Alzheimer’s Speaks: How It Got Started

*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 we’ll help guide you on the path of later life care. Now here’s your host, founder, caregiver and CEO, Susanne Newman, and welcome back everyone to the answers for elder’s radio network with the one and only Lori Lebay from Alzheimer’s speaks DOT COM and Um. We have just gone through a little bit of story of Lori’s background with her mom, but Lorie is an amazing resource out there Um, including the appearances with Elpen Reym Winfrey and Maria Shriver and all different types of Um you know, people that we know about. So she is incredible and had been in many ways a little bit of a mentor to me, although you didn’t know that, but I’ve listened to many of a podcast from her and Lorie, I’m so glad that you’re with us this hour. It’s such an or for us to have you. Well, I’m thrilled to be here and I love the work that you’re doing, so thank you, thank you. It’s amazing when we think about, you know, when we both started Um in this world. You know, we were both doing other things and we found ourselves on this path of you know, there has to be something better for families out there. There has to be something. And I know that I started answers for elders due to that need. And I used to have this vision of myself because my whole life had fallen apart with caregiving, which so many of us do, and and what I kept visualizing for myself was the Phoenix rising from the ashes. I really wanted to, you know, move forward in my life and do something great. And I think that’s you too, oh definitely it was. And it was built out of frustration, but it was also built out of encouragement from others that saw my journey and they realized, I think more than I did, that I was really coming from a different perspective and that I had a voice and I wasn’t afraid to use it, and so they really encouraged me, you know, to to step out of I was doing real estate at the time, and I focused on seniors and their families and supporting them and and the whole my whole piece there was about we have to focus on abilities versus disabilities. We have to focus on commonalities versus differences. And I think that really lays over to dementia is what does you know we we so like to categorize people and stick them in a box and then throw them on a shelf and toss them away. And we all want to feel purposeful and included, and we all deserve that. Dementia or any other illness. Very true. And I think one of the things that you you touch on is the fact that it I think it’s important for us all to take our experience, what we’ve we’ve done and reinvent ourselves. This is a wonderful opportunity to to kind of figure out, you know, what did I learn most? What what have I gained most through this process? Um? And how do I how do I use this experience for good the rest of my life? And I think that’s the gift in all of this. You know, like I always say, caregiving can be the hardest thing you’ve ever done in your life, but it can also be your greatest privilege. and Um, taking that privilege and doing something with it is really, in my mind, one of the greatest aspects. So what so you obviously started Alzheimer’s speak due to you know, many aspects, but Um, how how are you different? There’s other people out there that you know that are doing great work in Alzheimer’s. But you’re a speaker, you’re a you know, you’re a counselor, you’re coach, your your so many things, which I think is so cool. Well, you know a lot of people say pick one thing and do it well. And what I what I did was I wanted to be a megaphone for everybody. I wanted to lift everyone else’s voice because Laurie doesn’t have all the answers. You know, none of us do, none of us ever will. But the best thing we can do is to invite other people into a comfortable conversation and raise their voices, you know, raise their perspectives, their services, products, tools, all of that. Um. And like myself, I didn’t think I had anything special to share. It was other people that saw it in me. So I kind of want to be that one that ignites that little spark and others to say, you have a lot to offer. And people does. Dementia and families, Um, you know they’re not a book smart, they are street smart. They are families there every day twenty four seven dealing with this smart, so why aren’t we going to these people? And what I found in our journey was, you know, my myself and my dad were kind of ignored as care partners, and my mom wasn’t even acknowledged in the conversation at all. And I thought to me, that’s just downright sinful and just and any yet, society has this belief that, you know, doctors have all the answers, scientists have all the answers, and they would like to. I agree, and they have a lot of them, but they don’t have them all. And I think this. I think demensia is a team sport. We learned from one another. We can support each other, and we can um kind of play better and live better, you know, by sharing. So Alzheimer speaks was born by I started with the blog because again, people were pushing me out there and I’m a girl from Minnesota. I didn’t even travel we went up to the cabin. I mean, I was just kind of hometown ish. And all of a sudden, I start this blog and people around the world are resonating with our family stories and I’m thinking, oh my gosh, we’re really not alone, and and there’s so many people feeling just like me. So from there, I had to make a decision. Am I going to stay in real estate or am I am I going to step into this? And I decided all bets down, I’m I took my my savings, my retirement and