Alzheimer's Disease and Caring For Aging Parents with Rayna Neises Artwork

Ebb and Glow

Welcome to Ebb and Glow — the podcast that shows you how everyday people are taking on life’s ups and downs and coming out better than before. Your host, Jenelle Tremblett, will be with you weekly and with special guests, to chat about everything from careers, relationships, mindset, and everything in between. Are you tired of only seeing the highlight reel? Me too. This podcast will instead be peeking behind the curtain to reveal all the steps, pep talks, and glasses of wine that must happen before we become strong, confident, and resilient.

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Ebb and Glow

Alzheimer's Disease and Caring For Aging Parents with Rayna Neises

January 31, 2023 • Jenelle Tremblett • Episode 119

#119: At age 16, Rayna began caring for both of her parents during their separate battles with Alzheimer’s over a thirty-year span. She chats how she had the strength to be a caregiver everyday, the importance of hiring a team for help, and the importance of faith during this time.

Today, Rayna is an Author, Speaker, Podcaster, ICF Certified Coach, and a Positive Approach® to Care (PAC) Independent Certified Trainer. She is now able to look back on those days with no regrets – and she wishes the same for everyone caring for aging parents.

Rayna's Ebbs

Caring for aging parents
Caring for parents with Alzheimer's Disease

Rayna's Glows

Learning the importance of hiring help
Learning how to navigate this season of her life with no regrets
Encouraging others to make the choices that will help them bury their parent with no regrets

0:00

Welcome to the ebb and glow podcast. I'm your host, Janelle Tremlett. And I'm a firm believer that even when life doesn't go as planned, it is taking you exactly where you're meant to be on this podcast. I'm here to help you finally release control of what you think you want and begin to just trust in the ebbs and flows of life. Each week, I will show you how to build that positive mindset radiate with self confidence and cultivate an unshakeable resilience. Let me prove to you that even when life ebb. You will glow.

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Hello everyone. And welcome back to the Eben glow podcast. I'm your host Janell. And if you're a longtime listener, this will not be your first episode where you hear me with a raspy voice. I don't know what it is. I was in Costa Rica for two and a half weeks. And by the last few days of the trip, I had this awful, awful cold. And my roommates, I was living in hostels and whatnot. Uh, when I was traveling and my roommates were like, we're gonna miss you, but not your coughing. I was coughing. At, during the night and sneezing and. Ah, I hope I didn't affect, uh, too many people. I know I infected a couple. But hopefully not too many. I will keep this short and sweet, because like I said, my voice is awful and I apologize for this episode for my voice being bad as well. I recorded this at post Costa Rica trip. So you're getting the raspy Janell voice. Uh, the same as what it sounds like as I'm recording here. I also think I can't really hear, well, I don't know. I'm falling apart guys. Um, When I was on the plane, back from Costa Rica, the. I never get affected by the altitude of like your ears popping, but by God, My ears killed. I so bad. So I feel like maybe they're still a little clogged, so yeah, I need like a full like ear nose, throat specialist doctor right now. But it's all good. I'm sure. I think it sounds a lot worse than it does when I do sound like this. My friends are always like, Ooh, you sound like a Brooke Davis from one tree hill, which is absolutely my favorite TV characters. So,

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Hey, I'm

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not complaining. I absolutely loved this episode with Reyna. It's all about, caring for aging parents who are diagnosed with Alzheimer's. So as you'll learn in Marina's story, at the age of 16, she started caring for her mother who was diagnosed with Alzheimer's and that went on for many, many years. And then few years later, her dad also got diagnosed. So Raina has spent a big portion of her life being a caregiver in terms of Alzheimer's. And

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it's

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inspiring hearing her story and

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just hearing. so much more of a positive outlook on all of it, as opposed to the negative, which is what I would

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expect.

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I tell her towards the ad. Like I just admired her strength

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throughout this

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whole journey she's been on because I know myself well enough that I don't think I would have done near

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as good

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of a job as Raina has. So. Like I said, her story is very admirable and her strength is extremely inspiring.

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want to give you a little insight into who Raina is before we jump into it.

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Raina nicest understands the joys and challenges that come from a season of caring. She helped care for both of her parents during their separate battles with Alzheimer's over a 30 year span. Rayna is able to look back on those days with now no regrets. And she wishes the same for everyone. Caring for aging parents. Raina is the author of no regrets.

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I hope

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for your caregiving season. She's also an ICF certified coach, the host of a season of caring podcast. And a positive approach to care. Independent certified trainer.

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She's

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also obviously a speaker who is passionate about offering encouragement, support, and resources for regret free caring, aimed at preventing family caregivers from aimlessly wandering through the important season

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of life. Rayna

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lives on a farm in Southeast Kansas, with her husband, Ron and small pack of adorable dogs. She is the baby of her family, but most would never guess that she is a former teacher who enjoys crafts of all kinds and spending time with her grad kids. Most of all. Raina. Thank you so much as always for being a

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guest on

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today's episode. I've said this so many times, but your story and strength is so inspiring. And I wish you nothing, but the best in the future. And for everyone listening, enjoy the episode.

