Safe Spaces for People Living With Dementia

Detroit Tour And Safe Spaces

SPEAKER_06 0:00

Hey Parenting Up Family, it's June, Brain Health Awareness Month. We're back on tour in Detroit, partnering with Wayne State University's GWP, funded by the agreed initiative for a second consecutive year. Exhilarating, yes, it is. This three-episode series focuses on understanding dementia because it's confusing. We're using plain language and real examples. What the symptoms look like, what living with dementia looks like, the importance of early detection, and more. Get ready to learn and laugh. Hey parents and family, we are back in Detroit. Today we are digging into is there anywhere that people who are living with dementia can go and feel safe and be safe? Like public places, public spaces, not just home, not just a neighbor's house, but can really go commune, get some coffee, go to a movie theater. Are there places like that right now where people can just be safely? Yeah. We found some and we're about to talk about it. Safe spaces for people living with dementia. Parenting up Caregiving Adventures with comedian Jay Smiles is the intense journey of unexpectedly being fully responsible for my mama. For over a decade, I've been chipping away at the unknown, advocating for her, and pushing Alzheimer's awareness on anyone in anything with a heartbeat. Caregiver newbie, OG, and village members just willing to prop up for Caregivers. You are in the right place.

SPEAKER_08 1:53

Ah, this is really. I hope you enjoy my daughter's podcast.

SPEAKER_06 2:08

Today's supporters shout out comes from Facebook, Katrina Parker. I wish they had one in Alabama. That's referring to via Tiger Center that is actually in Augusta, Georgia. I wish they had one everywhere. Let's keep pushing, let's keep talking, let's keep raising awareness about dementia. If you want to be the recipient of a supporter shout out, you know what to do. Leave a comment and a review on Apple Podcasts or YouTube. We're Parenting Up Everywhere. Today's episode: Safe Spaces for People Living with Dementia. Hey everybody, we are back in Detroit. Parenting Up is back in Detroit. That's why I got Sparkles on. You know, you're gonna come to Detroit, you already gotta show up and show out. So hopefully I have done both. Today we are getting into where can people who have been diagnosed with dementia go? Like public places, safe spaces where they can commune and be social, or their family members don't have to worry about whether they will be received well. And I got some experts right here from Detroit that are gonna let us know where those spaces are. Hello. Hello, how you doing? How are you? I'm great. Now, what's extra exciting is a couple of Debras up here. Yes. All right, we don't even have to hold your hand up yet. We got a couple of Debras. We got a Ruthie and we got a Lucia. Lorisi. Lu Resey. And we got a Lu Rese. That's what I get for going off the cuff. But that makes the conversation better. Yes. Okay. You're associated with the Alzheimer's Association of Metro Detroit. Absolutely. And you all are associated with Hartford Memorial Baptist Church. Did I say that right? Yes. Okay, now that's okay. Because the church's name, you will get in trouble if you put the thing out of order. I learned that. I'm from Montgomery, Alabama. It was like, if it's Missionary Baptist Church, you can't say Baptist Missionary Raptors.

SPEAKER_07 4:21

Like, what are you talking about?

SPEAKER_06 4:23

So thank you all so much for being here. Pleasure. And congratulations on doing such great work within the community that it was suggested that we have you here on the podcast, especially talking about safe spaces for people to go. That's such a big deal. Share with me how you feel the Alzheimer's Association is addressing that.

