Embracing the Chaos: No means No

Ever found yourself caught in the unexpected whirlwind of caregiving on what you thought was a typical day? Discover how I navigated through night-before-appointment anxiety and carried the weight of overwhelming responsibilities, learning to manage them using personal coping strategies -- humor and flexibility.

Ever had an encounter with an obstinate loved one refusing to get in a car? Hear about my hilarious adventure of getting Zetty into the vehicle and to her appointment on time. You'll learn how patience, empathy, and a light touch can turn even the most frustrating situations into opportunities for connection. There's no caregiver manual, but with creativity in problem-solving, we can ensure our Loved Ones feel secure and loved.

Stick around as I delve into the mental coping strategies I’ve developed through my caregiving journey. I’ll recount the tale of convincing Zetty to get into a 2nd car and arriving at her appointment on time, despite numerous obstacles. You’ll find that perseverance and humor are lifesavers when caring for a LO. Finally, I wrap-up with 3 signature SNUGGLE UPs  reminding us all that it’s okay when things don’t go as planned. Subscribe on your platform of choice, share with a caregiver who needs a hug, and review on iTunes to keep walking this caregiving path with me.

Join Alzheimer's favorite duo for another journey of heavy reality sprinkled with love and laugher.

Chapters

• 0:00 Episode introduction - why?
• 3:00 Starting on fumes
• 18:04 Struggling to Get in the Car
• 28:20 Caregiving Challenges and Mental Coping Strategies
• 37:10 The SNUGGLE UP
• 40:46 The Challenges and Resilience of Caregiving

Transcript

J Smiles: 0:00

Y'all know I love Zetty. My mama is my reason for most things. But what am I supposed to do when love is not the question, when it is not enough, because little Miss Thang is like penning jello to a wall? Oof where my other caregivers at, my family caregivers, my unpaid, stressed out family caregivers You're doing it because that's your LO and you know they need you. You own fumes you already stressed. Then you walk into the room or you walk outside the house and you just need them to do this one little thing, just this one little thing. You've already done 10 million, gazillion trillion things that day or that night and you just need them to do this one damn thing so you can get on with it. That's what was happening. That's what was happening. It's like Zetty, I just need you to put your foot right there and get in this damn car. That's it. I've done everything else. I had somebody else do everything else. Get in on Parenting.

J Smiles: 1:44

Of Caregiving Adventures with Comedienne J Smiles is the intense journey of unexpectedly being fully responsible for the well-being of my mama. For almost 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. It's part of a lurch. I started coming because this stuff is so heavy. We made fun of the jokes Caregiver newbies, ogs, village members trying to just prop up a caregiver. You are in the right place.

J Smiles: 2:15

Hi, this is Zetty. I hope you enjoy my forces podcast. You got okay. Today's episode no Means no. Our global community is expanding. I want your feedback. Let's snuggle up. Send a purple heart, the little emoji to plus one 404-737-1449. Face your fears and doubts. New worlds will open up to you. Robert Kiyosaki, that is exactly what happened. Parenting up family, I had fear and doubt all over me, dripping off of me like I had just jumped into a swimming pool, popped out without a towel. See, let me back up. The night before is where probably everything went amok or awry. I was awake until at least four or five am. It was a long creative burst of energy J-Smiles, jokes, stuff for the tour, all kind of things. But as a creative, when that juice gets to percolating you got to roll with it. And besides, the best part of my creativity has always been in the middle of the night, 11 pm to 4 am. I am money. Jordan in June, Serena in July, Jaycee in the twilight.

Speaker 2: 4:49

Today's sponsor, J Smiles "Outside Been Open Comedy Tour Dates coming soon.

J Smiles: 4:58

I'm also working on this documentary around my sports collection, the Jock Michael Smith Collection. That's what my dad left me. I'm all emotional, you can imagine. I'm making jokes so I'm laughing and crying about the jokes and caregiving, and then I'm putting together stuff for this documentary because I'm about to go on tour. I got to get some footage, so my whole life is just going through and through my brain and I'm like oh snap, girl, you got to go to bed because Zetty has a doctor's appointment in the morning.