4:30

rena, thank you so much for being here. I'm so excited for our convers. Thank you. I'm excited to be here as well. I, I don't know a ton about Alzheimer's, and I think I told you that before. My great-grandfather had it before he passed away, but I wasn't around him a lot. I lived away at the time, so I only ever heard about things like, Throughout other family members. So I just think there's so much for me and the audience to learn today about Alzheimer's and just the idea of being a caregiver on that side of things. Yeah, it's really a difficult disease because though there are similarities, there's a lot of differences. And so when you know one person with Alzheimer's, you don't really know Alzheimer's because it looks so different in different people I know. And. I think, again, I'm no expert on a lot of diseases as people age, but I find Alzheimer's is probably one of the saddest ones out there. Do you think so too? I would say that of course, because I've lost both parents. I haven't experienced anything else. Yeah. But it's one of those things to realize that the people who brought you into this world and love you more than anyone else don't even remember who you are or. Don't remember ever having children, period. It can be very difficult emotionally, I mean, emotionally, connection wise as a, as a daughter, like. That's everything for your parents, like knowing who you are, and even if you are a, a wife or a spouse of someone going through Alzheimer's, it's so tough. Like just, yeah, like you said, you just, like, you're, you're forgotten about. Mm-hmm. And, you know, the thing that's really good about it though is because I hear people say, well, they don't know if I visit them. You know, if they, if they're in a memory care place or something, they won't know. They won't know if I go, but there is a heart connection that never. Yeah. So though they don't recognize your name or they'll say, no, I don't have kids. There's just something there. My daddy, he just had a smile for me. Yes. And it was like, there was just this recognition at a very deep level that never disappeared. Hmm. And it's almost like the person battling Alzheimer's as well. Like, they're like, I don't know who you are, but I know I do know you, but I don't know you. Mm-hmm. And that's one of the really hard things too. Just that in that struggle you see in, in the processing, because most people think of Alzheimer's and they think of memory loss, and it's definitely a huge piece of it. Yeah. But it's brain damage. The brain is dying. A person who dies with Alzheimer's disease, their brain is physically smaller like. Significantly smaller in size. And so there's been so much death of memory cells and other cells that they actually have difficulty processing and, you know, being able to start and stop tasks. I, it just, it overlaps everything in their life. So the memory is one piece of it, but even just the figuring out of things becomes really difficult. Yeah. I wanna set the stage for everyone listening today. You cared for both parents with Alzheimer's, and I remember when we spoke last, you have siblings, but I think you were mainly involved, right? Not really Any of your siblings. So I have an older sister, yes. And so she actually just lived a couple miles from my parents' house. Where we grew up. And so, um, she actually was a crucial part. It was just okay. It was a teamwork thing. Okay. I was, I was a little more hands-on. She was more doing the books and the doctor's appointments and the scheduling. Yeah. When it came to taking care of my dad with my mom, I was actually just 16 when she was diagnosed. And so, you know, the caregiving looked totally different. Number one, my dad was her primary caregiver and my dad was really good at saying to me, you know, Rena, go live your life. I got. You know, so my caregiving looked really different. I, I tried to come as an adult and, you know, send him away, give him breaks, but that daily caring was different for her than it was for him. Mm-hmm. she lived 12 years and then six years after her diagnosis, my dad was diagnosed. So when we had a 14 year journey with him. Wow. So if you're 16, at the time that your mom is diagnosed with Alzheimer's, how old is she? She was just 50. that's young. No. Yes. Yeah. And at the time, she would've fallen in the category early onset, which has some different characteristics. And typically an early onset person only lives about four to six years. So I was expecting her to be gone very quickly. And like I said, she lived 12 years, so we had her for a very long time. But her verbal skills were gone. I would say. Within three years, it's, it's honestly hard for me to remember the last thing my mom said to me as far as something like having a conversation. Now I could say, mom, do you want a hamburger or chicken? And she could, you know, kind of communicate in that way for probably four or five years. But Right. Literally the last seven years, she was non-verbal. The only thing that she said was gibberish. That's really. You know, I think for me it was all that I knew. Yeah. And so you're, when I, you're at age 16, like we don't, we don't know. I don't know. I don't have that many memories prior to age 16. So if that's when like your core memories start, that's all. You know, like you said. So I could look back on it and say, my mom was an awesome mom. I mean, she was a stay-at-home mom. She was always there for me. But that relationship, I mean, my gosh, when you're a teenager, you don't see your parents As people. much less start to build a relationship. So it was a little easier to slip into taking her to the bathroom, feeding her, doing those things, because I kind of never knew any different as far as, yeah, relationally. That was definitely a hurdle for me. My dad and I were very close as adults. We were in business together. You know, it was a whole different relationship when he started declining, and so that was really hard for me because I thought, there's no way I can do those things for my dad. Now, I'm very thankful that I actually could, but it was not something mentally I thought that I could. You know, I think you can step into things you don't think you can do, especially when you just see they need you right there in the moment and you just do what you have to do at 16. Like your dad said, go live your life. You're in high school, you're just really starting high school, and in a few years you go off the college. So how did that make your life different? So that was the, that was the challenge. You know, for me, I think I, my parents were older, obviously. Yeah. When I was born, and so there was a little bit of a generational gap there. But you know, my friends are worried about boys and what to wear on dates and all of those things. And my mom's dying. So this is a whole different level of, yeah. Let's get real what's what's important in life. And so I did, as I was looking for colleges, I was, there was one that was about 45 minutes away and I was like, ah, it's okay. The one I really wanted to go to was like two and a half hours away and, and my dad realized what I was doing because I was leaning towards the closer one, and that's when we really had that conversation. He's like, no, no, no. I want you to go and live your life. You know you, yeah. That will make your mom happy. See you be happy and do you know what's important to you? So I was so thankful for his wisdom in that because I was, my instinct was to pull back and to be closer to home and, and try to step into a role that wouldn't have allowed me, you know, to really. Become the person I am today. I think it speaks a lot to your dad too, of recognizing how young you are and telling you, go live your life. This is not your problem. Yes, I, I don't know how many people would do that. Like it's