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March 29, 2021

I look, talk, walk like me but I don't feel like me: Caregiver Confusion

I look, talk, walk like me but I don't feel like me: Caregiver Confusion

J Smiles takes a big trip to Washington, DC to celebrate the 100th anniversary of Delta Sigma Theta Sorority, Inc. She is elated to take a such a meaningful vacation. A newbie caregiver at the time, J is looking forward to reclaiming free time and fun with college friends.

She  is shocked when the umbrella of love and joy causes a revolt in her spirit. She is emotionally paralyzed and needs to figure out the triggers. Is this an one off or a pattern for the future?

Smiles' travel companions are stunned and concerned... and J is scared because she cannot believe her response either. Listen for the stimulating steps of a dream trip where everything went according to plan except J's feelings. The epiphany, AH HA, occurs after she gets home and puts the puzzle pieces together.

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J Smiles:

I was in Washington DC for the centennial celebration of my sorority, Delta Sigma Theta Sorority Incorporated, a public service sorority. You don't have to know much about Delta, but I'll just say this, membership has its privileges. There are over 300,000 of us across the world. Some members include Cicely Tyson, yeah, Aretha Franklin, Alexis Herman. Keshia Knight Pulliam, You know, our as Rudy from The Cosby Show, US Secretary Marcia Fudge, Angela Bassett, the poet Nikki Giovanni, Natalie Cole, Roberta Flack, Leah Teen Price, Soledad O'Brien, Lena Horne, really cool, groundbreaking women. Anywho 1000s of us from all around the world, we're descending on Washington, DC, because it's our 100 years and how cool is it to be alive when the 100 year milestone of something that you belong to, actually occurs? The sorority was founded at Howard University, y'all I'm a Howard alum. You don't have to go to Howard to be a delta, but guess what, I did have the honor and distinction to join the sorority while I was at Howard, so that's like double dipping in deliciousness. Those of us that went to Howard and became members of the sorority at Howard take that stuff, so seriously. Just imagine if all of the founding fathers of the United States, everybody who signed the Declaration of Independence and the Constitution, imagine if all of them were from one city in the United States or went to one college? Can you imagine how all of the alum from that college or everybody born from that city would feel, it would be a little extra collar popping, you know what I'm saying? So I pulled myself together, even though I'm only a year in to this catastrophe of Jocko being dead and Zetty losing her mind, I mean, that's the truth of the matter. That's you know anyway, y'all been rolling with me. You know what this podcast is about. I get my hair did not done did, that's another whole level. That means it is colored, I have layers, I have a new hair cut because I'm gonna be on the scene and I'm going to show everybody that I'm doing okay. My nails are done. I go to the mall, get me a stylist people, #noIGJeremy, he has since blown up, but he's a big deal, I can barely get him on the phone. I get outfits. Sorors flew in from five other continents. We were celebrating for like five days. There were breakfasts and brunches, and pre parties and after parties and pre pre after parties. There were private parties and group parties and public parties. We took over Washington DC and I RSVP'd to everything and I had a new outfit for everything. I had flats and I had heels. We were found it on January 13 1913. So I had winter clothes. And I had layers because if I got inside and got hot, what I had to be able to take everything off, so we could start and stroll. If you've seen Beyonce homecoming, then you know what I mean. If you haven't go look on YouTube, we would autumn kind of moves everywhere and I had to be ready because I'm Jay and I'm serious about Delta. Y'all I made it to the pre parties, but every time I went to stuff, I noticed myself falling further and further back from the center of the crowd where I would normally be, more and more toward the fringes. I started going later to the events and leaving earlier. And the Cinderella affair if you will, was going to be at midnight on campus, right where our founders stood. Imagine being able to stay in where you knew the people who founded the most important organization that you belong to actually stood. We knew exactly where that area of dirt is on campus and all of us we're going to be right there to seeing our most sacred songs at the strike of midnight on January 13 2013. Like 1000s of us, drones, and videos and tears galore. My phone is blowing up, got all these text messages, WhatsApp, everything. I'm in my hotel room, I'm getting dressed, I'm in the mirror, hy hands start shaking. I'm putting on lipstick, I'm looking like Angela Bassett and what love got to do with it, I started crying. Ah I'm shaking 1030, 1045, 1115, 1130 Jay Where are you? Hurry up, hurry up it's getting close. We're trying to save a space for you in the circle. Okay, we get in a big circle to sing. I can't go. I cannot go. Parenting Up- caregiving adventures with comedian J Smiles. It's 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 Alzheimers