Detroit Caregiver Chronicles

Parenting Up family, we are excited to bring you a new 3-part series in partnership with Wayne State University's AGReed grant! 

In this episode, Detroit caregivers speak with J Smiles about their experiences as caregivers for their loved ones with dementia. They discuss the physical demands, logistics, and emotional stress while also offering self-care strategies to prevent burnout.

As always, caregivers also spoke about funny moments with their loved ones that provide levity during the tough times of dealing with this horrible disease. 

To learn more about Wayne State's AGReed Grant - visit agreed.wayne.edu! 

Host: J Smiles

Producer: Mia Hall 

editor: Annelise Udoye

Video and Studio: Evry Media Detroit

Chapters

• 0:00 Welcome to Season Six
• 3:39 Detroit Tour Kickoff
• 4:49 Caregivers Share Their Stories
• 14:15 Early Signs and Trigger Points
• 29:30 Finding Support Systems
• 37:18 Humor in the Caregiving Journey
• 44:06 Final Thoughts and Community

Transcript

J SMILES : 0:00

What's up? Parents and our family? I cannot believe it. Welcome to season six. Yeah, we made it six years. I didn't do something so crazy that they cut it off, that they killed me or that they found me dead. Thank you for supporting us, thank you for loving us, thank you for making us go global. That is right. We are global, but not the pandemic. Okay, we're the kind of virus that can't kill you but helps you love other people. Better, better, better. And this episode right here. What we doing right here right now? We in Detroit, detroit. This is our first tour and it's happening in Detroit. Okay, we'd like to have a three part series, but this is the first tour and it's happening in Detroit. Okay, we'd like to have a three-part series, but this is the first episode.

J SMILES : 0:49

So you just get ready, baby. You know how they do it up here what up, though, what up, though? And to make it even better, can it get better? This is actually today. Today, while we're filming, right now, it is really for real. Katie can make this up. It's our fifth anniversary. It is baby. This is the day that Parenting Up was born, and this is the day that we are bringing you the fire that you try to find it Woo. So wherever you're listening, wherever you watching, just get ready, baby. Sit down, drink something, sip on something, eat on something.

DANISHIA: 1:33

But be safe. And he called me very upset and he says you need to come down here and see about your mom Because you know she was threatening to unalive him and a lot of things. Right, that's the word.

J SMILES : 1:46

Unalive is the word, but y'all know she can't say it. But I can say it. She was going to kill him.

RODNEY: 1:52

There are about 7 million people with dementia and about 5% of them they get at the younger age.

J SMILES : 1:59

Having this conversation with you all, it seems to be a major commonality is 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 and anything with a heartbeat. Spoiler alert this shit is heavy. That's why I started doing comedy. So be ready for the jokes. Caregiver newbies, ogs and village members just willing to prop up a caregiver, you are in the right place. Hi, this is Lady. I hope you enjoy my daughter's podcast. Is that okay? My daughter's podcast Is that okay? What's up Parents and Up family? My goodness, I could not be more excited. We are here in Detroit. It's our Detroit tour, specializing in everything we need to tackle Alzheimer's, dementia and focus on caregivers. Y'all know, as soon as they asked to do that, I was quick, fast and in a hurry flying to Detroit City. That's the way my granddaddy used to say it.

J SMILES : 3:18

This is episode one in a three-part series, so let's just get right to it. Let's get right to it. I got some fantastic caregivers with me right here. I ain't gonna make it too formal, because y'all know we like to just sit around chit-chat and make it happen, but Casey, denisha, roger and Katrina are going to give you their stories about how caregiving became the most important journey in their life. What up, y'all? I appreciate it. Since you gave me what up, though, I want to hear from you first, denisha, how about that? Okay, okay, you're a caregiver. Who have you cared for?

CATRINA: 4:08

Currently I'm caring for my dad.

KC: 4:11

He has dementia he was diagnosed last year.

CATRINA: 4:14

Okay, but when you say caregiver, it's a variety. So I'm also a single mom. My son is 11. And it's me, him and my dad, in my house right now.

J SMILES : 4:27

So you're that sandwich generation. You are the epitome of the sandwich generation. Yes, you know, you got the younger person and then you have the older person and you right there in the middle. Yes, I often think that maybe we should be called like the meat generation, because the sandwich makers sound like we the bread. That's not the case. We getting squoze. But anyway, are we the squoze generation? I don't know who came up with that. I feel squoze sometimes.

UOLANDA: 4:54

What type of?