a lot on his plate as well. Like he could use the extra help. Yeah. And honestly I don't know that he really knew you know, he was working, he was the chief financial officer at Folger's Coffee at the plants in Kansas City. So, you know, he was a career guy. We were a very traditional home, and my mom cooked and at dinner on the table, she was a stay-at-home mom. So, Her memory slips probably weren't showing to him near as much as they were to me. Cause you were around a lot more. Yes, and I was struggling with, I would tell her things and she would forget and then I would get in trouble and she would say, no, you never told me. And it was like, But I really think I did. So my sister's two and a half years older, so she was off to college by the time mom. Right. As mom was diagnosed. But before then, there's always things, so I look back and we struggled with mom remembering things, but we didn't really know why. Right. And honestly, even when she had the diagnosis, I don't think that my dad understood. That those kinds of things were happening. And so I was struggling. How do I be respectful? How do I, I, I just, it was hard. And he said to me later that he actually, they got her tested because I said, something is wrong with mom. Hmm. And so he started to notice a little bit, but I was gone to college one year and he retired early to stay home with her. So she had a kitchen fire. She had some other things that creeped up. Obviously she was declining, but I, I just don't know that he knew. Really what was happening until I wasn't there as a buffer to try to help and to try to, you know, offer her some structure and some reminders, you know, that kind of thing. So it happened pretty quickly once I left the house that it was like, oh, okay, this is. You know, this is getting pretty serious. And he hit an age where he could take early retirement and he did. He wanted to travel, he wanted to do things, and they did for a couple of years, but her progression was pretty quick early on. And so that left him at home as the primary caregiver you know, for the majority of her disease. Wow. What I was gonna ask is what I've heard about Alzheimer's in the past, and like, the little that I do know is the person diagnosed with Alzheimer's. I've heard they have a lot of embarrassment. Did you notice that in your mom? I did, especially when my dad retired because he started to take over, and again, it was kind of an authoritative household. So you know, dad just kind of did what Dad wanted and we all just kind of were like, okay, you know? And so he started, like for example, my mom had more of a cluttery kitchen. She liked things on the counter and dad did not like that. And so he came in and started taking things off the counter, and I can remember. Oh, I, it was probably the one of the hardest memories I have of her talking. Poorly about my dad being frustrated and angry and right. He's just being mean. You know, those kinds of things. She couldn't see the big picture. She didn't understand why he was doing what he was doing. All I saw was, here's my dad who gave up his career to take care of you, and you're not even thankful. You know? And so, It was a season, it was a period of time, and then she became very compliant, very grateful. She would say thank you when you helped her, you know, so she, it didn't, it didn't last very long for her. My dad, I would say he struggled longer. I, you know, why do you think that is? Personality? Yeah. My mom was a more. Easygoing kind of personality. Uh, a more introverted type person. My dad was a go-getter, a really strong problem solver, and so he really just, Tried to figure it out. Tried to figure out what was going on. And so we were in business together and he would um, when I would go home, I lived about four hours away. And so when I would go home to visit almost every visit after his diagnosis, I went home at least once a month to spend time with him. And yeah, he would say to me, Rena, can you help me with something? And I'd be like, sure, dad, what? You know, what do you need? And he's like, Something's wrong with me. Can you take me to the doctor and help, help them figure out what's wrong with me? And I'd be like, yeah, dad, something is wrong. And you know, we've been, and, and you're taking medicine and we're doing all that we can, you know, it would, it would pacify him in the conversation. But then he, so he struggled. He knew he couldn't. In fact, he called me at work and said, something's wrong with my memory. From the very, when he was first worried and I was like, oh dad, you know, we don't really know what it looks like. Took her old mom was so young, he dad was in his early seventies by that point. I'm like, you, no, we don't even really know what normal is. Yeah, just go to the doctor, everything will be fine. But he's used to being so sharp. I'm sure especially working as Financeers career, like if he's, for lack of a better term, slipping up a little bit in his career or in his memory like he's gonna. He knew. He knew that he was not, everything wasn't as sharp and as easy as it once was. So he did he, you know, he reached out for help. His initial diagnosis with mild cognitive impairment, which about 50% of the people start with mild cognitive impairment. Some will stay there, about 50% will stay there, 50% will progress on to Alzheimer's. So he knew early, early. There was something wrong with his processing. There was something wrong for him, and he knew for a long time. He asked for help. He, he was willing to say, you know, oftentimes people struggle, especially like you said, with him being in finance, struggle with giving up the checkbook or giving up the car, and those kind of things. And dad was happy too. You know, he, and he said to my sister, who lived just within a mile of his house, you know, he. I think I want you to start paying the bills. And you know, she had access to the online stuff even before then. He was just really open and willing to accept help. So it was, we were so thankful because it wasn't a big fight. We did a lot of things right to help with that, but he was also very self-aware and willing to hand over the reins at times. So I feel like not many people going through Alzheimer's is like, No, maybe, maybe you could be watching your mom go through it. He knew kind of the path it was gonna take. I think he was very aware that he was gonna get to that place. And so I think he didn't wanna make mistakes. He didn't wanna, you know, really. Blow it and let somebody have access. It shouldn't, or those types of things. And so I, I do think he was more proactive for that. And indefinitely. I mean, it hit us all so hard with his diagnosis because we, we knew on an intimate level, you know what. This was gonna look like. And so he really tried to, to make it, I think, as easy as he could on us. But it was also, I think, partially for himself. He just, he knew, he, he, he didn't want the stress of it, of worrying about the mistakes. Hmm. So explain the timeline to me again. So your mom's 53. 