Dementia Deserves Dignity: A Conversation With Pastor Jeanette

A Caregiving Supernova Introduction

SPEAKER_01 0:00

Packing up family, I am very excited because you know I sometimes you meet someone in passing and you're like wow that person has a light, an energy, a higher vibration. I hope I get to see them. And today, I'm getting to see her again. I can't wait to tell you where I met her, how I met her. But Pastor Jeanette is a supernova in the world of caregiving and caregiving support. She's based out of Chicago. She got so sick and tired of being sick and tired of what caregivers did not have that she founded her own orientation to teach people what she thinks they need to know. Okay, come on. Let's get into it. Let's talk the fact. Parenting up Caregiving Adventures with comedian J 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 any scene with a heartbeat. Caregiver newbie, OG, and village members just willing to prop up a caregiver. You are in the right place. Hi, this is Zetty. I hope you enjoy my daughter's podcast. Today's supporters shout out comes from YouTube, Bonnie Groper. I'm so sorry, my mom had it too, and it's horrible. This is in response to the episode where I was interviewed by Allz in Color to tell my story about caregiving, the journey, the depth, the community that we've created since then. Thank you so much, Bonnie. Now, if you want to be the recipient of a supporter shout out, you know what to do. YouTube or Apple Podcasts. Leave a review and a comment. We're parenting up everywhere. Today's episode, Dementia Deserves Diggon. A conversation with Pastor Jeanette. Hello.

SPEAKER_00 2:31

Hey, Pastor. Hello, how are you? I am great. I'm so happy to be here. I am excited to just be with you one more time. God is good. God is enabler.

SPEAKER_01 2:44

All the time, all the time.

Meeting Pastor Jeanette In The Green Room

SPEAKER_01 2:46

So we met originally at the altar conference with Dr. Pharon Epps. And I was actually in the green room. I was performing as a comedian during the gospel explosion. And in the green room, I was so touched by you. I couldn't even hardly finish putting my face on. I'm supposed to put on my face and my makeup, Pastor. And I listened, and you're in the corner, even though you are also there as a participant to talk at the um at altar, you were on the phone counseling a person who was having a lot of difficulty with their role as a caregiver. And it made me stop doing what I was doing and listen to the compassion. You were so kind. You were so patient. Who are you? Why did you where'd you Pastor Jeanette, how did you learn how to be that kind and patient?

SPEAKER_00 3:45

Let me tell you this. My whole focus on helping those who are struggling as caregivers came from the fact that my husband, the greatest pediatrician in the world, Dr. Robert Andrew Jordan, who is the first African-American chief resident ever at Rush Presbyterian St. Luke Hospital in Chicago, Illinois. That's a big deal. It's a big deal. It's a big deal. And I mean, he was well known in Chicago and especially in the south suburbs of Chicago, where he had thousands and thousands of patients. He was a pediatrician and he loved what he did. And the thing was, Jay, I don't understand. I did not understand at that time how this, what I have to term boad, beast of a disease, could cross our threshold in our home and attack my husband with this disease called Alzheimer's. And so for many years, I was in denial, at least from 2014 until 2016, I was in denial that this disease was actually attacking my husband's brain and picking his brain bit by bit, causing him to lose his cognitive abilities. And so I went on a journey with him as he was going through the stages of Alzheimer's. And as I was going on that journey, I realized that there were people that didn't understand what that disease was or how to care for my husband. Even though I had caregivers coming into my home from agencies, they didn't understand how to interact with him, what to do with him. And I just kind of sit back because I didn't know. Right. Who does that know it's called? But I was hoping that they were gonna come in and teach you.

SPEAKER_01 5:34

I've I've figured, well, I learned that also the hard way, Pastor, in that you can have a very equipped and very experienced home care person or home care agency. But it doesn't mean that they know about dementia and Alzheimer's. They just may know how to get someone clean, how to do their laundry or uh give them their food and their medicine and take them for a walk. And I'm like, yeah, but you can't talk to my mama like you talk to me because baby, she don't know what you're talking about. Absolutely. Now you mentioned, first of all, I love the way you broke down Boad. So we listen, that that's gonna now be a parenting up podcast world. We're gonna hashtag that all over the place. I appreciate that. Now you said in 2014, is that was he diagnosed then, or did you just see things happening?

SPEAKER_00 6:25

I I saw things happening.

SPEAKER_01 6:27

Okay.

