ANTHONY COPELAND PARKER: Who Runs The World?! Tony & Cat. That's who.

Anthony "Tony" Copeland-Parker  is back for a record 3rd time on Love Conquers Alz... and Don and I are thrilled. Tony and his, partner Cat, have a unique and inspiring story  that has been unfolding before our eyes  and this new chapter is as heartening as ever. 
For those who may not be familiar with Tony andhis partner, Cat, here's a little background to get you up to speed. (I'm killing it with the running puns!)  Tony and Cat were in there 50s going their merry way,  when they were presented two life-changing pieces of news...at the same time. Tony was told he needed a heart valve replacement and Cat had early-onset Alzheimer’s.  But both being endurance athletes, their reaction to this news was, let's say, unique. They retired, sold their home, & became nomads, running marathons & half-marathons - literally over the world.
Their book, Running All over the World, Our Race Against Early Onset Alzheimer’s, is  an engaging travelogue with a heart.  Don't let the word "Alzheimer's" give you the wrong impression! It's filled with fun, humor, heart, and adventure. It's chock-full of interesting facts and detailed travel advice. And if you ever thought about running a marathon, but just can't seem to check that off your list, you'll experience the thrill of the finish…blister-free! The book is an account of their 5+ years of flying, running, walking, sailing, & sightseeing from Atlanta to Antarctica and back again.
Now that Cat's Alzheimer's has progressed and she can no longer run marathons, she and Tony have embarked on a new chapter in their unique and awe-inspiring story.  Enjoy this episode!
Love,
Susie

SPECIAL GIVEAWAY! The first 5 people to leave a comment at RunningwithCat.com  will receive an ebook version of  Tony's book and one signed copy! Leave a comment and  then let me know you did at  loveconquersalz.susie@gmail.com. Good luck!

Transcript

Susie Singer Carter: 0:00

Hi everybody, it's Susie Singer Carter and I just wanted to take a minute to tell you about a wonderful product I just discovered. It's called sosiale. And sosiale in Latin means to share and unite. It is the simplest way for older adults and people with disabilities to connect and engage with their family and friends. There's no username, no password, no login and no app to choose from. It's just a dedicated device. It's the sociol, the C to M connect to me device it's always on and ready to use, and families and caregivers just install the app on their smartphone. And then you can just begin sending photos, videos, and even have live live video chats and your loved ones. They don't have to do anything. They just love it. And because all of us must fight elder abuse and work together to bring awareness to this issue. Sociology is supporting my efforts to produce my vital documentary, No Country for Old people. When you subscribe to sociology for your loved ones, they will donate the payments received and you can help us reach our goal while connecting with your loved ones in the simplest way CCRB connected generations made simple globally. To learn more, please visit their website at www sosiale.com. And when choosing the payment, select the annual subscription the proceeds will go to help the production of our documentary, No Country for Old people and I thank you so much.

Don Priess: 1:26

When the world has got you down, and... Alzheimer's sucks, it's an equal opportunity disease that chips away at everything we hold dear. And to date, there's no cure. So until there is we continue to fight with the most powerful tool in our arsenal. Love. This is Love Conquers Alz, a real and really positive podcast that takes a deep dive into everything Alzheimer's, The Good, the Bad, and everything in between. And now here are your hosts Susie Singer Carter and me, Don Priess.

Susie Singer Carter: 2:03

Good morning, everybody. This is Susie Singer Carter.

Don Priess: 2:07

And this is Don Priess and this is love conquers all. Hello, Susan.

Susie Singer Carter: 2:12

Donald, I'm wearing clothes today. They and they're they're quite fashionable. I am I'm a fashionista they're wearing I'm wearing like a denim ensemble for those of you not looking and on YouTube. But you should. CuzI forgot how to dress anymore. It's been like now that I can now that we actually have it's been three years since the pandemic. I know.

Don Priess: 2:38

That's right, march, march of 2020. Oh my god.

Susie Singer Carter: 2:41

Yeah. Three years. Three years. I'm just getting my high heeled legs back.

Don Priess: 2:48

Thank God. You know,

Susie Singer Carter: 2:50

right.? Exactly. Because my calves, my calves. Where am I without my high heels? My calves? What to do?

Don Priess: 2:58

I don't even know you without calves. So

Susie Singer Carter: 3:02

I don't know me either. But yeah, I and here's some could, this isn't one of the reasons why I'm practicing my high heels is because our other podcast I love Lucifer was nominated for Best Audio fiction by indie series awards, and we're going to a red carpet black tie event on April 12. So everybody send us good vibes because poor, poor I love Lucifer that we love so much has taken a backseat to my attention. But lo and behold, it's it's it's the little podcast that could.

Don Priess: 3:44

Yeah, absolutely. And, you know, it's, it's something that you know, because both of our podcasts have love in it. I'm trying to draw correlation, but I cannot you can't say is no, I can't. My you know, my brain right now is not functioning. So I'm gonna say very silly things today.

