Love Conquers Alz
Love Conquers Alz
LIZETTE CLOETE: Have You Heard of Elopement in Dementia? What Caregivers Should Know.
Elopement usually conjures up visions of secret excursions or maybe even the Elvis Chapel in Las Vegas. But elopement is also used to describe what happens when someone with dementia or cognitive loss leaves a safe area, such as a home or care facility, without supervision or awareness of the potential dangers. In dementia care facilities, it is a heartbreaking reality that needs urgent attention.
With over 30 years of experience as an occupational-therapist-turned-dementia-coach and 5 years of being a daughter-of-dementia, our guest, Lizette Cloete OTR/L, CADDCT, CDP, shares her first-hand, personal experience with elopement, how it can lead to accidents, injuries, and even death as a result of hypothermia, malnutrition, and weight loss, and why there is a huge need to protect vulnerable residents living in long term facilities. Lizette is the owner of “Think Different” Dementia, helping families navigate dementia together, using science-backed strategies, has become a sought-after speaker on dementia-related topics, both nationally and internationally. Her podcast, Christian Dementia Caregiving, is a key resource for connecting and sharing her valuable insights.
In 2023, Lizette was awarded a grant to create an online education and coaching community for family care partners. She is truly a fount of information and support for our caregiving community. We recount personal stories, including a tragic incident from 1994, highlighting the dire consequences of inadequate staffing and training in these facilities. By sharing these narratives, we stress the critical need for improvements in care and safety measures to protect vulnerable individuals. The broader implications of facility understaffing reveal a pressing need for vigilance and proactive strategies to prevent similar tragedies.
Understanding and managing dementia-related wandering is a complex challenge for caregivers and families. From unpredictable behaviors to ethical dilemmas around monitoring technology, we discuss real-life anecdotes that underscore the relentless nature of wandering. With hopes pinned on proactive engagement and innovative solutions, we aim to inspire meaningful change in caregiving practices, ensuring the safety and well-being of loved ones.
Connect with Lizette: Think Different Dementia
Christian Dementia Caregiving
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Don Priess:Visit jerrygadgetscom to learn more and start making every moment count. For a limited time, you can get 20% off your next order of Jerry Gadgets by going to wwwsswwcom. Jerrygadgets for dementia and enter the special Love Conquers All's coupon code LCA20. Get 20% off Jerry Gadgets today. 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 Alls, 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, suzy Singer-Carter and me, don Preece.
Susie Singer Carter:Hello, I'm Suzy Singer-Carter.
Don Priess:And I'm Don Preece, and this is Love Conquers Alls. Hello, Susan.
Susie Singer Carter:Donald, how are you today?
Don Priess:I'm uh, it's, it's well, this is actually a little later than we normally do a show, which I kind of like.
Susie Singer Carter:I like that not getting up in the morning thing.
Don Priess:Yeah it's great.
Lizette Cloete:I mean, we could do it at.
Don Priess:No, or a midday person either, and night makes me tired.
Susie Singer Carter:So pretty much you're tired all the time yeah but pretty much. It's a big problem folks.
Don Priess:It is.
Susie Singer Carter:Feel me, feel me on this. I'm going to never watch a movie with John, because this is what you'll see.
Lizette Cloete:It's the dog. I keep telling you our dog.
Don Priess:It's a little Yorkie.
Susie Singer Carter:We're roommates, by the way, john and I are roommates.
Don Priess:The dog tucks itself into your hip and literally sends magical sleep vibes into your body. That you cannot overcome, you cannot overcome them.
Susie Singer Carter:So dogs get blamed for everything, don't they? We just use them for absolutely, absolutely it's like who broke this dish?
Don Priess:Who? Yeah, who broke the dish Dog did it yeah.
Speaker 5:So what's happening?
Susie Singer Carter:Well, you know I was. Newsletters are so time consuming. Can I complain for a second?
Don Priess:Do I have a choice?
Susie Singer Carter:No, you don't have a choice. But if anybody out there listening has any advice on how to like streamline this, I, maybe I should use ai, but then I feel like I'm cheating you know like you are.
Susie Singer Carter:I don't know I feel like it's not my voice because I haven't really tried it yet for that, but I I always know, I know I need to do a newsletter because I want everyone to be up to date. Our guest that we have today is very good on that. She's super good on newsletters. Everybody's better than me on newsletters. I'd rather just talk.
Don Priess:Except for me. Yeah, I'm not. I would be terrible at that.
Susie Singer Carter:Yeah, you're worse than me. No, it's just that to me, I get too attached to making them perfect. I'm into the production of it all and then I realized three hours just went by for a one-page thing, right. And then also the technology is really clunky. I'm using MailChimp Sorry, MailChimp, but I mean, but it's not very intuitive. Honestly, I can't figure out why things don't work the same. Can you help me?
Don Priess:I just uploaded a new it was obviously created by a monkey. How good do you think it's going to be? It's right in the name. It's in the name.
Susie Singer Carter:You're right, I don't know, you should maybe use male smart guy or something. I don't know.
Don Priess:Instead of.
Susie Singer Carter:Mail chip. Okay, that's done. I'm done with that. Okay, got it. Feel better I feel much better now. Yeah, good I was feeling really dumb, like every time I upload new subscribers from like a mailing list that I have or it's not a mailing list. I don't buy lists, it's just people that I've aggregated and then I do it and then it's like that I go oh, there's nothing there. It says it says no one's subscribed, but I say that they're subscribed. So someone please help me with this.
Don Priess:I'm having issues and I shouldn't have to maybe somebody in tech support is listening right now, who knows? Yeah, I do, I know, and I'm tired of hearing about it.
Susie Singer Carter:So, yeah, let's fix it all right, I put it out there in the ether let's talk about the important things. Now let's talk about our okay, okay, what are those?
Lizette Cloete:Well, our guests today, I would love to.
Susie Singer Carter:Yeah, we're sort of branching out in our Alzheimer's conversation and I like it.
Don Priess:Definitely.
Susie Singer Carter:I hope the people listening like it, because I think it's important. There's a lot of-.
Don Priess:I do too.