SPEAKER_00 6:27

I saw things happening, and I didn't believe that they were happening. Uh and I I would run back in the closet and I'd say this can be happening to us. You know, my husband is an educated man, he reads all the time. He's very, very uh uh academic. Uh, I know that he cannot be forgetting that he called me five minutes ago and asked me how I'm doing, and then in the next five minutes coming back again and asking me the same thing. Right. Uh I know that. And I would bring it to his attention, and he was really, really creative at covering it up. He would say, Oh, you know, I'm preoccupied. That was his his his verbage. I'm preoccupied. You know, a doctor's preoccupied. I can forget things. Everybody forgets stuff. You like, yeah, okay, that sounds okay. Okay, babe, I got it. So I go back into the closet. But then I started to see some very strange things. Okay. Like maybe it's car keys hanging on a clothes hanger in his closet. Okay. I said, oh, that's not right. That that that's something else is going on. Uh one time I found his cell phone in the refrigerator. There's something going on. Okay. So that's when I had to take control and come out of the closet and seek help. Was he still working at that time? No, he worked up until 2017. He was very, very, I mean, the the stages, it's it's so crazy. You know, they're very, very slow. Yes. You start out in your early stage where you're still functioning. You may forget that you called me, but you could go back into the room and examine your patient and be on point with your diagnosis, be on point with your prescription, be on point. Uh, and he was on point for a long time like that. Uh, one of the things that I did notice about his cognitive decline was he could not remember his username, that he had to go into uh, you know, the computer to log in his notes. Uh he could not remember his password. And so I helped him out. I would write it out for him and tell him that it's in his wallet. And then he would call me even when he was at the hospital to try to make notes on his inpatient. And I said, maybe I put it in your wallet, just take it out. He couldn't remember that it was in his wallet. Right. So, you know, you see

Denial And The First Clear Signs

SPEAKER_00 8:40

those things. And so when I noticed all of these things happening, I began to try to read and research what I'm supposed to do? How am I supposed to get him, you know, to seek uh help because he was in denial. Yes. And so I just learned nobody could tell me.

SPEAKER_01 8:57

Had anyone else brought it to your attention that he might not quite be himself?

SPEAKER_00 9:02

Well, I'm gonna tell you this. Okay. I'm gonna tell you this little story. He was also what was called a preceptor professor in his in our practice. Okay. Uh the medical students would come to him or the nurse practitioners who were in school would come and get their clinical training from him. And so we were uh contracted with a particular medical school. And in 20, it was probably 2016, maybe that they showed up. And they says, Um, Mrs. Jordan, I just want to ask you this. Do you notice that Dr. Jordan is sometimes forgetting things? Well, you know, really, I had observed that. You had observed something. You were like, something is happening. I I observed it, but again, I was in denial. Yeah. And when that person asked me that, I says, Well, not really. I said, you know, he's preoccupied. I'm beginning to use his verbiage. I said, he's preoccupied.

SPEAKER_01 9:53

I just want everyone who's listening to this and not watching the video to know I just high five, Pastor Jeanette. She said, Well, I well, listen, he's not forgetting, but he is preoccupied. Won't we do it? Because we are here, first and foremost. We want to care for the people we love. We don't want them to do uh to be embarrassed or to feel distressed. And so, as their protectors, you say, Hey, he was preoccupied.

SPEAKER_00 10:19

He was preoccupied. So what happened was I said, okay, he may be preoccupied, but the students are saying that Dr. Jordan is forgetting. And so therefore, we're gonna have to withdraw our contract. We can't renew our contract for the upcoming year. Okay. I became insulted. Even though I became very insulted. I said, well, you can take your contract and put it somewhere else. Uh, because he's fine. Well, right. After he left, I I really had to talk to myself, you know, Jeanette, you know something is going on. So you have to do something. And that's when we began to actively pursue uh how we were going to close, even close down his practice. Okay. Because we could not allow him to continue practicing for his safety and the safety of his patient. Correct. So it was really a process from January 2017, well, the end of 2016 to June the 30th, 2017, is when we actually closed the practice down. But we're strategic. It's about 18 months. That's I'm sure that was a very tumultuous time. It it had to be, but he was still on target with his diagnosis. He was still on target with his patients. They loved him, they saw no changes in him. Whatever Dr. Jordan said was, hey, on point. Right. And so, but we had to be strategic because we could not leave the patients abandoned. Doctors cannot walk away from their patients. So we had to make sure that we found other, you know, uh facilities and physicians that they could go to and how we could gather up all of the documents and all the files and make sure that the doctors got that. So we did it. And he was given this huge, huge going away party as he retired because he was 75.

SPEAKER_01 12:03

Okay, listen. Okay, listen. That's what they said. Doc and pastor, all right. Yeah. At 75, it's time to retire anyway. Yeah. You've worked a hard for a long time. Enjoy yourself with it from the what you're describing. He really enjoyed his work. He enjoyed his patience. So to ask him to stop doing that, I'm sure that was difficult. How did he respond initially when so this contract, the hospital with the contract said, hey, we are not going to renew the contract? And how did your husband digest that?

SPEAKER_00 12:39

I didn't tell him that. One more time. Half five. I didn't tell him that. I just told him that, you know, we're cutting back on the number of uh contracts that we're accepting. Okay. Because I didn't want to hurt his feelings and I knew something was going on, so I had to be strategic and how I was going to wind this thing down. So you just said, baby, we're going to retire. We're going to retire next year. It's time for you to retire. Your 10 years passed. But he went out kicking and screaming. But did not want to do that. But I said, but you know, we need to spend our last days just enjoying life. Yeah. We could not golf every day if we want to. Okay. We could go traveling every day. So at that time, you loved him into it.