Susie Singer Carter: 4:04

Right. Well, let me talk for you then. Yeah, yes, go ahead. Please do so Don is working. He's just delivering a beast of a project. It's the documentary on the 30 year anniversary of Jack Warner. from Warner so yeah,

Don Priess: 4:20

it's it's it's 100 year anniversary of Warner Brothers and it's a reimagining of a documentary we did 30 years ago so crazy around the clock you know no days offs 14 hours a day and which is exactly Susie schedule as preparing for our upcoming documentary No Country for Old people. So which we're still trying to raise money. You know, if anyone has the spare cash laying around, please feel free to to give a tax deductible donation to No Country for Old people because we need to get this thing done. It's so important.

Susie Singer Carter: 4:52

We've already interviewed over 60 experts and caregivers. We're going to move the needle for sure, Donald, that's what we're gonna do and we have to do it because our long term care industry that's what it is it's an industry is out of control. And it's broken. And it's feeding, you know, very rich people's pockets and making them even richer. So which is interesting because our guests are we're like we're sort of like Saturday Night Live Now we have like returning guests like hosts right so so we have a three timer now he's gonna have to get a jacket for him.

Don Priess: 5:32

Yeah, he's he's our first three timer for sure. Yeah, yeah, setting record setting records

Susie Singer Carter: 5:39

Exactly! As he does. But, you know, what he's going to talk about today is going to be so great because it's about its assisted living, but it's really the transition of lifestyle. And how important that that lifestyle is in the quality of that lifestyle is no matter what cognitive level you're at, if you're if you're dealing with cognitive impairment, or just aging in general, it's so important you know, that we have a quality in our life as we grow older, you know, we we have so much technology that's extending our life and giving us an opportunity to have a longer life and experience more things and yet we don't we don't have an infrastructure set up to support that so that's why we need to get out there and really galvanize the public and get them to come get every all of us need to really voice it because otherwise it's just going to stay the way it is. Yeah, yeah. And if you and I mean Russell Brand on on Bill Maher on on March 3, you guys if you haven't seen it, go back and watch it because he says it as only Russell Brand can so I was I was applauding in my living room last night. So anyway, why don't you go out? Excited? Well, because he just says it's so right. He just says it and he has no he has no shame.There's no shame in the game. I love it. Anyway, okay, so what let's introduce our our guests that we love so much.

Don Priess: 7:15

I will our guest today is living a remarkable journey. Anthony Copeland Parker and his beautiful wife, Catherine were in their 50s when they found out that he needed a heart valve replacement and she was diagnosed with early onset Alzheimer's. With a history as endurance athletes. Their reaction to this news was nothing less than extraordinary. They retired from their jobs, sold their home and became nomads, running marathons and half marathons all over the world. Their book running all over the world, our race against early onset Alzheimer's is a nonfiction account of their years of flying, running, walking, sailing and sightseeing, from Atlanta to Antarctica and back again. Now, their life has entered a new and incredible chapter. And we cannot wait to turn the page and learn more. So without further ado, in a triple Encorp appearance, let's say hello to the inimitable Anthony. So we like to call him Tony Copeland Parker. Hello, Tony.

Anthony Copeland-Parker: 8:13

Hello, how are you all doing? I did not realize that I was a third timer here. But that is fabulous. I really appreciate you all having me here. And when I was going back around. You and Susie were the first ones I contacted to make sure I talk. Well.

Susie Singer Carter: 8:33

Thank you. Thank you and you better have no I'm kidding. Well, thank you. No, we love you. We love you. And we love Katherine. And I love your story. And of course I listened to your book, because that's how I roll I love I love a good audio. And it is good audio. It's like it but it is really good. First of all the books good and the audio is good. It's so enjoyable. It's like Obama's reading to you. It is it just so it is wonderful. And and it's such a it's such a lovely book because it's it's first of all it's so it's so atypical from any book you've ever read about Alzheimer's, any journal any any chronicle because first of all, they're unique traveling all over the world, you know, with someone with or you know, early early onset but you really experiencing Tony has you have such a good way of explaining and describing me I don't know how you did it. But you describe so much of the travel down to such detail that I felt like I went with you.

Anthony Copeland-Parker: 9:45

Well, that's everyone's good. I wanted people to travel with us as we picked up our suitcases and went from hotel to cruise ship to airplane every three to four days for were turned out to be eight years.

Susie Singer Carter: 10:03

It's amazing. It really is good. I really enjoyed it. Because I'm not a I'm not, you know, that person that likes to read travel books I want to go. But you took me during COVID to all these places, right? So it was it really detailed. It was so fleshed out, and I felt like I was tasting the food even that you were describing, you know, so it's really good. I really appreciated that. And then of course, we you know, your journey with Katherine and and which was nothing less than, I don't mean this in a flippant way, heroic. And I say that because I know what it takes. I love my mom dearly like you love Katherine. It still doesn't make it easier. Hold on one second, it's really noisy, much better. I said it was heroic, I say your heroic because even though you're all in and you leaned in as far as you could go, it doesn't make it easier. It doesn't. It's still a hard. It's a hard role to take as a caregiver and what you did was so beautiful. And and you know, and I know you enjoyed it, of course, all the way. But still it was it is it is it is a it not everyone can do that. Let's just put it that way.