J SMILES : 4:55

dementia was your dad diagnosed with?

CATRINA: 4:57

So he doesn't have a formal diagnosis just yet. I've been in the process of getting all of those documents in order. I would just say it's pretty much the early stage Okay, because my dad can remember who I am, who my son is, different time scenarios, maybe things that happened years ago, some things that happened recently. He forgets. Some stuff that happened years ago he forgets. So it's kind of hard to explain his level. But he's functional. He does everything for himself. He just needs reminders, gotcha.

J SMILES : 5:42

Roger, Come on man.

KC: 5:47

Currently I'm caring for my mother Previously it was my brother and my mother. She's been diagnosed with two types of dementia. Really Two types of dementia.

J SMILES : 6:01

Yeah, she has Alzheimer's and she has vascular dementia, and did they give both diagnoses at the same time, or did one come way before the other one?

KC: 6:16

Well, they did too, but she misdiagnosed one of them so I had to go back and get it, see what it really was. And she had misdiagnosed it with frontotemporal and frontotemporal is acting out, lashing out, cussing and all that kind of stuff, and my mother don't do all that Found out that it was Alzheimer's. So she has the vascular which you know comes with the many strokes in the brain and all that type of stuff. So she has yes, so she has double dementia and I've been caring for her for the last 12 years.

J SMILES : 6:52

Whoa, I'm in 13.

KC: 6:54

By myself.

J SMILES : 6:56

By yourself. Yeah, I'm an only child, so it's funny how that happens. Now, everybody was easy to ask my mama for stuff. Everybody was easy to need something.

J SMILES : 7:11

Need a little help with their car. No college tuition, baby pampers they're the same people. I can't find them nowhere now. Anyway. But about you, Roger? I have a question around. What made you or anyone else in your family know, hey, this diagnosis doesn't feel right, Because that is, a lot of people don't even know about dementia. But something within you or your instinct said, hey, this diagnosis ain't right, Like what made you think that or do something about it.

KC: 7:44

Well, me and my mother have been super close since I was a young girl I'm the oldest, but me and her have been, you know. So I would always go over there every day, just, you know, hang with her or see about her, whatever, not that she was sick, we just liked that. And as I would go over to the house, I started noticing that, you know, things was changing. My sister and brother were staying with her, but you know they're like, well, this is happening and she wouldn't. Some bills was coming that wasn't getting paid, or this was happening that wasn't taken care of. And I'm like, you know well what's going on, because my mom, I've always been the business person, because her and her husband have owned several businesses in Detroit, so I know she's a business person. And then I just started taking her to the doctor and from that point I just was taking her to everything, every kind of doctor for her. When we got to the neurological doctor, that's when we came up with the dementia and I found out about that.

J SMILES : 8:41

What made you push them to say this? One ain't right to make them change the diagnosis.

KC: 8:47

Because she wasn't. She wasn't taking care of business. When I come over there, like I said, I just wasn't taking care of business. Mail coming in, you're not opening the mail, this going on, this just ain't right. Then when they came out talking about the house and my sister and brother, they said they coming out about the house. I'm like, and my sister and brother they said they're coming out about the house, I'm like, well, y'all live there. So I had to come over there and see what's going on about the house, because I know that they own the house, you know. And then from that point on I just started getting into really taking to doctors, getting into classes, getting into education and stuff and find out what's going on with my mom.

J SMILES : 9:33

Oh, my goodness, Wow, oh my goodness. That wow takes it right on to you. I take that wow as what you got going on over there. Katrina, who are you caring for or have cared for, your mom?

DANISHIA: 9:47

Yeah, a lot of others in the past, but most recent since 21,. A mom.

J SMILES : 9:53

Okay, what's her diagnosis?

DANISHIA: 9:55

Dementia. She was in the beginning doing all the. She had all the aggression acting out, cussing, violent fighting. It was a lot. It started. She resided in Tennessee, so when I would talk to her she sounded different and when we would FaceTime she had this glossy type of look and like she was looking to see if she really knew me. She looked, she was just looking at me different.

J SMILES : 10:30

OK.

DANISHIA: 10:32

And over time her husband would call me and say your mom, she, she's acting different. She's in the room, she won't come out. She keeps saying I'm stealing from her, I'm stealing her money, or I took her wallet or her keys and she thinks I'm trying to hurt her and I would talk to her, and none of those things. She don't remember it. It never happened. So time went on and he said you know, he called me one day. He was crying. They're of age, they're both at this time, over 65. And he's like 70-ish. And he called me very upset and he says you need to come down here and see about your mom, because you know she was threatening to unalive him and a lot of things. Right, that's the word.