SPEAKER_00 4:49

Oh. We have so many available resources. People don't even know how many resources we have. That's why our mission is to get out in front of people and let them know they're not alone on this journey. We have an 800 number, 272-3900, available 24 hours a day, seven days a week. And it's a

Alzheimer's Association Tools That Help

SPEAKER_00 5:10

real person that's going to pick up that phone. Master clinicians that are going to answer a question at 237 in the morning, no matter what it is, and make people feel that they're connected. We also have support groups. We have virtual and we have in-person. It's starting in September, we're going to have a virtual support group that you can dial into. It'll start on the second Monday of the month. And this is for anyone just dialing in, you don't have to worry about who's going to stay with my loved one. They can carve out some private time to join in. And then we have our face-to-face. And what's really fun is that we can offer two support groups at one time. In one room, we'll have the early stage individuals that are just newly diagnosed. And they get to be with their peers and grouse if they want about why can't I drive the car anymore? Or is a good one. Or just share, share their journey and some of their challenges and frustrations. And then in the other room, you've got your care partners and your caregivers who are also struggling with the changes in their loved one. So simultaneously, we can use the same time, just different space. And that one will be starting. Oh, that's ongoing, excuse me. That's in Birmingham, Michigan. Okay. And that is the second Tuesday and the fourth Thursday of the month. Don't forget our ALZ.org. I mean, we've got a website that you can spend days on. It's alz.org. And then when you put the slash in there and you type in resources or support group or education, it's going to take you right to those particular resources. I love it. Easy peasy for fun.

SPEAKER_06 6:45

Slash thank you. That's what I would say. Slash thank you for all of this stuff. And I bet you if I call it 238, they'll still answer, right? You said 237. Any anytime. Anytime that you call. That is um that is fantastic. And I would imagine being a part of your dementia outreach ministry, you have also seen and heard the difference between what the care partners are going through versus what people living with new diagnoses are going through. So share that with us.

SPEAKER_03 7:16

Yeah, well, we initially what we're working on is helping people to understand the symptoms of dementia and the stages of dementia. And like I said, we've been involved on um this ministry for the last couple of years. We're part of a magnificent organization called Alter.

SPEAKER_06 7:38

And um so we I would like to say that that's based out of Atlanta, Georgia. Yes. Yes, it is. With Dr. Feyeron Epps. Yes. Yes, I was able to, I actually did the opening uh comedy show for the most recent um summit.

SPEAKER_03 7:56

So she does great work. Yes. Yes. We uh we have been to uh two summits, we're two years old with this organization. And what they've helped us to do is what they have indicated their goal is, is to make churches more dementia friendly. Because uh in the African American community, uh uh and you know, they're focusing on uh African American faith-based um uh communities, um, sometimes it's a stigma. So you gotta make sure that we don't go overboard with the denial uh and you can't do anything to really help. So our goal is to continue with um early detection and move on into um the the various stages. We provide a lot of information, and and my colleagues will be telling you about some of our other um activities that we've been doing.

SPEAKER_06 8:52

I love it. I love it. Um well one thing it sounds like is anybody in Detroit, you got what you need. Like you now you may not know where it is, but we're what we're gonna do is chip away at whatever wall might be between the resources and the community, because the resources are here, people are ready to serve and to support you. Now, share with me some of the places or spaces that your church community has made it safe for people with dementia or their care partners to go.

SPEAKER_04 9:27

So the first thing we've done is we've made sure that we provided the space for them to do it. Um we started with a dementia conference uh in March of 2025.

SPEAKER_02 9:42

Okay.

SPEAKER_04 9:42

And it was a wonderful event attended by uh a hundred or more people. And what we did is we just put the idea in their mind about what was dementia, what the different types of dementia are, the different resources that are available for those those things. And then for and we also worked with the Alzheimer's Association in the conjunction with that, and we uh just provided uh uh an an atmosphere that made it comfortable to talk about dementia. And I we showed a video and pe people were taking notes like they were in a class.

SPEAKER_06 10:22

That's interesting.

SPEAKER_04 10:22

Just try yes, trying to get the information.

SPEAKER_06 10:24

Sometimes people don't take notes when they in class.

SPEAKER_03 10:27

Yes, that's right. That's right. A lot of them were men taking notes.

SPEAKER_04 10:32

Yes, real men taking notes.

SPEAKER_06 10:34

Okay. So well now were the men were were they the care partners or the person with dementia?