Anthony Copeland-Parker: 11:27

Well, one of the things that I looked for was trying to figure out what Catherine I both enjoy doing. And that in turn made it a lot easier for me to navigate through the the trials and tribulations of someone with early onset Alzheimer's. The other thing is that the travel agents, industry is very caring. And they helped out a whole lot, from hotels to, to airlines to airports, and all that navigating. And then also there was a number of groups that we traveled with, they knew of our situation, and they would assist us whenever possible. So I had those things going for us. The fact that I love managing, and I enjoyed doing what I was doing, made it a lot more better. In the fact that it I was trying to find joy, you know, everywhere we turned every, every place we went, we were trying to find something that would add to our experience.

Susie Singer Carter: 12:34

Well, you did that. I know that because I've got had the pleasure of hanging out with you and cat. And I know how joyful she is. You can feel her joy with you. You know, she's just a joyful human being. And like my mom and and that's, that's a lot to do with your supportive her right. So she feels safe. And she feels heard. And she feels valued. And so that makes a huge difference.

Anthony Copeland-Parker: 13:04

Yes, it does. Absolutely. And that's one

Don Priess: 13:08

And I think that's so much because of what you of the things that people often comment about her even in her stage of Alzheimer's, they can still see that come out of her when they meet her. know, the way you handled it, as opposed to just saying, Okay, we're now going to just hunker in and deal with this and you know, sit in a room and everything you expanded her mind constantly and her experience and her heart. It's truly it's something to even though no, people aren't going to model what you did as far as going out and running marathons all around the world. But it's showing how, you know, new stimulation, new things coming in can can really, you know, I think it does, it changes not only the mind, but the heart too, is

Anthony Copeland-Parker: 13:54

Well, what they say is that the early stages of Alzheimer's things so the first memory senses that are affected are your short term memory. And then you can have those type of situations like for example, having dinner a guy Eiffel Tower, you know, those were our long term memory, and then me writing a book about it, and the pictures that went along with it. And then as you were talking about the audio book, we listened to that from time and that reinforces you know, our memory that she had and also just makes her day a little bit better.

Susie Singer Carter: 14:37

Isn't that a great thing? And isn't that we like if you're not a writer like Tony and you don't have you know, that's not something in your wheel in your bucket list or you know, but you could still like I made a picture book for my mom, you know on back in the day on Apple, you know, and I did like the story of my mom in in pictures and textBut now you could do, you could do something where you where you can read along with it, they have those kinds of books, they do it for children, right? You could do that for your loved one where they can hear it spoken out loud, which is nice because it, it's your voice you get, then it's recognizable. I mean, there's all kinds of ways we if you can't be with your loved one every day, like you could write, so you could do things like that. I mean, that's a great, that's a great example of why, why it's so impactful. And, and I mean, I mirror again with my mom, because the year that she lived with me and oh, you know, I've moved her into this. This facility, this this complex, that was a live work complex. I thought, oh my god, what am I doing my she's gonna drive everybody else crazy because people don't know, Alzheimer's. I was so wrong. Like, everybody loved her. Everybody supported her. Everybody just surpassed my expectations of humanity. So there is community out there. And you they and it was so healthy for my mom, she felt, you know, alive. She felt like she had a community. And she felt like she had a purpose.

Don Priess: 16:18

And there was stimulation. I mean, there's, it's not like, you know, I think sometimes caregivers want to isolate due to their own embarrassment. And just because it's you know, they don't want to have, you know, they don't want that behavior on other people and everything. And it's just, no, the isolation is what you know that that's what's going to kill somebody. It's, it's exposing them to life, which is what you did, both of you did, I think it's important to know this, because I think that's the natural reaction is when I'm just going to put them there, I'll deal with them. But I don't want the world to deal with them or them to deal with the world.

Susie Singer Carter: 16:55

I don't know if that. I mean, I think that's changing a little bit, Don, I just, yeah, I don't I think people don't know. Not everybody, but new people that are just dealing with it. But I'm so interested in what's happening in your life, Tony now because now you've transitioned from traveling because cat's diseases progressed, and it's healthier for her now to be more in one place. And now she's in an assisted living facility lightly. And Tony's moved in with his wife there, which is extraordinary. I don't know, I don't I have not heard of this from anybody else. I'm sure you're not the only one. But I think it's fascinating because your cognitive abilities are intact, and you're there watching how this all plays out. So a How did you make that choice? Why did you make that choice? And what, uh, what has been what have been, here's all the big questions, what has been advantageous about it? What have you liked about it, and what has been the hardest challenges. And I will repeat that?