J Smiles: 5:37

Yeah, see, it was morning because it was the stroke doctor. All of Zetty's brain doctors know it has to be an afternoon appointment. So I'm going to go to bed. Daddy can't do nothing in the morning, but turn over. Do you hear me? Turn over and sigh? But this was the recovery from the stroke that she had. So, listen, I want to go at the time that they can take her, because this is the right doctor who saw her and they're continuing. I want to get the meds right. Blah, blah, blah. Ok, jay, go to bed. Ok, I wake up. The doctor's appointment is for 10 am. I get up. I'm supposed to be getting Zetty dressed.

J Smiles: 6:35

Ooh ooh ooh, we got to leave the house at 8.45. It's a 47 minute drive. Ok, for me that might as well be two days. Oh my God, I hate city driving, like stop and go Cars, traffic lights it's the worst ever. Now, if it's the highway and we're chatting, I got my conferrable top down or there's good music and I can put it on camera and put it on cruise, I can do that for hours. But this other crap like Morning commuter traffic where people trying to go to work and everybody's in a bad mood miss me with that.

J Smiles: 7:41

Oh, here we go, y'all. Why do I wake up at 8, 37? In a panic Like the people on the movies when they just heard a gunshot and they jump up out the bed? That's what I did. Luckily, team Zetty, the caregivers Switched early. Yay for me. I had enough wits about me the night before at around 10 or 11 pm to tell the night shift and day shift. Hey, y'all, hey, how about y'all switch a little early and y'all come a little early and switch a little differently than before? Oh, thank all the angels. So the night shift left around 7, 30 or 8. 8.00 am, which is not what would typically happen. It would have been a 10 am. Whoa, switch off, ok, hello.

J Smiles: 8:45

So when I walk in at 8 37 in Zetty's bed room and I'm all freaking out like, oh my God, we're not gonna make it. Zetty is sitting up Sipping her water. She is dressed. The caregiver is like, oh, we knew you weren't going to be ready. Wait, wait a minute, what do you mean? Well, jay, we heard that you were doing one of those all nighters. We already talked amongst ourselves and since you were doing it all nighter, we just got Zeddy ready. She's already had her breakfast, but a light breakfast because we didn't know what the doctors may need from her.

J Smiles: 9:37

Holla, if you hear me parenting up family Great is that to have team members to think ahead. They know me so well. They heard that I was doing it all nighter and that means I was going to be rubbish and trash the next morning. I said, cool, we're going to make it. Then. Well, let me go hurry up and get dressed. I ain't going to lie, this is the way I hurry up and get dressed. We going to the doctor's appointment, but hey, it ain't my doctor. They not about to look into my mouth or my who or squoze my tits. Therefore, I have some really large body wipes for when I'm camping and hiking, ok, so I don't even know if it qualifies for hitting the hot spots, to be true. Oh, I mean. So I did that. I brush my teeth, I use the makeup wipe for my face. I'm just giving you all the quick and dirty truth.

J Smiles: 10:45

I said I'm always keep it honest with my caregiver family. We are global and we are noble, aren't we? Ok, anyway, I said, hey, all right, give me a few minutes. And I said, hmm, I was like, wait, you know what? Zetty's car is in the shop. Ok, let me back up and explain what that means.

J Smiles: 11:15

Ok, so Zetty doesn't drive. Don't want anybody to think that Zetty's out there driving, and then y'all will be nervous. Anytime you are in Georgia or Alabama, people will say, oh, we can, we can get on the road because that is out here willing, nearly because Jay smiles and lost her mind. No, no, so there's a four door sedan that I own, that I call it Zetty's car, because the only reason I own it is so that my mother can be driven comfortably by me or caregiver, a family member, a friend, whomever needs to take her somewhere. The car I drive, that I affectionately call my baby, is a two seat or sports car. Well, Zetty does enjoy riding in it.