Susie Singer Carter:Podcasts now. When we started there wasn't Four years ago there was not a lot. There are a lot now. So you have a lot of choices, but I think you should just stick with me and don and our next guest other than that that's it.
Susie Singer Carter:I support all my except for yeah, unless our next guest has a podcast, then I think we should bring everyone should bring their own, you know flavor, otherwise there's just a lot of the same. But then again that's okay too. I'm totally contradicting myself because, yeah, maybe you like the way someone else says it better. You like a more serious person. I'd rather bring it to you in a more fun way, a little lighter way, because it's such a heavy breezy, if you will.
Susie Singer Carter:Breezy, you are breezy, Anyway. So without further ado, go Don Do your job.
Don Priess:I'll do that. Lizette Kluta is a veteran occupational therapist, pastor's wife and daughter of two parents with cognitive loss. With over 30 years of experience as an occupational therapist turned dementia coach, and five years of being a daughter of dementia, she has become a sought-after speaker on dementia-related topics, both nationally and internationally. Her podcast, Christian Dementia Caregiving, is a key resource for connecting and sharing her valuable insights. In 2023, Lizette was awarded a grant to create an online education and coaching community for family care partners. She is truly a fount of information and support for our caregiving community and we are delighted to have her with us today. So, without further ado, let's say hello to Lizette Kluta. Hello Lizette.
Speaker 5:Thank you so much. You did such a good job on the name. I'm always proud of people when they attempt it and then they crush it. It's wonderful.
Don Priess:I feel yes.
Susie Singer Carter:Yes my day is made.
Susie Singer Carter:My day is made. I love this woman. She's from South Africa, see, south Africa. There's my only thing I can do and shame, shame, right. And we got to talk. I got to talk on Lizette's podcast and we had such a great conversation and she brought up this topic that we're going to talk about today, which is eloping, which is not getting married in Vegas. This is a whole other topic, right, and I said that's such a great conversation because my mother eloped and many people I've talked to have eloped, and I wanted Lizette to talk about this because she has put a lot of attention and focus onto this matter that we I think most of us have dealt with that with somebody with dementia or Alzheimer's, and I think so. Thank you for coming on to have this conversation.
Speaker 5:You're welcome. Do you remember the story I told you that precipitated the conversation about elopement?
Susie Singer Carter:I want you to remind me and my readers here I'm a reader, you guys aren't reading.
Speaker 5:It works that way, right? Yeah, so when we were, when we were conversing I believe it was, I don't believe it was when we were recording but when we were talking I mentioned one of my very, very first jobs when my husband and I moved to the United States in 1993. This would have been January of 1994. I had a terrible, terrible experience going to work one day, and so you've got to think about it. This is 1994. It's pre-cell phone Life was, you know, very vastly different.
Speaker 5:I was young and dumb. I was 23 years old as a brand spanking new occupational therapist, working at a skilled nursing facility in Fort Wayne. Working at a skilled nursing facility in Fort Wayne, indiana, in January. My husband and I had one car which meant he drove me to work in the morning. I'd go to work at 7 am and he would pick me up after work in the afternoon at 3.30. And so I want people to picture in their mind you know it's cold, it's winter, it's a nursing facility, you know you can drive in the United States by a nursing facility or a funeral home. And no, it's a nursing facility or a funeral home. They kind of all look similar. And he pulled up the car and I got out and the very first thing I saw was a wheelchair outside the building. But, like I I said, I was young and dumb At that point.
Speaker 5:To me, a wheelchair just meant a wheelchair. Now, 30 years later, a wheelchair means where's the person in the wheelchair? There's a wheelchair. But at that time it was very, very ignorant and naive and I didn't think, oh, there's a wheelchair outside. I just thought there's a wheelchair outside. I just thought there's a wheelchair outside, it needs to go in. And I distinctly remember going up to the wheelchair and breaking it out of the ice Right. So it's January in Fort Wayne, indiana and starting to go in, and my husband pulled the car, reversed the car out and the beams of the car alighted on the person who had been in the wheelchair, and so my immediate response was to run inside as quickly as I could get the staff, you know, come back outside, because this is a person who is outside and it's January and it's cold.
Speaker 5:But I'll never forget what she looked like, because she was obviously an older female person who had gotten out of a nursing home in the middle of the night and she died outside that nursing home and it is called elopement. Right in a facility, the person elopes from the facility. The other word that people know more commonly here is now we talk about people wandering right. They wander away. It's the same concept but the formal word for it is elopement. They've eloped. They didn't have permission to leave the building, but the reality of the matter is that that never should have happened. Like in a facility. It never should have happened.
Speaker 5:She was at the far end of the facility and had to go through several double doors before she even got out of the building. They're supposed to check on residents overnight. You know there should be no reason why it was 7 o'clock in the morning. They hadn't even started looking for her before I got to work. Now, fast forward, you know, 31 years later, I would not have run in. I would have gone in and called 911, and called 911 and I would have started steps to have it be really looked at what occurred. But you know, hindsight's 20-20. As we get older we learn more and we know better what to do. But I will never, ever, ever forget that patient, and that was, you know, she was living there and she had dementia, and it's something I don't think we talk about enough in the health care space, or even in Alzheimer's care, that a person can elope from home and we don't think about that.
Susie Singer Carter:No, it's first of all what a horrible experience. No, it's first of all what a horrible experience, obviously for the woman and you as a young, you know person.
Susie Singer Carter:And her family, her family, all of that, and you know. Again I'm going to go back to the reason why we're doing no Country for Old People, our documentary, because those things, like you you said, should never happen. And if these facilities weren't understaffed and were better, it had people that were better trained because they were staffed properly and therefore, of course, paid properly and therefore they were more invested in their job, they would those things would. Those would be the exception to the rule, but they're not, because it happens all the time. I mean, my mother was found three miles away from the facility that where she was in memory care and it's supposed to be locked.
Susie Singer Carter:And then there's, you know, and then people that we've interviewed even for the documentary, this lovely family, the stewart's. Their mother was found dead outside. Nobody knew why she was in a memory care lockdown situation, there was no way to get out, and yet they know that she died from falling out of somewhere. Because there was no, there was no way for her to get down without anyone seeing her, so no one was watching. And the trauma that is put on this family, and again, this family is just one of millions of things. You know where things have happened, where they shouldn't have happened. You know it's horrible, I mean, it's horrifying, and these memories don't leave you. They stay forever.