SPEAKER_01 13:23

You just loved and coerced and coaxed. No, coaxed. You loved and coaxed him into it, baby. It's it's our time. It's our time. It's our time. And so I can't, we can't be together kicking it in in Chicago, stepping and all the things. And look, on Lake Michigan on the boat, if you at work all the time. Absolutely. And you probably were the only one alive that could have ushered him through those stages so softly. I was right there. Praise God for you. Praise God for you.

SPEAKER_00 13:51

Yeah. And so even at that time, we we were knowing that he was going through this, uh, I had told him, I said, maybe you should write a book. You should write a book about your life. Yeah. Uh, and uh, because you're a little, you know, you were a little black boy from Mississippi, uh, and and and you weren't the smartest kid in school. However, because of your dedication to your family, you decided that you were gonna, you know, go back to school and uh get your undergraduate degree, and then you decided you were gonna go to medical school. You know, that's really unheard of. So you need to talk about from suspenders to stethoscope. I love it. That was the name of his book. Okay, Suspenders to Stethoscope. So it talks about his life before the disease. Although he was going through his disease when he was writing the book, but he can remember all of those things from the past. So we had um a publisher who was his authorized biographer, and she helped us uh create a beautiful story. And I'm gonna have to make sure I get you that book. Please. Because it's very, very interesting.

SPEAKER_01 14:48

I love it. And I love an alliteration from suspendus to stethoscope. If you give me an alliteration, honey, you have me at hello.

SPEAKER_00 14:57

Okay, okay. Yeah, but uh so we went on through and he came home. We retired him on June the 30th, 2017.

Retirement Becomes A Daily Battle

SPEAKER_00 15:07

Okay, July the 1st, 2017, he woke up, he went to his closet, he put on his suit, his shirt, his lab coat, and his stethoscope around his neck. Okay. Because he was going to work. Yeah. That was the beginning of the reality. For you, for me. Okay. Now I had to convince him, baby, you're retired. And then he said, Who said I was retired? He had forgotten about the big party, about the big retirement party, and all the kids had come and everybody had said farewell. He forgot about that. Oh my goodness. So quickly.

SPEAKER_01 15:47

Such a major event, and you're saying, like the next day.

SPEAKER_00 15:52

The next day.

SPEAKER_01 15:53

He said, I don't know what all that, I don't even remember that. But what I do is I go to work. I go to work. So provide for my family, take care of my community. Oh, I'm getting goosebumps. Yeah.

SPEAKER_00 16:03

But at that time, Jay, I I didn't even know what to say. I said, Boy, you know you retired. Take off that suit. Take, you know, I didn't know how to communicate with him. Okay. And so it was a tug of war on that day. But finally I got him to take off that and put on maybe a jogging suit. Let's just go for a walk or a ride. It's gonna be okay. And the next day it happened again. And so that's when I realized that I have to find out about this disease. I gotta read about this disease. I have to educate myself about this disease because I don't know what to do. I don't know what to do. I have no idea what to do. And we're arguing, and I'm arguing back with him. And I'm saying, how come you don't remember? You supposed to remember. You know we had that party. What's wrong with you? You know, all the wrong things. Correct. And I began to be depressed. I began to be anxious. I began to cry every day. Oh sobbing. I mean, I didn't think I was going to be able to make it. And then I said, you know, Jeanette, there's got to be some support groups. Uh I called one of my friends. She said, Well, you know, I heard have you heard of ever heard of the Alzheimer's Association? I said, Well, not really, but what's the number? So I called the Alzheimer's Association.

SPEAKER_01 17:12

Now, was this before he had a diagnosis that you called it?

SPEAKER_00 17:15

Before that he had the diagnosis. So you just called them. Well, a friend said. A friend said, Do you know, have you heard of the Alzheimer's? That is fortuitous. That is fortuitous. Well, not really, but give me the number because I didn't know anything about Alzheimer's. We've heard about it, but no one in my family that I knew of at that time. Right. Had it. In retrospect, I know somebody that had it, but not then I didn't realize that my grand my father had it. Okay. But I didn't realize it until after Dr. Jordan's going through this. But anyway, after I called the Alzheimer's Association and they helped me with some uh strategies on how I can help him. I didn't, I said I think he has Alzheimer's, you know. Like I don't know. I don't know, but this is some of his something is happening, and I need some help. I need to know. So they helped me with some situations. And then I began to read books. And I read, we get the research that's, oh yeah, he's got it because these are the symptoms and these are the reactions. And after that, I said, I need a support group because I need to know that I'm not in this thing all by myself. So

Calling For Help Before Diagnosis

SPEAKER_00 18:15

I went to a South Suburban Hospital in Chicago, the South Suburbs of Chicago, and joined a support group. And we were just talking that support group and we were having the same things going on, the same, you know, uh frustrations and the same reactions. And our loved ones were going through the same thing. I said, okay. So we went on and I then told my uh older daughter, I said, you know, we we got to get your dad uh definitive diagnosis because I don't know what this is, and but we don't know because he said ain't nothing wrong with him. The primary care physician that I'm talking to, now I did talk to his primary care physician about what I thought was going on. Okay. And but my husband again was so crafty, he convinced the primary care physician, man, you know our doctors are preoccupied. So he convinced his primary care physician that he was preoccupied.