awareness on anyone and anything with a heartbeat. Spoiler alert- I started comedy because this stuff is so heavy, be ready for the jokes. Caregiver newbies, OGs, village members trying to just prop up a caregiver, you are in the right place. Hi this is Zetty. I hope you enjoy my daughter's podcast. Is that okay? Today's episode, I look talk and walk like me, but I don't feel like me, a caregiver's confusion. I was shocked and confused by my own actions. I cannot stress enough how much that centennial meant to me. From the moment I became a delta. The thought of being at the centennial on campus, I have to share with you all, I'm a moment kind of chick to be in the throes of the crowd. When the roar happens, if it's at a concert, if it's at a sporting event, any of that I always choose to be in the crowd versus the VIP or the skybox. In 2008, I was in Denver as a part of Alabama's delegation for the Democratic National Convention. I was a part of a group that was assisting the King family, Martin Luther King Junior's family. I will not get into the specifics, but needless to say, I had access to a big fancy box. I squirmed my way down to the floor, so that I could be amongst the crowd of what they would call the regular people, the common people stopping all around, outside to feel the revelry, the heartbeat, the screams, and the cheers when then Senator Barack Obama gave his speech. That's the kind of person I am. Listen, a VIP box, red carpet affair absolutely has its place in J Smiles life. What I'm saying is, if there's an historic moment, put me outside with the people. Zetty is a delta, this thing runs deep. Obviously I didn't take Zetty with me, but being there for her, the sentimental value of that mattered to me. I paid for it. All these outfits I paid for. I charged my digital devices, my camera, my night flash, my GoPro. I was ready and so many sorors that I had not seen at these individual events, we gone see everybody on the yard, which is what we call the big grassy area on campus where everybody would gather. How to hell could I miss that that's like the place to be? All of this separate stuff didn't really matter. That's like going to the tailgate, but you don't take your ass to the game. And the text messages and the phone calls, I couldn't answer them. I didn't know what to say. The hotel phone was ringing, cell phone was ringing, and I'm getting emails, Whatsapp messages. So at this point, people are worried about me. On the one hand, I understand that they are worried, but I was so broken. I was crying. I mean that snotty cry where you can't really read anything, because tears are flowing that fast and furious. You try to wipe your eyes and you like is that smile or is that a tear? I recall thinking girl you are a mess, it's been a year. Pull yourself together, how damn long do you need? Shit. A major life tenant for Jay has always been if you cannot do it later you got to push all in right now. Zetty and I have always lived by it. It was a difficult decision to make, which one can you not do it later, duh, I cannot be alive for the third centennial. I mean, the second Centennial, the doubletennial I don't know what it is, bi tennial, the Bicentennial and I not gonna be around for that. You can't do that next year, it's over. So then I was laying there beating myself up like, idiot how the hell can you not make this and then I go through the whole see there you shouldn't have gone to all other pre stuff Jay, pre this, pre that, brunch hanging out. You wore yourself out. You doing too much. #teamyoudoingtoomuch. You should have just gone to the major celebration on the yard at the strike of midnight. That's the big thing where everybody is going to be with the big major drone photo that's going to go viral. Your monkey behind at the hotel, duh. When I tell you I did not see that coming, so serious, didn't see it, no part of it. While I'd been depressed before,I had definitely faced emotional walls, trauma, calamity, I didn't see that, I was like, Man, this is gonna be all positive. Nothing had gone wrong on that trip. All my outfits fit, okay I was looking amazing. My hair was doing what it was supposed to my girl, Hair is She Portia, also hot poppin, she did her stuff. She gave me all the hair products and told me how to make it last. It was the winter so I wouldn't have to deal with any humidity, snatch back fight for my curl pattern. I was wearing my hair flat iron at the time. Everything was going great. My liver had not decided to punch me in the face. Like literally it was only any emotional monster that decided in the mirror, No Jay what you not about to do is go and spend all night in a sea of love. Like what's wrong with a sea of love? Like how could I not go at me in 1000s of arms of love. This is going to fuel me for weeks and months and years to come, that's what I thought. Before I got to DC I'm like right if I get this, sorors are going to lift me and pour into my buckets and in difficult nights with Zetty and caregiving, blah, blah. I'm going to be able to remember this moment. We sing our songs and did our steps. I'm like crazy girl you're not even there to embrace the moment, but y'all, that's just how raw I was and I didn't even know it. That experience led me to coin the expression burned victim with my closest friends because I needed a way to explain to