53 when she got diagnosed? Yes. Mm-hmm. And then you said you did 12 years with her. Mm-hmm. Was there any time in between before your dad got diagnos? Yeah. So mom died at 65. Mom and dad were both 65 and then seven years later he was 72. When he was diagnosed, he died at 85, almost 86. So those seven years in between, like do you feel like he spent those seven years grieving. Oh, oh yes. They were high school. Sweet. You know, they're sweetheart. They're married at 17 and 18. Wow. His heart was just broken when you, I know when he forgot my mom, because my mom's name was Freddy. And when you would just say Freddy Tears would just come to his eyes. So it was hard cuz he really grieved. But he did live, I mean, he, he played professional baseball for the Brooklyn Dodgers when he was young. Wow. And so as he retired, one of the things that he did for self-care was he played softball three times a week. Mm-hmm. And so one of the things that as I was living near them, I would come and stay with my mom so he could go play initially, you know, he would take her to the games with him, but then it got to a point where he was worried about her wandering off, and so I would go and stay at home so that he could go do those things that he loved. So once she passed, he traveled with a softball team. He Okay. Okay. He really lived life. He loved it. And then, like I said, we went into business together and he was more of. Just supporting partner, but you know, was a big part of that and just really did a lot of things. He had a granddaughter at that point and and loved spending time with her, so he lived a good life. Even once he was diagnosed, he really took advantage of the best that he could. So, was part of why I think I was so passionate about making sure that all of his years were that way. Yeah. Because I saw how he lived when he made his own choices, and that was my template to say when dad could decide, dad did it this way. And so I made sure to continue to give, to do that for him when it wasn't his choice anymore. How can I make it as much like it was when it was his choice? Yeah. Because as someone's starting to go down the path of serious Alzheimer's, someone else is making all their decisions for them. Mm-hmm. And I think that's one of the things that most people do wrong, to be blunt, Yeah. Is that they step in and they take over and they make everything the way they want it. Mm-hmm. the way it works for them and what is convenient for them and easier for them, and. I feel like it's so important to honor the person I agree and who they are, who they've always been, and let them still be who they are. And you do that by creating this world around them that lets'em continue to make as many choices as they can and offer the support, close the support in as they need it, but continue to allow them to move through life like they always have. So oftentimes people talk about, you know, how hard it is to take the vehicle away. They can't drive, and we're just gonna go take the keys. And many times, especially as as a child, adult child, that's what they do. They go in, they sell the car, they just take it away, but they don't think about the repercussions of that. So like I said, my dad was playing softball three times a week. Yeah. Doctor says it's not safe to make the decisions on the road anymore, so we need to take the car away. How am I getting him to softball? I'm hiring somebody to drive. Of course he still wants to go. That's right. And that's what we did is we hired a caregiver and I wasn't sure he was gonna be willing to accept her, but he was because she, she didn't interfere with his life. She allowed him to continue to live his life. So, I mean, all the way up until less than a year before he died, we were going to the gym three times a week. Wow. Um, You know, we just continued all the things he did for himself as much as we could for as long as we. I've seen this time and time again when a parent is aging and getting kind of to those last few years of their life and the kids get involved, the adult kids and start taking things away. And I find that's what causes the deterioration of the, aging parent. The isolation, the lack of purpose, the lack of control. All of our spirits need those things. Yeah. So yes, we need to keep them safe, but not at the cost of keeping them healthy and happy. So I always use the lens happy and healthy as long as possible. I knew that. He was gonna deteriorate, his health was gonna deteriorate for what, whatever reason, whether it be heart or whatever. But we were gonna keep him as happy and healthy as long as possible. And happy was just as important as healthy. Yeah. And so many times people don't, they, they're so worried about keeping them safe, that they take everything away from'em. That's important to them. And that is heartbreaking to me. And I think. honestly, it impacts lifespan of, of course, as soon as they get that that responsibility taken away from them and any kind of ownership of life. Like they, I've seen it before. They just let themselves go and within a couple months they're gone. Yep. And there was nothing else sick about them. Nothing else interrogating. Yeah. It's that, like you said, that sense of purpose is gone and they're like, what do I have to live? And honestly that was the decision, so things really pivoted for my dad. He developed melanoma and so we had surgery for cancer and sadly then Mesa developed in the womb and he lost the skin graft and it was a very tough period of time. The. Decline of just self-care things. He went from, you know, shower and shave and do all those things himself, helping cook dinner, that kind of stuff to, you know, just really needing constant prompts and help with that. And when that happened, his sister had been living with him and she was like, I, I can't do all this. I need to, I need to get out of this stress. And so we reached a point, my sister and I, what do we do? What you know, He had kept my mom home her entire life. I knew he had told us specifically, I wanna be at home as long as possible after his diagnosis. But how, what does that look like? How do we do that? I'm three and a half hours away on the farm. My sister's a mile away, but she has elementary aged kids. Yeah, so we did what most families do. We started looking at memory care units and I just, I, I couldn't do it. I, I walked out in tears just imagining my dad who's playing volleyball three times a week, going to the gym three times a week, locked in this memory care facility with. Chair yoga, his exercise, you know? Yeah. It just didn't match him. And so, I, I came home in tears and my husband said to me, you know, Reno, what's going on? I'm like, I just can't see him living there. I just can't see it. And I know we, beyond a shot of a doubt, he would've given up on life after he tried to break out multiple times. he just would've given up. He probably would've the first night. Oh yeah. Oh yeah. It would've been awful. And so, My husband just looked at me and said, well, if you need to come here and live with him, that's what you need to do. And so immediately that got my wheels turning. What can I do? So again, my husband farms, we live three and a half hours away. I had a, uh, high school junior living at home, you know, all of these other, I was teaching part-time. It was like a lot. How am I gonna do this? There was a lot, I mean, my play was full. We all live with a full plate, right? and, and I'm looking at how do I take care of my dad? And so I started just brainstorming and trying to figure out what does it look like? How can I do this? And so I found in-home care support and I went to my sister and said, okay, if I come here three and a half days a week and we pay somebody 24 7, it would equal about the same as putting him in a memory care unit. Yep. Can we do this? And she's like, Wow, can we do this? You know, there's really people that do this and I'm like, yeah, we can do this. I've talked to'em and so she's like, well, I can spend the night two nights a week. And my aunt, who was living with my dad at the time was like, Well, I can go two nights a week. I'd love to be able to still spend time with him. I just can't do it all. And I'm like, yeah, no one can do the seven days is not fair. Exactly. Expected of anyone. Yep. So we put it all together and for four and a half years I drove to Kansas City and, and stayed with every weekend. My dad. Uh, for two and a half years, every weekend from Thursday to Sunday, and then the last two years, I, I dropped to every other weekend, both physically and emotionally. It got difficult to continue