Month: May 2025

Speaker 1:
0:00

Okay, so we'll go ahead and get started. So this morning, right here on Patty's Place, we are welcoming Brenda Prater-Sellers. She is an entrepreneur, philanthropist of the year, businesswoman, and she's also an author Author of a book called you Slept when Calamities of a Clumsy Businesswoman and you've raised over $50,000 for Alzheimer's Tennessee, haven House of Blount County and other local nonprofits. So welcome to Patty's Place, brenda. Well, thank you for having me. Yes, I'm very excited to talk with you about it. I thought we'd start with. As you said, there's over 76.4 million baby boomers today and about 71% of the baby boomers have at least one living parent. That are, 75% receiving care from family members. So, in your experience, how do you deal with it all?

Speaker 2:
1:00

Well, it's hard. It's probably one of the hardest things that I've had to do in my life.

Speaker 2:
1:05

My mother had dementia for about 10 years and I've done a lot of things. I've climbed Mount Everest, I've jumped out of airplanes, I'm an extreme sports enthusiast. I've done a lot of things. But to have to deal with the emotional stress of dealing with a patient, and especially a mother that has dementia, was probably the toughest thing I've ever done. And I said and part of that is also in my book it's like my sweet, timid Christian mother ended up with this disease. She just turned mean, yeah, you know, because that's just part of the disease. And so what we did? And we just tried to find out. I was the middle child. I had an older brother, younger brother and different siblings deal with you, know different things differently.

Speaker 2:
1:58

And I would just try to laugh at Mama and you know our brothers would try to correct her and then that would just make her. You know that would just make her mad. So we just started to thinking of whatever it took to keep mama happy and I came up with like five things in the book to make mama happy. And one of the things that really helped her was just get in the car and drive around and that was a piece for her and I think it was the changing of the scenery. But that was one way that it kept her happy. We drive, we're going anywhere and nowhere. And then eating ice cream. She loved ice cream, so that was, if all else fails, would say, okay, mama, what about some ice cream? And that would calm her. And then how I ended up finishing that book was that I was writing stories.

Speaker 2:
2:47

Mama was an avid reader, so I was writing stories and I would read those stories to her about what was going in the book and she loved that. So that kept her occupied and entertained. And then TV she liked a lot of those old TV shows. So that that and then the other. The fifth thing was I got a lot of her family and friends to send her cards in the envelope because they were like sunshine in the mail. She loved to go to the mailbox, she loved to open and she'd even opened the bill. It didn't matter just opening something and looking at the card. So that's kind of how we kept mama happy. We tried, we did the best we could to try to keep mama happy, and I agree with you.

Speaker 1:
3:35

I had similar experiences with my mom because she had dementia too, and I got to the point where, yeah, whatever could calm her down, make her happy. That's what I did, you know, and I think it's hard for people to deal with that. It's okay to I want to say lie to them, but you're not really. You're entering their world and it's like so what if they say the sky is green? You just go. Okay, you know, it's great. Yes.

Speaker 2:
4:02

Yeah, well, and it was yeah because it was funny. My brothers were, and I think early on in the, when we realized something wasn't right, mama was real shy and quiet and she had a sudden outburst which is totally uncharacteristic to her. So I knew something was wrong. And then I think the brothers just tried to, you know, tried to correct her. They thought they were doing oh no, the sky is green.

Speaker 2:
4:27

The sky is blue, not green. But that just made her that much, you know, that just agitated her that much more. And then I talk about this in the book I had a big meeting. Of course, you've got your own family, you've got your own family, you've got your kids, you've got to work. And we were staying with her at night until she went into assisted living and had this big meeting the next day.

Speaker 2:
4:49

Oh, please, god, please, let mama sleep. Well, she wakes up in the middle of the night and she comes over to me and she goes well, now do your parents know where you are? And I said, well. I said well, mama, you are my parents. I know that now, now you be quiet and don't be waking me up anymore, you know. And then she, you know, they want to go back to their home. And I said well, mama, you are home. This is your home. No, no, my other home.

Speaker 2:
5:16

So she kept wanting to go to her childhood home. I could not satisfy her. I said, no, this is your home, no, my home on Davis Ford. So it's 12 o'clock at night, it's cold. I said, okay, let's go to your home. And we just got in the car. She's in her house coat, I'm in my pajamas, we ride around the loop and then get back up. Well, here we are. Here we are, davis Ford Road, and she got out and she went in and went back right to bed. Yeah, we went right to sleep, but yeah, just whatever you have to do.

