Telling Our Caregiver Stories
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Welcome to fading memories. A podcast with advice wisdom and hope from caregivers who have lived the experience and survive to tell the tale. Think of us as your caregiver. Best friend today’s podcast is presented by pago. Pago is the easiest way for you to monetize your podcast providing podcasters with a flat rate for ad space. So you always know how much you get when you include an ad from go apply to become a member and immediately be connected with advertisers that fit your audience. That’s pago dot co at p. o. d. Go dot co and be sure to beatty memories in the. How did you hear about pugo. Section of the application telling our caregivers stories has many benefits both for those who listen and for us when we tell them learning how others have managed their journey as alzheimer’s caregivers what suggestions they have self care and how they navigated. Challenges are essential lessons for saul. I’m continually amazed at the number of caregivers who become offers. When you’re taking care of someone else so much of your life becomes about them sometimes. It can feel like you’ve forgotten who you are. Writing is a way to reconnect with you. What you’re experiencing your opinions passions and hopes. Today is the start of my fourth season of podcasting. I’ve talked to nearly two hundred caregivers and while each story is similar everyone has something to add to. Our caregiver support conversations. Today’s guest is both an author. And a podcast her both her book and podcast tell her story and i know you’ll enjoy listening to her and with me. Today is peggy sweeney mcdonald. She also has a podcast and a book. And as you know from many of the people. I talked to. I’m so impressed. By the things that caregivers create during and after their caregiving journey. And that’s a little bit about what we’re going to talk about. Today’s of thanks for joining me. Peggy thanks for having me jennifer. It’s wonderful to be here with you. So tell us about yourself in your family. Give us a little background. So we know where to yeah. I’m the oldest of four girls I live in baton rouge louisiana where i grew up after i graduated from alice shoe years ago. I moved to houston. I was an actress card then moved to new york. Met my husband there. And then we moved to new orleans and then we moved away so i was gone from my hometown for thirty six years. That’s a long time and a long time. yeah. I was the only daughter that laughed mother. Three sisters are here and have kids. My husband and i married a new yorker so we never got around having kids. We’re i guess too absorbed. So i came back for each of two thousand sixteen and when i came back for a wedding in for easter from los angeles was here for two weeks. I had a chance to go with my sisters. My mom and dad to the neurologist and my mom was officially diagnosed with alzheimer’s we knew it was coming. We but when you hear the doctor say your mother has alzheimer’s it just you know the reality sinks in as much as it can cause you’re still in shock and you still don’t know what what the next step is that night. My husband called from la and he got laid off from his job as a stockbroker. So he said it over the phone because his father had died of alzheimer’s in new york city and he just knew what his mom had gone through and he said to me. Well i guess the universe just made it real made the decision easy for us for us to back to louisiana and i had been campaigning. I was ready. La gotten so expensive. And i wasn’t a producer had segue from being an actress to becoming a meeting and event producer and my business because of the economy just kept going down and down And then my husband being laid off because of change management with his company it just it just seemed like it was coming and i had said to him a couple of months before you just want to be of service to my parents. I think it’s time to go home so we ended up. I ended up buying back and we for three months. We you know heard just didn’t put our house on the market so the house and five weeks and of course You know a like a nervous wreck and got rid of stuff and gave away staff and then we moved on. The movers came and we moved august of two thousand sixteen so a couple months after she was diagnosed in april and we came back on august like probably like august thirteenth or something so paying back and immediately there was the great flood of baton rouge that weekend and my parents.
00:05:10 – 00:10:02
My mom had planned a party for me and you know she was still functioning Knew that i was going to have some wonderful time with her. You know still had some good times. But i didn’t realize until like that week in the flood and we had evacuate reserve right. The water was coming up to our back yard. And we’re afraid we were gonna flooded but we weren’t but we had to evacuate across town and stay with my sisters. Electric was out for several days. And just seeing the odd behavior that weekend and my mom’s anxiety and the stress and how she acted towards my dad and my dad not knowing how to deal with it so we just kinda new like we could live with my parents here in this big house and we had our stuff the movers that our stuff in storage and we just decided you know we were gonna i really. My husband wanted to be back to new orleans where where he had lived a long time ago. But i just knew we needed to be here in baton rouge so we never laughed. We stayed we are still in storage and we were here living with my mom and dad through the next three years and then she We moved her into memory care. I guess it was january the end of january of two thousand nineteen and she passed away july second so just like five and a half months but it was a tough journey I never had children. So i was look. I didn’t have any idea of house. Take your another person and you know it really humbled me and i learned a lot and i. It was being notional in emotional journey in mentally physically. It was tough but we showed up and we were here and we were here for my father. Who’s now eighty five. And it’s been now a year and a half since she passed away and i. I always wanted to write about it. Because i had a book years ago. In two thousand twelve book a coffee table cookbook with life stories about food called. Meanwhile back at cafe de mon. And so i’ve been through the book journey and i was like i want to write a memoir about this about this journey of moving home after thirty six years and shearing these stories of like the and downs and the life lessons. And how. I grew as a person spiritually and emotionally and it just the whole emotional journey of life in the as and i called it as like. I was like berlin in the as zone for alzheimer’s. And i had this idea that i was going to write a book. And when she passed away. I kept thinking anita right anita right and have a look at my laptop every day and i would think maybe i need to go for a walk. Maybe anita eat. Maybe eat some sugar. Maybe you need to go watch netflix. I would do anything but right and a couple of months later. November of two thousand nineteen there was The louisiana book festival here in baton. Rouge and i thought i saw. They were having a memoir essay writing class. And i said i should go do that. And i heard my mom’s voice saying yes. She should go do it. Peggy and i got thinking. Oh i don’t know it’s only a three hour class. Do i wanna spend the money. And i just kept thinking. I need to do it. So i went and jennifer have to tell you that day. I dressed up put makeup on. It was cold outside. there was cold spell. My dad came in as it’s called outside. You’re going to need a coat and a hat. And scarf and boots and mulligans. And i went to the class and changed. It changed my life. I’m telling you. I walked in. And i the the instructor prompt us to write about something that we were embarrassed or shamed of and i wrote about how my mom would wear weird clothes and my mom who was a southern belle dressed. Impeccably matchy match all of a sudden was wearing inside out clothes. Dirty not take haganah shower. Things that would match my sisters are. My nieces and nephews would be embarrassed if we go out. So i wrote that story and then when i read it back to the class is we wrote it in fifteen minutes and then we read them out loud and when i read it i started crying and i looked around when i finished and everybody in the class was crying and the teacher. She said you know you have to do that. You have to write. this book. Started writing the book. And i felt when i left that class. I felt alive again. I felt like inspired. And like i had a skip in my staff and i just had a smile on my face. I felt like oh my gosh i came. I’m alive again. I felt like a a person again. Because i had been in so much grief. And so much for sears. You know and so. I started on coffee. Shaw this is before and started writing and then the beginning of two thousand twenty. I kept writing kept writing and then cova happened in march. My husband and i were gonna go to italy and we had to cancel that trip and my dad was gone with taking his nephew.