SPEAKER_04 10:40

There's mostly care partners that are there, and then there are some uh and Ruthie will talk about that one a later one that we did that focused on caregivers. Okay. But we we we were just at that point just getting the idea there that there's a lot of resources for people who need care, and there's a lot of people resources for people who give care. So the most important thing was that we shared the information and started loosening the gap and saying this too can be handled, and we all are in this together.

SPEAKER_06 11:16

I love it. I love it. And thank you. I'm gonna be thanking you throughout this entire conversation because I am a caregiver slash care partner. My mom is in year 15 with two forms of dementia. I'm an only child, we live together, or like all of my girlfriends in the college like to tell me, I live with her because she's your mom. It doesn't matter whose house it was or who's paying the bills. If you all live together, Jay, you're in your mom's house. And I was like, I mean, cool. My mama doesn't know what I'm saying right now, but if it'll make you all feel better, I'll say I'm live. So thank you for making it better. I feel like once a caregiver, always a caregiver. And though I might not be based in Detroit, knowing that my Detroit brethren and sister are getting the support that they need makes makes me feel really good about that. So this is something I hear a bunch. And I want to know if you all have been faced with this in your community. I'm afraid to take as a care partner, or if someone new with dementia. I'm afraid to go to the mall. I'm afraid to go to church. I'm even afraid to go to the doctor's office. I'm afraid I'm gonna get lost. Or as the care partner, I'm gonna be I'm afraid about getting embarrassed. Like what if my person who has dementia goes to the bathroom on themselves? Or if they just start, you know, talking in a way that's maybe a little too loud, saying language that's not really appropriate. And then that makes everybody just stay home, right? Just trying to avoid what could be an embarrassing moment. Have you all heard any of that? Yes. How do you help people address it? Okay, well, we're gonna go right down the road. I would like to everybody to share their experiences.

SPEAKER_02 13:07

Okay, I'll start. Um, for the second component of our kickoff, we uh, well, at the initial kickoff, we did questions and answers, and we also did evaluations so that we could try to address what the needs of the community, what their needs are and were, and we did that, and to follow up with that, we resourced um Jim Manji, who's from Celine, Michigan. He was a caregiver for his wife, I think 17 years. 17 years, and he went through all of many of those components that you were talking about. So when we did the discussion group specifically to try to meet the community, to meet their needs for what they needed to know about those things, he addressed those

Churches Making Room For Dementia

SPEAKER_02 14:05

things. And it went, I thought, we thought, very, very well, so well that he also invited them to come to Celine if they needed follow-up, or he would come back to the communities to address those uh safe spaces for the individuals.

SPEAKER_06 14:25

Okay.

SPEAKER_04 14:26

And one of the ladies that attended uh that particular meeting, it was really for caregivers, but it was a person who actually had dementia herself. And you could see her sitting there thinking the light was turned on for her. That she was able to really feel like what she was relating to. So it was kind of gratifying to have that kind of interchange and to have him talking about it because he was very delightful to talk about it.

SPEAKER_06 14:56

I bet it was. I've never actually been in a room where I saw a person with dementia seem as though the content of the conversation was really registered to be a good idea.

SPEAKER_04 15:05

And she's she's kind of functioning, but she's not really uh but but so she understands things a little bit more. Yeah. I got you.

SPEAKER_03 15:14

I'd like to say that we got uh we we were referred to Jim by Alzheimer's association. Okay. And um the that's putting it lightly, that he really got everybody interested. I mean, Jim got in the middle of the floor. I mean, he got in the middle of the floor, and I said, that's what I'm talking about. Get in the floor with it. That's what I mean. It was great. Um and he's a researcher as well. So it it did, it it did um that particular uh group discussion did what it was supposed to do. We could give them the information. Of course, we had food too. But never it accomplished what they and we were able to follow up with other kinds of food never ever hurts. No.

SPEAKER_06 16:01

I know in my entire life growing up through college, and now everything is somebody invites me somewhere. I have two questions. First, who all over there? Second, what y'all got to eat? Like you gotta answer those succinctly and with speed if you really want me to show up.