Speaker 2:
5:44

But for anybody going through that, if you don't take care of your mental health, I would find myself just being my. It was so emotional, especially when it was such a characteristic change for my mother. I was emotionally drained after staying with her because you're repeating yourself over and over and over, you know, trying to keep her calm. It was just a very stressful time. I just tried to laugh. That's the only way I could deal with it. I just laughed and then if I laughed, she would see me laughing and she'd laugh. So it was just try to. I just tried to keep her happy. That's you know, because if mama's not happy, there's nobody happy.

Speaker 1:
6:26

That's true and I, like I said, I kind of adopted that mentality too and I also found, you know, thinking back now, I found those moments when I did that with her to be present. In that moment I'm glad I did because I was able to share those things, you know, like enter her, know, when she wasn't up, we didn't upset her, yeah, because my mom was more on the reserve side too, but, boy, she could come out with some outbursts and even, like you know, family members would be like your mom did not just say that I'm like, yeah, she did, you know that's, yeah, that's the dementia, you know, and I know a lot of people struggle, you know, know, with that. But I agree, it is very emotionally draining with it. You know any, how did you juggle all that? Because you like, went, you climbed Mount Everest and all kinds of stuff while dealing with this.

Speaker 2:
7:14

Yes, well, I needed a distraction and I studied time management and, like I said, I ran several businesses. But then I had a big to-do list of different things I wanted to do, and I'm a photographer by trade. That's what the part of the story is about too. If I did not schedule these things to give me something to look forward to, I think I would have gone crazy too. And I don't mean that to be disrespectful, it was just that everybody's brain needs to have a rest and I just found myself, if I had something to look forward to, I had something good, I could get through the week and I could do all these things. But it gave me a peace of mind. And then I had all these goals. I did a lot of community service things, so I just tried to prioritize Because I knew Mama wouldn't be here. And then later on, you know, mama didn't know if it was me or if it was a caregiver later on, but I knew it was Mama. I knew it was her, so I just tried to do the best I could.

Speaker 2:
8:17

We finally ended up putting her into assisted living, because where they live it was real far out in the country and during the wintertime it was just hard to get sitters because my two brothers and I we all worked, had jobs, had businesses, and so it got. So it's just hard to find somebody that could. Especially during the wintertime it gets snowed in, and that was a whole other thing. And she was going to a daycare center for that type of patient during the day, but then at night we would try to bring her home, but then that got confusing too. So finally, the saving grace was is that mama found a friend of hers, just to live, and she really thought that friend was one that she grew up with. So mama had a friend so every every, because mama didn't want to be alone. That was her biggest thing. She was afraid to be alone. Uh, and my brother ended up growing a beard. Well, that kind of scared her because she kind of like what's he, what's that bearded man?

Speaker 1:
9:18

doing exactly.

Speaker 2:
9:21

She couldn't understand well what's he doing here and she kind of didn't recognize him with the beard. But as time goes on, you just do the best you can and God love everybody that has to see their parents or sibling or spouse go through that. And see, now my husband has a little bit of dementia and so now it's deja vu. But now I feel like, well, I know what to expect and now that I'm kind of going through it again, you just look at the bright side. That's all you can do and be positive. That was the other thing. I just tried to be more positive and I practiced PMA positive mental attitude because if you're not positive you're going to be negative, and negative is better and so bitter doesn't help anything. So I just try to be positive and then try to appreciate every day that I did have with Mama.

Speaker 1:
10:13

Yeah, I mean it could be a struggle to be positive, but I kind of thought about that too, like I just tried to appreciate the time I had with my mom. You know, even though most of the time she didn't know, know I was her daughter, but she thought I was this really nice girl that came to visit her. You know, okay, yeah, and I was like, okay, you know, she'd ask me about my mom and I'd tell her about herself. You know, um, yeah, yeah. So you know, we always tell caregivers it's important that they take care of themselves. What kind of tips can you give them so that they realize? Because there's always that guilt, like you know you should take care of yourself, but then you feel guilty that you're not. Like, what can you do to help?

