Alzheimer’s Speaks: Lori La Bey and Her Mom

*The following is the output of transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors.

Welcome to the answers for elders radio show. meet the trusted experts who will give you straight answers and I will help guide you on the path of later life care. Now here’s your host, founder, caregiver and CEO, Susanne Newman, and welcome everyone to the answers for alders radio network. And it’s a great as time at this time to start outfall right, and we’re in the autumn season where we’re have the leaves turning and the changing and the loss of the foliage from the summer, and are everything kind of diminishes and it’s so interesting because you know the diminishment there’s a great metaphor I think for our next guests, because we have a guest that is nationally renowned including Um appearances with Oprah Win Winfrey and Maria Shriver. She’s an Alzheimer’s and dementia expert and my friend that I have known for a very very long time. Um Ms. Lori Lebay from Alzheimer’s speaks and welcome to the show, Laurie well Sudatt. I’m so excited to be here with you, so thanks for having me on today. You know, I’m excited because Um, you know, I talked about the leaves on the trees diminishing, and a lot of times I think about that’s kind of what happens with the brain on Alzheimer’s, and we watch is things fade away with our loved ones. And for those of you that are listening, Um, we’re in the Pacific northwest and I am and Lorie is coming to us from Minneapolis. But one of the things that I am aware of in the state of Washington, and we have the most one of the most highest per capita of residents in the state of Washington that are suffering from Alzheimer’s disease. Um. We don’t know necessarily why that is. I don’t know, but it’s certainly interesting. It’s an interesting statistic and one that we really pay attention to an answers for elders. And of course I remember when I first got into the industry. This is in the early days of answers for elders. Um. I’ve reached out to Laurie primarily not only because I thought she was amazing and I started listening, believe it or not, too when she started doing podcasts, which is way before me. Um, and Laura, you were such a great help to me in understanding a lot of how I you Alzheimer’s disease. And you know, you and I both have a similar story. You lived with your Um mom that started in with dementia and going through and so you had a firsthand experience of being a quote unquote family caregiver just like I did. Yeah, my mom lived with the disease for thirty years. That is amazing, that is amazing. It’s just almost unheard of. So tell us a little bit about your background before we get into Alzheimer’s speaks, which you are incredible, and we’re going to go into and talk to everyone about all the resources that are available to you. And if you know of anyone you’re listening to this podcast and you think, you know, I know, you know someone that has a loved one with Alzheimer’s, I hope that you will direct um them to this podcast because this lady is really one of our most Um amazing ones out there um in the industry. She’s definitely the cream of the crop and knows her stuff. So tell us a little bit, Laurie First, about your background with your mom. I know, thirty years, that’s a long time. Yeah, so you know, my my mom had a doctor of forty years who knew nothing about dementia. But back then nobody talked about it, you know. So she’s been gone since. So the first ten years she kept what kept being told from her doctor that it was menopause, and my mom would say, this ain’t my girlfriend’s menopause. We talked about the symptoms. They are definitely different, and you know, and it just kept accelerating. She kept pulling back so um things like she she told Time by the TV. So if you would go over there, the guys would go over. They want to watch football game, they want to change the channel. They couldn’t because mom would have to have it on Channel Four because she knew by the anchors in the news what time of day it was. And we didn’t realize that’s what that was all about. But she couldn’t read o’clock anymore, you know, she didn’t if the phone ring, she wasn’t quite sure what it was, you know. She Um couldn’t really use the appliances. She started withdrawal. She was really social. So there were a lot of changes that took place, you know, during that time, because thing was I think the frustration of getting a diagnosis. And then even once we did, and we had like claw, tooth and nail, get this back then, they sent it to us in the mail. She’s got the mentality of a three year old. Don’t let her out of your sight. And we’re really that’s that’s it. Um. But that’s how it was done, you know, back then, and so and this is what Ye oh gosh, this was back in this would have been in the eighties. Then when she finally when she finally got a diagnosis, and Um, because it started in the in the seventies, and you know, it was just it was so frustrating, you felt alone. Nobody really talked about it. Nobody knew what Alzheimer’s was. The word dementia wasn’t even discussed. People were still talking about people being senile and demented. And and I could relate to that because when I was thirteen, my great aunt, who I adored, was in a nursing home and I’ll never forget that day she didn’t remember who I was. I was devastated and I cried for like two weeks, thinking how can she not know me? How could she remember my brother? Who could care less if we about her? At all my mom was and I really enjoyed her company, and we were really close and I and I thought I did something wrong, and I remember my mom telling me back then, you know, it’s just when we get old, this is what happens. And so there weren’t