SPEAKER_00 16:19

Yeah.

SPEAKER_06 16:19

And so, um, what about you, Deborah?

SPEAKER_00 16:21

Well, don't add to your feed them and they will come. Yes, absolutely. Um regarding Celine, Celine is a friend a dementia-friendly city. It is. And imagine going to a city where people are trained to receive and listen and forgive and navigate and direct. It's just a beautiful place to be. And Clarkston, Michigan

Dementia-Friendly Cities Movies Art Music

SPEAKER_00 16:45

is also becoming a dementia-friendly city. Okay, well, well, well, hold on.

SPEAKER_06 16:49

You you um see you all have a lot of information that you've just been living with and working with. Sometimes, like my grandfather would say, now, hold on, you gotta slow down. You've you know, you gotta be uh, how you say you I'm drinking through a straw at a fire hose? That's something like that. That probably messed it up. But a dementia-friendly city, please break down what that means. Okay, and how can you become a dementia-friendly city?

SPEAKER_00 17:16

Jim Manji, as as the creator of friendly dementia-friendly, Celine, has done the homework for that. He works with Imagine Theaters, and you can go and have a dementia-friendly experience in the movie theater. Let's say they're showing uh dance singing in the rain. Okay, and they may have some people come out and do a little skit, and they get everybody singing, everybody gets popcorn and a soda, and if they want to talk throughout the movie, they can. If they want to ask questions, they can. They want to get up and dance, they can. It's all okay. And that is huge to have a large corporation like Imagine Theaters embrace the concept. And when you go to an Imagined Theater, you can see on their advertising, and we have dementia-friendly theaters. Yes. I think that is amazing. But in addition to that, we've got the Detroit Institute of Arts that has art-friendly dementia tours where families and caregivers and people with dementia can go and view art in a level that art is an interpretation, whatever they see. Our Detroit Symphony Orchestra has special performances for families and those living with dementia. Those are just three really huge entities.

SPEAKER_06 18:34

That's a big deal, though. That is a big deal. Because we're talking about being in public, yes, engaging with um elements that would actually stimulate the brain and stimulate your sense of being. I know that with my mom, one of the hardest things was trying to find somewhere that she could go, that I could go with her even. I'm not trying to say drop her off somewhere. I'm like, where can we go together? And actually she enjoy herself without her getting anxious. Yes. Because in the early stages for my mom, while she may not have known, okay, I have Alzheimer's and I was diagnosed this many months ago, she knew something wasn't right. And so she, and I could always tell because she would start feeling with her hands if we were in an environment that was uncomfortable for her. Um, but I would the best I could do at that time, this is more than a decade ago, is try to take her to a Madine movie in a quiet part of town and sit in the back. And that was my version of a dementia-friendly movie situation, which was not nearly as good as what you just described. You were on the right track. Yeah, yeah. So with a dementia-friendly, whether it's a city or um a church, uh ice cream polar, whatever it is, how can individuals try to encourage their cities once they see this conversation, their cities, their churches, their movie theaters to do more to become dementia friendly.

SPEAKER_00 20:15

Reach out to the Alzheimer's Association.

SPEAKER_06 20:18

Yes. We didn't even practice that. That was so great. That was so great. We didn't even practice.

SPEAKER_03 20:23

And reach out to the faith-based communities. Yes. And the faith-based community does reach out. I've learned I'm from Lansing. Uh-huh. Um, and I was telling uh uh Deb that I was born in Arkansas. But I'm from Lansing. But when I moved to Detroit, uh an African American community, they call the church for everything. And so you get calls, especially Detroit's a whole town. Yeah. So you get calls from a lot of uh caregivers, a whole bunch of caregivers. And um, we have a lot of caregivers at our church, and all of them are dealing with dementia.

SPEAKER_06 21:02

Right. What are some of the no, go right ahead.