Speaker 2:
10:57

Well, to me it was all about scheduling Between my brothers and I and my cousins that lived there locally and close to mama. We all had shifts and it basically was like a job. That was our job to take care of mama when it was our time. And we tried to conquer and divide, but I just found out if I did not take care of myself, and then you feel guilty. And I was traveling for work too, so that was a challenge too to try to make sure my shift's covered, make sure somebody's there with me, because she could not be alone by herself. Somebody had to be there 24-7. So, and even in my book I talked about I maybe didn't do as good as I could have done, and you always got that in the back of your mind. But then I come back and say you know what? I did the best I could and that's all you can do is so just beating yourself out, because because then if you are there 24 7, then you're physically not able or mentally able to deal with it.

Speaker 2:
11:55

So that's why I always would try to schedule something a good way, or even just go into a park. Go into a park, go into a park, go into the we live here in the foothills of the mountains, just driving to the park, or just peace and quiet. If you could just have peace and quiet and take care of yourself and then just, I think all of us feel guilty somehow, because I think whatever we do in our minds, it's not good enough, because it's our mama, it's our daddy, it's whoever. And I feel like we just have to be at peace with what we did, because now I can't change it. Even if I thought, uh, you know that I should have done this, done that, I can't change it, there's nothing I can do.

Speaker 2:
12:36

So I tried not to stress out because I said you know, stress is like being in a rocking chair. It gives you something to do, you can sit there and rock all day, but it doesn't get you anywhere. So I tried to take that philosophy with my mom. It's like I cannot stress about it. I'm going to do the best I can, I'm going to be present, I'm going to bring her as much joy as I can and Mama loves flowers and I always would try to take flowers for her. So anything to take flowers for her, so anything to take Mama and make Mama happy, is what I tried to do, but I do feel like I probably should have done more, but there's nothing I can do about it now.

Speaker 1:
13:10

Exactly. I think we all feel that way. So how did you deal with all this while you were also finishing your book at the same time? That's a lot, and you were working.

Speaker 2:
13:20

Yeah yeah, but it's a lot. And you were working, yeah yeah, but it was a distraction writing that book. And then you know 97.3% people that say they're going to write a book they never did because it's too hard. Well, now I understand. That book took me 10 years and it wasn't until my mother passed away that I ended up finishing that book, because I had a reason, because it was her legacy.

Speaker 2:
13:42

I wasn't going to tell her story, but it ended up being her story. It was kind of my struggles of trying to do life, work, balance. How do you have your kids, your family, your, your businesses, uh, and then trying to take care of, of, uh, your, your parents? It was just a lot, you know, and I just tried to do, like I said, the best I could do and schedule. Like I said, it was all about the scheduling too. And then, like I said, I was reading to her and that's how I ended up reading and writing. And even when I was staying with her, I was always working or writing on that story which is about her. I was always working or writing on that story which is about her, and so she enjoyed listening about her, but the story was about her.

Speaker 1:
14:28

Exactly, yeah, I mean they do like the stories and I always say I'm glad I paid attention to my mom growing up when she would tell all her stories about the family, because I was able to jump in and talk to her.

Speaker 2:
14:41

You know being in that moment with her.

Speaker 1:
14:42

So you talk a lot about scheduling. So well, what kind of tips would you be for to give somebody that they're trying to schedule? Should they start with like 10 minutes a half hour just to slowly get themselves so they find a little time while they're trying to balance everything?

Speaker 2:
14:57

yeah, and I think too, just sometimes I think if I didn't balance, I'm a bathtub person and whether you did a bathtub or a shower, it's just that piece of your time in there is trying to schedule that and that was kind of my sanctuary slash, my spa, and also I would schedule a massage, especially after staying down there with my mama overnight. A massage, especially after staying down there with my mama overnight. So I always had a massage schedule, something again to look forward to. And then, as far as time with my family, if we didn't schedule that then my whole time would just be taking care of mama. So I think if I did not schedule time and mark it on the calendar and try to have a movie night or try to have a family night or something, just to make sure you're taking care of your family, or if there's little kids that's got ball games, I would always try to do the ball games and then try to schedule around that. And then made it even harder when I had to be out of town for a trade show or a business meeting. I had to schedule around that.