J SMILES : 11:24

Unalive is the word, but y'all know she can't say it. But I can say she was going to kill him. Kill him dead. That's not good. Nobody wants to be told that to their face.

DANISHIA: 11:35

Well, she was trying, based on what he was saying. So it was it got bad. So when we brought her up here, long story short, my sister had power of attorney because I was still in corporate working and when I would go and visit her she put her in a nursing home. And when I would go and visit her she was just look like she just was giving up, wasn't thriving, and so, after having a conversation with my husband, we decided that we would bring her home with us. So I left corporate.

DANISHIA: 12:10

Once I got her under my roof I was able to see really what was going on with her, and that's when I got all the aggression to the hallucinations, the wandering through the night trying to get out, unlock the doors, calling different members in my family saying that you know I killed the person there in the basement. It was just a lot of confusion. So what ended up happening was she was on a lot of different psychotropics from the nursing home, so they had her on over 15 medications what? And they were very contradictory to one another. Very it was horrible. So I have a background in holistic foods and herbs and things and so I knew to start juicing for her three, four times a day. It was a lot. That's very overwhelming. No support, no help Again. My sister she was just never came back to see about her to this day. So it was a lot. But you know, thankful by the grace of God, I was able to get her off of those meds and get her down to now just the three free blood pressure vitamin D and statin.

J SMILES : 13:36

So that don't even count in comparison to what you said. I would like to just go ahead and say congratulations, because you pretty much have our own water pills. Now I'm also a comedian and I know that's more than water pills. However, in comparison to what you said, I mean you like cleansed her whole system, it sounds like, and got her on some very foundational medications, and that is major.

DANISHIA: 14:00

That was the fight, though. That was really the fight to really have her off the sugar. You know she would tell me well, my doctor told me to eat sugar, I need sugar for my hypoglycemia and I'm like no doctor would tell you. It was a fight, it was really a struggle, but I am thankful by the grace of God. So here today to help with the aggression, I did have to get her on a medication for that. So today she's calmer. You know, she doesn't remember. It's a short term memory. She reminisce so she can remember things from the past, but as of today she's doing a lot better.

J SMILES : 14:43

What form of dementia did they ever give her?

CATRINA: 14:46

a specific, one, or was it just a?

J SMILES : 14:47

generic the umbrella of dementia.

KC: 14:53

It's 50 different types of dementia.

RODNEY: 14:55

Maybe more.

KC: 14:55

yeah, that's why you have to know what dementia they have, so you'll know how to handle it and take care of it.

J SMILES : 15:02

We are still figuring out so much about this dreadful umbrella of dementia and all the things that fall from up under it. Thank you all so much really for sharing. I know my own journey and just in each time I have to share it and I choose to share it. But it's still a bit of reliving it and I see it in each of your eyes and I'm feeling it in the pit of my stomach because, even though I haven't said my story out loud to you right now on this sofa, it's making me think about my story and when it happened. And so just thank you for being vulnerable enough to share your story, because it does help other people know that what they're experiencing right now they're not alone, and the way they feel they are not totally losing their mind, it's okay to feel. The way they're feeling or the way their family members are responding might be more typical than they think. If they are handling a lot of loan and they thought they were about to have a whole army helping them out, okay, kc.

RODNEY: 16:09

Yep. So my story I'm taking care of my wife and she got diagnosed at the younger age, at 59. Wow, there are about 7 million people with dementia and about 5% of them they get at the younger age. And we are in the 13th year of our journey and she's at home. She's under hospice care right now. I do have a caregiver in the morning, caregiver in the evening, so I do find some time for my own self-care, for example, coming here. I consider it as a self-care trying to be.

J SMILES : 16:48

One moment. Y'all hear that he considers this with us as self-care and, on behalf of Dr McNeil-Wayne State and the Agreed Grant and the Parenting Up community worldwide, thank you. I don't know if I've ever been told I was a part of somebody's self-care routine. Yes, that makes me sad.

RODNEY: 17:08

So whenever I get time away from her active caregiving, I consider it as my self-care, because I'm doing something different from caregiving at that point and my goal in life is to be an advocate for this disease. And whenever I get an opportunity I would like an advocate for this disease and whenever I get an opportunity I would like to speak about this disease. So in my wife's case and many dementia you ask other people what type of dementia. So she has classical Alzheimer's and once she was diagnosed I did not go into more knowing about the more disease and I don't even take any images or any MRI since then because, being an engineer, if I cannot act upon the solution, why get the data right?