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His grandsons my nephews to ireland. And they and we had to cancel his trip and so i ended up thinking. Have this idea that it would be a great potash sharing these stories. The just didn’t have the energy to start trying to publish a book. Self published are trying to find a publisher in my original publisher. Does coffee table book. Said they weren’t wouldn’t be right for this so i you know. Have this idea that. I should podcast it. And i told a couple of girlfriends and one of them told me about these guys in baton rouge. You have student who helped people get started. So i made an appointment for my birthday july twenty of west of the two thousand twenty and on that day i went and taped the first three stories and i it’s been it was just like it happened really fast. I had the idea on july burst. July twenty nine. It came out. I now have twenty episodes. It starts from the decision when my mom was diagnosed and the decision to me back and it goes all through the next three years through the struggle and how everything changed into like us moving her to memory care those last few months and then to episode twenty s when she passed away and we were all there in her memory. Care room all four girls and my dad. We all spent the night and so anyway. It’s been an incredible journey sharing the story. Now people from all over the world. Listen as you know you know. It’s like we tell our stories and people listen you know if you build it. They will come. Says that there in the world. And i hope people are saying it’s helping them and it’s been You know being able to take being an actress and a writer and then going through the struggle and putting that all on paper and then sharing the stories it’s been it’s been a beautiful journey boy. I listened to the first episode. Like i said last week and unfortunately i do most of my own editing and everything so i end up listening to my own. Podcast truly cuts into the time. I have available for other podcasts. But what i loved about yours. Is you know that its narrative in it’s telling the story and even though your story is very different than mine it just i felt a connection and what. I really like about podcasts. Because i feel like. I like to tell people that fading memories is like your caregiver best friend you know you can tune in and get information and inspiration and at this point and i bet you it will change in there is. I don’t know if you’ve heard of the app clubhouse but some point they’ll probably be an interactive quality to podcasts. I don’t know how that’ll work completely. But i mean we could do it live but i’m not ready for all that craziness that this point so i wanted to go back a little bit and ask you what went into making the decision to move her to a memory care residents because i know people struggle with that and i know ninety percent of the people wait too long. And it’s like my. My dad’s should have my parents should have been in assisted living. It would have been very beneficial for my dad and my mom but you know as most people of their generation they were not even that was not even a consideration in so after he died which was march of twenty seventeen. We you know because my sister has school age children and my daughter had just moved out. And i just turned fifty. I’m like i’m not ready to give up all of my freedoms to take care of her. ’cause seventy four at the time and so i thought this could be easily ten or fifteen years. I have questioned whether i would have made a different decision. If i had known it wouldn’t have been that long. I don’t think i would have made a different decision. I don’t know it’s probably not a brain game. I play with myself. But most people wait too long they agonize over the whole decision and just makes makes the process worse. So what was your. What was the trigger. My sister who’s an attorney. My sister shannon. She’s the one the voice of reason you know. So she kept talking about it and saying we need to do it and my father. And i were just horrify. Were just like could not imagine maybe my mom and how angry she would be and we were just like no. She’s not ready. she’s not ready. And then we went to to look at different memory care facilities. We see people and wheelchairs and drooling on themselves and stuff from right now. Mom’s not like that you know she’s gonna freak out if we put her they are because she’s not like all those other people but you know because you only see like what you see and there were other people who weren’t that bad that in wheelchairs but you know that’s all we saw when you first go in there so what happened was my mom started wandering and leaving the house and she would get really mad at my father. She became really combative and me and just she told him she wanted her apartment. She wanted a divorce. You know it was like really really emotionally abusive to my dad that he had to listen to that.