Speaker 2:
16:06

So there again, I just did the best I could with the time that I had, but being aware of my time, because otherwise, you know, and so many people maybe care for their parents, but then they're bitter because they feel like they've got to take care of their parents, but then it's like they don't do anything for themselves and I'm like, well, if you don't take time for yourself, nobody's going to schedule time for yourself, unless it's you scheduling time for yourself because you're busy doing everything else. And at that time too, mama loved as far as housework and stuff too. It was like, you know, you either try to get somebody to do it, and I always looked at my weaknesses. I always tried to focus on the things I was good at. I was good at entertaining mom, I was good at driving mom around, trying to keep her happy, but other things that I wasn't maybe as good at keeping the house clean as I should have been and tried to get help. You know, try to get help with that. So there again, I just tried to do the best I could.

Speaker 2:
17:02

But dementia patients love especially women, and this was also on my list too is that they love to fold towels. And so I would go in there and say, oh mama, look, here's these towels, help me fold it. And she'd sit there and fold them, fold them, fold them, fold them, and then I would take them back in the back, mess them all up, take them back. Oh, look, here I found more towels, and Mama loved kittens and we had this little. I think it's Animal Planet, planet World something.

Speaker 2:
17:34

Anyway, it was a whole DVD of kittens and she watched that almost all the time, I mean, and she'd say, I think I may have seen this before, but she loved those little kittens and she'd recognize a kitten that looked like hers but she would sit there and that would keep her calm and that would keep her busy and she was doing something. I'd be like, oh mama, good job, thank you for helping me. And it was almost like as mothers, she wanted to help and that's what she did. So that was another tip on how to keep her occupied.

Speaker 2:
18:10

But back to your question about scheduling time. Is that if you don't do that time for yourself, your day is going to be gone before you know it. But you only have 24 hours in a day and that 24 hours, like in our case, we had our shift that we divided up, and then you had to, you know, eat, sleep and then work, and then by the time you did all that, especially, I worked a lot of hours too. So it was hard trying to put those pieces and the puzzle together in your time and you just had to make sure and kind of adhere to that time schedule.

Speaker 1:
18:51

Yeah, exactly I was going to say. My mom was similar in that if you told her to do something or if they asked her like, oh, do you want to go do this? She usually would say no. But if you went in and said, oh, Pat, I need your help, Will you help me with this? She'd go and do what you wanted her to do.

Speaker 2:
19:09

Yes exactly.

Speaker 1:
19:10

I think a lot of people don't think about approaching dementia patients that way, like asking for help. A lot of times they'll do it because they think they're helping.

Speaker 2:
19:18

Yes, exactly, and Mama would do that too. She would love that. And when we'd say, help me fold these clothes, and she could even take dishes out of the dishwasher and that was a simple thing. She could put the you know spoons with the spoons, knew to put you know the plates with the plates, and that was just a simple little test, but that was something that she was helping.

Speaker 1:
19:49

Yeah, and I think that a lot of times you know we approach the dementia patients. Well, you need to do this, you need to do this. And then they get defensive, they get agitated or they don't understand. You know, and as simple as like. Like turning it around and asking them hey, can you help me with this? And then they feel really good, and then they do what you wanted them to do you know?

Speaker 1:
20:10

Yeah, exactly, you talk about, you know, laughter instead of crying. How do you try to find the laughter in every situation? Because, I agree with you, I don't think we laugh as much, and laughter really is the best medicine. It does make you feel better.

Speaker 2:
20:26

Yes, it does. Well, I just ended up laughing because it was better than crying, Because otherwise I felt like you're so sad that this happened to you. And then I think, if you focus on oh, this is terrible, I can't believe this has happened to my mama. And so what I was doing is, anytime my mom and my mother, my sweet, timid Christian mother, left us saying bad words and when I say bad words I mean bad words that she didn't even know what these words were. We don't even know what she heard these words. So what I would do, I would write them down and I talk about in my book that you know, mama always wrote down our first words.

Speaker 2:
21:08

You know she had three kids all of our words. So here I am, full circle. Now I'm writing down words she says, and I'm shocked that she said these words. And my brothers would just be like, oh my, they would just blush and be so embarrassed and whatever words. And my brothers would just be like, oh my, they would just blush and be so embarrassed and whatever. Well, I would just laugh.