J Smiles: 12:06

But for this appointment I wanted the caregiver to go with us Because, just in case I'm talking with the doctor and I'm getting some deep down dirty digging into the questions and Zetty needs to go to the restroom, I want the caregiver to take her and make sure that Zetty is changed adequately and cleaned up. Very well, but I don't want to lose my time with the doctor. Y'all know how those doctors are. Ok, once you get hope to hope H O L T, hope to T A H the medical provider OK, let him go. Once you have them in your hands and your graphs in your eyeballs, I keep them right there and ask all my questions as if the Titanic is going down and is right now do or die.

J Smiles: 13:08

So the caregiver had to go with us. That means I need three seats. Zetty's car ain't here, oh my God. Oh my God, we're supposed already to be gone. So, hey, caregiver, can I drive your car? Oh, I don't have any gas. Oh, oh, oh, don't Me. Ok, no problem, no problem, I'm going to order a ride share, no problem, and listen, because what I'm going to do is take care of my mama. I go and order that black car. Yes, yes, I do, and I ain't racist. For those of you who may not do the ride share, we might not live in the United States.

J Smiles: 14:02

Black car on Uber or Lyft means a luxury vehicle, leather seats, new and a professional driver. You are guaranteed what I just said. I guarantee this strong, ok, because you know when you go get married you say to death I was part, but then you can't get a divorce. You know, when you go by yourself on, they tell you it's going to work for at least a year and it might not. You know, ok. So just I'm just telling you how they, how they say it, and that's how the ride share people say if you choose Black car, then you suppose to have top of the line cream and the crop. Ok, you face Little waste of the big behind. Shout out If you know your hip hop lyrics, you're welcome. Anywho, that's what I do.

J Smiles: 15:01

I order the snazziest Professional car to come and I paid a little extra to come, not now, but arrive five minutes ago, because I travel a ton and I want the best for my mother. I'm already somewhat of a premium user. Ok, we'll put it like that. And is it OK? All right, all right, jace Mouse, we're going to have a top driver there for you in a brand spanking new black, shiny thing in six minutes. Boom, I'm like, yes, not going to even be late. Y'all the car comes. I tell the caregiver OK, great, take it to the car, I'm going to get a few of Zetty's things.

J Smiles: 15:56

I've got to tell you all this, when Zetty is leaving the house. You cannot walk out of the house with Zetty and all of her things. It makes her very uneasy, like if you had. If I have my laptop bag and Zetty's bag of things like a seat cover or wipes and adult underwear, gloves and the medicine bag because we go to the doctor's appointment, I don't just have it written down, I take the actual bottles so they can look at it and look at all the milligrams and everything. If I have all of that with me, Zetty says Jay, what's that? I don't know nothing about that. It distracts her too much going on. Too many colors, too much noise, too much rattling. I'm looking for keys. So I have learned the hard way that Zetty needs to walk out of the house holding nothing With somebody else holding almost nothing to go, sit in the car. So I sit in them out there.

J Smiles: 17:17

Y'all go ahead and I'm going to get all the stuff, I'm going to put on the alarm and I'll see you in a minute. I get out there in a minute, which is probably more like five. Shout out to my line sisters, I'm a five. I get outside. Zetty, the caregiver and the driver are all standing on the exterior of the vehicle. The driver and the caregiver are sweating profusely and looking quite perplexed. Zetty is calm, with a very pleasant look on her face. I'm immediately rattled In two seconds. I'm frustrated. I'm not frustrated yet, but I'm trying to figure out who to even ask the question. What the? Who, the WTF, why are all the people standing outside? Because, see, the plan, is all of them supposed to be in the car? And then I wave to the driver and he opens the trunk and then I put all of the bags in that I just described. So Zetty doesn't see it and I get in the car and I give him a kiss and he'll be late, but everybody's outside the car. What the?

Speaker 2: 18:49

I'm like huh.