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You know on a daily basis that she wanted to move in with her mother and he would argue inside. Your mother’s gone young mothers and dad. She wanted to and with her brother. Her brother had died the year before she would just get mad and pick up a person leave and then we would realize you know. We wouldn’t realize she was gone so we had to put the alarm on so that that annoying. I have a podcast about that. Annoying beep beat every time. Somebody walks in and walks out. We have a set the alarm but we would know that she laughed and they just got to be just too much. And then a clincher. Which really was the whole buying like the straw. That broke camelback was when she picked up the fire weiss shovel and she threatened to hit my dad over the head because he was lying to or that. This was her home because she no longer believed that this was her home they would. He would take her to lunch and they would come back and she’s like oh no. You’re not doing this again. I’m not on those people sound. Take me home these like you. Sit in the van gogh. This is your house. She told me one day she said hanging. These people are going to find out. We’re living in her house and really concerned so she got just really paranoid. And then i came home one day and my dad said it was the worst day and every day i’d i was working an event planning job kind of part time and when i come home and say how is the day and he’s like oh it was awful and he’d say you know tell me what had happened and that day. He said she picked up the fireplace shovel and threatened a hit me overhead. Because i was lying to her and she carried it around all day and i said oh. My gosh dad would if you know if you taking a nap in your chair and she hit you over the head i mean so. I had remembered her gone upstairs. He cannot my cell phone and text and my sisters. And i did not wanna hit send but toma said you know. I knew that. When i hit said that i was pulling the trigger on my mom moving into memory care and i just sat there on the edge muth baton just knew that i had to do the right thing and that once i sent that tax my sister shannon i would say that’s it and she did she said that zet i’m going to the memory care place that we think she’d be good at and within a day they had the deposit down and we’re making plans for the next weekend and i was like. Oh my god this is how are we going to do this. And of course. I’m having a light packer stuff And you know she’d be watching. Tv with my dad. And i’d go on her closet and grab on. Stop by just stuff and put an the secret suitcases upstairs and my sisters were figuring out who had furniture and stores that they could move into the you know because he was going to have our own little room studio with ryan little refrigerator and stuff own bathroom but it was really hard and you know we. Basically my sister came over with her husband that sunday morning and said come on mom. We’re going to launch. Took her there. And i just laid on that couch in cried is well just can believe and then you’re like what do you feel so lost because you’ve been on. I was cooking and clean and finding with our debate. That was another thing. She wasn’t bathing anymore. It would be a huge fight to try to get her in the shower. It just i just. And i just couldn’t do it anymore. I was going crazy. I felt like i was gone insane because of her. In the insanity of china deal with someone who has alzheimer’s. I felt like. I was starting to lose that. And i literally a year before we moved our. I finally went to my mom’s like general doctor to get help. And she said peggy. I’m surprised to see your name on the less when the doctor came in. Jesus spicy you today. And she gives you how are you. I’m a mass. And i started crying. And she said of course your. You’re living with alzheimer’s in a your sisters. No idea what it’s like to live. Twenty twenty four seven and she said you know you’re depressed anxiety like i. I couldn’t even put the name to all that. Because i’ve just felt like i was just emotional mess. I couldn’t sleep and so she said if you’re not getting rast and you know you need some sleeping age. You need some antidepressants. You need to take care of yourself. Because you don’t take your of your south you’re gonna get sick. It was a tough journey. But you know. I’m gonna come back to the year having to go to the doctor and i haven’t talked about it in quite a while but when my dad died with my sister and i don’t agree on anything and we agreed that we would talk to her. Youngest sister moms youngest sister who took care of their mom. And i’ve i’ve i’ve stated this before. I do not understand the lack of decision making but my aunt took care of her mom living on my grandmother social security so i guess what happened when my grandmother died. My aunt is basically award of the state on welfare and subsidized housing. And the whole nine yards and i just it infuriates me. That family caregivers get stuck in that that boat. Because that’s not what my aunt would have wanted or you know but it’s just what happened and i guess she’s accepting it and my aunt has her own mental health struggles so i.
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There’s a lot of a lot of dynamics that play into that. My aunt basically said we were going to have my aunt live with mom. We’re going to hire a caregiver to come in lee probably too so that there would be somebody eight hours a day seven days a week because my aunt didn’t need to do that. Twenty four hours a day because we already knew how hard it was and that would have just been. My aunts was is eight younger than my mom was at eleven eleven years younger than my mom. And still you know. She didn’t need to do that and she told my sister and i the she was not interested in prior to that being a planner and being kind of pessimistic. I thought about like worst case scenarios. Okay when mom goes first. And then this. And then that and i started thinking about it. I’m like i can’t do this. I’m not comfortable with this choice. That my sister. And i have agreed on which that was miraculous so i started looking around at memory care for certain out facilities residences and found one. That would take her and her dog and it was like. Here’s my money take money. I secured a spot for her. And then when my dad passed away i called him and i said okay. We’ll my dad’s gone. I don’t know how long we should give mom. They’re like we have space. Just bring her. Because it’s not gonna get any easier so my sister. I basically set up her room. We put all the family pictures on the wall. We set up her bad. We did everything to make it. Look as much like home. Possible that the first five minutes where. They’re very tall resident name. Richard is literally wearing and he’s got a stuffed animal stuff down the back of the pants pajamas. And i’m like oh. I don’t know if i could do this with my mom but i’d already had her at my house and i knew i couldn’t do that either so i was like. Oh this is this is not cool but my mom ended up with friends in the memory. Care residents to the point. Where the first christmas eve after this was christmas. Twenty two thousand seventeen. My sister and brother-in-law went to pick up mom. My sister texted me and said other. Diane is also coming hope. That’s okay which with my sister translation translates to. It’s going to be fine because we’re all on our way. Yeah fortunately was totally fine with me but like you said your mom. You didn’t think she was as bad as some of the people that were there. And that’s not an uncommon thing. ’cause i guess we have a tendency to see the worst things when we yeah so i joke. My mom’s name was diane. The galvez showed up at my house and christmas. Eve was other diane and then there was a third diane so we had other other day. So it’s very confusing. It was confusing for people who didn’t have alzheimer’s but she would hang out with them. And i mean they were just like their own little rat pack and it was. It was really good and as the other. Diane started getting really paranoid. And i had kind of noticed that my mom was spending less time with her and i don’t know if that was like my mom’s decision or just happened naturally but the thing that i found funny and like i don’t wanna say refreshing but comforting for me was. My mom had a specific story. She told all the time. And this one day mom. And i and other diane or visiting together ’cause it was always the three of us and mom starts in on her story and diane other. Diane slaps her. You’ve told me that story. Eight hundred and three times an hour. Laugh because i’m like well. Eight hundred and three is sort of a specific number on my mom kinda stopped and looked at her leg. I have well. That’s kinda strange. And then maybe a month or so later and maybe it was longer as hard to remember at this point. My mom’s starts in on the story again and other. Diane literally starts parenting the same story. And i thought that’s insane. Both of these women have alzheimer’s. My mom told the story so many times that she is programmed this other woman area. I’m like i don’t know if that’s elder. What but you know. It’s like my mom had somebody that could hear the story eight hundred three plus times. I’m not wanna just like smack. Their head on the wall rory jenner. It’s weird that you said that because my mom before we even knew realized that she had alzheimer’s she would you know my nieces and nephews and they’d all get roll their eyes ’cause she tell the same stories over never again and we would to and and you know we’d all be really annoying but you know now i would take any of those stories again you know when they’re gone that you’re like oh i would. I wouldn’t even take a bad day now. I would love to hear my mom or you know. I would love to have her. Tell me one. One more story. That i’d heard a million times. I’m not have her presence.