Speaker 2:
21:22

And my dad, my dad, passed away before my mom, um, and then once my dad, once my dad passed away. He lived to be 90, but once he passed away, then that's why the three siblings ended up being the 24-hour care gears, because daddy could kind of, you know, could be there with her as long as he was alive. But once he passed away, then that that rolled over to to, uh, you know, to the three, you know, the three kids, and so so we just end up laughing. My daddy had a weird warped kind of sense of dry humor and and he would not believe that I mean because I talk about him in my book I said, but you know, I said, oh, kiss my butt, you know. And Mama heard me.

Speaker 2:
22:05

Well, of course I got in trouble. I said but but then Mama started a lot worse. We're like, oh my gosh, she's saying a lot worse, and knowing she didn't really know what she was saying. And so I just had to laugh about that, because I'm like here, you know, she got on to me for saying the word but and now she says a lot, lot, lot worse words than that. And I just had to laugh, I just had to see the humor in that. And then we took her to the doctor one time and then we're like, oh my goodness, she was flashing the doctor. As soon as the doctor turned around she would flash it and then she would giggle like a little child, you know, like a little girl. And oh my goodness, I thought I was going to die laughing. And thank goodness it wasn't my brothers in that room, or they would have had a heart attack in that room with mom if she had done that.

Speaker 2:
22:56

So, I just laughed.

Speaker 1:
22:57

I just had to laugh. I mean, sometimes you do because sometimes the things that the dementia patients do or say it's like you have to because it is funny, it's so out of character. Yeah, you have to, otherwise, like you said, you're gonna cry uh with it. So I see here. Your book raised over $50,000 for nonprofit agencies. How did that come about?

Speaker 2:
23:20

Okay, well, for the Tennessee Alzheimer's we did a fundraiser and it was an event down at Marble Gate, which was really close to where I grew up, across the lake, and this was. It was evening with the author and it was a ticket event. I gave away the books, I signed all the books and every book is signed with a purple Sharpie. Do you know why purple Sharpie? Purple is the Alzheimer's color and Sharpies are made here locally in Blount County, tennessee. So a lot of people didn't know that. So that one event raised $31,000.

Speaker 2:
23:56

And then before and you'll not believe this, but this shows you the power of social media Before that book was even printed, our art department did a cover just a cover of the book, and the Haven House, which is here in Blount County, they did a silent auction for eight books and eight barbecue dinners and that sold for $5,400 for eight people, eight books, and they sold it twice for $10,800. And the book wasn't even finished yet. So it was a silent auction and that's where people just be it online. So it it ended up. That was that, you know. And then I ended up selling um little t-shirts. That because mama just said be nice, it ended up. It was kind of funny because even though mama said be nice, mama got to being not so nice later on, but I sold those little t-shirts and then that went back to the tennessee alzheimer's.

Speaker 2:
24:55

So so that's, and I'm still trying. My goal is to try to get to $100,000. I'm about halfway there now, but I've been donating lots of books and I've been donating a lot of fundraisers to try to raise additional money for that. But still, $50,000, that was a lot, I think, for just for me starting out. And that's my first book. That's the first book I've written.

Speaker 1:
25:18

Well, yeah, that is impressive. So your book is. You Slept when Calamities of a Clumsy Businesswoman. Where can people get this book?

Speaker 2:
25:29

Yeah, they can order it on Amazon or they can go to my website. It's wwwbrenda and it's Prater P-R-A-T-E-R Sellers, s-e-l-l-e-r-scom, and I could do an autographed one on that website. But if I just want to order it on Amazon, it's on Amazon, and if they're not a reader, it's on Audible. And my cousin from Nashville reads the book Amanda Prater's Stribling and she's also reading Dolly Parton's book. So she's an award-winning narrator that's read over 750 books and she does a phenomenal job because she's Southern and she's an actress and so she does a really good job, a lot better than I could have done.

Speaker 1:
26:17

Well, thank you so much for joining us today on patty's place and, again, I hope everybody checks out your book as well and and if they have any questions, they can also send us an email off, uh, on my website, uh, the patty's place for the podcast for that. So I really enjoyed talking with you today, brenda. You, I think you gave people some really good tips on how to get through this difficult situation.

Speaker 2:
26:43

So oh, I know, so did you say. Your mother has passed away.

Speaker 1:
26:46

Yeah, she passed away about a year and a half ago.

Speaker 2:
26:49

Oh, okay, so it's still hard. I know. But I appreciate you having me and thank you so much.

Speaker 1:
26:55

Oh well, thank you. So hopefully we help some people who are in the middle of it all to help find some laughter through this right. I hope so, all right, well, I hope everybody joins us again right here on another episode of Patty's Place.