Anthony Copeland-Parker: 17:52

Well, what ended up happening was about a year ago, we did our last international flight, we went over to Berlin, and Scotland and we did some races over there. So that was a year ago, October, unfortunately, right after that she started having seizures, which required us to take some medication and go through a lot of different testing for that. So that kind of knocked her the legs out from under the fact that she can no longer run because of that. And then the you know, the shear going overseas, the nine hour flight, that change of time zones, and all that was just going to be too much for so I was looking at, well, we're not going to be able to travel the world anymore. But we still enjoy traveling, she can still travel we still we just came back from Indiana, she gets on airplanes goes through security, all that. They they look at me, they look at her, they know something's up, and they assist us right on through like we're rock stars. As a matter of fact, that is a you know, first class and you know, everything's taken care of, for us. And during that period of time I started looking at, so we're going to settle down. And I went through an actual three month look at and asking people that have their folks their parents in assisted living or independent living or memory care situations and try to figure out what would be best for us. There are three levels, independent living, which is actually what we're doing, assisted living, and then also memory care. And as we were going through this process, most people have ended up somewhere near a relative. So you know, you go say, okay, my son lives here, her daughter lives there. You know what, which where should we move to? The other thing was the fact that we were still traveling so I wanted to be close to a major airport. So we picked Atlanta in the first place, so we could travel in and out and use it as a as a hub for us. So we figured Atlanta would be good. So we started looking in Atlanta area. And we're here in a facility called Brookdale Senior Living solutions and Roswell, Georgia, it's probably one of the biggest facilities I've ever run across. There's actually right now 285 People under roof, and then they have another 20 beds for assisted living. And then they have another separate facility for another 20 folks for memory care. Of course, when we first came here, the management here was like, Oh, okay. Catherine, Sky, Alzheimer's, so we need to put her in a memory care, and then you can come visit. So you can get an apartment somewhere, or you can go to independent living, but, you know, having her an independent living, it's just not going to work. We don't do that. And I explained to them that you telling me we don't do that is not a good answer. As you can tell from my lifestyle, you know, running all over the world and going from place to place as nomads, you know, I think outside the box, and I knew that the best situation for both of us, since, like you said, I have all my faculties and I'm, you know, 67 years old, but I'm still running and I'm in pretty good shape, that I could be able to be in a position to take very good care of her here. The things I like about this facility is the fact that it has about two miles of carpeted corridors indoors. So we basically can walk out our door, it is raining and snowing, whatever sleeping outside and stay indoors and walk two miles without ever seeing the same door. Again everybody decorates their doorways, you know, depending on the holidays for Christmas and Easter, and the like. And then there's a half mile sidewalks, it's a off the main drag in terms of the where it's located. And you have trees you have for landscaping. There's a neighborhood right behind us that we could go walk another three miles. So half mile around the facility, another three miles behind the facility and two miles indoors. And Catherine right now. She said what I refer to as stage six, as if you go through the seven stages of Alzheimer's, the last one being being bedridden, I basically do everything for her, but she can still walk. So she puts in six to eight miles a day of walking. And we have all sorts of places that we could walk here and walk in them in the nearby neighborhood. The other thing is that they have agency inside, which is called Brookdale at home, and someone's with her now. And they're outdoors walking around while we do this interview, and I found two other individuals, they come in three to four hours a day, four days a week, to help out in the morning. So we get up, we have our breakfast someone comes and they go walking with Katherine, she's, you know, loves it. And then I can get some things done, go for a run, take care of myself to some meetings. So it turned out to be a fabulous situation. You mentioned where it was the hardest thing, I would think trying to convince the management here that this is where we needed to be. And they have agreed that I was right. And that this is something that is very encouraging to others. Unfortunately, this is a it's not for everybody. Because in some cases, like if you're older woman and your husband has Alzheimer's and he can be somewhat combative, then of course you have to look at a situation where you you're not able to actually take care of her for take care of him yourself. And I've had some conversations with individuals that are here that had that situation and wish that they had had the ability to take care of their loved one but I do have some folks that are here staying in Independent Living and then I can see them walking across the street right across the sidewalk to see their their loved one and the the memory care situation.

Susie Singer Carter: 24:48

You had a few other challenges in the beginning right like that you had to source out do you want to talk about those or should we not?

Anthony Copeland-Parker: 24:55

Well, the other challenges that we had were I found that there were some individuals that were more used to folks that had physical disabilities as opposed to mental disabilities. And they always felt that those individuals needed to be separate from the general population as you would put it. And I think that they've come to realize that maybe they just didn't know, moving through this, that this is something that could benefit everyone. Most of the individuals here are single, you know, they, they lost your loved one, there's only probably, you know, less than 1/10 of the population are couples. And they, you know, kind of look at us walking hand in hand through the hallways, seeing the love and care that I have for Katherine, and all and they, they stop us and, and tell us how glad they are with, with us being here. The other situation was that there was some folks that now that Katherine is at the stage. And she's, like I said, I need to do pretty much everything for her, which includes feeding her, and they weren't very comfortable watching that take place. But me, the type of person who always tries to figure out the best, the best over whatever is thrown my way. And it turns out, you get two meals a day here, and breakfast, and or lunch and dinner. So what I do is I ordered just about everything off the dinner menu, and they make lunch out of it for the next day. So even though we're, you know, we're in our apartment, we come in, I bring the food, we sit down 30 minutes later, we're back out, you know, walking around and seeing the sights. So it turned out to be to our advantage to the situation. So I made, once again, lemonade of out lemons.