that schedule, so I was able to find good caregivers that could step in on those weekends. I wasn't there and, and was able to care for him. Just hands-on. You know, taking care of him. Yeah. So it was, you didn't end up hiring the in-home caregiver after we did. Okay. So we had in-home caregivers that came and went. We also used um, there's dayday facilities that are available for people with memory loss, and so he went there and got socialization and. Uh, had opportunities to do that. We kept him playing volleyball. We continued to take him to the gym. I found he loved to play ping pong, so we played ping pong together. Good. I ended up buying a ping pong table and moving into our formal family room and, and being able to play ping pong together. So we kept him doing the things he loved to do and it was, I cherish that four and a half. Just the memories that I have and the opportunity to hang out with my dad for those long, extended, extended periods of time and have those glimmers of recognition like we talked about before. As well as then just, you know, stepping into his need. Yeah. And those are yours that you're gonna cherish for the rest of your life. Definitely. Al, although he's battling a really sad disease, you spent so much time with him. Mm-hmm. how long ago was it that he passed? He passed in June of 18. Okay. So it's been, yeah, almost five years without anyone. Yeah. Yep. Wow. what was the first kind of, what was the first like inklings that maybe with your mom or your dad where you started realizing that they didn't recognize you anymore or they didn't know who you were, or they didn't know who someone was? Yeah. It's really funny because the sad thing about Alzheimer's is you don't know when the last time is. Ah. Because it just disappears basically. I mean, like physically what's happening in the brain is all these dendrites are on the um, cells, and that's what allows the communication. Yeah. Well, this plaque is building up on the dendrites and they're breaking, and so they break a few at a time, and when that last one breaks, that cell dies, and so that communication is gone. So it doesn't happen overnight usually. It usually happens slowly. So it's this little glimmer here, a little thing there. I don't know. I can't even remember the last time. I know, you know, my parents took me to college and helped me move in, and we didn't talk on the phone. We didn't, you know, my mom never called me to see how I was, so I don't know at what point she didn't know who I was. That was definitely harder. I, I think I just, I don't know. I just didn't think about it, you know, with my dad, I was a little more aware of it, but I can remember looking back and thinking, Yeah. He hasn't called me by name in a couple months. So, so kind. You re you. You come to the realization, you're like, oh, it's probably happened months ago. Yes. Because then when you start to realize, okay, yeah, he's not saying that. The thing that was interesting too with dad, we had so many caregivers that the caregivers would ask questions that I didn't ask. You know, well, who's Freddy? And do you have kids? And just curiosity to kind of have conversations and it would come and go. There'd be times, yeah. No, no, I don't have kids. But for probably the last couple of years he would say, no, I don't have kids. Hmm. The thing that's amazing though is I always think God gives us what we need. And two days before my dad passed away, he said my name. Wow. After years of, not, years of not. So I was standing at his bedside and I was talking to him and somebody else came in the room and I kind of took a step back where his peripheral vision, he couldn't see me anymore. And he was like, where's Rena? And I was like, I mean, I just immediately knew. I mean, it just. Landed so amazingly for my heart because it was my name and I hadn't heard it long time. That's what you needed, so yeah. Yep. What is the causes of Alzheimer's? Yeah. If we knew we could do something about it, Yeah. We just don't know why we're getting, I mean, there's been research out there, these plaques and tangles, or the characteristic of Alzheimer's dementia is. A lot of people will use those words interchangeably. Dementia's a series A set of symptoms. They're behavior symptoms that are causing a problem. Alzheimer's is one of the causes of those symptoms, okay? But there are over a hundred different types of dementias. And so about 80% of people have Alzheimer's, but we're also finding that there can be multiple causes of the dementia, so they can have Alzheimer's and other things. So characteristically Alzheimer's, there are tangles in the brain, so they're finding that some of these proteins are tangling up, which interferes. And then there's also this plaque that's built up and, and broken these, the memory cells. And so the communication just stops and the brain actually. Black spot. I mean, empty holes. It, it's mind blowing when you see what a brain looks like. That's been autopsied because there's just whole sections gone, gone, gone. It is it, it's something that, thankfully I, I love Tepa snow and that's, I've trained in her positive approach to care and one of the things that really impacted me was seeing the autopsy brain. after having my dad gone, because then it was like then looking at, okay, this is why, you know, the auditory processing wasn't happening. This is why, because it's literally an empty hole in their brain. Yeah, I mean, it's just mind boggling. Would you a little bit more like scientific clarity to understand It really did, and with my mom, again, the progression was so different. Her visual perception was gone very early on. So she would bump into walls. She. I would never, I never forget one day my, we had a little dog and he came in and he barked at me. I was staying with her while dad was playing ball. And um, she was in her bedroom and she would go in there and just sit in the quiet, you know, every now and then. So I, that's what I figured she was doing. And he came in and barked at me and I followed him and she had gotten into the corner of the room Yeah. And was crying and, um, couldn't figure out how to turn around and get, That's fascinating to me cuz when I think of Alzheimer's, I always only thought about memory loss and forgetting who the people were around you. But I never once thought. Anything about like visually or auditory? Yep. So that visual piece of it is, you know, when we think about they don't eat, they don't drink, they can't see it, it, they become middle to late stages. All they can see is like if you have a scuba diving mask on, really stages get down to just tiny little binocular vision. That's all they can see is what's in right directly in front of them and by the very end they're down to binocular only one tiny little point. So much of how we care for them. It is. And when you walk up and you start touching and you start talking before they visually see you. Yeah. You startle them. Yeah. And they immediately become defensive. And when you talk about people saying they're angry and they're hitting and they're all of these things, wouldn't you if you had no idea what was happening? And they start to lose the words they don't understand, you know? We know they can't communicate, but they also can't receive. And so many times we forget. What is a pin? What is a spoon? What are you asking me to do? I don't even know what you're talking about. You know? And we just don't put it all together. And that's why caregiving is so important to me, for them people to really understand the needs of the person that they're caring for. Yeah. Because the more you can put yourself in their shoes, the better caregiver you'll be and the better it will be for both of you. I know if I was in your shoes or caring for an aging parent, I would find it so hard