Speaker 1:
0:11

Welcome to Patty's Place, a place where we will talk about grief, dementia and caregiving. I'm your host, lisa, so grab a cup of tea, a cup of coffee or, if you're really having a rough day, a glass of wine and let's dive into these difficult topics of time. Today, I thought we might talk about grief and caregiving, you know, because we always tend to think that grief is just what happens after, but really grief is what happens before, during and after, especially with dementia. We go through grief in many different ways with it, but we do go through it as we are caregiving for our loved one with it. I think probably the first one that we go through is what's called anticipatory grief, that's, I mean, basically what it is is that we know this is not going to end good. You know, we know what the final outcome of it is, and so we anticipate these things. We also know that the person's never going to be the same as before this illness. After this illness even if it isn't dementia, you know, if it's a different type of serious illness we know that they're never going to quite be the same. And so you anticipate that grief that you know that you're going to feel, but you're also feeling it. In that moment.

Speaker 1:
1:42

You think about all the things that you used to be able to do and now you can't Like something as simple as with my mom. Her and I used to. We would shop all the time and I think about that and it's it was a loss even when she was still alive, because I couldn't take her shopping anymore. The last time her and I went shopping, usually her and I would go to the store and we would usually separate and she'd go look for things for herself and I would look for me. But the last time we went I we said we were going to go. You know she'd go look for her. I turned around and there she was and I realized that she needed to know where I was because she was confused and she didn't know where she was. So I think about that all the time when we did. You know that last time that we went shopping and I didn't realize how much I miss being there with her and shopping and what a good time we had and talking and everything.

Speaker 1:
2:45

So when you're going through the caregiving, you do anticipate you know that at some point it's going to be the end and you also grieve not only that person but in a way, you grieve the purpose that you have while you're caregiving, because caregiving becomes your life, gets centered around caregiving. For me, my weekends are the ones that are so hard, because I used to always spend so much of my weekends with my mom with it, and it's also hard. That grief that you're going through during caregiving is you have to begin to accept that this person is different, especially when you're dealing with dementia. With dementia, it is that there are two different people. They're the person that they were before they got dementia and then they're the person that they are with dementia. And it's so hard because you keep thinking about how they were before and you see what they can no longer do, what they can no longer handle, and you have to accept that you have to deal with them in a different way. And yet you're looking at this person and you're like but she's still my mom. I see her and I think about her and she's my mom and I still want to go to her. I still want that comfort. I still want her to tell me it'll be okay.

Speaker 1:
4:25

And yet there were times when she would say those things to me. She would say it'll be okay, or she'd be like are you okay? You know, and she still knew something might not be right. I really do believe and this is just my experience but I really do believe. Even when dementia patients don't know you like they can't tell you by name, they, you know.

Speaker 1:
4:54

My mom didn't know I was her daughter anymore. She thought I was just this nice girl. I really do believe, though, deep down inside she still knew me. She still knew I was somebody she could trust, somebody that she was close to with it, even though she didn't know my name. It was the same thing with my dad she didn't know his name anymore and she kept looking for him. With my dad, she didn't know his name anymore and she kept looking for him when he was younger. But she knew, she felt safe, she knew that we were somebody that she could trust, even though she didn't really know who we were with it.

Speaker 1:
5:37

And it's so hard, as you're trying to care, give and, and you realize the roles change and you have to almost you do. You have to parent them. If you're dealing with your parents with it, you have to take care of her, you know, like I had to. You know we would do her our nails together. I'd be like mom, let me cut your nails and stuff where she used to do that when I was little, or let me do your hair for as long as she would.

Speaker 1:
6:02

And another example of my mom we had a phone for her and it was a very, very simple phone and I had dialed in or programmed all the numbers that she would need. You know who she could call and she would sometimes call I'm not even exaggerating 30 times a day and it would be a lot. You know, my phone would ring all the time, and not just me. She would do that to my dad and that. And people would always say you know, you don't have to answer the phone every time she calls. And for the most part I would. You know, obviously, if I was at work and I was in a meeting or something and I, I couldn't answer, but in the back of my mind I always answered, even when it was hard and it was rough and she was upset or I had to calm her down because I knew in the back of my mind there was going to come a night, come a day where she wasn't going to be able to use the phone anymore and I was going to miss those calls. So that's a good example of anticipatory grief. And the day did come when she couldn't use the phone anymore, and I do miss seeing, you know, her name pop up on my phone. Luckily, I, for some reason, I just had a feeling that I should save a couple of her voicemails, because she didn't leave voicemails very often, so at least I still have her voice that I saved.