Susie Singer Carter: 26:56

It's awesome. And what you're also doing that's great, as you're modeling, you know, you're showing you're taking away a lot of the bias, about ableism. You know, there's a lot of ableism that that exists within our culture. And we don't want to see it we were in denial, we don't like it, we it. It offends it is a lot as a laundry list of things that it does, right it, it frightens people, and so on and so forth. And, and that's because we've continued to shield people shield ourselves from it. And we have hidden away people with any kind of mental deficiency, whether it's autism or schizophrenia, whatever it is, and we don't want to look at it and we marginalize those people, we don't assign any value to them. So what you're doing is really important, to me a really important thing because there's ageism, for one, and then you add on something like Alzheimer's, or Parkinson's or any mental illness. And now you've got two strikes against you. Now you're doubly not worthwhile, you know, and what you're doing modeling by your actions now ready, you can see people embracing that and saying, I wish I could do that. Because you're changing the paradigm

Anthony Copeland-Parker: 28:22

Actually, I have taken it a step further. And as you pointed out that I do have a book. And what I've done is I, I keep replenishing a copy of the book in the library here. And so, you know, folks know, oh, there's another book. So they go pick it up. And as we're walking around, somebody else stops and says, I'm reading your book today. And then I'm going to pass it on to chill. And then I got it from already. And you know, I got it from the library. So, you know, we're, we're celebrities here. And we're also giving them the opportunity to read about what we actually did in terms of finding joy through this diagnosis. And for us, for Katherine, was diagnosed in April, nine years ago. And I knew something was was wrong a year prior. So we're, we're coming up on 10 years of going through this, a lot of research on my part. Right now I'm doing some research on seizures. And I write to a blog writing with cat DICOM. And I updated probably every couple of weeks and the one I'm working on right now is talking about proper hydration for folks will Ciderworks it also for folks with seizures and I've I've seen some improvements in terms of spacing the seniors out by keeping Catherine properly hydrated and tried to pass on that information to as many people as possible through my writing and So I swore I was never going to do it. But I am working on a second book. But that's, that's down the road sometime. You crazy guy? That's great, though you're good writer. Can you tell me in the audience? What, what my mum didn't have seizures. What What brings about these seizures is that part of the Alzheimer's? Well, there's all sorts of different types of seizures there. There are some called absence seizures, which actually some people they think, is the beginning part of early onset Alzheimer's is the fact that Alzheimer's for that they just kind of stare off into space for a period of time, while they're actually are having a seizure, but they're not going through all the convulsions and, and in the life that you normally would associate with seizures, like epilepsy and things of that nature. What Catherine has is, is a type where her brain when she's waking up, is going through the waking process and a dreaming process, and it just kind of fritzing out. And she usually has them upon waking. Now she has one in the morning, when she wakes up, that she's more susceptible to have another one sometime during the day, the brain is is trying to recalibrate as it were. So what I'm looking at is the fact that there's a lot of studies talking about hydration, and how how that affects the brain, how your brain actually has to work harder, if you're dehydrated, and then extra work that you're going through, puts a stress strain on your brain and such. So did you end up having a seizure seizures that she has usually only lasts about 30 seconds to a minute. Normally there, you know she's still in bed, there, she does have convulsions. And then normally, that day is ruined. You know, there's nothing we can do for that day or two days, I really knocks her down and puts her behind the curve, as I've mentioned one time before is that her decline is like a sine wave some days are better than other days. And then when she has a seizure is really a downhill for her for a period of time for sometimes a week or two. So I can't keep them totally gone. But what I'm trying to do is just space them out over time, like right now. And I keep track of them. And we're working on almost two and a half months since she had the last one. So we're hoping that we can knock that we can do that. Did she have? Does she have any memory of them after? Or is it just affect her mental state just affects her mental state? No, she has no memory of them at all? Yeah, she you know, I've talked about it, but she has no consciousness of it, of that fact. So, you know, we just do they say that there's a couple of things that could be the cause the brain shrinking. Overall, it could be the cause. And the amyloid buildup in the brain could be the cause of it. So surprisingly enough, there's not a whole lot. You go to clinic and you can get all wired up. And they can say, Oh yeah, she had one, you know, 48 hours ago, whatever. So here's the medicine. Speaking of medicine, they put her on. Long name don't know the name of it. The short name for the drug is called Keppra. And we were on it for six months. And I would say that was the worst six months of my life in terms of dealing with someone on a medication and also with Alzheimer's. It just really, really kept the seizures away. But he brought up a whole host of other things. As a matter of fact, I was talking to Teepa snow about it and she made a quote that I'll always remember is that you're damned if you do and you're damned if you don't, in terms of taking the medication because of the side effects are, are somewhat is as bad as the seizures themselves. So we did that for six months. I said I've had enough of that and getting waffle took her off of it. And we're just trying to go through the process of trying to stretch them out.