to put myself in their shoes. Like I, I would just feel like such a victim at all times. Like on, in two ways. Like, my life is caregiving for this person, but also it's like, this person doesn't even know who I am anymore. Mm-hmm. So like, I'm sure there's a lot of caregivers maybe that you've talked to before. They'd rather just put them in a home and walk away cuz it's too heartbreaking. Do you see that often? I do. I really, I feel like that's where no regrets comes in. Yeah. I, I don't know how you do that and not regret it later because there are glimmers, there are moments. Yeah. Caregiving is the hardest, best choice you will ever make. Why do you say that? There's so much reward in it, and knowing that you cared for their physical needs and you made their life as good as it can be all the way to the end. It's the best thing I ever did. I would never do it any differently. It is, and a whole, I think it's rewarding at the level of it is rewarding to raise your infants. You know what I mean? Yeah. You, they are completely dependent on you. You are their voice, you are their advocate and knowing they did that for you to raise you. It's just that reciprocal love back to them. I mean, we, we really do live this kind of bell curve life and. I'm just honored to have been able to step into those needs and help my dad be able to live the best that he could all the way to the very end. You spent the majority of your life caring for both your parents. It was really funny cuz it wasn't till my dad. Passed away and people told me, you need to write a book. You need to write a book. That I really, that that registered to me. I mean, I was a teacher cause that's all you knew. Yeah. I've been a, it's just my life. It's just who I've been. And I look back and know that it definitely has modeled, you know, molded me into who I am. But at the same time, it wasn't a choice. It was what my life was. And in order to have a good life, you just do what you need to do and, and you find out how to do that well and you. To me, you have to be healthy in this process, and that's the key. You ask me if people walk away. I, I think so many times I run into caregivers that are angry and resentful and feel like they've given up their whole life for the person they're caring for. And, and especially a person with Alzheimer's, they don't say thank you. Of course not. You know, they don't understand what you're doing for them. So it's that internal reward. It's learning how to make sure you stay healthy, and I do. That's what my book talks about is I, the first half is all about how, what do we do? How do we hire people? How do we fire people? How did we manage medications, find doctors, all of those. Tactical things with stories of how we did that as a family. But then the last six chapters are about how did I take care of myself? How did I have a marriage to walk back into? I, I frequently tell people, you know, you want to bury them with no regrets, but you also wanna have a life that you can walk back into because so many times people lose their marriages, lose their friendships. And alienate their children because they're not there. Yeah. So it is a matter of getting the help that you need so that you're not doing all of it. It's, it's not realistic for anybody to do this 24 7. It's just not. So you need to build that team around you. And if family's not gonna be your team, you need to hire people. Yeah. And. It's so important. I have a quiz that I created called uh, caring quiz.com. That just lets you look at your caring personality because we need all personalities on that team. My sister did completely different things than I did, but that was her talent. That was her gifting. Yeah. That was easy for her to do. What I did was easy for me to do, and so I think we've gotta find the things that work for us, but we also have to bring in those other people that can fill in those holes if, because if we try to do it all ourselves, we do. Everything. Just like my dad said to me, go live your life, Rena. Yeah. I needed to live my life while I took care of my dad. It can't be an either or, or we have regrets. I wanna ask you, like, did it affect your marriage at all? You know, I don't feel like it did. We talked every night on the phone. In fact, I felt like we talked more cause Oh, cause you were smart. Cause you were so mindful of it. I bet. Yes. I mean, every night at 11 o'clock I called him or he called me, you know, and he's a farmer, so sometimes he was bailing hay, sometimes he was going to bed, you know, he was busy, but he was like, yeah, I mean, he was doing what needed to be done. I was doing what needed to be done, but. You know, probably our, our youngest was probably impacted a little bit more than the Russ because he was still in high school, but he was, I mean, high schoolers are so independent. Great kid did, did well in school. So it wasn't like any of those things creeped in, I found you have to let go of some things, so some volunteering things that I was doing, I let go. Of course I stopped. Stopped teaching. And took on coach training, but that was kind of a transition I was wanting to make anyway. So I think you just have to be really intentional. And I always tell people our plates are really full when caregiving calls our name and we're gonna need to move things off. Yep. Because caregiving great. Prioritize. That's right. But it's not forever. We don't know how long they're gonna live, but we know eventually. We're walking them all the way home, so there's time, there's time to put those things back in. I became a grandma during that time. I spent a day a week with my grandkids. So nice. I can make room for what I wanted to make room for, and I knew I had to do that in a way that with the things that would feed me, so that emotionally as I went and gave everything I had to my dad, then I could come back and get filled up again and go back and give what I needed to. When people hear your story and when they read your book, what do you think they're most surprised about or what do you think they learn most? That's a great question. Most people stand, step back and say, I can't believe you were able to do it all. That's how I think. Yeah. I think I hear that the most, but in the book-wise, I think it's just they really feel like it's just sitting down and having coffee with a friend. Yeah. And. You know, being, I, I guess my passion is for people to say, let's do this before you're already at the burnout stage. You know, let's sit down, le read my book and think about intentionally what am I gonna take on as my parents age? How am I gonna support them? What does that look like? Start asking the hard questions. Mom, dad, where do you wanna go when you get older? None of us wanna talk about it, but my gosh, knowing what they really want gives you this marching orders that can help you then, you know, just be confident in the decisions you make on their behalf. So, Yeah, I think mainly it's just, I don't know how you juggled it all. So what were you surprised to learn about yourself? Because the, the strength that you had throughout all those years is more than the average person of course. So anything surprise you about when you were going through it? I don't know that surprise yourself without strong. You are. Yeah. I think for me it's a really deep faith and so that prayer and just. Honestly the wrestling that I was willing to do with God and just say, this hurts and this stinks and I don't think this should be happening Um, And being willing to be comforted in it and be willing to walk at home knowing that this was his will and that it still could be good. I think so many times we feel like anything bad can't be good, but there's so much good in the middle of the bad that it's all in what we decide to. Hmm. And what we decided to focus on. And