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That i’m not ready to hear the same story again. It was about dogs. I’ve had dogs all my life and be like. Oh god i can distract the streets. This awful pissy did little heard this story for years and tusk me of a woman that mom lived with could repeat the story. That is how often my mother told the story as terrible. But i there’s days and probably a lot of it’s because you know we were locked up so to speak because the pandemic for so long my mom and i would go out to the park or the pool or the library. She just loved to watch kids being a mom and a gramma that made her happy. I didn’t hear the dog story. Fifteen times in twenty minutes so that made me happy and we wouldn’t have been able to go out like for a whole year. Plus so i would just love to be able to like. Just go. hang out in the park with her. That’s kind of my my one like thing that i kind of miss although it was really challenging ’cause Visual processing was so bad that we had to basically stick to the paved walkways. And then i would like literally put like the folding lawn chairs on the edge of the grass like right up against the the walkway as soon as her feet touched the grass. You’d get this whole arm certainly like lady. The grass is flat and his mode. It’s not even long leg. It’s just a little little squish year than the paved like lease You know so. We couldn’t walk far into the park and it was a big change but we had some fun times in the park. My favorite memory. It must have been july fourth weekend. Or whatever whenever the fourth of july was in twenty nineteen. She died in twenty twenty. We were in the park. Lots of bunting in july independence day decorations going up and i was recording a little social media video. And i said you know. Hey everybody happy for the july. And i said you say it mom and she said company people company and i thought that’s a pretty interesting twist on happy fourth of july and it’s like it was just fascinating that that’s how her brain popped out what i like sentiment and so i miss stuff like that but yeah i i miss watching dancing with the stars of the voice of my mom. She loved music and dancing. And i i must dancing with or even towards the end you know. I’d put on music man. We would jump up and dance in the living room and even at the memory care unit but they used to one of the caregivers. Caretakers would play music on her. Come in and the afternoon and she’d be playing musical her iphone. You know i’d always grab my mom and we would dance towards the end. She was in a wheelchair the last few the like alas wait so and she couldn’t even walk anymore she’s so weak stopped eating so we can nance anymore but That was absence good memories. You know whenever. I put music on. Just look lighter up like a christmas tree. And she did her sparkle on her smile again and that lightner is and they have this video where. The woman was playing whitney houston singing. I ll always love you. And my mom and her dancing. And i’m singing to are in the. The caregiver took my phone and videotaped it and security video. I mean i look horrible. I looked down so at i gain so much weight. Thank god you know letting a lot of that go but just had gained weight from not working out and eating sugar and not eating raw by eating my feelings so look this video like oh my god look like but You know but it’s still. I’m never going to the lead that video. It’s on my phone because it’s my mom and danson you know like one the last time we danced together. It’s kind of actually. How the plo. My podcasts started. I kept looking for ways to engage with her that were positive and happy and in things that happy for her because if she was happy i was happy and ariza. Go music music. Music music never worked with her. I finally did find some songs. My mom love talk radio and so sometimes when we were in my car. I’d put on a podcast for her but she never really engaged with it. I think if i had Had the opportunity to just like put headphones on her says she could hear either my voice or whoever. Because you know there’s only like a million podcast. It’s and. I think she would have actually really loved podcast if she had been in her right mind when they those became popular. You know four years ago so it was. That was a big challenge. But you brought it up again about the weight gain and eating your feelings. And all that and a lot of caregivers do not realize or they don’t accept or admit to themselves that being under code veronica stress blah.