SPEAKER_01 19:03

Pastor, Pastor, I right here, that is so I know it's true because it happened with my mom. My mom, my mom was uh a CPA and a forensic accountant, an expert witness. So the gift of Gab and talking around a point is what she did for a living. She was the first black woman to do that nationally with her own firm in the nation. And so I was looking at these doctors like, I don't care what she said. Listen to me. I am telling you, she's not okay. Now I didn't say that in front of my mother, but I was amazed at how many medical experts my mama pulled a wool over their eyes. I said, on three card money, if y'all met her in the street, she'd take all your money. Yeah. You wouldn't have beat it. And so I see that was happening with Dr.

SPEAKER_00 19:56

Jordan, too. He just yeah. I went to, took him to a psychiatrist, and I ended up saying the psychiatrist needed to see a psychiatrist because he wasn't listening to nothing that I say. All he wanted to do was give him some medication, and so that would just uh kind of numb what was going on. And I knew that wasn't wasn't right. And so finally, my older daughter found a uh neurological, the University of Chicago Neurological U Center. Right. And we found this wonderful physician who was over the department, she was the department head that had him to come in. I had to struggle to get him there, and I learned to be a good thing. How did you get him there? I told him we needed to go have an assessment. He and I needed as a team together, together, to make sure that you know our cognitive uh uh impairment or or that our memory was on point. So that was slick, that was slick, Pastor. That was a good angle. I learned they call when you have to tell fibs, they call that a therapeutic lie. Yeah.

SPEAKER_01 20:51

So I call him the lie of love of like I'm I'm lying because I love you. Absolutely, absolutely therapeutic lie. I like that.

SPEAKER_00 20:57

So finally he got this definitive diagnosis that he was living with Alzheimer's. Okay. Uh, you know, he never accepted it, but I knew what he was living with. And I began to study again, as I said, I took a caregiver um course. They were doing a clinical trial study on caregivers and how you should care for someone uh through Emery. Uh here. Really? Georgia. And I found it online and I enrolled and was accepted in that clinical trial study. So I was able to see what, you know, what the professionals are trying to understand as far as caregiving uh with your loved one on the uh with this disease.

SPEAKER_01 21:36

I gotta tell you, Pastor, I'm sure you've heard this before, but the angle that you took on this thing as a caregiver is atypical. You went all research on them. You went research, intellectual, educational. I want statistics, I want numbers. Absolutely. You weren't playing around. You're like, don't just hold my hand and give me some tissue. Tell me what is happening and what it is. Definitively that I can do. Well, absolutely.

SPEAKER_00 22:02

That's But then I found just what you said. The health professionals really don't know about caregiving. What does the doctor do? The doctor makes the diagnosis. The nurse, what does she do? She takes the vitals and gives the injections of the medication. And what does the CNA do or the caregiver? Like you said, she cleans you up and feeds you and do all of that. But when it comes to that bedside manner or that understanding that you have to love your loved one with dignity, compassion, respect, and honor because they deserve it. Not because they want it, they deserve it. They deserve it. And so that's the angle that I took. And I realized, like I said, when I had to have a caregiver as he went through the stages to come in and help me care for him, I realized that she didn't know either. And I asked her, Were you certified in dementia care? No. No. They just sent out a caregiver to take care, feeding them, and doing that stuff. And so eventually, though, during the journey, as the stages went on, I had to place my husband at a long-term care facility.

Getting A Real Assessment Done

SPEAKER_00 23:00

Okay. Was it in Chicago? Did y'all stay in Chicago? In the south-up of Chicago. Okay. Um, and I realized again that the caregivers there did not know how to care for my husband.

SPEAKER_01 23:13

So professional caregivers. I want to go ahead and I want to make this real clear. No, professional caregivers may or may not. Parenting up community, listen to Pastor and Jay Smiles. Professional caregivers may or may not have dementia expertise. And that is a very critical question to ask of the agency or the facility. It could be a memory care facility. That doesn't mean that the people, the caretakers there have been trained in dementia. And that is infuriating to me. How are you gonna be in a memory care facility and your people don't know what to do with somebody whose memory ain't right? Come on, I got you on my side because that's probably paying me. I gotta pay extra money. When you put memory care in front of the facility, that's another couple thousand dollars. What am I paying for if these people don't have substantially more training?

SPEAKER_00 24:10

They don't. They do not. Yeah. So I went in to this memory care facility, and I says, My name is Pastor Jeanette Jordan. My husband is Dr. Robert Jordan. You will call him Dr. Robert Jordan. I know that's because that's who he is. Get them straight. My husband is not to stay in his room medicated all day. You are to take my husband out so he can socialize and be a part of the activities that you provide. Whether he knows or whether he can do it or not, let's let him be in the midst. That's right. You're going to feed him three times a day, and you're gonna I want you to make sure that he eats. I mean, I laid out what my expectations were of how they were gonna care for my husband, and I kept the role as lead caregiver, although he was in that memory care facility. You cannot do anything with my husband until you call me. I mean, the doctor said I don't want you changing his medication until you ask me if that's okay. And so that was the respect that they gave me.