so just that continual growth in my relationship with God, I think was surprising that I could keep on, you know, navigating that and, and finding what I needed in him. Because there were definitely times I was tired and, you know, it wasn't perfect at all, but it was a matter of then each of those times when you reach the end of yourself, Stopping and regrouping, okay, what do I need? What am I not doing? You know, and there were times that I, I'm a creative person. I love crafts and sewing, and I couldn't take my sewing machine. I couldn't take all my projects. So I needed to shift, but I still needed that. So I took some online art classes, you know, I just found some ways to feed my soul. So I think it's just important to keep problem solving all every step of the. It's impressive that you had the foresight to know that you had to feed your soul while you were doing this. I think a lot of caregivers get so sucked into it that then they wake up one day and they almost feel like they're themselves are dying. Yes, definitely. And I would say what's different about me is number one, I was in coach training, so I had a coach throughout. And so those times where I was empty and frustrated, it was that coach asking me questions, you know, tell me how you're feeling, what, what's going on? And it was the time and the space to stop and really pray and really listen to my heart and find the answer to what I needed. Number one, most people don't ever ask themselves what they need. They just keep going and going and going. Yeah. And so I always encourage clients that I work with stop and schedule time to ask yourself, what do I need? And for me, it was really natural. As I pulled outta the driveway, I would just say, okay, Lord. Tag, you're it, meaning I'm tagging out, I'm stepping out. I'm trusting him to you and to everybody else that's in place. And I had a three hour drive home, And so I decompressed and I prayed and I thought about how did the weekend go? What went well, what didn't go well? How's dad? what do I need to do to support him more? How am I, what do I need? And when I found there were seasons, he wasn't sleeping well. So I wasn't sleeping well, and I was tired. It was like, okay, I need to ask for help. Something has to change. I can't keep going three nights without sleep, you know? And so I just did a lot of. internal conversation to evaluate myself and my relationships. Mm-hmm. And, you know, if I was missing a friend, it would be, Hey, call him while I'm driving and then say, let's set up lunch. You know, I, I don't have as much time as I once did, but I'm, I wanna spend some of it with you. Mm-hmm. and maybe not as often as normal, but let's get it on the calendar. So intentionality is the big thing. I, I was just very intentional in my self-care and realizing I didn't know how long it was gonna be, so I needed to, Did you have anyone in your life kind of push back and feel victimized because you didn't have enough time for them anymore? Not that they told me so I, you know, I, they, they saw themselves out if needed. I think so. I, I think that, you know, those relationships, not all relationships survived. Yeah. But the ones that were willing to hang in there and, and know that I was just gonna be missing for a little while, but that I would come back when I could, you know, I've picked those relationships up. I've things at church, volunteered jobs that I had everybody, you know, used to come to me, can you do this? Can you do that? No. You know, and so, no, not everybody ask again. So it, it was kind of starting afresh once I came back to. Being more available, but for me it was also after caring for him. The grief season was intense and surprising. I would say that's probably, when you said the word surprising, the one thing that surprised me the most was how intense the grief was. Um, So it took, when did that start time to recover from that too? honestly, you, you have to grieve throughout. And I did do that, Laura. A lot of tears. There were a lot of times driving that. It was just this, you know, those times that you realize he doesn't know you anymore. Those times when I look back now and realize I pushed him and he was confused and I was pushing and he was. He would hit or he would cuss. As those things were happening, I was figuring out what am I doing? How do I need to do that differently? But there was a lot of grief in that. I mean, my dad, he might have cussed around the guys, but he never cussed around his girls. And so it was hard to see him in that different way, but realizing, okay, how can I do it differently? Not to get him to that point of frustration was something I was able to do. But I think those small griefs through. Kind of made me think that I wouldn't grieve as much when he was actually home. And you, you were, uh, shocked soon. Wrong? Yeah. Yeah. Very wrong. Yeah. It was hard. It was hard. And. I tell people all the time, I, I experienced what I called it, grief brain. I've never read that anywhere, but I just say it. It's just this fogginess that you deal with, and I'm a lot like my dad. I get a lot done. And so for me it was two to three times longer to accomplish the same things. I'd always done. Those rote memories. That's frustrating. This, oh, it was hard. And I was exhausted. I slept a lot. I napped every day for. Yeah. And thankfully I had wise counsel around me who just said, this is grief Reina, just do what you need's. Be, be merciful to yourself. Don't expect something more than what you can do. So it was a season of that that was surprising. So I didn't resume normal life. I didn't step back into these relationships because I was tired and I was grieving, and so I gave myself space to do that. During the last moments of both your mom and your dad, I feel like when people are, are about to die, maybe in the last few months they, they have a lot of wisdom to give. Did either parent kind of say some things that really stuck with you or maybe when they were reflecting on their life towards the end? Yeah, with Alzheimer's, there's not that capacity. Yeah. So I miss that. My mom was completely nonverbal, so nothing made sense. and her, her passing was, Excruciating. She had a psychotic break and so it was a, a pattern of just kind of being stuck in this. Um, She would chatter and then scream and then rest for a little bit. Wow. And then chatter and scream. And it was about a six minute cycle that lasted for over six weeks. Wow. And they medicated, but even when she, as the medicine would, would wear off, she would, you would still hear it. So it was very difficult. My dad, he could talk more. But those original thoughts, I mean, able to put those things together were just not there. In fact, it, for my dad, I think what stands out is just how surprising it was. I mean, you know, you know, you're dealing with someone who is terminal. You know that he's 85 years old. Mm-hmm. And so it shouldn't be shocking but it was, it really was. We um, he had to bring, uh, he had a A blood clot in his leg and survived surgery and recovered. And he walked home and, uh, we couldn't, he couldn't use the stairs, so we kind of got the basement already for him. And he knew he was home and I just referred to as, he just kind of took a deep breath and relaxed into being home and was gone in nine days. Wow. No idea. You could probably see it in him where it's like, I'm just gonna let it. There was just this piece that came over him that was like, I'm, I'm finally home. You know? And I saw that when he first came home, but he kept walking, he kept eating, he kept doing, and then eventually, you know, just about five or six days in, he just kind of was like, Hmm, not really interested in food. Hmm. Not, don't really wanna get out of bed, you know? And I was like, oh, okay. This is different. I tell people all