RODNEY: 17:53

I understand yeah, so the data is. You know you can do something with the data. If there is no, you know. So anyway, I haven't done anything and to me, taking care of her is the primary goal, not knowing what type of disease she has or what type of dementia she has, because all dementia, at the end they all manifest into the one big mess.

J SMILES : 18:14

Right, it's a big mess. It is a very big mess.

RODNEY: 18:17

So you may start with one dementia, second, third, type, fourth but at the end they all become because the whole brain gets affected. So I Focus more on the caregiving and to me there are two aspect of caregiving. One is my own emotional journey and I've written about it, I've talked about it. You know there are many phases. The one phase I like to call a simple acronym Sarah s a Ra. Okay, people go through shock anger. A simple acronym SARA S-A-R-A. Okay, people go through shock anger, reflection and acceptance. So at the end we all have to come to some level of acceptance. And just hearing everybody here and yourself, we all come to some level of acceptance. That's why we are here.

J SMILES : 19:02

I think in the SARA I had a lot of sssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssssss. It was just shocking yeah.

RODNEY: 19:23

So and another point I would like to make it you know whenever loved one has you know before we go for diagnosis. There are telltale signs a few years before that and I call minus one, minus two, minus three. So in my case, you know, my wife would cook and she would have something more salt or more chili pepper. So cooking was not consistent. One time she went to LA to see the kids and she missed her flight. She went to the wrong gate or something. So little things like that happens before you go to the doctor. And there is a trigger point In my wife's case. She was going to a friend's place for afternoon lunch and she got lost. She had been there before. She was lost for five hours. We could not get in touch with her or anything. She came home after five hours and I said this is the time we need to go and see the doctor.

J SMILES : 20:15

And that was the trigger point.

RODNEY: 20:17

So I think in everybody's life I'm sure there is a trigger point. Why would you go and see the doctor? So in my case, that was the trigger point. So would you go and see the doctor? So in my case, that was the trigger point. So my point is that, even though we are in the 13th year, there were minus three years before that, so the journey has been there for more than 13 years.

J SMILES : 20:33

Understood. Understood Is that something that you all can relate to as well.

J SMILES : 20:37

Like before the actual diagnosis, looking back on it, can you think of, or maybe other family members or friends may have said well, now that you say your, you know your loved one has been diagnosed. I do remember that standing in church, that one time that happened to me and I got to say I was angry. I was in the eight when I didn't live.

J SMILES : 21:01

I'm originally from Montgomery, alabama. My mom was living there and after she was diagnosed, people who worked for her and people in the community are going to come up and they're whispering Well, jay, you know what? I didn't want to say anything because I just thought maybe it was me or she was having a bad day. But I saw in the drugstore and she didn't have her normal lipstick on, like she had on black a little goth and I thought maybe she was and I was like you know, damn well, my mama wouldn't have on she's 62 years old. She wouldn't talk wearing black lipstick like why, didn't you say. But you know, but again, and especially Southern politeness or whatever that might be, they didn't say anything. But then they said something later to say she wasn't quite acting like herself.

DANISHIA: 21:54

So you're shaking your head. Well, thinking back, just remembering my mom, it wasn't like a progressive situation. Hers came from a TBI, so she had two falls which caused her dementia. So that's what happened. And just remembering it now. Yeah, so once she fell when she was in Tennessee, missed a computer chair. It rolled from under her, hit her head on the leg of the desk, which was a metal leg. The second time Tennessee it don't really snow, but one particular year it had like a light covering. They were walking out and she slipped and the first thing that hit the pavement was her head. When she came back down and she kept saying it bounced like a ball. So that's what caused her dementia, that's amazing.

CATRINA: 22:49

Same for my dad. I found out just from a few emergency visits that my dad actually must have had a fall as well. Talking with my brother, he was like oh, I remember this one time dad called me and told me that he ran into a parked car on his bike. I said, oh, okay, I get it. So he hit his head and he has fluid on the brain. So that's one part of my journey of just trying to figure out exactly where he is and what diagnosis he has. But again, that just came from a doctor's visit. We went to emergency because he had a seizure and they like what's going on with your dad? I'm like, well, I don't know for sure because again, again, he's a male. We're going to get into this story about this male, Cause I love my dad, but he's such a male he don't want to tell his business, he want to keep it to himself.