Susie Singer Carter: 34:44

What was what were some of the

Anthony Copeland-Parker: 34:47

effects from the drug? Well, it makes her tired was it so you can go from tired to agitated to sleepy to, you know, walking around in circles to sigh It pains, muscle twitches. It didn't get really bad until she took away or asleep, she could only sleep about three hours a night before she would wake up, wake up, get up wanting to go somewhere, you know, at two o'clock, three o'clock in the morning.

Susie Singer Carter: 35:19

And then the one that the doctors got really concerned with was that he started affecting her skin. She started getting really red rash that she was scratching continuously waking her up scratching. And then you know we have that's so awful. You're really have some serious problems. Oh my god. Yeah, it totally, totally wasn't right for her. Now, I mean, prescriptions are a big issue. And you know, and it's funny you were talking about like, like some some men who have Alzheimers will get agitated and they can put other people at harm because they don't know what they're doing. They don't realize it but they're you know, they're they get get aggressive. I have a friend whose father is going through that right now. He's probably well, if we're gonna go through the stages, I would say he's like stage five, four or five. And she, the family keeps getting calls saying, we want to give your dad's Seroquel it'll be good for him and good for everyone else will Seroquel is going to make him a zombie. Right. And so she's been asking me what do you think and I and I keep saying it's like putting a bandaid on it on a on a, you know, on a bullet wound, I mean, that's not what's going to fix it, you know, that's, that is, that's going to help them more than it's going to help him. Because he you know, that's just part of that. There's better ways there's behavioral ways to handle that. But drugs are so they should be your last resort, if you can do anything else, because especially when you have a cognitive impairment, and you know, I cannot tell you the list of drugs that say, Black Label for people with dementia, not good for people with dementia, you know, and, and when I say Black Label, that means death. That doesn't just mean bad, you know, bad bad effects from it, it's all of them.

Anthony Copeland-Parker: 37:26

Because it comes down so much, right. So to give folks, you know, to keep them from being agitated, combative, unfortunately, actually accelerated the disease. So you're probably taking it taking a year or two after a lack of does by giving him this drug. And most folks in memory care are either medically or actually physically restrained. And you have to sign off on the fact that that's what you're going to allow them to do is so but you know, for us, yes, there's sundowning, that takes place, everybody listening probably understands that. And for us after dinner, we hit the hit the streets, hit the carpet, as it were, and we just walk and walk and walk. Most people because they're inside the apartment or inside the home, they have nowhere to go say is gonna go around in circles in their apartment or home. Whereas we will open up the compartment door, out of the corridor. And we are saying hello to everybody that's on your way to listen to the music or play cards or whatever the activity is of the of the evening. And we enjoy it. I will mention something else that you know, I'm a backup to something that you talked about in terms of photos. When I wrote the book, one of the things I wanted to do is have something that also journaling helps people, caregivers, by journaling, what's going on in your mind and talking about it. That's how I came about the book. Also, I wanted to be able to share with Katherine. So write the book. First you have audio book, we can listen to the audio book. It's something I found, I'm sure everybody knows about this I just found out from my daughter is I don't call a fire stick that you plug into your TV. And then you can download all your pictures onto your TV set. So I have claimed during the day when we're indoors having dinner or breakfast, whatever, have some music playing in the background. And then I have a slideshow, showing of all the pictures that I've taken over the years. And you know, she's not sitting here staring at him. But you know, every now and then she'll look up, she'll see a picture of us, you know, in Berlin, and she'll start smiling because he clicks something at our brain as to you know, a memory that

Don Priess: 40:00

was there and that's, that's important because, you know, she's lucky enough to have you there, most people don't have their loved one living with them in this situation. And that's something that's, you know, it's not going to solve all the problems, but that's something that for the person who's in their room alone all day, or you know that, that have something like that it's a very easy, you know, simple thing to do that, you know, because, you know, most people don't have somebody with them living with them in that when they're in this stage. Right. So that's a really, yeah, that's a that's a, something that could easily be done. And, and I think, like you said, even if she just smiles for a minute, and you know, the importance of

Susie Singer Carter: 40:39

familiar, familiarity, like I did that, for my mom, I didn't have the firestick. But I had a photo frame that had video on it. So I made a, you know, slideshow for her with music. So when I couldn't be there. So important, so important. And it just feels familiar. You know, it's familiarity, even when you're sleeping, if you're hearing a little bit of noise like that, if it's soothing, if you're agitated, or if you're feeling lonely, or whatever. So it's so important. It's really important until we change this system, but what, so are your plans to stay with her