the time cuz I'm, I'm a pusher, I'm a Type A personality and one of my prayers in caring for my dad was, Lord, help me to know when to stop pushing. Hmm. I knew I was his advocate. I knew I had to be the one who would rattle the cages and make people take care of him like they should. I, I was, I was the bad cop in the two. Yeah. My sister was a good cop. I was the bad cop and I'm okay with that. But I knew that, that I would not. Be willing to let him go. And so for about a year, my prayer was just, Lord, let me know. Let me know when it's time to stop pushing. Hmm. So that morning, uh, it was a Thursday morning and I was praying over him as I woke up and was just like, you know, Lord let me know when it's time to let him go. And, and I had this quiet sense of my heart. It's time. I'm like, oh, oh, wait a minute. He must have misunderstood me. Let me reword that, you know? And the Lord just lied on my heart. No, it's time. And I looked at my dad and I thought, oh my gosh. He was just glowing in peace. He was just at peace. And that day I had a couple hours off, which normally I didn't with this schedule. And so my sister was, had come over and the caregiver was there and I was able to leave the house and just go do something. So I went to a movie kind of mindlessly and had about an hour left, and I went to the. Store and I was looking for a dress for my dad's funeral. Yeah. And I came home and the home health nurse was talking to my sister and she was telling my sister that my dad had all the signs of dying within the next couple weeks. And it was a total incomplete shock to my sister. And she's just like that she can't be right. You know, she left and she's saying to me, and I just looked at her and I. You know where I was. And she's like, no. And I go, I went to look for a dress for dad's funeral. And she's like, what? I just knew And she did not. Yeah. And it actually, as we were talking about it, she like physically stomped her foot and she's like, you have been pushing from the very beginning and now I feel like you just abandoned me. You just ran off. And I'm standing here by myself and I'm like, no, you're not. I'm right here by you and we are not doing anything until you're ready to. but I know it's coming. I know he's done and we called hospice. They came in on Friday and my dad was gone by 5:55 AM on Monday morning. It was that quick. 5:55 AM there's some beautiful numerology to that. Yeah. Yeah. Wow. I wanna ask one last question more about you. Sure. what's next? Such a good question. I, I'm not a big dreamer and I don't know if that's because I've spent my life caring for other people or what it is that you haven't had, you haven't really given any time to yourself really. Yeah. I mean, you know, even the past few years maybe. Yeah. Well, and even. I mean, I was a teacher. I've just, I'm just a giver. That's just how I was made to be, who I'm made to be. So, I have been, since my dad's passing, I've shifted all of my coaching to working with those that are caring for aging parents. Yes. And so with the release of my book and all of those things, I'm just continuing to find ways to offer support. And I'm really kind of making a shift here in 2023 to really. To the depth, depth of who I am, and that is helping caregivers find God in the middle of their season. Hmm. And so offering them the hope that I had. Right. Um, And I think that that's when I really boil it all down. There's a lot of strategies I can give you, but for me, the true hope. Is that I will see my dad and my mom again in heaven. Mm-hmm. uh, when my dad passed away, the very first, as the tears were rolling down my face, the very first thought I had was of them hugging again after 20 years of being separated. Yeah. And so that is the depth of the, of what I, I, who I am and what I believe in. So I'm trying to then share that with others because. It's not easy. So I've launched a new magazine called Content Magazine and I'm offering that electronically and just quarterly, but just trying to offer stories of hope. Yeah. And just helping people to continue to support them through the season of life. So when you say helping people like add God back into the equation, what do you mean? What do you mean by that? Do you find people are just looking at the Alzheimer's disease as just super medical and logical? I think all of it becomes very caregiving, becomes very remo rote. It's, I need to get dinner, I need to do the dishes, I need to wipe their rear. I need to, you know, is it time for me to take them to the bathroom? You know, oh, I need to get meds. I've gotta go to the store. I think in that, the to-do list is so long and overwhelming that we oftentimes to forget. The comfort and support is right there with us. The Lord's always there in the middle of it, whether we notice him or not. And so just helping people to, to notice that there's those little things that are there that are supporting and encouraging along the way, and that he has that for you. I think sometimes we just forget. I, I think caregiving is a lot like work and that people can compartment. Yeah, and so it's just one of those things that we just kind of put off to the side, but there's so much emotion and there's so much struggle in it that I think then we can also become so angry and frustrated and all of that. To me, the hope in the Lord is what answers that too. So we need to have those two things together. And when we talked right at the beginning of this episode saying that that person doesn't know who you are, but there's something still in them being like, but I know I should know who you are. I'm sorry, but like there's something bigger, bigger and bigger there. Yes. Yep. Is it's our spirit medical after that. Yeah. It's more spiritual. I agree. It's in our spirits. We are, we are beyond just this body. I agree. And that communion of spirit is there and. I think the difficult part of caregiving is we can look at the physical only and forget that side. Mm-hmm. And that doesn't give us the satisfaction or that reward like we were talking about, if we aren't looking deeper than the physical because the physical's gonna pass. Yeah. No one's getting outta here alive and definitely not an aging person. You know, we are walking them home. Yeah. Whether we acknowledge it or not. It's beautiful that you call it home. That's interesting to me. Hmm. I think it is a, a feeling of, I think that came from a feeling of he's home, he's with my mom again and they're together and I'll be there too, and it will be home. Right. Any final last words of wisdom or encouragement for people listening? You can. You can do it and stay healthy. You have to choose, uh, you can't get drug into caregiving. You can't get sucked into it. You have to be intentional. But you can do it. You can do what I did. You can walk them all the way home and bury them without regrets. Hmm. Rena, thank you so much. I remember when we rescheduled a couple times cuz I'm sick and it's so interesting. I still have a bit of a cold and you talking so much about being a caregiver, I'd be like, I don't really feel sick anymore, sitting around you like I feel cared for. So, okay. I'm not surprised that's who you know yourself to be, but I've learned a lot in this episode about Alzheimer's and I just know if. If I ever have that situation as my parents get older, I'm gonna listen back to this episode for some encouragement because I know right now I don't have the tools to do it. Or Yeah, I know I would lead with nothing but resentment and anger. So knowing that we've had this conversation, I know there's definitely another way of going about things. So thank you so much. Oh good. Thank you. I'm so glad to offer that hope to you and it can be done, so hang in there, Thank you so much. Thanks.

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