SPEAKER_01 25:06

How did you know to do that, Pastor Jeanette? How did you know to take that type of ownership over what was happening with your husband in a facility when technically you didn't work there? Hey, that was my husband of 58 years.

SPEAKER_00 25:22

Girl, you better give it to me. I know that's another hand clap. It wasn't, it wasn't, I didn't have to think about that. That came natural from the city. That just came natural. That was God given. God said you have to take control because this is your husband. And I loved him uh more than life itself. And I was just gonna make sure that he was taken care of. But I wasn't I didn't take him to that lawn care term facility to drop him off, though. I I didn't take him there and just say, okay, you guys do this. You better speak on it. And I'm gonna go on back home. And that's what I was there every day. I know that's right. And I looked at those caregivers professional and those that were not so professional. I looked at them as the people that helped me care for my husband. An extension of your absolutely, absolutely. And so I that's why I learned that they really didn't know how to care for my husband.

unknown 26:12

Okay.

SPEAKER_00 26:13

They didn't know that you can't come in and say, How do you feel this morning, Dr. Jordan?

SPEAKER_02 26:19

You don't know.

SPEAKER_00 26:20

Right. You know what hurts? Are you hungry? Do you have to go to the bathroom? He doesn't know that. You are supposed to be able to know how to communicate with my husband. There was a point in time my husband forgot how to eat. He forgot how to swallow. They will get to that in going through the stages. They immediately wanted to put in a feeding tube. That ain't happening. I don't want a feeding tube. If my husband is at the stage where he needs a feeding tube, then I'm just keeping him alive for me. He's not gonna be a viable person.

SPEAKER_01 26:52

No, I want to that is such a selfless point of view. Do you know that? You might not even know it because that's who you are. It's such a selfless point of view to say, well, if he needs a feeding tube, then he's existing just for me. Yes.

SPEAKER_00 27:08

That's deep. Yes, that's deep, Pastor. So I'm gonna teach him because I don't think that he is at that point. Okay. I'm gonna teach him how to eat. All right. I'm gonna teach him how to swallow. And they kept saying, oh, well, he's not gonna happen. It's not gonna happen. I said, well, watch. Right. How'd you do it? I remembered how he had his babies as a pediatrician to eat. Okay. Or to swallow. You better full circle that day. I made a full circle, baby. I became I became his pediatrician. Although he's not a baby. But I was using some of the techniques that I saw him use to get his babies to eat. So when I would put uh food on a uh a spoon to his mouth and he would not open his mouth, I then would take something sweet and put it on the tip, like we did. Let the little nerd taste that, and he opened up the over pep mouth and I shove it on him. And then I would rub his Adam's apples, and that would give you a swallowing reflex. Okay. And he began to swallow. And I would take my time. One of the things I learned in the long-term care facility, they don't have the staff and they don't have the time that my husband needed for you to feed him. Okay. It took me almost an hour sometimes to get him to eat a full plate of food. But I had the time. That's right. So I sit there and I took my time and finally he learned that. And then I've learned to, then I started to put the spoon in his hand. Okay. And I started to put his hand in the food and using some of the Tippy Snow, who is well known in the Alzheimer's arena with the mini techniques, I used her hand under, uh, over hand to help feed him. Right. And then he learned the reflex, and he began to start doing it himself. The next thing you know, my husband was eating himself. And feeding himself and feeding himself. And what did the staff say? They just said they were like, hey, I don't know. What did you do? I was able to get my husband enough nutrition in his body to be able now to come out of that lying position, that you know, that catatonic state almost. Absolutely. Uh, to sitting up in his bed, to drinking. Another one of the things I found out that they don't give him enough water. Oh, I'd rather you wait for wait for him to say, I'm thirsty before you give him some water. He can't see it.

SPEAKER_01 29:28

You can't wait for a person with a dementia to ask for anything.

SPEAKER_02 29:33

No.

SPEAKER_01 29:33

Nothing. Nothing. Not not a tissue, not to wipe their nose, not I gotta go to the bathroom, I gotta eat. Now I gotta scratch. Like you, you just every so often, I just walk up to my mom and I just start rubbing all over. I rub her head, I twigle up with her ears, I scratch her side, because I don't know if something is itching. Absolutely. And you know, if she squirms away from me, then I stop. But if she don't squirm, then I didn't hit a good spot. Absolutely. And I'ma just keep scratching or rubbing. That is extraordinary, that that angle that you took.

SPEAKER_00 30:08

But that but in doing so, I just started doing so many other things. Okay. You know, uh, making sure that he went to the activities uh uh uh room, making sure that he participated in whatever they were doing. I played cards with him. Uh although he didn't even know what kind of card game we were playing. That's right. Uh, whatever he did, if I put a card down, I said, put that card down, and he would put the card down, I said, Oh, you won. Right. You know, we played. It did not matter whether it was the right thing, but it just kept him doing something. Right. Using his hands. Right. His arms. Right. I would give him a uh a napkin on the table. I said, baby, let's fold this up. We need to fold this napkin up. And just he attempted to do that to make him feel like he was worth something. So

Advocating Inside Memory Care

SPEAKER_00 30:53

after trying all this stuff, I said, you know what, there are other caregivers out there that are fumbling around with no one to help, and they're not being the best that they could be as a caregiver for their loved ones. Right. And they're willing to learn if there's someone to teach them. I realized that I'm helping people are not calling me and saying, How did you get him to do that? How did you get him to do that?