CATRINA: 23:57

And I didn't know what I was getting myself into, cause he didn't tell me things. So you're like, oh yeah, I've seen this. Oh yeah, maybe that. But I'm good, I'm fine. I'm like okay, rewind, my dad is only 66 years old. I say only because he's young, and most of the times when I'm in capacities like this, I'm more of the younger person that's speaking and I'm like this ain't supposed to be me Shock.

CATRINA: 24:24

My dad. He was just riding his bike to work just a week ago but I got the call from his job that my dad didn't make it to work and I'm like what's going on? They're like I don't know he's supposed to be here at nine o'clock. Here it is 11, 12 o'clock. I'm like, okay, let me go find out. My dad the mail. I don't have keys to his house. Nobody lets me in. I'm trying to figure out. Hey, what's going on.

CATRINA: 24:53

My dad I um, sort of a long story short was able to get into his apartment and my dad was on the bed, oh oh wow, just laying butt naked. I got a lot of stories crazy, right, right, okay, water was flowing in the bathtub. He didn't even know I was walking over to the bed because EMS is there. They didn't go in the room. Police was there. They ain't go in the room. I'm the first person that got to go check my dad. Wow, I didn't know what I was checking. Was he alive or was he dead? I'm checking. I'm like, hey dad, hey dad. He looked up like huh, like hey, why didn't you go to work? He like I don't know. He just disoriented. So we took him to receiving, had him checked out. They like he had a seizure. He had a stroke. Now they let my dad out by himself at 5 am in the morning, so I lost my dad for 12 hours in the city of Detroit.

DANISHIA: 25:55

Wow.

CATRINA: 25:57

I had to find him, my first missing person report. He happened to just walk into work Like hey, we got your dad. I'm like, thanks, let me come and get him. Wow, he had another one Back to receiving. They let him out again.

J SMILES : 26:17

Because they're thinking it's just a simple seizure that maybe he can manage, or that he knows what's happening. They're not seeing a connection to dementia.

CATRINA: 26:27

Let him out, lost him again. I'm like I told you not to let him go. Like, call me when he's released, I will come pick him up. That's right. They like we didn't have to do that. I'm like what you mean? Something going on. I told you I lost him before he, you know, check him out. They like I have no paperwork, no power attorney, no guardianship, none of that. We could let him out.

J SMILES : 26:51

I'm like this cannot be legal I'm telling you, you can't let him out I'm like, please, they like we can't we ain't gotta listen, right, all right.

CATRINA: 27:03

So my transition process into moving my dad into my home was getting this paperwork together. How can I safely get this paperwork together? So unfortunately, I had to put my dad in a nursing home. There's one. My son is 11 now, but he was 10 at the time. He just lost his dad. I'm his number one provider.

CATRINA: 27:28

Yes, I had to figure this out absolutely you gotta take your time I didn't want to put my dad in a nursing home, but I knew I had to have him in a safe environment, why I took care of what I needed to take care of. Yes, the nursing home, just like he, just like he was saying was not, or she was saying it's not a good environment for him. I went on a Wednesday. He had on his Adidas shirt, his different outfit, come back, looked like. I just never left him. Wow, same clothes, same bed, just laying there. I there. I said, nah, this ain't it either. I gotta get you up out of here. I got these paperwork I they helped me get that guardianship. They like what you doing. I'm like I'm taking him home we're not living in here like.

J SMILES : 28:17

I tried it. I gave y'all a shot, you failed now what you gonna do.

CATRINA: 28:21

I'm gonna figure do.

J SMILES : 28:22

I'm gonna figure it out. I'm gonna figure it out.

J SMILES : 28:26

That's a Having this conversation with you all it seems to be a major commonality is figuring it out, figuring out on the fly what you gonna do, how you gonna do it because someone that you love is in distress and can no longer do for themselves, An independent person who, as far as you knew you know they were living in another city, you know living very independently, doing a lot of stuff on their own, living with other family members, and you're like well, of course, if you all right, you live in with my siblings, but then it wasn't the case at all. I want us to think a little bit about how other members of the family or friendship circle maybe doesn't even really consider themselves to be caregivers. Right, they may help you a little bit, or they may have done small things for you. Maybe they go pick up medicine for you sometimes, or maybe they go to the grocery store for you sometimes.

J SMILES : 29:44

We're not talking right now about the people that don't help. I got some of those. We're not talking about them. We're talking about some of the caregivers, some people who assist you along your caregiver journey. There may be someone your neighborhood, somebody at your church that just asks you if they can help. Has that happened? Has that been a part of your journey at all?