Speaker 1:
7:34

So those are things too, with the anticipatory grief as you're going through in your caregiving, you think about the things that you have lost and the things that you know you're going to lose with it. And I also thought about the things that she had lost as she was going through it, the things that she would not have wanted to be like. And it's so hard because it was so not her, but yet it was her. As I looked at her, you know, and I knew yeah, you know, there is no cure for dementia. So I thought about things of what I would miss when she wasn't there anymore. And that was hard too, because I was trying to be in that moment with her. And I think that we feel that way because, as we're trying to be in that moment and we're trying to take care of our loved one and we're trying to be in that moment and we're trying to take care of our loved one and we're trying to do what's right and we're trying to figure out doctors and medicines and what do we do? We're also grieving what was in that moment. As we're trying to take care of that person, we're grieving those little things like being able to pick up the phone and just talk and be like hey, did you see this TV show that was on? Or just have a cup of tea with my mom, you know? Or talk about whatever She'd be like. Oh, let me tell you what happened today, you know. Or she'd come over and she'd show me how to do something.

Speaker 1:
9:11

When I would come over by my mom, sometimes there was always this one recipe. My mom was a really good cook and but as she got older she decided that she wasn't going to. If the recipe was too long, she wasn't going to do it anymore. So if it was like over five ingredients, she said forget it, and she didn't like to roll things out. So she ended up giving me her rolling pin. But I would come over and periodically she there was this recipe she wanted to make. It was for a meatball pie, but she would always wait for me because she's like you roll out the dough and we would make it. And I miss those things. You know, my mom taught me how to bake and she taught me how to cook, and I miss being able to go, you know, over to her and share recipes and things like that. And as I took care of her, I could see that was something she could no longer do. When she lived with me for a while, I had to take all of the knobs off the stove because that would have put her in danger with it.

Speaker 1:
10:10

So you grieve what was how they were before? And you realize they're never going to be that way again and it's a way of life, a relationship. And you're grieving as you're looking at them and they're still alive and you think, how can I be grieving? But you are because you're thinking about what you lost and what will never be again and what is gone forever, what you lost and what will never be again and what is gone forever. And you're also grieving knowing that at some point this person won't be here anymore. And then you think, oh, that's terrible, I shouldn't be thinking those things. But you know, especially with dementia, that there is no way out. You know it's only going to get worse depending on where they're at and as they progress on the dementia.

Speaker 1:
10:57

And it's hard because no two people follow the same progression with dementia. Yes, there are different stages and there are different timelines. Well, it's not even timelines. There's different things, that symptoms or signs. I guess you know that people go through, but everybody goes through it at a different rate. So you really don't have anything. So you're feeling very lost in this maze because you don't know what's coming next with it.

Speaker 1:
11:31

And you think about how this person was and then how they are now and you're trying to figure out how do you do this, how do you work through all this? And you're trying to put that person first and yet you're grieving what you're losing and what used to be, especially if that person was like my mom. She was my person, she would have been the one I would have went to to be like how do I get through this? And there she was. And so you think about all these different things, all these silly things. As you're taking care of your loved one, you think about what you're going to lose what you already lost and you wonder just how, how do I get through all this? Because it's hard, it's really hard and I never thought about it as anticipatory grief, but that's what it is. You're grieving what you know you're going to lose, but you're also grieving what you already lost and what you're losing in that moment. You know, and it's so hard with dementia because you look at the person and, as I said, they look the same but they're not the same. So you grieve for that person as they're still alive, because you think about, maybe, how alive they were or how funny they were or the different things they used to do, and they can no longer do it, whether it's physically or mentally longer do it, whether it's physically or mentally.

Speaker 1:
13:17

My mom was unusual because she was highly mobile. For a severe stage of dementia that she was in, she was still very mobile and that was highly unusual. A lot of times the physical symptoms may come into play where they have trouble walking or things like that. With my mom that didn't happen till the end, which was highly unusual for her. But there were different things that I know she never would have wanted to be, you know, when she lost control, you know, with incontinence and things like that. My mom would never have wanted to be like that. I mean, nobody does, but those were things that that was something that would hurt.