J Smiles: 18:54

And the driver's like I don't know, I don't know what's happening. I don't know what's happening. The caregiver says she won't get in. What do you mean? She won't get in? She won't get in the car. I'm like Zetty, that's huh. Come on, Zetty, let's get in. No, come on, baby, let's just get in. She says no, y'all. Now I will say this it is an SUV, but my mom works out with a real trainer twice a week. This lady is strong enough to take down a Sumo wrestler. We say Sumo in the United States and we're actually incorrect. It's Shwmo.

J Smiles: 19:36

I was over there, in that Tokyo, and I went to one of their matches. Let me tell you OK and aside is that's a whole presentation. It is so much revelry and pomp and circumstance for how those Gentlemen enter the ring. Ok, the pageantry, ok, it should be on Bravo. Yeah, some kind of fashion, somebody, something on what they were wearing and how they get in and how they say let the games begin. Uh, like, uh, Zetty, can we get a note? Nope, now Zetty's strong.

J Smiles: 20:35

I put her hand on the grab bar. She takes it right down. She does not even grip the bar, y'all, she will not keep it gripped on that. I say mama, just put your, just put your hand right here, and then I lift her leg. My mom does 50 toe raises, 50 leg lifts, 50 arm raises a day. This has nothing to do with the two days a week where she has this real trainer and this guy is like oh, I mean, he played college football. If you saw him right now you would think he still played professional football. He's not a game. She wouldn't keep her hand on the stupid grab bar. I'm like mom, just put your hand right here and then put your foot right here on the foot rest, foot rail. Nope. And then she raises and gives me a kiss. It's the sweetest. No, she doesn't appear agitated. So I hand all my bags to the caregiver and I grab Zetty's thigh to put her foot onto the rail. Come on, Zetty, just put your foot on the rail right here, right, and then we'll put her hand back up. Nope, she does not let her foot stay on the rail, she does not grab the bar. Okay, at this point it's about nine, 12. So we are dangerously close to being late for our appointment. And I'm stressing because this is the stroke people we don't even know them. I might be able to smooth the neurological, geriatric Dementia brain folks because we've been dealing with them for some years, all right, and they know that these stroke people don't know us and they might think that we late because we are at the Waffle House having brunch. No, okay, please, mama, huh, please, what baby. Zetty pats this man's car seat three times Boom, boom, boom and then starts to rub it and brush it in a circle.

J Smiles: 23:17

I don't know if she's doing a prayer, if she sees Lent, but it's as if she's having a moment and we're all just standing there Like what's happening? Is she becoming one with the seat? Is she trying to decide if the seat is okay, if it's sturdy? She's just almost petting it gingerly like it was an animal. Or maybe the way right after you, if you can make up a bed really crisply and you're proud of it and you're like, yeah, that's finished. After you get that top sheet, just right, and then the comforter, and it's crisp, you just take your hands across it. One last time it was like that's what she was doing.

J Smiles: 24:19

Now the driver is looking like, hey, are we done, are we finished? Either get your mama in this car or you're going to need to get you another ride, and I ain't mad at him. He hasn't said that. This is what I'm reading off of his face and it might just be what I'm feeling on the inside. The caregiver is saying I'm not going to be in the car. I'm not going to be in the car. I'm not going to be in the car, jay. I don't know what to say. We've been trying, both of us the whole time. Zetty doesn't do well with multiple inputs at once. It's never helpful when there are multiple individuals directing her.

J Smiles: 25:14

So, I go around to the other side of the vehicle out of the car looking like a turtle who is just decided to come out from a two year nap. You know how the turtle stretch, stretches their neck so long that all the wrinkles come on. You like, how much does a turtle have? I did that, trying to lure my mama into the car. All was like a pedophile with a kid and some candy. She gave me a kiss. I was like give me a kiss. Give me another kiss, eddie. Okay, I love you, I love you too. Can I have your hands, eddie? Eddie gives me one hand, but she does not move her body weight towards my direction.