SPEAKER_04 21:05

And it's kind of important to because it's faith-based, there's a more tolerant level of people associated with it. So I had brought my dad to church before he passed, and he was suffering from dementia, and he just he he wanted to sit where he wanted to sit. So I he sat and moved right up to the front of the congregation, and and that was fine. Everybody just let him sit there. And that was before we even started discussing dementia, because I noticed that in a lot of the ministries now they're more dementia focused, and they pay attention to what is happening to the people in the congregation, and certain people just kind of help them, and they are more aware of um people who are suffering from some or appear to be suffering from so some. sort of dementia related activity. And they there's just just a special effort in having in learning how to deal with them.

SPEAKER_02 22:09

That is excellent. And that is excellent. Oh, I'm sorry. And also to pair it with uh my colleague, with my deacon.

SPEAKER_06 22:19

Deacon? Yeah. Wait, I gotta, wait, I gotta cross my legs and I need a delay.

SPEAKER_05 22:28

Oh my goodness. Good thing I ain't

Stigma Trust And Caregiver Survival

SPEAKER_05 22:30

cursed. I'm a curse.

SPEAKER_06 22:32

The Lord told me not to curse. Just to keep keep my mouth shut. See they talks to you all the time.

SPEAKER_02 22:38

He does. Another thing that we do for in the faith-based community is that we help our parishioners and the community to have trust to build their trust to build their trust so they will trust Alzheimer's association, trust the gym mangies in the world. That is how do you do that? How do you build the trust within your community? We build the trust through providing information following through we have pastoral care and uh after with building the information and following through with pastoral care and we have Stevens ministries that go out on a one-to-one basis. All of that helps to build the trust in the community and trust seems to have been a significant component in our community over the years because of past practices. So they didn't really trust what you're saying.

SPEAKER_06 23:40

Right. So um I'm from Alabama you don't have to tell me about not trusting we don't trust anything coming from anybody even your mama you go and ask the grandmama this mama told me is that right? And your mama in the other room saying are you are you trying to check me? No. I'm asking grandma right you know what I mean you try to get behind grandmama's apron and hide so somebody throw a shoe at you anyway I'm sorry. There was no abuse in my home bread okay already let me clarify that. And but to the point I wanted to say amen so much for you with your bringing your father and then other members of the congregation just scooching over because listen your seat is your seat at church. Yeah I was serious about that isn't I knew that when he was doing it it's like showing up at the uh it was the Little Caesar I got row two seat 10. That's my seat and I don't know how we got like that but people are very attached to their particular seat especially at church.

SPEAKER_04 24:42

And so um shudos to your more nervous about it than he was scary was something they want to it was it was very comforting they just accepted him. Agreed.

SPEAKER_03 24:55

Yeah the the other thing is um w one of the we we like as I said we've been going to Ultra for the last couple of years and one of their um uh presenters are the black dementia minds and um the first at the first um summit that we attended I will never forget first of all everybody looked like you and me okay now I now I was uh I was a caregiver for my mother I mean everybody looked like you and me they had jobs big jobs you know husbands yeah it's and you know it got kind of embarrassing because I started talking to them but anyway um you know it was wonderful but I'll never forget one of them Miriam I would never forget she said so the question was asked who in the church would you like to know other than the pastor that you have dementia and all of them said the ushers. That's right all of them said the ushers and and she even gave an example another member of the group gave an example that um due to the type of dementia that she was experiencing when the tray went through she thought it was trash so she turned it over but you see if the ushers had known they would have probably reached for the tray smiling and take it to the next person. Correct and so that was good information because we have like gobs of users.

SPEAKER_05 26:29

And uh you know highly efficient I'm not bragging go ahead and brag honey I would brag I would brag about it highly efficiently efficient it doesn't happen almost anywhere.