Speaker 5:No, they stay forever and they change you forever. I absolutely agree they change you forever. It changed me as a human, but it also changed me as a therapist.
Susie Singer Carter:In a good way or as a therapist.
Speaker 5:In a very good way. I'm way more assertive with people related to safety than I might have been if I didn't have that experience. Right, I'm a lot more direct. I'm pretty direct. South Africans are direct.
Susie Singer Carter:Yes, you are, yes, you are.
Speaker 5:Right. So that's just a fact, fact that's never going to change. However, in the same vein, you know I will tell people things that they don't like to, that they don't want to hear, because it's truly a safety concern for the person, safety concern for the person I'll never forget. Recently, within the last few years, I was still working in home health and I had a wonderful couple that had been married for they weren't even super old. She was 14 when they got married and there was a backstory as to why she was as young as she was, but they'd been married like 65 years. They were in their late 70s, you know early 80s, and um brother-in-law I don't know if you have this much in california, but where I live in the country, uh, people have um mom and you know somebody lives there, and then there's a sibling or grandkids and it's like this mushroom of a whole community of families that are all on the same property or within sitting distance of one another.
Speaker 5:And she had severe Alzheimer's and he would allow her to walk to the brother's house, which was right next door, and I told them immediately the very first time I met them. I'm like that's not a safe situation for her and he's like no, she's been doing it forever. I'm like you. It's not a safe situation because she's not the person she used to be and she can get turned around. She can. She can decide in her mind that she's going somewhere else and take off and you're never going to find her again. Or you know, it's summer in South Carolina, she falls in a ditch and and she's laying out there and get heat stroke and all these other things. But but people, people who are taking care of somebody with dementia at home, do not necessarily think that they're going to walk away from home, but the statistics actually show that 80% of all people living with dementia will wander from home at least once. At least once, and aren't they?
Don Priess:usually trying to find their home. Aren't they trying to walk, or do they know where? Like, where are they going? Are they trying to find where they were, or we don't know that?
Speaker 5:I don't think there's really a way to know. I think, if I think there can be so many different reasons, a person can get something in their head and they may decide it's five o'clock, it's dusk, it's time to go home from work. They may, in their mind, be thinking they're at work and it's time to leave and to go home, or they may truly start out thinking I'm going to my brother-in-law's house across the yard and take off and halfway there forget what they were doing, turn around and get turned around and go off in a different direction. I think it's very difficult to truly know or understand what they are thinking, but the reality of the matter is just because somebody hasn't done it doesn't mean that they're not going to do it.
Speaker 5:Recently I had a blessing. I had an opportunity to be a support person on a dementia-supported cruise and there was a gentleman who was on that cruise who never wandered away from home, but on the cruise he wandered away three times. Three times on a cruise Once in the hotel in Fort Lauderdale, which was pretty darn scary. Once, once when we were on the cruise itself, and once the last day. And you know, we were we. We had strategies, we had things that we were implementing to keep him safe. But the reality is, you know, it happens, and it happens more frequently than what we think and nobody's really talking about it all that much because we don't you know how many. How can you research? Oh, mom walked away from her home and we found her two blocks away and brought her home. Nobody's tracking that data for people at home. We are only aware of the bad consequences of somebody not being found. But how many people are doing it that are being found, but we just really don't know.
Susie Singer Carter:Right, I mean, I think that there is technology that I've talked to people in the industry, in our industry and community that are creating or have already certain kinds of tracking devices that you can even like your Apple Watch. You know there's ways to be able to find where people are. But, that said, I was trying to look it up while you were talking. I can't think of his name right now, is it Carl Mooney Kyle?
Don Priess:No, no, no, Kyle Mooney's an actor. That's what I thought. I can't think of his name.
Susie Singer Carter:But there was a documentary based on this man's wife that she was a brilliant area like a heiress engineer and he also is an engineer and she had Alzheimer's and they were at the modern Museum here in Los Angeles and she had early onset Alzheimer's and they he. She was still living at home. She went to the restroom and he was waiting outside for his wife and she was in there for a while so he thought he'd just dash into the bathroom and use it. He came back out and she wasn't coming out, wasn't coming out, she was gone and they didn't find her until a year later and and it wasn't good news- it wasn't good news.
Lizette Cloete:No.
Susie Singer Carter:And so since then they had come up with tracking bracelets. I know that in Los Angeles and he's been, you know, very, very active in the Alzheimer's Los Angeles community and you know it's things like that that bring on change anyway. But you know, and here's a very brilliant man and you know you'd think like he was very conscientious, but it took a second for her to be gone and gone that fast, because there was even like, if you watch the documentary and I'll put it in the show notes, guys, because I can't think of the name of it it's like where's linda? Or have you seen linda, something like that. But um, they had, like you know, cameras that that are there on the streets, but only what, and they could see her going down the street and and there are there's. There's a certain thing that happens with alzheimer's, where one of the um experts was saying that when they're walking and they're lost, they'll continue to go a certain way. It's like left or left. Do you know anything about that?
Speaker 5:I just know that they'll continue to go. They literally will not stop, they will not ask for help, they will just keep walking until they collapse or yep, until they stop or fall into a ditch, whatever you know. And you bring up the tracking devices that I'm going to use the gentleman on the cruise as an example because I was racking my brain Like when this happened. I'm like the first time. He didn't have on shoes. He was in his pajamas and just took out. He wears glasses, didn't put his glasses on.
Speaker 5:They make trackers for glasses. They make trackers for shoes. They make trackers for belts. Right, um, they make air tag trackers. That trackers are. You can find trackers for almost anything. The second time, um, he left. He never wears a belt, he takes them off. He takes off bracelets, he takes off watches, he takes off everything. Yeah, and so I I literally was racking my brain because there was nothing that we could attach to him that he wasn't right you'd almost have to do a chip, you'd almost almost have to do a chip like they do with children.
Speaker 5:Exactly, and I hate that. That was my thought, because I don't want anybody to chip me. I know Right, there's a conversation. There's a separate conversation about chipping a person but, at the same time, chip our animals yeah, to know where they are, right, right and to be able to find them again it's.