00:30:07 – 00:35:21
My mouth does not wanna save. being under. chronic stress is so harmful for our bodies. And then you know like you said you don’t eat right you don’t get enough sleep. You know that can lead to your own cognitive issues or cancers or diabetes. It’s like. I always made decisions for about my mom with everybody in mind because and this may sound you know really heartless but it’s like there are those of us like when my mom went into memory care. I just turned fifty so my sister was forty. Seven a mike. Some of us are going to be around a little while thing. Hopefully god willing. I have to like consider everybody’s needs not just the needs of my mom which obviously her needs were important. But i couldn’t always. I couldn’t always make her needs a over like mine or my sister. A niece or my. My nephew is on the autism spectrum and so sometimes you just had to make decisions that way. I feel right now. I i knew if i went and visited my mom and virus tired or stressed or my to do list was just spinning in my head. Likes you know like a bad movie she would. I wouldn’t even have to say anything she’d pick up on it and we’d have a fight in the visit would be terrible and then it just got worse from there so sometimes it’s like you know i either had to like really suck it up and just shove all those feelings aside or i had to pick a different day to go which was difficult with my schedule. The way it was. I had specific time that was hers and the other thing that i had something like one day. The doctor called me up and said you know this is like eleven thirty in the afternoon or morning. Dr wants you bring your mom in today. Oh really why can’t do that. You can’t like no i work. You do like. Are you kidding me like do. I look like an old enough to be retired or did some. How do i address like. I’m like independently wealthy. Because i don’t think either of those things are the case. It just ridiculous you know. I know a lot of people that will just drop everything and know. The doctor did not need to see my mom day. We needed to have a conversation about moving forward with some testing and whether or not it was worth the time is this was july of twenty nineteen and she passed away. March twenty twenty. So you know. Obviously there was a lot of things they wanted to do. That were weren’t necessarily in my opinion. And you just have to learn how to advocate for yourself and your loved one and the extended family and that’s a lot of work by itself. So i i’m trying to help caregivers learn that. Yes you need to take good care of your loved one but taking care of yourself is equally important especially because if you don’t take care of yourself you may end up sick and then what’s gonna happen with your loved one. Because that’s what happened with my dad. He did all caretaking. Did not want my sister and i had help did not accept offers of help and then he ended up in the hospital for thirty two days and my sister and my mom and i were like we bounced mom and the dog around and that was ugly and it was all bad so i try to. I try to tell. That story is so will not go down a similar path. It’s not fun well. And when i moved here in memory care were like trying to go every day. You know and i was gone every day. And then you realize she’s being taken care of and that we don’t need to go every day you know and we can go for an hour. I don’t need to go and sit there for four hours and thing was i like to go and go into her room and lay down with her. My thing was the soleil down on the mom’s bed and hold our light you know do spins and put some pretty music on. We had a little one of those little You know alexa boxes on her bed. Stan solid say alexa. Play barbara streisand pandora station or alexa. Play frankie valli layer by celine dion and our play. Some pretty peonies and i would just like say. Aren’t you tired mom. Didn’t you wanna get taken out his. I just wanted to lay there and hold her. And just you know my other sister was would go and talk or show her pictures. But i just i just wanted to just hold my mom and so many days of you know. Go there and she’d be getting ready to eat dinner. And i’d sit with her and try to you know. Try to make her eat at the end she was needed all and that was about battle. Just trying to get hurt. Streaks protein drank or having. She bites yogurt or some apple juice but You’re not always say. Let’s get your home. And i just wanted to have one on one time with my mom. I didn’t want to sit with everybody. You know they usually after dinner they bring them into the t the living room area and have some activity but when i was there i was selfish as i want to go home my mom and whole tied and have our weeds i just would lay behind her and have my hand across her waist and she would hold my hand and to spend there are no we didn’t have to talk she didn’t wanna talk you know at the end but just being there aren holding her and just just breathing together you know it was just i just think about all the time.
00:35:21 – 00:40:02
I’m so grateful that i did that. That’s one of the things that are trying to teach. People is make a decision. And sometimes you have to make a tough decision. Where when they’re gone. You won’t say dang it. I should’ve done x. You might think. I wish i had done more of why or i can see how i would go after lunch on mondays. And in the beginning. I’d spend two two and a half hours with mom and she thought i was her best friend so like laying on the bed like no she would not have gone for that so she she liked to sit around and chitchat. Because that’s what you do with your friends right. I like to take her out because you know it was harder for my sister. Because he’s got the kids and the kids have all their activities and they did activities after lunch and she just was not really capable of participating in so she didn’t she would sit around while other people did it but i would just take her out just for change of scenery for her. I felt that was good for her. Was good for me. And i just lost my train of thought. I hate it when that have. Where would you taker. Jennifer actually took off property. Oh yeah we’d go early on we would go. We are blessed to be near to regional parks. And so i would take her to one or the other depending on the time of year. One of them actually has some like wide walking trails up the hills to Let’s see well it’s a it’s a cave may used minds silver and then it was sand. I think remember for the silver my own personal history here in town and i’m like forgetting what they as to. What did they think it was silver at but then mostly it was sand and it was enough of an effort of walking that it was benficial for her but it wasn’t like steep it wasn’t too challenging except for the one time we went in the spring and the the sunlight was coming through the the oak tree branches and the shadows on the ground. Confused her if she’s literally stepping around the shadows. And i’m like oh my gosh so yeah we would do that. And then the other regional park is flatter and it has like a lagoon pool swimming pool next to a water reservoir. Just kind of a strange not really sure why they’ve constructed at this way and it has one of those beach entries so you can just walk in. Obviously that was easy for her why they put sand in the swimming pool in the shallow end. I did not understand. It was enough sand that it would shift near feet. Which would freak her out. So i’d have to like find the path around as much saying this possible. And i was looking forward to and i don’t know while they probably didn’t do it last year because ovid but they had determined that the sand was clogging up the filter. It was like yet da so they were gonna take all the sand out. I’m like oh that’ll be so much better because we can just walk in and just weighed around in the shallow end you know up to your ankles is not too big a deal and she can watch the kids swimming and she just she just loved to watch the kids in inclement weather which you know you guys have kinda like we do cooler. Days and wet day is and that’s about as much yucky weather we get. We’d go to the library which is also not open at this point. Yeah i mean. I just the whole thing of dealing with Parents have alzheimer’s and memory care during co. But i just can’t imagine and i’m just really grateful that my mom wasn’t around for that because if we weren’t able to see her or you know or she was not able to come out of a room or you know. Initially they were stuck in their rams and they brought their dinners and breakfast and lunch and dinner to them in iran. I just can’t imagine my mom would have gone crazy in a. She would not have understood why we didn’t come her. And that just makes that just tears muhart up when i see this on the news and everything are when i hear that nino friends who have parents. I have a friend whose husband. He’s only like sixteen four. You know that’d be sixty five. And he’s in the memory while he’s on the memory here he’s in. The system assisted living where my mom was in memory care but she wasn’t able to see him for months and months and months of his like crazy and finally they were able to go sit with them for like thirty minutes on a little porch in the front. But i just can’t. I just can’t imagine i mean i’m just so grateful that my mom was gone by the time that copen happen. I think my mom must have like a moment or two of white clarity. This is what. I like to tell myself anyway. Because she was very like your mom very combative.