SPEAKER_02 31:19

Right.

SPEAKER_00 31:19

And I would tell them my little tricks. I said, you know what? I need to first write a book about my experiences and what I went through. And I did that. Journey of Compassion is my book. Yes. After after I did that, I said, I need to establish a business or something. I didn't even know what it was gonna be. So I could teach, so I would be a voice, I could be an advocate for caregivers. Right. So I I God gave it to me. In my dream one night, it it came to me. Dementia dignified a cat. And your husband was still he was still with us.

SPEAKER_01 31:57

So I just I just want everybody that is watching or listening to really digest that while her husband was still here, she is training other caregivers. Absolutely. And she decided to start her foundation. It's a nonprofit, correct? It's a nonprofit. It's a nonprofit foundation, and he was still here because of how much you wanted to serve. That's just naturally who you are, is to serve. And Dementia Dignified Academy, I gotta tell you, DDA, that sounds a lot like a doctor. It sounds like a medical thing. You know, DD something, usually DDS, DDM, it's a doctor of something. So it sounds fancy and expertise even before you started doing stuff.

SPEAKER_00 32:44

Oh well, thank you. But God gave that to me. Yeah. Dementia Dignified Academy, because I wanted to teach caregivers to care for their loved ones with dementia, with dignity. Yes. And so that's what I did. And I I didn't know how it was gonna go. Um, my business partner, Michelle Mason, who is my right hand, she's my spiritual daughter. I couldn't do this thing without her. Okay. But she is the one that helps to write the modules for the academy. She's the one that goes out with me and we we teach caregivers the practical side of teaching a caregiver how to interact with their loved one. Or we do workshops to tell them about the stages that they the loved one may go through. Or we go to churches and senior care facilities to tell people what to look out for. Okay. Uh to give them the warning signs. I mean, I know the Alzheimer's Association does the same thing, but we wanted to go in our community that looks like us. That's right. That's a look like useful. See people that look like us, we tend to listen. We trust one another.

SPEAKER_01 33:49

We're community. We have a lot of reason not to trust people who don't look like us, even if there might be a good one coming along. Dementia, uh, Alzheimer's, which is what you and I have experienced the most, it is so unrelenting and so painful. And even as a caregiver, you're in denial, like you were initially with your husband. Um, I was with my mom. You're in denial, you're in pain. Yes, okay, you're you're hurting. And then if the physician or the agency or the facility that you're dealing with adds any type of discomfort or discontent, you can't take it. Like as a caregiver, you're already barely, barely, I mean, you barely got your head above water. You're like gasping for air, you're doing your best. And it helps when you know not only that there's someone that looks like you, but then there's someone that's also having this same experience. They've either lived it recently or they're currently in it, and you can talk out, talk because as um, and I and I say this because I I have uh the podcast is now, praise the Lord, and the community, we're global. And so everybody black all over the world ain't like black Americans. And I tell them, what I know how to do is be a black American. Now I am open to you teaching me about your cultures in Ghana or in Lisbon and what the black community needs, but I know how to speak black American. I know what it means when my grandmother or my mother uh says my first and middle name. Janae Marielle. That's my that's my legal name. If they say that, I gotta hush and say yes, because I'm about to be in trouble. Like there's a certain code for how we live and how we speak. And there's a certain way we love on our elders. We try really hard to see them or go see them or keep them with us. We might move them from the brother to the cousin to the auntie, and this man didn't move like every two months for two years, but he went to family. And sometimes that's positive. But the point is it's always the effort that we're willing to put in to do better. And so when you started Dementor Dignified Academy, you gave people a lifeline, Pastor, so that they can learn faster.

Teaching Dignity As A Care Skill

SPEAKER_01 36:17

Yeah, right? They don't have to make as many mistakes maybe as you and I made coming up through this thing.

SPEAKER_00 36:24

But let me tell you this is in our community, yeah, we don't want to talk about dementia or old timers as they used to be.

SPEAKER_01 36:33

Old timers or um you go and see now, you don't want us, because I remember someone telling me this about my mom. Your mom's not losing her mind. Like they have decided that some kind of way, Alzheimer's means you are losing your mind as though that's something to be embarrassed about. Right. Like she could have helped it, right? Yeah. And I'm like, I don't feel that way at all. I don't think my mom is losing her mind. Her her brain doesn't work the same.

