you know, like and I laugh about it now. So I I I want people to know that, like, yeah, it's serious, but like get there, you know, there's a there is a space over here when when you're gonna be able to look back and you are gonna be able to to uh appreciate that I had those moments and that time, and um and you're not gonna be in that well for me, that self-loathing that that I'm failing, this is hard, this is so hard, you know. Like, what am I gonna do? Am I doing can I do it better? And um, so yeah, that's that's that's yeah, so that that's why the cover is and that's why it's titled that way. Um, and uncensored, because obviously, like I said, I dropped a couple F-bombs.

SPEAKER_01
42:11

Um, but you know, like that's what I was feeling. So like and I'm sure we've all felt that way as well. So so it's Dementia in the Raw, Confessions of a Caregiver Uncensored, and that your website is also dementiaintheraw.com. And everyone can purchase your book that way. So thank you so much for joining us. This has been so fun and enlightening.

SPEAKER_00
42:31

Oh my god, it's been super, super, super. It was so nice to meet you and hear your story as well.

SPEAKER_01
42:36

I hope you've enjoyed all of this. So please make sure that you reach out to us and let us know what you're thinking. And if there's questions you want us to answer, I'd be happy to answer them. So hope you enjoyed your cup of coffee, your cup of tea, or if you're having that really bad day, that glass of wine, and please join us for another edition of Patty's Place.