00:40:02 – 00:45:01
She did not think she needed help to caregivers to give her shower and she what they told me was that after her shower she reached over to grab her clothes slipped landed on her kneecap which broke the bones under right below the knee. I’m pretty sure it was because of fighting with them and this is no blame. Nobody i mean other than mom. But i don’t really blame her either and took two people to shower her and that still happen. I mean like we probably should have gone to the rensselaer wipes which i strongly encourage people to consider so that was march. Eighth twenty twenty. She came back to the memory care. March twelfth saw her the twelfth fourteenth and the sixteenth and in the state of california closed down like completely march seventeenth and and literally the sixteenth. I was there the next day. They’re like nobody’s coming in. And i thought okay fine. I can handle a week or so. And after a week. I was like i’m really concerned that she’s gonna forget that i’m her best friend and not trust me. And that’s going to be a really big problem because she’s already combative. She told me to drop dead a couple of weeks prior to this happening. And i thought you know. She doesn’t recognize me as the person that takes her to go see children. We’re gonna big problem so after a week and a half. I was like okay. I have gone anywhere. I mean i’ve worked from home for sixteen years. My husband was going to the grocery store. There was no other place to go. Everything was closed. I was literally about call the executive director and say coming in high. You want me to do it. You wanna open a window in her room. And i’ll climb through like what do you want you know again. Yeah was i’m like this going to be beneficial for everybody. And they called and said she wasn’t doing well. And so i went and saw my sister went and saw her and she passed away the next day. I swear between the increased fame. Because of the i mean she went from being able to walk to being. We’ll bed bound and wheelchair bound. Not having to have somebody help her. Eat or feed her. I mean she just went from somewhat self sufficient to totally not self sufficient. I mean her the cost for her care like went up fifty percent and we had this whole cova things so no going to see children and so she was just like i’m done. i’m out. yeah thank god exactly his. I don’t think window visits would’ve worked. They did have a bench couple benches out front but that would have required somebody. Bring her out and it. Just i really really feel like the. I don’t know about the government. But i think like the corporations that run a lot of those residents and families only to get together and say okay while you know like people like dr fao. Cheer saying yeah. This has been really bad but this is not this is not like a one and done pandemic you know we could actually have more. We need to prepare them for the like or fine thought. Prepare that you know we can have other problems hopefully not as severe so this is obviously going to be a conversation that care homes need to have is like how do we let family members in and keep everybody safe still because just preventing families from going in and seen their loved ones just been the horrors i’ve heard about just it kills me and i’m so glad that my mom was like i’m done. Hope yes me. She died on march thirty first of the higher feed in demand. Like i swear she had literally a split second of clarity and she’s just like nope. This is all bad. You know so. ’cause i was really fine with the wheelchair. ’cause i thought man. We’ll be able to get to other parts of parks and and get closer to the playgrounds with the kid. This’ll be great. I’ll be able to move her around. But yeah it’s just crazy but i do remember when i lost my train of thought a minute ago. One of the things that. I wish i had done differently. I wish i had listened to guests a whole lot. Sooner was i would go for two two and a half hours. I literally blocked out monday afternoons for mom. It was too much for her. Not maybe the first year but we would have more and more problems. The longer i was there the more problems we didn’t have having and was december. Twenty third twenty nineteen. I went a picture up for christmas. Lunch drove her around to the assisted living dining room. We got out. It was her for lunch. We had a nice lunch in and they had really good food where she lived and i gave her her one gift. Which style was hard enough. Because you know you just want to shower them with love and gifts and we had the best time literally took her back to her room literally. I was there for like maybe an hour and ten minutes from pulling into the parking lot to pulling backout best visit ever like doing this from now. On and then it all went downhill from there.