SPEAKER_00 37:08

Absolutely. But but but we're just a a culture that what goes on in the Jordan House stays in the Jordan. But we don't want to talk about that. That's true. So what we what I what we teach our caregivers or the communities that we go in to talk about this beast of a disease, this boad. Yeah. We teach them that you cannot, we are our brothers and sisters keeper. So you cannot not talk about it. Correct. Come out of your house like I did and talk about the struggles and what I saw and how I had to go and find uh what was going on and how I had to research so I could be a better uh caregiver. Even in the uh senior suites or the uh senior communities that we go out. So if you see your girlfriend or your next door neighbor wandering around the building, you know, don't just say she's crazy. You know, look at her wandering around the building. It could be something wrong. So if you don't know her family, tell whoever the management is in that building. You know, my next door neighbor is wandering around the building. Maybe you better tell her family, you know, maybe she does some cognitive decline. So take accountability for that. So we, you know, we're just trying to open up the eyes of our community. And I think we're doing a real, real awesome, awesome you are. I heard it. I heard you doing it when I didn't even know who you were. That was not an African-American I was talking to. Sounded like it. This woman, this woman found uh Dementia Dignified Academy Support Group because we have a support group that we uh do, and now we do it every fourth Thursday of the month virtually. Virtually, so you don't have to be in Chicago. Anyone this woman was from Georgia because I was here doing it. She was from Georgia. Okay. And she was looking for support. Right. And of course, we were at the altar program, so the support that we have here was for the black community. Right. But I did not leave her without helping her. Do you know that woman is on my support group every fourth eight? I love it. And her husband is going through dementia, and he's able to be on the support group with her. He's in his early stage. That's phenomenal. He was concerned about her going through this journey with him as his caregiver. And it's so very interesting. It's so very interesting for us to watch him because we're, if she keeps with us, we're gonna see him go through the stages. Right. And he's just now looking at her and applauding what she's doing, you know, for him. So I had to help her on that day because that's why she called that number, uh, got jumped on that Zoom support line because she needed help. And I know how I needed that same kind of help when I was starting out. So did I. I'm telling you. So did I. But there is nowhere that I go and I talk about what I do, that someone will know somebody that's going through this disease. And lost. And lost. Going through it and lost.

SPEAKER_01 40:03

Absolutely.

Breaking Stigma In Black Communities

SPEAKER_01 40:04

But as God is our witness, we're not gonna be as lost for much longer. Because between dignified dementia academy and the parenting up community, what we're gonna do is we're gonna keep telling stories. We're gonna get the word out, we're gonna make sure that people know that there's a community, there are multiple communities that are attacking this same issue, which is you're a family caregiver, you don't have any training in dementia or dementia-related diseases, and all of a sudden, somebody that you love a lot is suffering.

SPEAKER_00 40:40

And what in the heck am I going to do? But let me, I want to say this. Yes. I don't like to say that the person with the disease is suffering because they don't know. It's the caregiver that's suffering.

SPEAKER_01 40:51

I received that.

SPEAKER_00 40:52

I received that. They don't know that. They don't even know the thing. We're looking at it and we're sad, but they're not suffering. They're not in pain. But we need the caregiver. We're suffering. We're suffering double. We're suffering for them, for us, for what we thought we might have. Absolutely. So out of this whole thing, I've I was I've I uh my husband made his transition August 11th, 2023. Okay. Guess what? I had prepared myself for that transition. I had read about it. I already know that there is no reversal because we don't have a cure. Right. Although they're working very hard to find a cure. You knew nothing would help your husband. But I knew nothing would help, and I knew the end was going to be the end stage. Yeah. And so when he was going through his transition, I was able to prepare the room, prepare him, and prepare all of us in that room for his peaceful, loving transition. I brought in uh essential oil. So we used aromatherapy. I brought in soft music and familiar music to him. We prayed, we sang, we laughed and all of that. That is divine. When he took his last breath, I all I could say was enjoy the journey, honey. Yeah. And because I found purpose in my pain. Yeah. And that purpose was now you were sacrificed. That's how I felt. My husband was sacrificed so that I could hear God's voice saying, You've been anointed and appointed to start this nonprofit to teach caregivers on how to care for their loved ones with the love and dignity and compassion uh that that your loved one deserves. So that's what we're that's what we're about. So we train caregivers. They come to us and we train them on what to look for, what's happening with the brain, with the amyloid plaque and the toe and all of the neurons, all of that. We we tell them. We give them some science. Yeah, it's a disease. So we have to understand it's a disease like cancer is a disease, diabetes is a disease, dementia is a disease. Alzheimer's is a disease. So once you get that in your mind, then the arguing that you are doing, the the the just not understanding and fussing back and forth and getting frustrated becomes different. It becomes different. And you begin to talk to your loved one as though uh you get on in their world. That's right. My husband was in our world for what, 58 years of my life. Right. Now I'm gonna step off into his world and care for him from that vantage point. And so that's what I did. Perfection. That's what I did. That is perfection. And I knew when he's winched, something was hurting. That's right. And I remembered that, okay, he had arthritis in his knees. Maybe his knee is hurting, but he's not able to tell me that. And I was able, like you said, to massage his knee. Yeah. Put some start moving around or touch his stomach. Maybe he has to go to the bathroom. That's correct. Can you take my husband to the washroom, please? Right. I begin to know all of the facial features and all of the movement. So that's what we tell.