SPEAKER_06 26:39

You know you try to go through the drive through just to get some fries. They are not highly efficient. So um but you can be real with the ushers. Yes you can you can tell them and they'll just you know deal with it and they've already signed up to serve in in a different capacity throughout each of the um sermons if you will I'm Catholic so I was about to say Mass but anyway we have ushers too so um so that that does make a a lot of sense but I would have never thought of it that it they're almost like ground zero the ushers because they they are helping throughout um each service and they're helping people enter the church exit the church find the bathroom if somebody collapsed oh yeah that's true we've had it yeah as a result of dementia that's true and taking the medicine I'd love to add what you do with your ministry helps to reduce stigma and so much of the perception of what Alzheimer's looks like and as you said it looked like all of us.

SPEAKER_00 27:42

Yes and to put a label on it and to not be able to address a person where they are you're helping to build that right in in the spiritual base which I think is the the richest home base you can have you're commendable in what you do. I I appreciate that because the dementia minds uh and the same person Miriam she said we they said well what would you ask the church to do she said two words see us yes they don't feel seen and many caregivers don't feel seen either have you all heard that that's something that that's feedback that we get all the time you're supposed to do this ain't no big thing for you that's your mama that's your dad's your husband that's your child well what were you about to say the caregivers they lose their sense of self they they become caregivers and not individuals anymore and they become the bottom of the to-do list because it's so much output especially as a person starts to progress in their disease and we don't want that to happen you got to take care of yourself so you can take care of others so it starts with them first.

SPEAKER_06 28:54

I love it you have any suggestions on how they can take care of themselves? Oh many start with the mantra I am enough let that resonate because you have to be enough for yourself in order for you to help others um take good care of yourself really yeah keep your doctor's appointments you all are are given such rich commentary and such passionate examples I would love to hear how all of you came to care at all about dementia that community was it that you you're a caregiver is a loved one did somebody just say hey you have a really caring nurturing spirit we I sure want you to come and join my ministry. How did you all get here?

SPEAKER_03 29:45

For me I was so petrified of losing my mother okay I mean I I I'm the oldest of five and um that that that pushed me but that I did what she said the opposite of what Deb says that you're supposed to do I didn't take care of myself. Oh no I I was petrified I was at that hospital every day spending the night you know because they go through so many changes when they start getting sick behind dementia um you you just that fear I quit my job okay uh that fear of of losing someone that is the reason you're even here right um that drove me I mean that that was that drove you to get involved at your church or that drove me to it it prepared me to get involved in my church okay uh but that drove me to take care of my mother I mean literally take care of my mother.

SPEAKER_04 30:50

I understand I understand so I'm a caregiver from way back for my entire family with my mother my father my sister um so I've I've done a lot of caregiving but that's not why I do it because I just think that we as people need to help one another and learn from one another. So what I what I learned from my father he was the one who had dementia is that to kind of to be be more tolerant to be more uh progressive in my thinking about what was going to happen in dementia I've been working in the church all my life you don't remember now I don't re I don't remember a time I was not in the church but I do know that when Reverend Larisi asked if we would become a part of this dementia ministry a couple of years ago it kind of filled in a lot of gaps for me. And that's what I appreciate about it. I feel more comfortable talking to people about dementia situations. I feel more comfortable in bringing ideas and new new um information to them. So I for me it wasn't one thing that just drew me to this kind of ministry it was just the entire general concept of ministry.

SPEAKER_06 32:17

Yeah well knowledge is power we've heard that it is and it is and the more knowledge you have then the more comfortable you can be in the decisions that you make right I love it.

SPEAKER_02 32:30

Okay what drew me to I think I have thought about this over the years because I'm at the end of my journey and I think the Lord led me into a helpful workforce. Okay which I've always been a patient advocate way back even in the day when we really didn't have patient advocates so as I progressed in my spiritual growth growing maturing in my growth I also became a caregiver for my husband which was not easy but the Holy Spirit helped me to become more patient more tolerant and to endure so what happened is that I was approached by another minister to join the care a caregiving ministry Symatec at Hartford Memorial and I said no no I've got enough to do my plate is cool yeah yeah so the Holy Spirit said you will I did and when I did when I answered that then Reverend Larisi she approached me and said we're gonna start a new ministry we're gonna start dementia I thought oh it's coming around again I can't shake it yeah yeah I'm at the season of my life do I want to and then the Holy Spirit said yes you do yes you do and that has that's how I have become so involved and the Holy Spirit and the Lord it says I have given you what I want you to have so that you can dispense it to others and so that's how I I think that I uh have become a part of this ministry.