00:45:03 – 00:50:00
i know g fell. You know we were. They encouraged us not to take. Take them out We just knew that my mom once we took her out she was not going back now. I did have to. She got a uti. And i did take her to the hospital and she’s been denied and but the next day she was pulling on her iv’s. And oh my god. Harvey up bounty. No she yelled at me. When i was trying to take her into the bathroom and told me to get out and so i fight binds i walked out and then thirty seconds later opened the door. And she’s standing there like an approval of love with blood everywhere shipbuilder. Ib out and were like okay. Back to memory care at this hospital situation is not working out and you know what took her back to a memory care. That was the only time we ever to grou- they told us you know it. Just it when they you take him out. It’s always so much more difficult to get them once. They’re back to back to their routine. Sadly interesting because i would actually take out. There was one time while mom. And diane diane mom and other diana i would go out together. A watt and there are people who still think that. I was in saying they’re like why. Would you take out to women with alzheimer’s mike as they talked to each other and i didn’t have to participate if like they can talk jennifer. That’s amazing name. There was one that you know it. Just it worked. I mean it was sad when other diane are getting really paranoid and i couldn’t take her with us because then i had to deal with my mom all by myself but there was one time i showed up. My mom didn’t like it if i did her nails so i was taking her to. The there was a literally thankfully a nail salon like five minutes down the street. I mean super close. And i got there and i said oh we’re going to go get manicures is not gonna be nice. Unite can have a girly day. And my mom’s like oh okay well can my friend common. I was like oh lord okay my okay fine and so. I’m like literally taking both ladies out the door. I’m like oh wait. I probably should tell the care staff. And i’m taking the with and so they’re like. Oh we’ve never call her daughter. I’m like oh yeah that’s probably a good idea. I mean they were so used to my coming and going with mom and the other diane that you know it was like they knew it was fine and i knew it would be fine. And you’re they thought better like maybe alert her family and they were they loved. They were so grateful that i did that. And they’re like how do we pay you back and like just do something nice for my mom or somebody else’s mom like you know. What is it fifteen twenty bucks for a manicure. Like not not going to break. The bank knew so. Don’t worry about it. And they had a great time together and it was fun to like. Watch them interact in like a more natural setting. My mom did take about a month. Six weeks to acclimates. We didn’t leave those first six weeks. I’m trying to remember when we started going out. She moved in march sixteenth. My dad’s funeral was the eighteenth so we took her out. then it probably wasn’t. That long was probably may of two thousand. Seventeen that i started taking out part of it was just. I didn’t want to deal with the other residents. Try to talk at me and get me to help them with like no. I’m just here for mom. Like taking her out actually was it. Just our was just good for both of us and what was funny. There was one so september of twenty nine hundred eighteen. My husband and i you know back in the days when you could actually fly places. We had just gotten home from denver. I don’t know how many times you might have flown loan through the denver airport. Every time we fly through denver we get stuck and we got stuck coming home. So i did not get home until i one or two in the morning and i am like not a nighttime person. I’m like it’s daylight. I’m awake of his dark. I’m about you know it’s just the way it works. And i knew i was tired and i thought i better do something with mom in the community because by tied to take her out and she gives me some sass or whatever it might it might roll downhill into just huge pile of negativity. And so i show up and it happened to me. My wedding anniversary said brought my wedding album and they show up but she’s oh. Where are we going. And i was like. Oh crap so i. That was how how she saw me as the fun person that took her out and we had a good afternoon that day. Despite the fact that we didn’t go watch kids but it did get a little bit harder at the end. His she was just she didn’t want help and she needed it in taking her out. I would take her out in within the community. We’d walk around the whole complex. We’d go over to the assisted living side. We go the assisted livings garden and patio area. Just a little change of scenery mean. It wasn’t changed for me but she hadn’t seen it before so it worked.
00:50:00 – 00:55:02
What is next. You’ve done twenty episodes of your podcast. Well i’m taking a break. ’cause i’m really Decided i wanted to go back to the book. The book idea so just yesterday was the first day because i put out three weeks ago. I put out episode twenty. And i decided that’s the end of season one and that i you know i do wanna do a season to. I’d love to do interviews like like you do. I’d love to interview like my dad. And my my husband. And my sisters. And i would love to continue you know rotate with interviews with telling stories about the year after and the he elaine and you know how i adjusted to life without my mom and how those lessons that i learned are still with me and how. I’m learning how to take care of myself. But they were talking before we started today about self care and self compassion and one of the things i wanted to you know i just really feel like i want to put this in a book. Form his earth stories. That i didn’t include on on the journey and i’d like to go back to it. I’m re editing ed and putting together and we’ll put together a book proposal and try choose Pitch it and see if i can get a literary agent and a publisher. The publisher that i had arranged for my first book would not be right for this. So i would need to start from scratch and then if i can get some interest that great if not left to self publish it or do any book. There’s a lot of people who don’t listen to podcast as you know you know especially older people like my dad. We’re going to fix that. I mean we literally had to tell them. This is what you do. Take your phone. Yeah the iphone. Okay go to the podcast app. You know there’s a lot of people. Joan are even young people to have their like. Never listen to five guests. So i really think that i’d like to get it out in a boat for him. To said life in the a zone is a book. Or maybe i’ll change the title of the this one originally. I was going to call it. Don’t forget how don’t forget how or because that was the last words of wisdom. My mom said today after that hospital visit when descent pissed off at me. And i was. I went back like a week later and we just did not end while that day in the hospital when i yelled out for pulling out her. Iv and booth and she looked like a little girl who had been scolded in. I was a mass. And i felt awful screaming for the nurse screaming. Mom what did you do. It was just. I was not one of my better days so the next week i went to memory care unit as to see her and as i was leaving to sit in the chair and she said she just looked at me and said. Don’t forget how good you are. And i was like it was like it was coming from somewhere else. Like my mom’s never told me that before and walks out on. Wow i so needed to hear that that day because i was beat myself up about how had acted at the hospital the week before and to hear her. Tell me that it was like my mom was barely talking at that point. Something so profound came out of you know. Don’t forget how good your and i thought that would be a really great title to the book. But now i have this brand of life. In the as i went the podcast will probably be life in the is the assad title. I like i like the life in the as zone. That’s really cool. There’s an author that i interviewed last year. Jack cohen he wrote a book called life on planet. All’s which is a you know. So when i hear title it reminds me of his and i think those are kinda catchy and they kept your interest but i i love that story and it reminds me the saturday before the shutdown for the kovin. I was with my mom. And i brought you know because the one thing with the memory care. I always knew that all of us were a team. I never expected the care staff to do stuff for me or in the or do do things for mom that i could handle. You know if i was there in we were a team to take care of mom. The one gal that was in charge of showers and she got the brunt of moms combativeness she said. Oh your mama. She’s gonna need like house coats which was like Now my mom doesn’t wear the side brought you know really nice soft fuzzy knight slippers that she never wore and like a a bed jacket because they asked the actually asked me to be by her dresses. Because they’d be easier to put on and off in the wheelchair. Really glad. I didn’t do that considering mom didn’t last much longer after that. The one caregiver got my mom to like kind of laughing and smiling. My mom was asleep more than a week at this point and the last coherent words that i heard from my mom where you know time just flies and i watched that video of her that i did. You know the day after she died and i was like pan.