Don Priess:It's not a horrible thing, it's not. It's really not a terrible thing, it's I don't think.
Speaker 5:I don't think it is, but for a person who, who literally, will not keep something on their body, how do you agree?
Susie Singer Carter:my mother wouldn't, my mother you know, I was thinking like if I could take one of her bracelets that she knew that she loved her jewelry, if I could take something that she was familiar with and and have something put into that thing that was she was familiar with, because otherwise, otherwise for sure, she would have said what is this stuff? Get this off of me, you know. Yeah, I don't want this stuff, this isn't mine, this isn't me.
Don Priess:Yeah, she would not have liked that at all. God forbid somebody could take a bracelet from her. I mean, once you're out in the world you don't know that. That's that danger. So, by the way, it's Kirk Moody.
Susie Singer Carter:Moody, not Moody. Yeah, it's Kirk.
Don Priess:Moody.
Susie Singer Carter:Did you see his movie, so we Can't Catch. People in Suspense.
Don Priess:I'll look it up. I think it's called, you know. Look it up.
Susie Singer Carter:So I was going to mention another anecdote, terrible anecdote. When I was first starting the documentary and I went to one of my colleagues who's a director and I knew that her mom had passed away already but had been at the same facility my mom was at before my mom and I said, you know, wondered if you hey. I asked her did she want to be a part of this project? And she was super busy at the time and actually didn't really have the heart to do it. You know something which is quite common Most people, once it's over, they don't want to look back, because it's sometimes when it's really hard you don't want to look back. So but she did share the story with me and this didn't happen at a nursing home.
Susie Singer Carter:It happened at a very, very high-end assisted living in Los Angeles and every Sunday her mom had Alzheimer's, every Sunday. So she lived like, not independently, but she had her own little place within, you know, like a little tiny, like her own apartment, and it was the beginning of her diagnosis. So every Sunday they had a standing date to have dinner with the family. They would go and pick her up and this one week she would hear from her mom, like every day, but she didn't hear from her for the last Friday and Saturday and she was a little but she was working, my friend was working as a director, so she was like with her long hours. So she didn't think, well, mom's probably got busy, maybe she's doing some social whatever. And Sunday came around and they went to pick her up and when they got to her door there was all these newspapers piled up at the front of the door a couple days' worth of newspapers.
Susie Singer Carter:And when she went in, her mom was lying naked on the ground in her own excrement. And, um, she wasn't dead, she didn't die, but it was clear that she had been late. She couldn't get back up, that she had been laying there for at least over 24 hours. Nobody checked on her. She didn't come to dinner. Nobody checked on her.
Susie Singer Carter:And, and you know, and I said to her, what did you do? She said well, we were devastated. We went talk to the administration. She said but, susie, there was no place else to take her. This was the best place and that's what's so scary, you know, and that you know. So I say that as a cautionary tale because it's it's not exactly eloping, but the point is that people aren't watching your loved one, so you, and when you assume they are, you can't do that because you just can't, unfortunately. So you need to check in. If you're not, if you can't be there every day and of course of course not you can't At least check in. And if you can't get a hold of them, have somebody go over to their room and assure you that they're okay, because those are devastating consequences, if there can be.
Speaker 5:Oh, absolutely For sure, but I'm very grateful Don and I were talking before we started the podcast about. You know how far things are a lot further along than that experience I had 31 years ago. Then in 31 years from now, things are going to be a lot further along than what they are now. But we do live in an age where where technology, I really believe, can solve a lot of the distant supervision type of situations related to specifically in a facility or in somebody's home, related to ensuring some eyes on or some other remote monitoring techniques to be able to see, number one, that somebody is at home. Number two, that behavior is normal. Number three, that they haven't walked out of the building. And so I'm extremely grateful for that opportunity and for those opportunities to come about now, because it does absolutely radically change your ability as a caregiver to have extra eyes on a person without being there but we face a challenge also as far as cameras like, especially if it's a facility, because some facilities will say, oh no, you're not putting the camera in this, they don't want cameras I think she's talking about other technology you're talking about at home, at home, yeah, but
Speaker 5:no, no, I'm talking about technology that is not camera-based.
Susie Singer Carter:Right, you know. What it brings to mind, Camila, is that we're watching this series called Sunny, which is in the future, and it's what's her name, Don.
Don Priess:Rashida Jones, rashida Jones, rashida Jones.
Susie Singer Carter:And it's where you know everybody has these robots that are their assistants, basically, and that's what I think of when you say that to me, because it's like a human companion.
Speaker 5:Well, these are a little different though this technology. They use motion sensors and humidity, want to make sure that they're opening the fridge right, and so it's connected to your cell phone. But in a facility-based place you can put those sensors on beds to know if somebody's in the bed or on the door, to know whether the door has been opened or closed. Then you can track staff coming in. There are ways to track people without cameras and there are ways to track people without cameras, and so that's exciting technology from a facility-based care, because, yes, I agree, dawn, facilities do not want you to have cameras in there, because they don't want you to see what's happening to now use other type of technology that can help track behavior but not actually show the person. So you know, inside the apartment the example that you were using related to your friend who's mom in the assisted living facility they now make lamps for like a you know a lamp, just a regular lamp that have velocity monitors in that can see whether somebody's fallen in the room.
Speaker 5:Oh, wow, that's so there is knowledge there's technology coming out that I you truly believe can help be an invisible caregiver to people with dementia at home, keep them at home a little bit longer. Afford family members of people who, by necessity or whatever reason, do need to be in a facility, because you know, some people really are difficult if you're alone to manage because of behavior. But there are other ways that we can help monitor and supervise without being there, by using technology.
Don Priess:But those could also be used in facilities, meaning if that lamp was in everyone's room, then the staff knows if something happened. It's a simple way that if they are understaffed and they don't have the time for someone to come in and check in on them, that at least there's some sort of notification something has happened and that could help even until we solve our staffing issues, which is what we're trying to do all of our staffing issues, which is what we're trying to do.