SPEAKER_03 34:47

That's part of she's a retired nurse and I don't mean any harm because nurses are unbelievable but she's a very brainy person. She is she's an extremely brainy person. And so it is got a big brain I mean she got a big brain my granddaddy would have said that's a big old brain but you have to bring it all when you come to it when you come to something that you're really passionate about just, you know, give it what you got. Give what you got.

SPEAKER_06 35:19

Give it what you got okay Deb. Well how do you you have been with the Alzheimer's Association almost two decades. I'm gonna call it 20 years.

SPEAKER_00 35:28

Sure nobody's we can round up like you Ruthie it was a calling I can't my field was in health education in health care for well seniors and then this whole side population of brain disease surfaced and I was drawn to that I wanted to know more. And so I furthered my education became an administrator for folks that needed a safe place to come and live out their journey and what a better partner than to join the Alzheimer's Association that I can get out there and share the latest and greatest information help people understand the warning signs and what how to listen how to talk what to do all the resources that we have and it feeds my soul so I'm retired as well but I love what I do.

SPEAKER_06 36:18

So thank you for asking the question hard working retirees I tell you that I'm a retiree. Well I'm gonna tell you what what are y'all people out here doing that ain't retired whooping y'all's buttons see how I changed my language okay I didn't know we had the cloth is up here the whole cloth is up here. You should have worn your cloth and let me know to act right you did a good job thank you thank you absolutely as um first of all thank you all so much for sharing your personal journey to how you got here to be so involved with dementia that's a big deal it's very intimate and sometimes it's a little hard to share so I it it means a lot to me that you felt comfortable enough in this space to let the world know just how it all unfolded um let us know a little bit about some things

When Public Outings Get Complicated

SPEAKER_06 37:20

that you've heard that makes care partners hesitant to take a loved one anywhere that to to take them out. What what have been some things that you've heard through your various training sessions or just maybe feedback from caregivers?

SPEAKER_00 37:37

I'd love to kick that off for many that maybe don't have a formal diagnosis and they're still struggling with what's actually happening you in the very early stages you have days when everything's fine and there's no hiccups and then you have these blips and it can be in a public place where they saw the candy bar and put the candy bar in their pocket and now it could be a a shoplifting incident. You know and to explain that's that's it is it's it's touchy it's real life. And to be able to encourage folks if you are concerned and you see these symptoms that start to surface a little bit more find out what they are so you can start with the research get the help that you need and help reduce the stigma. Yeah.

SPEAKER_03 38:25

And that's not easy. It's not because you have the family you have to deal with and the family's in denial and um it's not an easy thing because say a little bit more about the family being in denial I mean the family they just don't want to they just don't want to be bothered sometimes because it's a lot the the mother is not the mother that they knew or the sister that they knew or the wife that they knew. I had a minister tell me this isn't a woman that I married. Exactly and um so that's hard to to penetrate um but it's a m it's a matter of what you're driven to do and um not to get frustrated with the family I've been through all of that where you have to call and say you know are you what y'all doing? You know what I mean? And um but it's um it's a person by person situation but it is real yes because yeah you might find she eat candy they know it's not that they're not supposed to eat. Right. Pick up something that they that didn't belong to them. Right. Like um one time uh this woman that I was out with she she sat down and helped herself to somebody else's lunch you know what I'm saying that she didn't even know. And um that could be a very gracious person that just you know smiled and didn't say a word.

SPEAKER_06 40:03

That's a blessing. That was a blessing. That was an absolute blessing.

SPEAKER_02 40:08

You know there's there's quite a bit of stigma about Alzheimer's but but I must say in in my environment what I'm seeing I'm also seeing with the advent of making society more aware of the disease process and the progression of the process I'm seeing more love. Okay I really am I'm seeing more tolerance more love and you know what I think they recognize something is wrong but I'm gonna show you some love anyway that's beautiful.