J Smiles: 26:52

Three more minutes have passed. I'm looking down, it's like 915, 916. I'm like shit, it's not working. I've done my best. JG ain't Okay. I hug her. I'm like okay, mama, give me a hug, because I'm hugging her. I'm trying to just see if any of her body weight will lean towards me. Y'all you know how the leaning Tower of Pisa has just had that 27 degree tilt to it, but it will not budge or fall anymore. Apparently it was the leaning Tower of Zetty, because she was like I'm going to give you this little 27 degrees, angle over here to hug you because you're my baby. But I am not getting in this thing.

Speaker 2: 27:49

Today's sponsor is J Smiles Comedy fresh, curated content for corporations, clubs or keynotes live and virtual performances JSmilesComedycom.

J Smiles: 28:04

So then I made the executive decision this is over. I got out the carrier say well, what are we going to do? Are you going to cancel or are you going to try to reschedule? No, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no, no. This is not a regular update. This is the stroke people. I don't know what they're going to say. This was the appointment where they were going to determine does her medication stay the same? Do they change dosages? Do they add things? Because when Zeti had her stroke, they added four new pills, four. My mother never got four new pills at one time since I've been alive. These are that I know about. Let me say that that I know about.

J Smiles: 28:59

I was on the verge of tears, little sleep, challenged, I put it that way, had not had breakfast, and then you got that good, strong Georgia heat bearing down on my neck and I didn't crawl to cross. Black leather seats All the doors are open by now because they're trying to see. Does anyone sit in the front? You want to sit in the back? The driver had been extraordinarily patient and kind, attempting as best he could to maneuver the seat let the seat back. Let the back rest back, let it forward. Let the booty part back, let it forward. What does this lady want? No one knows. So I said sir, I'm so sorry I'm going to have to cancel this ride. I will tip you and I will pay the cancellation fee. Look at the caregiver. And I said we have to drive your car. She said, but we're going to have to get gas. I said we don't have time to get gas, I said, unless you tell me your car is currently on E with the light on. I said is it light on?

J Smiles: 30:21

She said no the light isn't on. Hell, I'll drive to Hawaii if the light ain't on! I said well, we going to make it. I closed the door to the vehicle from the Lyft driver. He departed the driveway. Zetty said well, jg, jg. I said it's OK. Mama Grabbed her hand, started walking towards the caregiver's car. I asked the caregiver just to open up the car, let some of the hot air out. She did.

J Smiles: 31:14

Zetty always rides in the front seat. It kind of doesn't matter whose car it is. It's an unspoken rule that he walks toward the front passenger seat. She hadn't forgotten that part. I am A front seat chick, so I opened the front door of the passenger side.

J Smiles: 31:43

My mama Scoots right up to that car and we have a process for Zetty entering vehicles. She turns around with her back facing the car and we say Booty first, because if you don't do that, zeddy has a tendency to try To get in, putting her knee on the seat and then it can get real complicated and trying to make her Sit Evenly and scooch Comfortably so. But if she goes booty first and then swings her legs in, it doesn't hurt her back and her weight is evenly distributed, her spine is In alignment and we can go. This chick walks up to the car and it's ready. I said okay, Zetty, let's turn around. This heffa turned around so fast. I said booty first, booty first, plop. She swings her legs in and holds her hand out for the seat belt. I said W-T-H. Why are you gonna go get in this car so fast? I didn't say that out loud to her, but I looked back at the caregiver and I said what in the whole hell.

Speaker 2: 33:25

Why is she? She would what the what?

J Smiles: 33:29

Now okay, listen y'all. I tried to get her in the other person's car and so did the caregiver. You understand what I'm saying? The driver wasn't trying to get her in his car, it was the caregiver and me and she would not do it. No means no. Get to the caregiver's car. Zetty was cool with that. She set her butt down and got in and looked at me and smiled and I said mama, give me a kiss. She gave me a kiss. I put the seat belt on, I walked around to the back of the car and the caregiver threw up her arms and hands and was like child, the life and the times of team Zeddy. My mama never rides in this caregiver's car. Zetty rides in Zetty's car.