said, you know, I’m gonna try to make the world a better place, bigger, small, but I can’t sleep at night if I don’t. And this has become my life’s purpose. And and you know, let me tell you, guys, it’s not always easy. And my screaming matches with God at time going throw me Abone or I am out of here. That’s got to change, you know, when I’m not feeling enough enough progress and enough collaboration. But I wanted to raise people’s voices and I wanted to use different platforms. So that’s when I started the radio show, and I interview people all around the world, people with dementia, families, researchers, um multitude of businesses, advocates, you name it. Everyone is welcome for there. I I started dementia chants, where we use a platform you know, zoom, and I facilitate a conversation with the true experts, those living with the diagnosis. They picked topics, and we have tons of topics. You know. They worry about their care partners, they worry about how they’re talked to and treated, and they see what’s working and what’s not. So there’s great, great information there. You know, we launched the first dementia friendly community in the US and Wisconsin with the Luther Home Association. People like, well, how did you start that? And I’m like, I’m a single GAL. I I don’t have this big corporate entity to butt heads with. And I decided to go for it. I made a pitch, someone bought it, and we did it, and we just move forward. And I don’t believe in perfection. I believe we need to be fluid. I don’t believe in failure. I think failure is about learning to improve. I don’t think there’s one set little process that’s going to work for everybody. So so again, to me, even if something’s working, I’m always looking at how can we still improve it? You know? And and you know what, what do participants and others looking at this thing? Um? You know, we brought over the memory cafes from the UK, and same with the dimension friendly communities. Those weren’t US concepts. They were shared concepts, but I like to think that I listen to all levels because I don’t think we can make sustainable change if we’re not inclusive. And I think that that’s been a big problem with our our our government and our health care structure. All it all comes from one entity down. and to me, I think the change is really we’re seeing things come from the floor up, the people up, and they’re pushing pushing change well. And I think to one of the things that I start to see that’s happening is mental health is no longer a bad thing to talk about, um where before, you know, it was kind of a stigma. Nobody would ever want to talk about Mental Health Um and and obviously mental health takes a form in different ways. But I think Oprah has been really amazing about that piece about talking about it a lot, and even back when she had her show years ago, Um, there was a lot of things talked about. But I think she kind of was one of the trailer Trailblazer Blazers that kind of opened that door a little bit. Um. But we’ve had a lot of opportunities now all the way, now she’s doing this show with Prince Harry right talking about mental health and different types of things. And Maria Shriver is another one that has been incredible in helping us say that, you know, we can talk about Alzheimer’s now, we can talk about these things that we kind of they were kind of shoved under the rug, like grandmother and grandfather were, you know, they were in uh, you know, another place or a nursing home, and nobody talked about them, you know, and there was this stigma. I remember they called it, you know, senile and and all this kind of stuff that they used to years ago. They did shock treatments, horrible things, you know. And I think about now my own grandmother the same thing. She didn’t know who we were at the end of her life. The only person she really kind of knew was my mom because my mom was there every day. But you know, when we look at that and look at how we’re evolving, part of me thinks we’ve come a long way, and another part of me thinks there’s so much more that we need to go because there’s so much hesitancy about people getting help early. Um. You know, I I see a lot of times when I talked to families saying, you know, I know that we probably need a form formal diagnosis. I know my dad has dementia or Alzheimer’s, but I’m scared to get the diagnosis. There’s just this feeling of if I go to a doctor, I’m gonna be in a situation. And so what you do is kind of help that bridge. I think, wouldn’t you say that that’s the piece that really you’re in. Well it’s funny because people like, well, then I’ll have to deal with it. You already are you just start tappening into any support you know, and so much support out there that people don’t know about, and obviously you know. In this segment, we want to talk about a lot of those educational resources and you have a lot of them. So Laurie, before we go to our next segment, how do we reach you again? GO TO ALZHEIMER SPEAKS DOT COM and for those free educational resources, there’s actually a tab just click on that and you will have tons of great resources. Yeah. Yeah, and also Laurie has a lot of podcasts out there. So if you’re a podcast listener, which I am assuming you are because you’re probably listening to the show, I’m really excited or you to check out Laurie because she’s an incredible resource. and Um, I consider her an absolute colleague and somebody that I trust immensely and a friend. And Lori and I my friend, will be right back right after this. We it 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 AND ANSWERS FOR ELDERS DOT