answers, and there weren’t answers with her, Um, but I learned to engage with her. I learned to advocate for her. I learned to, you know, just speak up and say, there’s got to be others like our family. And and yet my dad and I were really the only two of my two brothers weren’t very involved, which is probably what a lot of your audience experiences. Families aren’t all on the same page. They are not. Definitely. Yeah, so for my brothers, I think it was the emotional part of it. They did not they didn’t want to have to deal with that. If they saw my mom declining, then there’s emotions and they didn’t want to they didn’t want to have to process those. So, you know, it was it was tough. I was, I was married. Um, you know, I have a daughter. She’s only known her grandma with dementia her whole life. And when when she was like I don’t know, maybe three or four years old. She was coloring with grandma and I walked in the door and they both held up their pictures and you couldn’t tell who was prouder, I mean, and it just it melted my heart because they were just you know, there’s those joyful moments and instead of Pooh poohing them and go oh, why is grandma doing that, appreciating that grandma is doing that? And I was benefiting from that. Yeah. And I think one of the things that you were insightful enough, where a lot of people are not two enter grandma where she was, you know, in other words, to acknowledge that this is where she’s at and to be and to meet them in that moment. And I think that’s really where you know, I find a lot of families. They they’ll want to correct their loved one, or they want to tell mom that isn’t how it is um or anything like that. And I remember having a mentor when I was taking care of my mom Al then my mom had vascular dementia. It was but it’s similar and and you know, I would correct her because I was trying so hard to be a good caregiver. You know what, I wanted to make sure they had all the facts straight. And I remember just thinking, you know, it would be terrible if they believed that she said something and it wasn’t true, you know, because it’s not goes against my wiring, you know. But the nurse of the facility where she was living at at the time, at the at the skilled nursing center, she said to me, she goes, Suzanne, let me tell you something, Um, the truth is pretty much irrelevant at this point in her life. And I just kind of went, wow, that’s really good. And I learned then there was a way that I could still communicate to doctors in a different way without demeaning her and our correcting her because that just caused a division. And I think that’s part of Um, what you did right from day one, is you met her where she was. Well, I wouldn’t say from day one. I went through those too, but I learned fairly quickly that, you know, Um, perception is reality line for all of us, dementia or not, our history, our thoughts, our beliefs become our reality. And it’s just with somebody with dementia you can’t logic with them. And for me, it got to a point of like, there was a point when my dad passed. We could keep reliving that with her and going, no, Dad’s gone, and have her cry and and just go through this grieving process, or we can say what’s more important than time and our reality? But is she safe? Is She happy? Is She paid her? Who would wantch loved one or really anyone to have to keep reliving a moment like that exactly exactly, and so you know there’s ways around that. People Go, well, I’M NOT gonna lie, and it’s like, you know, I call it a fiblets where you just you kind of fiblets and love that where you kind of form the truth to fit the moment. And so you know, Dad, dad just went out with his friends for a little while, and he is, he’s in heaven with his friends for a while. You will see him eventually. But I had to frame it different in my head because I didn’t want her going through the grief and that she could understand that she and there’s a scene. You know, you’re never going to win an argument with a person with the mental exactly, so stop trying, because then you’re you’re just going to elevate your grief to through that process well. And also, you know, even though you know if you have a parent, obviously I had a difficult childhood with my mother. I mean, my mom and I were never close. But what I learned was is that there was all kinds of punishment to to deal with if I contradicted anything she had to say. And and even though I was right, you know, a re remembering facts or things like that, it didn’t help the fact that it wasn’t a Um, you know, it wasn’t a positive outcome between your her and I. and I just learned eventually, like you said, I love your your little phrase called a fiblet. It’s truly is it’s it’s you know, it’s the greater good. It’s the fact that understanding that their reality is not necessarily our reality exactly. Yeah. Yeah, so Laurie, we’re gonna be together. I’m so excited to our listeners. We’re gonna be together this hour and so we’re going to have three more segments together. But I want all of our listeners before we go to segment to how do we reach shoot real easy? JUST GO TO ALZHEIMER’S SPEAKS DOT COM and there we have one whole page that has free educational resources, Big Wide Variety. We’ll talk about that more a little bit later, but just go to Alzheimer speaks DOT COM. We’re very excited, and again Laurie Lebe from Alzheimer’s speaks dot com is with us this hour. We’re so excited and we’ll be right back right after this. We at answers for elders. Thank you for listening. Did you know that you can discover hundreds of podcasts in our library on senior care? So visit our website and discover our decision guides that will help you also navigate decision making. Find US AT ANSWERS FOR ELDERS DOT COM