SPEAKER_06 40:48

Yes that's and that's and that that gives us all hope and it reasons to be inspired.

SPEAKER_04 40:54

Yeah yeah I um recently have been helping a woman with Alzheimer's and uh she's very moody okay and so I think one of the fears is when you take someone out is whether or not they're going to actually behave. So you just kind of pray. Right you you not kinda you really pray everything is gonna go okay because we had an event uh a few days ago uh a few weeks ago where she was at the doctor's office and she thought every single person at the doctor's office was from somewhere that she lived and so she thought people were following her. So um it was it just to calm her down enough to think of what that she's not being followed just to and you can't convince a person with Alzheimer's or dementia. You just have to kind of roll with it and just say Right yes yes that is but we're gonna go in here we're gonna see this doctor anyway. But uh it's a it's it's every time it's something different so you can't do the un can't expect anything for the most part but you do something you have to be a reactionary and then you have to have the resources to know how to be reactionary. So I think it's very important we put like announcements in the bulletin for the church and um just so people be can become aware and feel like what they're experiencing is normal.

SPEAKER_06 42:28

Right. It is a new normal yes a new normal if you if you're a care partner or you are just familiar with the person who has been recently diagnosed or is living with dementia, it is a new normal. It's never going to go back to the life that you did. You're not gonna be that other person and um the point that you were making about how difficult it can be in a public setting if the person if the person that you're with you maybe you've been at a restaurant for 45 minutes

Practical Scripts For Going Outside

SPEAKER_06 43:00

and everything has gone smooth as silk. And then all of a sudden, right, they just turn the water upside down. Like it didn't just everybody's wet everywhere and they don't know what to do. One thing I started doing when I take my mom out is um I guess it's kind of like telling the usher. I tell the hostess hey I just want you to know you should probably sit us somewhere just in case something goes down we're not right beside somebody else because my mom has dementia. I'm going to manage it as best I can but can y'all take the knives we only need spoons. Take the forks too those kind of things um and that just came to me out of a little bit of common sense and a whole lot of uh bad experiences where my mama was doing stuff with the knives and the folks I was like wait wait wait give me that you know so sometimes you just gotta get out there and try it. It's okay to make mistakes hey people it's okay to make mistakes don't be so afraid that you and your loved one just stay in the house because then you both start to lose that sense of self and sense of community.

SPEAKER_03 44:05

You have to learn not to be apologetic for that just let just just let them be who they are and but know some of the things that may happen but just don't feel like you have to own that that's a big deal yes you don't have to own it's no one's fault there's nothing to apologize for yeah and don't always correct them right uh that's just enjoy them. That's right just enjoy them just enjoy them.

SPEAKER_06 44:36

And I'll add keep your sense of humor at the parenting up community we always advocate for keeping your sense of humor. And if you never had a sense of humor go get one watch it on YouTube. There's a lot of humor out there well ladies I have just enjoyed this conversation so much. Thank you for the work that you're doing tirelessly because you've already retired and y'all are out here rubbing elbows and getting work done and uh thank you thank you so very much welcome

Outside Is Open Closing Charge

SPEAKER_06 45:10

for having us thank you for having us the snuggle up hey people outside is open outside is open for those who are care partners and caregivers outside is open for people living with dementia don't stay cooped up in the house that's my takeaway don't stay cooped up in the house go to church go get your hair did okay go to the movie theater and ask your churches your small businesses around your community like hey have y'all heard about being dementa friendly? If they can have pet friendly show how to have people friendly. Thank you for tuning in I mean really really thank you so very much for tuning in whether you're watching this on YouTube or if you're listening on your favorite podcast audio platform. Either way, wherever you are subscribe come back. That's the way you're gonna know when we do something next y'all know how it is. I'm Jay Smiles I might just drop something hot in the middle of the night