Speaker 5:And even if the facility doesn't want to provide a lamp like that, you know a family member, a family caregiver, could certainly get a lamp, put it in the room, have the notification come to them and be, all you know, bad. Out of hell if something happens and contact the facility.
Don Priess:Yeah, if someone will answer the phone when you call or call 9-1-1 yeah, no, exactly, exactly, because my mom, my mom's my mom's an assisted living and she has both from the facility.
Don Priess:They have a you know where she can call them. Of course, if you're not conscious you can't do that, but she also has a pendant that if they'll know if something happens, it's it's to an outside you know service and they'll know if she's fallen or something. So you know, yeah, there is that technology, but then you're still relying on them wearing it and that's that's the challenge and sometimes they won't wear it right, like my mother right yep, yep. So, by the way, where is nancy? Where is nancy? Is the documentary?
Susie Singer Carter:that's called. Where is?
Don Priess:nancy yeah and it does definitely cover this, this topic, and she, you know she eloped from a public place, right?
Speaker 5:so uh which back to my my cruise example. Right after the cruise, maybe a couple months after the cruise and I need to go look this up, I keep meaning to go look this up there was a husband and a wife combination. Now on the cruise that I went, we were one staff member to three people and not three people with dementia three people. So there were people with dementia and their family members. We were almost one-on-one with the people living with dementia three people. So there were people with dementia and their family members. We were almost one-on-one with the people living with dementia. So we had like nine or ten staff members and there were nine or ten people with dementia on the cruise. We were a group of over 31 people but we were almost able to be one-on-one with the people living with dementia.
Speaker 5:But this was a husband and a wife combination who had gone on a cruise by themselves in Mexico and did you guys hear this story? It's been within the last couple of months, um, and they came off of the the ship and when they got through the port on the like on the dock or wherever both of them went into the restroom and he was newly, newly, newly diagnosed with frontotemporal dementia and when she came out. He had come out before her and took off in mexico and they, at the time that I stopped looking it up, it had been several days and they hadn't found it. So you know, and she had a tracking device. She did have some sort of a tracking device, but it was attached to her cell phone and had to be within a certain radius of her phone.
Speaker 5:So the moment you left that radius's gone. Yeah, you know, but we, you know, we've been talking about some high-tech stuff. Here's a low-tech strategy for families at home. Okay, um, a police officer taught us, take a dry washcloth not a wet one, a dry washcloth and rub it on the person's neck um, get scent. You know, get some of the oils on the body, put it in a plastic bag and put it in the freezer. And if the person does walk away from home, we have the ability, using tracking dogs, to take that person's because then it's just their scent and, specifically from home, be able to try to track them wow, that's a great tip that's, that's yeah I mean
Speaker 5:because, even, even for, even for the gentleman whose wife had wandered away from a situation like that, if, if they had a way of having her scent yes, even if he had to go home and get it they, they might have had an opportunity using tracking dogs to see if they could pick her scent again. But of course we because we don't necessarily keep, you know, dirty clothes, things in the house we don't necessarily have that, but it is another way of being able to locate somebody if there is the opportunity to use canine dogs, but then it has to be an isolated scent.
Susie Singer Carter:Wow, that's an amazing tip. I wouldn't have thought of that. I mean, I wouldn't have known that they would do that. It's amazing.
Don Priess:We'll be right back.
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Susie Singer Carter:You know I was talking to one of our other doctors who was yet we interviewed for no country for old people, um al power, who is a geriatrician, but he speaks all around the world on and he's really focused on dementia and you know, and he talks about the locked door, you know, in in facilities and how you know they in, in, in. Of course he's a big fan of the green greenhouse model, which is, you know, in facilities and how you know they, and of course he's a big fan of the green greenhouse model, which is, you know, very much, you know, person-centered. It's very different than the facilities that are in use now. There are very few greenhouse models out there because the government doesn't, you know, subsidize it. But you know, in their trials they found that the facilities that they didn't lock doors, less people wanted to leave. And there is something about the dignity of a lock, you know, or the indignity of a locked door that makes people want to get out because they feel incarcerated.
Susie Singer Carter:And I know my mother did. My mother was, you know, until I got her into a facility. That was the whole facility was memory care, so there was not one specific area. She was and I took her out of the other place. She was so unhappy because she hadn't hurt. She kept forgetting, like, why was it locked, and why is she trapped in here and why and it? And they really, really made her want to get out, and and I, you know, and I think that that's something that you know, that's just the philosophy and things that, in the future, that we need to think about when we think about people with. Don't you agree?
Speaker 5:Oh, absolutely. I remember here in South Carolina once I went to an assisted living facility memory care assisted living facility and when I came into the building the locked unit I just stood there a minute and I'm like you all have a lot of people try to get out and they're like, yeah, I'm like I totally get it. You know the way it was structured. They had like a big exit sign and the door was locked and it was very institutional and it was one of those push bars that you just exactly know what to do when you get up to it. Even if there's nothing you know, if you're really not even thinking, well, you just have to push it and it doesn't open and then it makes an alarm and they had people constantly trying to leave the facility. That I do think that technology like these remote sensors and things that I have explained to you can be used in a locked unit and even greater, in a community, because there are ways of setting them up that they have barriers, like a boundary, and the person can have a geotag Right a boundary, and the person can have a geotag and then if they get beyond that boundary, you know that you need to be able to locate them. So there are. I think I 100% agree with you that over time locked units are going to be less. But at home, you know, there is a true, real concern at home for somebody walking away from home. They make slider locks for the top of the door that you can. You know a person with dementia won't look up or down, they'll just look kind of right in front of them so they'll see the door handle. But you can put a slider lock on the top that you can open and close manually from both inside and outside, so the door isn't locked per se. You know they can turn the handle, they just cannot open the door. You can put, you know, magnetic monitors on the door just so you can hear the door opening. So you, you have an early warning system.