J Smiles: 34:23

Has she written in it once or twice in the umpteen years that this lady has been her caregiver? Sure, but not enough for some tremendous amount of soulful recollection. I said, Zetty, you are some kind of funny actor. Now, does it really really matter? Well, no, it doesn't. Except I was exhausted and I had a migraine loading Right, and so driving having to keep my eyes open in the bright, sunshiny daylight just wasn't the best. I had some water. I put the AC on. Did not have on her normal Motown music, because I got it, because I can't do the singing and the beat up. But I thought in the beats and I was like, but you know what the universe is going to get us there? I'm just, I'm just be calm, I'm just be calm and we're going to get there.

J Smiles: 35:48

And when we got there, we got there about 12 or 15 minutes after 10. And guess what? They say oh yeah, so your appointment was ready for 1030. We said 10 o'clock because you all were new. We just want you to have time to get here early to fill out some paperwork. I said what are you serious? Won't he will, won't she will want to do it. So, all in all, who knows why the hell Zetty wouldn't get in that man's car? I don't know, maybe it was the car, if it was the dude, if we just weren't supposed to be on the road during that period of time, maybe we would have gotten in an accident. Maybe we weren't, maybe that man would have harmed us. I don't know, I don't care. What I have learned in my journey In this decade plus as a caregiver is there are way more times where I'm covered and they are way more times where it has worked out. We were safe and we were sound and we got to the doctor's appointment.

Speaker 2: 37:05

And we weren't even late.

J Smiles: 37:10

The Snuggle Up: Number One, every moment with their LO boils down to two things, at least to me Wits versus will, willpower. It's mostly a testament of my own wits and willpower. It's not me versus Zeddy. She has Alzheimer's, very advanced Alzheimer's. We wouldn't be in this situation if she was healthy. So it's my wits and my willpower. How far am I going to let this go? How many minutes? How frustrated am I willing to get? How many minutes am I going to let this snafu or this interaction occur? It really is up to me. How much time do I have? Is it a doctor's appointment? Are you trying to go to bed? Are you trying to get your LO to eat? You decide, step back, take an assessment and make a decision. Remember this caregiving thing is a marathon, it's not a sprint. Number Two, have your caregiver power pellet. What do you mean? J Smiles, a motto, a coin, a quote, a song, something that you have memorized and you know, if you call it to your forefront of that memory, it's going to get you through any moment. You can't rely on your cell phone or some piece of technology. This has to be in your good old gray matter, your own brain.

J Smiles: 39:11

I have a couple. One of them is that I pledged. I'm a member of a sorority. We feel real good about ourselves. I pledged Alpha, alpha, sigma, theta Sorority, incorporated at Howard, and we did a lot and I feel really good about it.

J Smiles: 39:30

Depending on what I'm going through, I would just tell myself, like girl, you got this, you pledged, you're out of issue number five. You can do whatever If it's really really hard. And I got to do something that is physically taxing and I got to take my brain outside of my body and let you in the secret. I actually told myself I was lying to myself that I come from the people who survived the middle passage from West Africa. They survived slavery, they survived sharecropping and Jim Crow. That's a lot. So if I come from that, I can get through whatever the hell this is. You know, I dig deep. I say one of those. I do have some songs, but I'm not trying to get into that, I'm not trying to go too far. But those are the mental gymnastics that help to claim it yourself. Oh, it's funny, it's yourself. Number Three, you are human. You're a bad ass human because you're a caregiver, but you are a human.

J Smiles: 40:55

Mistakes happen and sometimes things just don't work out. In today's episode. Things did work out for us. There are lots of times where I do cancel appointments and have to reschedule. It's okay, everything will be okay. Take a deep breath, and by okay what I mean is time will pass, something else will happen and you will get through that as well. All right, you got this. *EPISODE OUTRO *That's it for now. Thank you for listening. Please subscribe for continuous caregiving, tips, tricks, trends and truth. Pretty pretty please, with sugar on top. Share and review it too. I'm a comedian, Alzheimer's is heavy, but we ain't gotta be.