00:55:02 – 01:00:01
She must have known something was coming. Because it was just wild. It’s a really. I find the brain so fascinating and by wasn’t an artist and creative person. I might go into brain research. But i don’t think i have the aptitude for that kind of science. I just find it fascinating. So are you familiar. do you hear that. Tony bennett has alzheimer’s. They just announced it yesterday. He still thing he still had been performing. And he’s an artist to still with like seeing and painting and you know he still lives. You know but will kobe. Shut down all the singing and stuff but they still. He still goes in and and sings like twice a week. he goes they take us into studio. And he’s saying so it’s amazing you know It’s just amazing that you know they. The end among could barely talk but she as a mom she sets that i needed to be tolls. That’s always forget. How great you are. You know that your daughter basically is to me. That’s when i got out on that. I’m a good daughter. Anita remember so. I i try to live by that now like you know. I’m still forgiving myself. You know not behavior. You know not reacting my behavior and reaction to her. Was i mean not i mean i i stumbled and i fell and i even get up and try again and i you know i would get so frustrated and so angry and we were getting bites about her shower which was wearing and it was just about it was about all and i think that you know. Now i’m i’m really just china. Take care of myself and Writing this again you know going back to the stories that are written and recorded as the podcast and discussion back and trying to get it. You know edited and and adding some new things to it and it’s just been. It’s just such a healing journey. And i just realized how much more healing i need to do and doing yoga. Meditating and crying out. Did you ever get that little book healing after loss. No off to add to my Pauline martha hickman every day. There’s a a little. There’s a little while so like today as today. The first of the second second friday is february second. He’ll find the link for this book in the show notes today february second. It says it is true. That grief extends our sensibilities. We finally have a sudden kinship with those who have suffered losses similar to ours. We may like the women in this aggie story. There’s a little story beginning. Who had recently been widowed. Find ourselves in the all the strength and ourselves to simply go on living and the face of such suffering. We realized how much we have been spared not to have encountered this kind of grief before and our hearts go out to those who are young and sustain a major grief too soon or they have had here for years to treasure. All of this comes as a kind of astonishment in the first period of greed like are plunging into cold water. It takes our breath away. That’s beautiful. I’ll definitely have to pick that up. There’s definitely it’s a great for every it’s perfect there’s Definitely a journey of finding yourself after caregiving. Even if like myself. My mom was in the care home. It’s it’s amazing. How all of a sudden you’ve got this giant void and some guilt. But that’s what you and. I are here for with our stories and interviews to help people on the journey before during not necessarily before but during and after so i appreciate this. I really enjoy your podcast. So i’m encouraging everybody to take a listen to life in the as zone. It’s a good companion to this one our minds a good companion to hers. Which do you want to hand in. Hand on one It’s on facebook and instagram and twitter and And it’s on all the major podcast platforms me to peggy’s story is like most of ours but with her own shall we say cajun twist for those who haven’t been new orleans cafe du monde is where you get the heavenly deep fried been yays. It’s basically a french donut. My parents were their way back in. Nineteen seventy six. Be sure to check out her podcast. She tells her story so beautifully. You’ll be enthralled after talking to peggy. I was reminded of a couple of quotes that. I want to leave you with sharing. My experiences with other family caregivers makes me feel less alone. And when i feel isolated. I make an effort to connect with others. That’s what this podcast is all about that connection at times when you can’t connect with someone else. I know how much i’ve learned from all my guests and they know your getting the same benefit.
01:00:01 – 01:01:25
Please share this episode with other caregivers. It’s easy to do from all podcast apps. It’s the best way to help me grow this show and help more caregivers in the process. Lastly if you’re not signed up for my weekly newsletter you’re missing out. It’s not long. I’d never sell your info to anyone and it’s quick and easy reference with a more personal take on that week’s topic there’s links to the show in case you missed it teasers for the show coming up and a good one to catch up on i also share a tasty recipe and a personal photo in story most of the time. It’s the dogs but sometimes it’s something pretty if you’re not signed up just head over to the website and click the link. The website link is also in the show notes. Isn’t everything in the show notes. I also wanna show a little gratitude and thank melissa smith yoga for a recent five star review. That says i am grateful. There are shows like this to help caregivers through all that they experience. It’s not an easy task and the tools. Fading memories provides are invaluable. Thank you for the work you do. Thank you melissa. For the beautiful review. I really appreciate it. And i’m glad that you’re getting a lot out of the show. That’s a wrap on episode one of season four and as always. I’ll be in your ears again next tuesday.