Speaker 1:
13:57

Every time I would see that or that we'd have to, I'd have to try to get her to change her pants, you know, cause there was a stain on them. It's just. It would break my heart because that's just not my mom. And my mom would say things to me like, well, who cares, don't look, stain on the pants. I'd be like, but, mom, you know, we got to change your pants and she'd be like so what? Oh, don't look, or stop looking at it, or who cares? That's what she'd say and it was so not like my mom, you know.

Speaker 1:
14:26

And it would break my heart because I sometimes couldn't get her to change and then I'd have to ask the caregivers to help me and I would be like that is so not my mom, you know. Or I couldn't get her to change clothes sometimes with it, and it would. You know, I'd feel like so helpless that I couldn't help her and I knew this wasn't who she was. But yet this is who was the person that was in front of me now, and it's so hard because you just think about who they are as a person and who they are now, and then you think about how the illness has robbed the person of so much and yet you still want to give them dignity, you still want to treat them with respect because you still I mean, you love them, you know.

Speaker 1:
15:18

And it's just hard because there's all these emotions and maybe you're angry which is part of grief as well too and maybe you come home and you cry your eyes out because you're like how can this be and all of it's okay, like how can this be and all of it's okay. It really is. You have to get those feelings out. You have to get the anger out and the crying, the sadness, whatever it is, so that you can kind of take care of yourself and acknowledge that, yes, I am grieving. You know, I grieved for my mom way before she died, because I saw things, even before we were able to get her diagnosed, that I knew were not. They were not my mom. So those are things that you have to think about and things that you feel, and I think it's important that you feel what you feel in that moment and maybe you can't express it when you're with your loved one in that moment, but you have to give yourself that moment, even if it's just going in the bathroom and crying or screaming.

Speaker 1:
16:23

You have to give yourself that and acknowledge that you are grieving, because dealing with dementia is very, very hard. It is not an easy thing for the person who has it and for the person who's taking care of your loved one with dementia. It's hard and you grieve because you see what they're losing. You can see it in everything that they do and it does make you angry, it makes you want to fight. But there's such. There's nothing to fight with dementia. You know there there is no cure. There's nothing except all you could do is try to give them the best help that you can, make sure they're safe which is most important and do the best you can taking care of them. You know it's hard because you know sundowners comes around and sometimes they get agitated and it's hard sometimes to calm them down. And it's okay, as you're grieving through caregiving. It's also okay. You're going to make mistakes we all do, you know. So you have to be not so hard on yourself to know that it's all right, but acknowledge that you are grieving even when you're taking care of your loved one. It doesn't make the grief at the end any easier, but you do grieve while you're caregiving Like I said, especially with dementia because you grieve for the person who used to be and the person who you're dealing with and sometimes they are completely different.

Speaker 1:
18:11

People Like you may find yourself saying I don't recognize this person at all and that's okay because they're not the same, and that's okay because they're not the same. And I think one of the best things you can do for yourself as a caregiver is to find knowledge Like I said, the Alzheimer's website is a really good website or to find other people. Support groups can help too, so that you don't feel like you're crazy and you're alone because it's hard. Support groups can help too, so that you don't feel like you're crazy and you're alone Because it's hard. Caring for a loved one with dementia is hard and you do grieve.

Speaker 1:
18:53

You grieve all the way through the caregiving process.

Speaker 1:
18:57

You don't just grieve at the very end and it's really hard accepting that this person is no longer who they used to be.

Speaker 1:
19:06

And yet you know deep down inside there are moments that they are still there and I do think that they are still in there. It just gets sometimes harder and harder to find them and it's hard. If some days you don't reach them, it is, it's okay, you know, it just is, and so understanding grief is one of the ways you can try to be a little bit kinder to yourself as you're going through this process and we'll talk more about grief and caregiving, and caregiving and dementia as we continue on here at Patty's Place. Hopefully, like I said, you find this a place of comfort for yourself, a place that you know at least you don't feel like you're alone for it, and that's what my mom would always want. She'd want people to feel comforted and not feel alone. So I hope you were able to get a nice cup of tea, cup of coffee or some wine, and please join us next time right here on Patty's Place. Yeah, yeah, yeah, no-transcript.