RODNEY: 30:13

Well, yes and no, yes in the beginning, but you know they say the lasagna stops coming after you know many years of journey. You know they do come in the beginning but one by one they stop. So my, in my experience, the people you know, most important people in my life and my wife's lives are the caregivers who show up every day, morning and evening, and I'm fortunate to be able to have them come in my house and I call them Sherpas. You know, sherpas are Nepali people. They help climb people, mountain. They carry the load, they plan the route, they put the ladder, they put the ropes and they carry almost their body weights you know, weights in luggage. So my caregivers, they are my Sherpas. And so those are my everyday show up people. There are friends who do help, there are neighbors who do help, but not everybody has their own issues in life and I can't expect that they drop their issues and come and take care of my issues. But when the need comes they do show up.

J SMILES : 31:25

I understand. I understand Agreed Mine will be agencies like DAAA.

CATRINA: 31:34

Picked my dad up from the nursing home, I looked online and seen that Triumph Church had a dementia boot camp like just a conversation with caregivers about dementia. I was like this looks like something we should check out, dad, that's right. And we went in there and I met Miss Laura and I got everything from D triple A that I needed to support my dad and along this journey. They call, they email, they check, they give me self-care days. They're like hey, we got this going. I need you to come on like this as well. They like could you speak at this engagement? No, because I'm 100 grateful for that agency. They. Without them, I don't know where I'll be right now.

CATRINA: 32:25

Um, my dad also goes to um daybreak so he gets some time. That's a dementia daycare center. I want to call it adult daycare, but like where you taking my dad to adult daycare?

J SMILES : 32:39

I struggle with that too. I also struggle with saying that my mom was wearing diapers. I don't know how many of you felt like that. I was like where is the better word for diapers? I just want to call them panties still. I was like she is wearing panties with some cotton in the middle Cotton panties.

CATRINA: 32:57

Disposable briefs briefs.

KC: 32:58

Yeah, that's what I told my mother to get her into it. Mama, these are disposable underwear and she was okay with it like that right.

J SMILES : 33:04

I was like I can't. She would never put on diapers if I told her these were diapers. I can't do that to her, yeah right but also my son.

CATRINA: 33:13

Um, if I had to put a person on, it is very, very helpful. I push him a lot because he's young and I'm like, hey, I need you to understand this is what we're doing, this is what we got going on. I need you, hey, could you grab papa's breakfast for me, because I need to go do this. Can you make sure that papa took his meds? They already set up. He's so young and he's getting it, and it's a struggle because he's in sixth grade. But I'm like I need you to understand that this is going to be you one day taking care of mom and I want you to be able to have all the tools you need to take care of me and I need to know that you're not going to put me in a nursing home.

J SMILES : 33:53

You're like because I already saw that and I don't want that. No, absolutely saw that and I don't want that Absolutely. So I would consider well to me that your son is also a caregiver. I know there's so many people in our community or globally who don't necessarily attach the title caregiver to themselves unless they're the primary caregiver, like yourself, or they're the person who is in charge of the doctor's appointments or ordering the medicine or making the visits at the facility. But I believe if anybody is pitching in like what's your son's name?

J SMILES : 34:28

Denim, denim, he does, he cares for me. I think Denim is doing it too, but I see you all were shaking your heads.

KC: 34:37

It's my case? No, no one. I got you the first two years. I didn't know what was going on, so I cried, and I never cried for nothing. I just bid my father a couple of days ago and I couldn't even get a cry, got him to cry, but I cried for two years because I didn't understand him. Someone pointed me to dementia Dr Paula Durenstein, universal dementia and she pointed me to Detroit area aging, and so those two has been a part of my life through the rest of my journey and that's where my help come from.

J SMILES : 35:12

But outside of that, it was a big goose egg. Now, listen now listen, if you, if you said you couldn't catch a cry at your daddy's funeral and I hadn't heard catch a cry in a minute, I gotta tell you I'm from Alabama. That's a good one. Catch a cry. You couldn't catch a cry, but then for two years you cried. I understand the depth of what you're trying to say.

DANISHIA: 35:34

That's pretty major Katrina oh right, well, it's been me and, I would say, my husband. He's been a big support because he's been there to support me and to help her in certain instances. And outside of that, I've just started with DAAA for her. So we're trying to get her in a groove of, you know, having other caregivers for her. So we're right there, we just started this, but other than that it's just been us two.

J SMILES : 36:14

Does your husband consider himself a caregiver?

DANISHIA: 36:17

Probably not.