Speaker 5:But I recently had a. I have a person that I work with in in my coaching community and his wife is an exit seeker. She tries to walk out of the house all the time and one of the strategies that we used in their house was to and this is what is also used, sometimes successfully, just depending on the facility is is making the door not look like a door and the way we did this in their house was I suggested to him to look and see if he could find a shower curtain that looked like a bookshelf because a bookshelf is something that's normal in our house. We're not bringing something in that doesn't look like the house and he put the bookshelf up over the door. Um, he had. He'd already put deadbolts on so that he would have to use a key, like an actual key, to open the door, but she would always go to the door and was literally frustrated. Yeah, right, and so by just putting this, this shower curtain that looked like a bookshelf, it stopped that behavior in that specific spot because she would see it and she would at least have somewhat of a recognition. Now, this isn't a door, right, and it looks like a bookshelf, and she'd turn around and walk away.
Speaker 5:Other things and this is kind of funny because we were talking about AI earlier AI can really be beneficial for certain things, but totally off base for other stuff. And I was playing around with AI the other day and talking about wandering and wandering behaviors and it said you know, put, put the word stop on the door, and I'm like that's the worst thing you can put on the door of a place. Don't ever put the for anybody listening if you want somebody to not walk through a door. Don't put the word stop on the door Right, because what do we do when we see a stop sign?
Don Priess:Right, right, we stop, and then we go, and then we go Right.
Speaker 5:Right, yeah, don't put stop on the door like wrong way or employees only or out of order or something that is logical. People with dementia can still read up to a very late point in their journey and understand certain things, specifically very routine and familiar stuff like a wrong way sign anything, anything that we would be very familiar with, to clue them or cue them to not try to go through that door. You know, danger, hazard.
Don Priess:Yeah, do you think that? Is there any possibility of putting somebody with a room that now doesn't feel like it has a door or a way out? Would that cause any type of negative anxiety?
Speaker 5:I think you know I'm kind of with Susie on this one. You put me in a room where I don't think I can get out. I'm going to freak out.
Don Priess:Right, that's what I was worrying. If they were in a room that said, wait, there is no door here, would that cause?
Speaker 5:it? Would it create that? Whether I think it depends on how far advanced a person's dementia would be, um whether they would actually notice it or not, because at a certain point, um, I don't think a person would notice it at the very, very end yeah, I want to say, like with my mom when she lived with me that year.
Susie Singer Carter:She was very active and she, I say she was straddling the fence of like knowing she was losing her cognitive abilities and fighting it like hell right. And so I think that at that stage and before is when it's the hardest because my mom would go logically, if I look back at it, she would say what do you? So how do I get out of here? Then where's the door? Where's the door to get out of here? She would be searching for the door if it said don't go out this way. But I think you're right. Once my mom got past that stage, because she still could read, that would have.
Speaker 5:That would have sufficed right, yeah, there's, there's this window right when, when, when everything is like a perfect storm, the, you know, at the beginning stages you can I don't teach people to reason with somebody who has a diagnosis of dementia, because I'm teaching them not that over time they're not going to be able to reason, but at the beginning you can still reason through something and they can understand. And then the end section when we get to that phase it really doesn't matter. They're not going to be necessarily like your mom trying to, you know, leave as much. But that middle section, when, when the person truly does, or a lot of people do, have an awareness something's not right. I'm not the way I always used to be.
Speaker 5:Um, I think that's when, when, when it's the hardest is like that very, very middle stage. Um, when people truly, and they're, and at that very, very middle stage, when people truly and at that stage oftentimes very mobile, still Very mobile, they move really well and cannot think and reason through those kinds of challenging situations, and that's when it's significantly unsafe, because also at that time safe, because also at that time a lot of families are not recognizing that the person is, um, at that point that that that is so important that, because they, they are very good at fooling you and, like you know, when my mom lived with me, most people didn't even know she had alzheimer's until it took a little while for them to go.
Susie Singer Carter:is your mom and I'd say, yes, she has Alzheimer's, because my mom could fake it real good, right. And so, especially if they're very social and my mom had her tricks up her, she had the tricks of her trade, you know she would start singing to them if she didn't remember their name. Of course I remember you.
Susie Singer Carter:You are so beautiful to me she would do those tricks and people didn't know. People would think she was just charming and so it takes time. So if you're out on the street and you're roaming and people wouldn't even think I mean, my mom was such a social butterfly.
Speaker 5:She'd be making friends along the way and they wouldn't know that she was lost. Buckets of contention is families who are not willing to accept the responsibility of taking the car keys away from someone. If you're, if you're scientific part of your anatomy, your gut tells you somebody's not. If you don't want to drive in a car with your mom, your mom shouldn't be driving. If you don't want to drive in the car with your husband, your husband shouldn't be driving. If you don't want to drive in the car with your husband, your husband shouldn't be driving. If you don't want to put your grandchild in the car or the dog in the car with your family member, then they're not safe to drive, period. End of discussion. And families don't want to say that out loud for a variety of different reasons, and I understand all of them. Because I had to take the car away. It's not a fun thing.
Speaker 5:But how this ties into the elopement is there was a lady who was driving and she would always only drive to the store. You know, she's only going to church, whatever it is. Oh, mom's never gonna, she's only driving a few blocks, whatever the excuse is. Well, she took off, she took off and she was found over two hours away from home. And the only reason she was found two hours away from home was because she ran out of gas and had enough. You know, driving is so automatic. Saw the you know the gas light on and everything and pulled into a gas station and the gas station attendant recognized that she was confused and called the cops and she was two hours away from home. Who's going to find her two hours away from home?
Don Priess:And she doesn't know where home is. You know, no, yeah, I mean I just as somebody who, for both my parents, my brother and sister and I had to take the keys away, and it was. We were dreading it and we kept putting it off and putting it, and I think the tack that we took, that worked and it actually was not as bad as it was. Just like Mom, mom or dad, please do this for us. We can't sleep at night, we can't. I'm constant Every time, you know, if you get into a car, we we're so nervous for, you know, because we're worried that it's affecting us. And then the parental part of them comes out and says, okay, I'll do it for you, you know, not for myself because I can still drive, but I'll do it for you. And it really did. Now, look, I'm sure there's that that I may be simplifying it, but it was a tack that we took for both of them and it did. It was, it helped and it worked did they did done?
Speaker 5:Did they both have dementia or?
Don Priess:just they were ready to stop driving, they were read, they were well cognitively, they were having issues. They didn't really. I mean, my dad's death certificate said he had Alzheimer's. He did not. You know his, his mind just slowly, and my mom, who's still very cognitive.