Anthony Copeland-Parker: 41:21

to see all the way through all the way? Yes, as matter of fact, that was one of the promises I made to her. Her dad had vascular dementia. And he, he only lasted about two years, what he decided to do was when they put him in a nursing home, he decided that he was just going to stop eating, that was the one of the things that you can control. And you can't take that away from him. He had his DNR and Catherine has that also no feeding tubes. So I plan on being here. And, you know, we're gonna go through this together dry right now my goal is to keep her walking as long as possible. And, you know, she's outside of the Alzheimer's season, probably better shape than I am. In terms of Stan Amma at all. So we plan on keeping that going as long as possible to try to keep her out of the bed. And then we'll go from there. We can, in this apartment, do everything that we need throughout the decline. There are some folks that you can get bring hospice in to the facility. So we've we've thought our way all the way through that. How are you doing? Well, I tell you what, I found two fabulous ladies that, like I say, come in three to four hours a day, four days a week, I'm spaced out. So why don't you know, they were here at nine 830 In the morning, we finished up breakfast, and then they play their music and off, they go for three to four hours, I can get a lot done, I can go run, I can talk, I can set up appointments and interviews and work on my writing, which I enjoy doing. Very much very cathartic for me to do things like that, and promote the book that the abridged version is coming out. May 2, you can preorder now, through Barnes and Noble, Amazon and Books a Million. And I'm really excited about it. I got a new publisher, Morgan, James Publishing, which has the same mindset as I do in terms of trying to get this out in front of as many people as possible, because I think our story is, is very important for folks to think about to dealing with Alzheimer's a little bit different because like I said, it's, it's yours right now. And this is not something that you're gonna get. And so it's a journey, and you have to look at it. And that's exactly that's what I show in the book. And I talk about this to as many people as I can. And I enjoy doing that. So, for me, I'm doing great. I love it here the food is great. Right now it's, you know, 70 degrees here and in Roswell, Georgia, sunny out. And so it's a beautiful day. I can't complain at all. Wonderful, wonderful. What do you think of the what what do you think of the realities of the model that you've created there of becoming a model for for others and other and other facilities? Do you think it's a reality or does this some kind of, I think it's a reality and to the, to the point that that is one of the things that I want to talk to as many people as I can. So they have it as an option. It's not for everybody. But if they do have it as option, so anybody listening here, or anybody reading it in my writings about it, because I actually wrote an article about a transition, and how I went through it. Like I said, most folks try to find somebody that's nearby where your relatives are nearby. So when you're looking at facilities, first thing they want to do is they want to get as much money as you as possible. Memory Care is the most expensive way they take care of your loved one, assisted living is the second and independent living is the cheapest. And it is everything that you need to have all activities, you have the ability to have somebody come in and help you watch, watch and take care of your loved one. And you can stay here throughout. And so now folks will be able to go into these facilities and talk about the fact now I don't think we're ready for memory care, I don't think we're ready for assisted living 889 $1,000 a month, you know, I like to have a nice one bedroom for three grand, you know, the folks, you know, all the all the places here have fortunes outside and you know, nice, you know, walking areas, so you can have something to look for when you go out, and you're looking at making that transition from the home to somewhere to live. And so I I know, folks that I've met, you know, wish they they had thought about that, you know, earlier, but you know, it is what it is so, but they're talking to their sons and daughters and, you know, grandkids, so hopefully, over time, it will be something that people can look at, as an option. As opposed to just going straight up. I've got Alzheimer's, here, we need to put them away. And that's the that's the worst, that's the worst form, and it takes the burden off their staff to it, it helps you know, it's it, it actually is easier when you know, there you have less have to give less attention. You know, because you're handling so much of it. So it's it's kind of a win win in that respect. It's amazing. I love it so much. And I love I love how happy you are. Because you it just is. So it makes me happy because and everything you're saying is resonating with me. Because my parents, my stepdad and my mom, I say they were like one good person, one almost whole person as they were aging because my mom had, you know, cognitive impairment, but she was physically perfect. And my stepdad who was 12 years older, his mind was sharp, sharp as a tack. He couldn't hear worth crap, he couldn't see his eyes were going. And then he ended up using a walker and then a wheelchair. And my mom would be his ears and eyes and his legs and he would be the brain. So the two said the two of them made almost one whole person and they were able to live together until he died at these assisted livings and it was so good because my mom was so happy.

Susie Singer Carter: 48:07

And that's you know, and because they had each other it's important, it's important we, isolation is the worst. We saw that through, you know, COVID and so many people that didn't have cognitive issues that living in long term, or just facilities because they're older. They need more care. They died from Isolation Isolation is, is lethal. It's it's cruel, it's cruel. It's a cruel thing to do to people. So I applaud you and I'm it makes it's great because hearing you not really having a downside to it is just a beautiful thing. And you know, I would I was thinking yeah, I mean it's been it's fantastic. So I just say take take Tony as a as a model role model. read his book first. And you'll be moved you'll love it. You'll laugh and you'll feel amazing. You'll feel good you'll feel exhausted.

Anthony Copeland-Parker: 49:19

That is what does one thing people do come up to me go oh my goodness, I'm halfway through your book but I'm tired of reading about your because I make some I make you feel like you're actually running a marathon through some of the

Susie Singer Carter: 49:33

Oh yeah. And also when you're running late to your planes and

Anthony Copeland-Parker: 49:38

are getting stuck in Argentina and we can go on and on about some of the crazy things

Don Priess: 49:42

and you lose weight you'll lose weight while you because you'll feel like you've eaten and so definitely go and pre order pre ordered this.