J SMILES : 36:18

Probably not.

DANISHIA: 36:19

Yeah, what's his name? Mario?

J SMILES : 36:24

Mario, you're a caregiver and thank you for joining this band of small but mighty warriors across the world. Now, with the Parenting Up community, we lead with levity. We believe that humor heals. I'm a comedian because I was a caregiver first and that thing was dark and heavy on my soul. It had me making some bad decisions, some of which are very unholy, that I'm not going to talk about on here because I don't know if anybody in here is real holy and I don't want y'all to think I'm going to burn in hell.

J SMILES : 36:59

But you could probably guess what some of the things I started doing might have been so comedy ended up being a healthier outlet. Can you share some of the humorous things your loved ones have done throughout this journey? I know my mom has done some really silly things that I can just look at her and laugh Like. One of them was that she tricked her caregiver into thinking she had an appointment with a judge. Now okay, she's fully retired on three dementia medications. I've hired this caregiver to be with my mama at the house so I can go to work.

J SMILES : 37:48

My mother convinces this caregiver she has to go meet with a judge called Judge Jackson and she says well, jay didn't give me. The caregiver says, well, jay didn't give me an appointment. She says, well, she didn't know about the appointment. I have to meet with Judge Jackson and if you're not going to take me I'll drive myself. She was so indignant and emphatic that the caregiver believed her. My mama got dressed, grabbed her purse and said we don't need the address. I will show you how to get there. The lady believed her. They drive in all around Atlanta for two hours. The caregiver calls me in tears. I'm so sorry we're late, but do you know the address for Judge Jackson? I know the address back to my house. If you don't get your ass respect in my house with my mama, you're going to jail. You have stolen my mama. So that's my example of something where once my mama was home and safe, it was really funny because she told that lady the same story for like two hours. So the lady believed her.

KC: 38:58

Wow.

J SMILES : 38:58

Yeah.

KC: 38:59

Yeah.

RODNEY: 39:01

Well, I don't have a similar story, but you know, uh, not humorous, but like during the covid. You know, my wife is incontinent, that means she wears diapers and I need to change her. And every time I change I used to say I get free COVID test, smell test, so I didn't have to go for any other tests.

J SMILES : 39:24

I like that. That does count. That is very funny because you're thinking, if I can, if everybody remembers, covid was supposed to take away your sense of smell, so if he could still smell everything his wife eliminated, that was really wise. I don't know if I thought like that. I think I took way too many tests because I could smell everything my mama let out.

RODNEY: 39:47

Or you know, my wife would be walking pacing and she'll touch the floor with her. You know, band down and my son would say cherry picking time now. That's cute. Or she would bang on the wall sue me, bang, bang. You know because you know what I realized. Whatever phase you going through, you have to appreciate, because when she was banging it's annoying, but now she's not doing that and she's more quiet. You wish that you would.

RODNEY: 40:15

You know she would bang something and make some noise that's true so, whatever phase we are in, we have to just, you know, fully enjoy that phase, because we will regret, you know, when that phase is gone. We will wish for that phase. So you know, to catalog my experience and we talk about self-care, so I have found three or four different ways of self-caring. So doing journaling was a self-care to me, writing down my emotions, what I was going through. It helped me process my process and channel my emotions. And when I started writing, my son said why don't you write standalone essays? And I did, and ultimately he helped me produce this book which is my Journey with Sumi.

J SMILES : 41:05

Thank you, this is for me.

RODNEY: 41:07

Yes.

J SMILES : 41:09

Wonderful. You're going to have to autograph it for me.

KC: 41:11

Yes, I will Promise Okay.

J SMILES : 41:12

Yes, all right, thank you, thank you. Thank you so very much, okay, okay.

CATRINA: 41:21

Okay. So for me this entire journey is hilarious. To me I can't pinpoint one particular story, but for me and my dad I always tell when somebody asks how my dad is doing, I'm like this is a tour that we need to take on the road, because I'm like now I'm an actress, I can't have anger facial expressions, because then he feels like he's a burden and he's worried and he's stressed. So I'm like let me get dressed, let me put on my face, let me go in there and be Nisha, that's right, he's stressed. So I'm like let me get dressed, let me put on my face, let me go in there and be Nisha, that's right, not Denisha. And it's always hilarious Like my dad has an airtight, so that one's funny.