Susie Singer Carter:Your mom doesn't have any.
Don Priess:Her memory's going great she does not. But they were, you know, and it may be easier when they don't, as opposed to when they're more combative and a little more in denial or don't know there's something going on with them. But but you know, I I just wanted to throw that out there. You can give that one a shot oh, absolutely.
Speaker 5:I think everybody should give it a shot. Um it it's fascinating, though. I recently um did an episode on my podcast about dementia and driving, because it comes up a lot. It's something that can be very, very unsafe. Who have no cognitive impairment, older adults who have no cognitive impairment will self-limit and take the car keys away from themselves because they recognize I can't see as well or I can't hear, or I can't turn my head. They can, they can reason through that. Somebody with dementia will not. They do not see the deficits.
Speaker 5:That's what makes it so difficult to take those car keys away.
Don Priess:I try, you know, you try as much as possible to work towards getting the car keys away through the physician and some other people. We also did have the doctor chime in and say you know, it's just really hard when they do, yeah.
Susie Singer Carter:When they have Alzheimer's or dementia, it is very difficult because they forget and they forget and they forget. So you know you could tell them all day day long, but my mom was looking for her car always, always where's my car, where's my car? And you know it's. It's very sad and it's because of that is there it is. It signifies their freedom and it's you know there's a lot attached to that. You know, ability to drive it just does. It signifies a lot and it's like I'm saying like when someone is going through Groundhog's Day and every day they wake up and go where's my car keys, where's my car keys? Which I put in my film, actually because it was such a significant part of my mother's transition. You know it was like where's my car keys all the time, where's my car? Did you steal my car? You know that was a big theme, a very big theme, and so it is. It can be really devastating.
Speaker 5:So it's yeah, yeah but it ties in with the elopement, because we don't think about somebody eloping with their car, right, right. I have another example of somebody that I was aware of mom and daughter. The daughter had taken the car away from mom, but it was mom's car. Daughter had taken the car away from mom, but it was mom's car, and the daughter and mom went to the same doctor. So the primary care physician was both of their doctors. So mom came with the daughter to the doctor's office and her daughter left her mom in the waiting area because she was going in to see the doctor, thinking that mom would be safe there. You know, mom forgot why they were there, forgot that the daughter was in seeing the doctor, dug through her purse, found another set of car keys, walked out, found her car and drove home and left her daughter at the doctor, you know. So these, these situations, truly, we cannot make this stuff up, yeah no, no, what about?
Don Priess:yeah, I mean, we know facilities who are definitely understaffed are using chemical restraints to help to stop people from doing this, which we know is just horrendous. It it's the worst, especially with people with dementia. It's just horrible. And people, might you know, do you find that? Or have you heard of doctors prescribing people who are at home Like, oh, they'll prescribe something to kind of chemically tether them, and if so, if a doctor does that, what should you tell them?
Speaker 5:I haven't run into that as much at home. It's definitely more in a facility. For sure, usually, in my experience, when we get to that level of drug medication at home, there are significant behaviors involved and it's more than exit seeking, it's aggression. You know, it's those things that really make it difficult to provide care for somebody at home. Oftentimes it is that anger and that the person, the care partner, the caregiver is not feeling safe or there's a lot of that physical, like some people with dementia get extremely, extremely aggressive, and so that's when I tend to see those heavy duty medications at home.
Speaker 5:I am not a proponent, I'm not a proponent for medication to be the first line of defense, because I believe that I really do believe that using looking at what's going on with the person and what's going on in the environment and seeing if they're bored or overstimulated or what's going on with me, the care partner because if I'm super stressed and I come in there, mom's going to be wild and woolly right using using other techniques first to see if we can mitigate or change the behavior that we're seeing.
Speaker 5:But sometimes the only thing that does help is medication, but it's not my first line of defense, but at home. Typically the medications that are prescribed at home are Seroquel, which is a heavy duty antipsychotic, which oftentimes you'll find in a facility, but they tend to be provided at a much lower dosage than in a facility and I don't remember ever seeing somebody on halidol at home, which is a chemical restraint as much as being on halidol in a facility, and I believe that if I have seen that they were transitioning over to hospice. So there may be a reason for using some of those medications at end of life in order to be able to keep them at home, but I don't personally have I haven't experienced as much of that type of medication and chemical restraint at home.
Susie Singer Carter:You bring up a good point because we have to wrap up. I can't believe we've been talking so long, such a great conversation. But you bring up a good point about the medication at home, because my mom was, you know, a victim of Depakote, which is also, you know, an off-market drug to chemically restrain. An off-market drug to chemically restrain. And all those drugs, when you see them in a facility, they bring on sombolence, which is basically just everybody is zombies. When you see zombies, that's what you're looking at, because that's not a natural state of mind is to be a zombie in a chair. And so you know but I didn't know that when I first was getting used, that when I first was, you know, getting used to this kind of community, I had no idea that that was what was going on. I just thought that was the nature of getting older. But it's not, it's not.
Susie Singer Carter:And so I do think that there's, you know, dosages that you could do with something. You know if someone is agitated, that you could do with something. You know if someone is agitated and if they're agitated and you've tried everything, then maybe you know there's something that will. It's like taking a, you know an, antidepressant, right? So something that but mild, like, because I don't think you need to knock, it's either all or nothing. It feels like you know, in our industry, as opposed to you know like one size fits all and that's not, that's not, that doesn't make any sense. You know we're not one size fits all, so you know either they're awake or they're out. But there's a reason that these drugs exist and it wasn't for that. It wasn't to put people out, it was to help them get through a difficult time.
Susie Singer Carter:So I think you know what I'm trying to do is, you know, mitigate the shame, because I listen, I don't my mom was a victim of depakote. She shouldn't have been on it. There was no reason for her to be on depakote, it was just used because my mom was, anything but, you know, aggressive. You know she wasn't an aggressive person, right and but you know, until I didn't know, and that really changed the quality of her life because she ended up being, you know, immobile after that, once I found out, she never lost, she never, she never regained her mobility. So you know that that that's a tragic outcome and she could have died. Because they're black labeled drugs for people with Alzheimer's.