SPEAKER_01 43:44

They do have tails. Oh, yeah. That the Alzheimer's patients, they don't like it's not the people with Alzheimer's, they're not necessarily a poker body. They might have a poker face, but not a poker body. Something is gonna move or twitch. Like I have told everyone. Caregiver. If my mom is sitting and she starts because she's not a squirmer, I say if she starts squirming, she has to go to the bathroom. Now, we don't know if it's number one or number two, but it may have already happened. But the point is, please get her up. That's right. And take her to the toilet. Like shit, immediately I don't care if she's eating, move the food. Because there's something happening right now in this moment.

Preparing For Transition With Peace

SPEAKER_01 44:23

Pastor, I gotta tell you, it has been such a pleasure to have this conversation with you. And listen, I'm gonna need to have you back on. Maybe I gotta come to Chicago and we do uh an episode showing some of your tools and techniques. You have to let everyone in the PantherNap community know how they can get your book, how can they become a part of your virtual uh support group, or maybe even attend some of your live training sessions.

SPEAKER_00 44:51

Okay, because our next training is coming up on September the 26th in Chicago. Okay. Uh we will be training uh dementia certified specialists that we become DCSs. They get a certification, and for those professionals who need CEUs, they will get six CEUs for taking the course. Whoa! It's a seven, it's a six-hour course. So you're with us for practically all day. But when you leave, you will feel that you have been empowered to take care of your loved one, or you've been empowered if you are a caregiver uh working for a home health care agency. You have a whole different uh outlook on how to care for someone living with this disease. If you're looking for my book, Journey of Compassion, you just have to go to our website, which is www.dignifiedda.org, and you can search books and it'll pop up. Even that book of Dr. Jordan's is also online. They can pop up and find that there. Uh if they want the support group, that's also on our website. But it's every fourth Thursday of the month at 7 p.m. Eastern Standard Time, 6 p.m. Central Standard Time. Uh, for it's one hour. And we always try to have professionals on our show that has some uh something unique to tell us about this disease. Uh this month, we're having uh a young lady that's gonna come on to give us some breathing exercises. As caregivers, we need to learn how to relax. We need to have to breathe. We don't breathe well at all.

SPEAKER_01 46:23

We we are holding our breath more than we realize as caregivers. And we so because if you have to go like that, that means your body was going without the appropriate amount of oxygen for maybe two or three minutes. Now, it doesn't mean you were underwater, but it does mean that your lung capacity, everything, your brain, everything got truncated. Yes.

SPEAKER_00 46:45

So I just coming on, she's coming on and take us through those exercises. Okay. And then the following month, we're gonna have a uh a young man that's gonna come on and talk to us about the importance of respite care. Yes. Uh, caregivers need respite care, that you need to be able to get out and and do stuff for yourself. As I was caring for my husband, every Wednesday was my day to just get out, whether I'm sitting out in a place like this, uh-huh, or whether I'm going to get a manny or a petty. Uh but Wednesday was your day. Wednesday. Now, did you did someone suggest that to you or did you come up with that on your own? It was suggested along my way that I, well, that a caregiver needs care. Yes. So you decide what kind of care that you need. That's right. I also found myself a therapist because you need to be able to dump on somebody because I talked to my therapist this morning. Frustrating. And you can't deal with well, as a pastor, I'm used to listening to other people. Right. And I'm used to helping them through uh whatever they're going through. Right. And I realized quickly, I can I can't counsel myself. I I can't dump on myself. I need to dump out of myself. So I actually found a therapist that I would go to weekly that helped me through the process, helped me get from here to founding Dementia Dignified Academy. So that's what we encourage caregivers to do. Don't be so like you can handle it because you can't. You can't handle it.

SPEAKER_01 48:03

You can't handle all this. You don't know what's coming next. You don't know what just happened. It's over, and you still are not quite sure. Yes. What did I just

Training Dates Support Group Respite Care

SPEAKER_01 48:11

go through? Well, again, Pastor, it has been my pleasure. I love my honor. I love you too.

SPEAKER_00 48:16

Thank you for giving me the opportunity to tell my story. Of course. Your story is worth telling. Thank you. All right.

SPEAKER_01 48:21

God bless. The snuggle up. How wonderful is Pastor Jeanette Jordan? The lady just basically led with love. She didn't take no for an answer. It was a whole lot of stuff that she did not know. But it didn't stop her from giving her best effort and a whole lot of energy to make sure her husband was okay. My huge, huge takeaway from all of that is don't be limited by what your current knowledge is. So what? You haven't had training. So what? You don't know what Alzheimer's is. Neither does the person who has the disease. Get in there, do something. It's better to try something and make a few mistakes. Yes, she argued with her husband in the beginning because she didn't realize that he was now living in a different world. But as soon as she did, she modified her behavior. Overall, remember not to beat yourself up about what you don't know. Try something, ask questions, find dignified dementia academy, keep contacting us here at the Parenting Up community. We will make it through together. All silence is heavy, but we ain't gotta be. Thank you for tuning in. I mean, really, 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,

Host Takeaways And Subscribe

SPEAKER_01 50:05

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.