CATRINA: 42:11

He thinks it's a watch. Ah, but you're like mom, he like my watch. Don't tell no time. One day it's going't tell no time. One day it's gonna tell me like, just put it on every day. That he puts it on every day. He remembers to put his air tag on every day. But again, he's a man, yeah. So he was like I just want to go take a walk. I said, okay, go ahead, take a walk, because my dad has the air tag. He has an iphone so I could track him. I call him. He won't answer the phone. I'm like I'm trying to find you answer the phone.

CATRINA: 42:46

Man answer the phone. He talking to my brother hey, it's nisha on the other line, but I ain't gonna answer the phone. But I don't even know where I'm going. I'm like answer the phone, find where you at my brother telling me like yeah, he over such and such. I'm like just tell him to answer the phone. Where you at my brother telling me like yeah, he over.

CATRINA: 43:01

Said, just tell him to answer the phone he like he gonna answer that phone cause he don't want you to know he lost he know he's like if I answer, she gonna ask me where I am and where I'm going and I don't have an answer.

J SMILES : 43:14

At least he's clear enough to know I'm about to get in trouble and who don't want? Nobody want to get know. I'm about to get in trouble, yeah, and who don't want to get in trouble? Nobody want to get in trouble. Listen. Thank you all so much for this. I know I've enjoyed it. Have you all had a good time?

DANISHIA: 43:30

Yes, yes.

J SMILES : 43:32

I have always enjoyed my time in Detroit, but hearing from the four of you a little bit, I know we ain't even scratched the top of the surface. I know about this caregiving journey, but thank you so much for sharing. Allowing other people to know a part of who you are and something about your loved ones is invaluable. So thank you so very much, and we can't wait to see what happens when the world gets this episode and we let you know how they respond.

KC: 44:04

thank, you thank you.

J SMILES : 44:05

So listen y'all. This is a wrap for episode one. Y'all gonna see about episode two real soon. Hey, what's up? Parents and up family? Guess what? Have you ever wanted to connect with other caregivers? You wanna see more behind the scenes footage? Wanna know what me and Zeddy are doing? I know you do All things. Jsmiles are finally ready for you, even when I go live. Uh-huh, do it now with us on Patreon. Join us in the Patreon community. Catch everything we're doing. Visit patreoncom forward. Slash JSmilesStudios with an S parents and their family.

J SMILES : 45:06

We're gonna do this episode support a shout out a little bit differently. Why? Well, first of all, it's my podcast and I can do whatever I want to, but for real. For real, it's because we are on tour in detroit and you know when you're in the D, you got to mix it up, cook a little differently. So rather than you throwing us the supporter shout out, I'm going to pop one back your way. I have my girl, yolanda, hello, and she has been caregiving so much she can teach me a thing or two. Now, y'all know, I feel like I know a lot about caregiving, but my girl Yolanda, she's been caring for people since the Ruta and the Tuta first met, so tell us about it.

UOLANDA: 45:47

So first it started, my son was one pound nine and a half ounces, 99 days early. He had cerebral palsy. He was in hospital 77 days, came home before his due date. So he's in a wheelchair, has cerebral palsy, has an imaginary girlfriend. You know it's a whole big thing. Then my mother had dementia. She lived with me for 12 years. My dad had three strokes, was in a wheelchair, so I was taking care of all of them collectively for 12 years. And then my son is still with me.

J SMILES : 46:16

You had all three of them, mm-hmm. Okay, I can't even get it out Simultaneously. This has been good. This has been good Y'all. This is how we do it. This is how we do it on Parenting Up. You know, this is how we do it in Detroit. So best way to end this is with what up though the Snuggle Up. What up, dog, the Snuggle Up. Today, this episode, you only get one.

J SMILES : 46:46

It was plain and clear to me, very obvious all of these caregivers the most central theme. They at first did not realize they were already caregiving. They were checking on their family members, calling brothers and sisters checking on hey, is mama okay? Is daddy okay? But they didn't consider themselves to be a caregiver until that person was 100 percent legally their responsibility. I find that very intriguing. So all that other time when you were just checking on your LO and making sure they had what they needed, you weren't really being a caregiver. You see, to me that's a part of us building our brand as a caregiver. More people in the world need to just go ahead and say, yep, I'm a caregiver right now. Like Mario Katrina's husband, he is already a caregiver in the support he's providing his wife and his mother-in-law. So that's it Real simple. They were caregivers way before. They got them legal papers that said they were Thank you for tuning in.

J SMILES : 48:14

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, subscribe, come back. That's the way you go. Know when we do something next. Y'all know how it is. I'm Jay Smiles. I might just drop some hot in the middle of the night.