Susie Singer Carter:So, but I also think like you shouldn't feel guilty if you are at home and you need some assistance because somebody's chemistry is, you know, off balance because of what's going on cognitively, certainly you know you. You should look into that and find out what is the minimum you can use to help and see if it helps and try different, different kinds of drugs. You know, maybe, maybe you know cerco isn't good for your loved one, maybe at aivan, I don't know something, you know I used to get panic attacks and I would get Ativan and you know it would take it away, like that and I was back to normal, you know, and so you never know like what works and I'm not, I never overused it, it was just a safety for me. It was like if I got a panic attack then it would help, you know. So I think that there's just saying don't feel guilty if you have to right.
Speaker 5:Right? Yes, I think, a measured approach. Like I said, I'm not a proponent of medication as a first line of defense. Let's look for all of the other solutions first and then, if there's nothing else that's working, then let's start to explore some of the medication, whereas the industry's standard is oh, let's medicate first.
Susie Singer Carter:And when they say medicate, they mean medicate with a capital M. Yeah, for sure, john. I know what it makes me think of when my mom was at the memory care the place that it was all memory care and we'd all go and visit my mom and there'd be some of the residents who'd come by and just clopped on in the head. Remember the woman that just for some reason she just gave you a smack at the back of your head. Every time it was just like.
Don Priess:She's just you know.
Susie Singer Carter:He has that kind of head. I do.
Don Priess:It's very hittable. It's very hittable.
Susie Singer Carter:It's very hittable. She wanted his attention or something, so every time she'd go it's actually kind of cute.
Don Priess:I said will you please put her on medication right now?
Susie Singer Carter:Right now, but it was really. You know, you're right. That's exactly right. Lizette is that she wanted Don's attention? That's what it was, that's exactly right, lizette is that she wanted Dawn's attention.
Don Priess:That's what it was. That's how she communicated.
Susie Singer Carter:And that was how she communicated. I had one gentleman that was always yelling at me from across the room Young lady, young lady, young lady, young lady Remember Dawn? And so I finally went over to him and I was like, because I was getting used to the community, I wasn't a pro yet, right. So I finally went over to him and I said what can I do for you, what can we do? How are you today? And he goes I love you. I go, I love you too. Tell me about yourself, you know. So he needed attention, but you know so he needed attention.
Speaker 5:But if you don't know that, you're going to think, wow, he's so, he's mean, or he's nasty, or he's you know, he's so loud.
Don Priess:right Repetitive behaviors, let's give him some medication, right Right, he's annoying, let's calm him down, so he's not an annoyance. And usually that again comes back to understaffing and not enough people to deal with that. Comes back to understaffing, not enough people to deal with that.
Speaker 5:So now Susie is. You know, susie has. He's doing that to Susie, but when Susie's not there, he's saying that to the staff members, right, all day, every day. Young lady, young lady, young lady, right, and it's driving them crazy. And so they will give him medication instead of attention, right?
Don Priess:Instead of just coming over and saying what can I do for you taking minutes to say yeah to, to pay attention and because I think most of us be the ones that are yelling. Those are bits like and, and it goes on and on and on we hear it down down the hall somebody yelling and yelling and yelling. The entire time. We were there, you know, because nobody went in and said yes.
Susie Singer Carter:Hi, hello, I love your dress.
Don Priess:I love your hair.
Susie Singer Carter:I mean, I learned to do that, right, I learned to do that. I love your, I love what you're wearing today. Really, yes, I do. Oh, it's beautiful, you look beautiful and they're like oh, thank you you. Oh, it's beautiful, you look beautiful and they're like, oh, thank you. You know who doesn't like to be complimented, and so I do, you know. So I just try to, you know, be a human being. That's all the rational goes and the emotional stays.
Susie Singer Carter:Totally Well. This was so lovely. Thank you so much for sharing. It was fun. Well, you're fun. You're strong but soft at the same time. That's what I love about you, because you have a nice heart. You have a very good heart. We need more of you in the industry.
Speaker 5:Well, for sure, you know, coming from South Africa, we definitely can have some bluster, you know, but soft squishy on the inside.
Don Priess:Softies at heart.
Susie Singer Carter:And I knew that about you. I know that. I knew that from the second I met you. I really like you. Thank you so much. We will have all of Lizette's information on the show notes. Go and listen to her podcast, which is totally different because it comes from a different perspective. She's in there, she's in the trenches with a lot more people than I have ever been. So you know, please, do you know, tell us what the name of your podcast is again and where we can find it.
Speaker 5:So the original name was Dementia Caregiving for Families and then recently I changed it to Christian Dementia Caregiving. Okay, mostly because I answer my questions from a Christian perspective, I blend the evidence-based practices from a biblical lens so people can still come and listen. Not all of them are entirely, you know, from a Christian perspective. I just started a whole series on five quick tips for challenging different challenging behaviors, but it is.
Speaker 5:It is good information and really honestly, one of the biggest things that I've noticed that makes a successful caregiver versus an unsuccessful caregiver is what we think about. It is what we think about our own journey, what we think about dementia in particular, and so I really work with people a lot on how you think about dementia. What do you believe it to be? Because as long as we continue this tragedy narrative that it is all doom and gloom and woe is me then that is the result that we get, and so I really work with people very hard on what is it that you're thinking about, your dementia caregiving journey? Because what you're thinking about it, it will be the result that you get.
Don Priess:You manifest it.
Susie Singer Carter:Right, right, right, Yep, Absolutely. Well, let's bring it all home, John, because what do we?
Don Priess:you know Well it just feels like everything in the long run, you know, it's a combination of faith and science, and then, in the long run, it's a combination of faith and science, and then, in the long run, it's love. It all has to be based in love and there is only one reason for that, and that is because love is powerful, love is contagious and love conquers all. We thank everyone for watching, listening today. If you like what you saw or heard, please share and follow and do all those good things, and we'll be seeing you next time.
Susie Singer Carter:Yes, and check out NoCountryForOldPeoplecom and see how you can help us with this project and with the movement that we're doing. We really appreciate it and, yeah, love you. Talk to you soon.
Don Priess:See you next time. Take care, bye-bye.
Susie Singer Carter:Bye-bye.