Susie Singer Carter: 49:54

Yeah, I'm so excited for you

Anthony Copeland-Parker: 49:56

I going to make two shameful plugs,

Susie Singer Carter: 49:58

please do

Anthony Copeland-Parker: 49:59

You see my T shirt here. And we're going to go running with cat. And that's where you can go running with cat.com. Our race against early onset Alzheimer's, and I'm really, really happy about the new book cover that they put together. James, they did a really good job there. So I'm looking forward to it hitting hitting the streets, I got advanced copies. Speaking of which, I don't know how you all work this but they want to contact you or want to contact me by giving away one autographed, advanced copy to whoever you select or you figure out how you want to do. Oh, that's awesome. Okay. Well, I'll tell you what, go ahead. Go ahead. I'm just gonna say no, I'm just saying that. I was gonna say that, you know, I'm paying for shipping and all that. So all I gotta do is either contact me or contact you. And you let me okay.

Susie Singer Carter: 50:55

Are you white? I'll put I'm gonna put something in the in the show notes. And then we'll figure out something and we'll put it in the show notes. And then we'll make that happen. You got it. So that's a great offer. That's a really a very generous offer. And what else or anything else we missed? Talking about? Oh, wanted to say

Anthony Copeland-Parker: 51:18

to say goodbye here whenever you all want to close us out. On our love our I Sure will.Well, I get my big hug. Yeah.

Susie Singer Carter: 51:26

Big hug!

Anthony Copeland-Parker: 51:27

Yeah,

Susie Singer Carter: 51:28

I totally wait. I'm gonna do this for when you watch it back. I want to just say Catherine we I love you. You're amazing. I wish I was there to give you a big hug. And I you are a fierce, fierce woman. You are a role model for everybody. And just keep on keeping on. And that's it. I love it. I love love. Love you.

Don Priess: 51:55

Absolutely.Love Love time. More Love.

Anthony Copeland-Parker: 51:58

Best of luck with you and your thing. Luck with you in your project and you to Susie

Susie Singer Carter: 52:05

Yeah, no, we're just

Anthony Copeland-Parker: 52:05

glad we were able to work this out. So

Susie Singer Carter: 52:07

W're the first ones. That's because we you guys could be the first love you and you love us and it's all about love. Right Don? Why is it about love?

Don Priess: 52:15

You know why? You know why? Because love is powerful. Love is contagious. And love conquers Alz. We thank everyone for watching and listening today. If you like her, or like we just saw or heard please like, share, follow do all those fun things. Definitely check out Tony's book. And again, thanks for thanks for attending.

Susie Singer Carter: 52:39

Attendee

Don Priess: 52:39

take care

Susie Singer Carter: 52:46

Hey, this is Susie singer Carter. And I just wanted to take a minute to talk to you about bed sores. I know. But if you're like I was you probably don't have a clue what a bed. So really is. Most people don't. I mean, no one told me and I really just assumed it was part of the body that was like the name says sore from lain in one position too long. And then if you change the position, all better. Wrong. That sore is really a euphemism for more appropriate names such as pressure wound, and to keep it as ulcer. Unfortunately, I discovered what a bed sore really was. When my mom was admitted into the hospital last year with a stage four ulcer, that is the worst level, you don't ever want that to happen. bed sores can develop quickly and worsen rapidly and can lead to serious health issues, even death if they're not properly treated, or properly treated. And that includes cleaning and dressing the wound, but most importantly, reducing pressure off the sore by frequently changing the position of the person off of their wounds so it can heal and that can mean propping the person up 30 degrees to the side, far enough to be off the lower back, but not too far as to be on the side hip where there isn't much cushion right between the skin and the bone. This is why I'm so excited to tell you about that sir rescue, which was designed by an amazing woman when jewel a nurse who was tired of fooling around with simple pillows and bulky wedges that just don't work. The beds are rescue positioning wedge cushions are uniquely designed to provide ergonomically correct and comfortable support for a sustained period of time without touching the sore and the curvatures and bilateral angles and make it possible for the bedside cushion to be used to support many other body parts as well. You can flip the heels you can put it under the head, you can put it under the arms behind the knees, both sides. You can even use it as a breakfast in bed table, the curvatures of the bed sore rescue fit the curvatures of your person's body and it's made to meet all the patients safeties, and bed bound positioning standards for acute and long term care facilities. I wish I had it for my mom, I really do. So chances are if you have a loved one in long term care facility or at your home, you may become a pressure injury soldier to but bedsores should never never get to stage four and one way to ensure that they don't is to make sure that as soon as one begins to develop, you keep the pressure off. You can do that easily with beds so a rescue and you can find bedsore, rescue and many other pressures solutions online at jewel nursing solutions home of the patented bed so rescue positioning which cushions pads and pillows that's jewel, je w e l l nursing solutions.com. And when you use the special code and C F O P the entire amount of your purchase will go to support our important documentary No Country for Old people, which chronicles my mother's journey navigating the nursing home long term care crisis that literally began with an unreported untreated pressure wound. So take the pressure off yourself and your loved one with the bedsore rescue