them when I was not emotionally capable of being around people even in a fully positive loving environment. I am speaking of a burn victim in an emotional figurative sense, I am not a burn victim in a literal sense, I am very sensitive to the difference. Individuals who have had to undergo bad extreme physical, emotional distress, I am not in any way, comparing my experience to that. I was desperate, I needed a phrase that was very tactile had a lot of texture and everybody would immediately grasp what I meant. You know how individuals who participate in aggressive sex, the kind of maneuver that could kill you, and they have a safe word, hat's how I ended up coming up with burn victim. I knew that folks would be there with me immediately and understand why I went ghost and how come I had to check out on them. Because they were upset once they realized that I was actually physically okay, like, my Uber didn't get a flat tire, or I didn't have food poisoning and they felt like I made a choice not to come. So it was what, we can't believe you missed it. Like we needed you here Jay, our group wasn't complete. That was the inference that I got from some people and I was trying to say, I'm not complete. The universe gave me the language of I'm a burn victim. As if, hey, I jumped out here in this air, thinking I could just run around and act normal. And I played myself. I got out here. And while I have this new skin on my body it'ss still real tender and it can't have sunlight on it yet. It's brand new skin, it's not tough yet, you can't touch it. I don't want a hug. I don't want you to put lotion on it. Because how do you explain to somebody you can't love on me too hard. You know I'm a hugger. I'm trying to tell my sorors that y'all were loving on me too much. I was trying to explain to my sorors how the pre engagements, let me know that I wasn't ready for 1000s of people and all that love in one place, but how weird is that? I knew that's where I was. I was just that raw in the newness of my caregiver responsibility because how the hell did I end up here? You know what I mean, like I'm all the way responsible for this lady Zetty, like if I mess up she could die. Whoohoo, who left me in charge her? Somebody needs to come be in charge me. So if I get her medicine wrong, she could check out here, if I don't feed her the right stuff, what, I'm sorry, are you telling me nobody is going to come and make sure that I am of sound mind at least on a monthly basis? That's not smart. I felt busted and bruised. And I had not been aware of my state. And that's what I want caregivers to think about. And I want those who are supporting caregivers to be aware of when a caregiver gets thrust into this world, initially it's very likely that you just show up to work. You didn't apply for the job, but all of a sudden, boom, there you are at work, reporting to duty, here I am, and then you're in it. You may not realize that you are two seconds from a breakdown. But something happens, you have your own version of the centennial in DC where you realize, uh oh I'm not okay, I've been dotting I's and crossing T's and executing, but I don't even recognize myself. And when that does happen thenthose around you need to immediately shut up and listen. And just because I might have seemed okay right up until that point, all right I'm not okay now and I know it and so I'm saying I'm a burn victim. That became my buzzword for my crew to let them know I was in that space that was exceedingly fragile. I didn't want their love. I didn't want their attention. I wanted to be left alone. Because I was so overwhelmed with my responsibility and the newness of my life that I needed you to just back up for a second. You could send a text message, you could send a box of chocolates, but don't ask me to respond and definitely don't get offended and don't come for me if I don't say thank you, or text back. When I was unable to show up for what was undoubtedly the most guaranteed enormous love fest that had ever happened in my life the strike of midnight on Howard's campus for our centennial, that let me know, Jay, you're not in a groove yet, sweetheart with this being a caregiver and managing daily emotions of life. You have to figure out how to balance the inputs and the outputs outside of Zety. Y'all, when I got back to Atlanta, everything and everybody felt overwhelming and too loud. Anybody, everybody, oh God. I mean, they probably were whispering, but it sounded like I was at a Rolling Stones concert back in 1972, when Mick Jagger was giving it everything he had, you know what I'm saying? People who care for me greatly wanted to get me out of the rut. All kinds of suggestions- Jay, let's go shopping, you're going to feel better; you need a vacation, a real vacation. See going up there to hang out with the deltas that wasn't a vacation because you were very active. You had to get dressed. You were going to all these events. You were hanging out, you were partying, you need to just go to a beach and sit around and do nothing. Hey, let's go out for drinks. You need to have your favorite drink, that'll calm you down, you will do a lot better then. Oh, no, no, I got it Jay, these are all different people suggesting what's going to bring me out of my rut. I got it Jay, you got to go out dancing. You know you love to dance, when was last time you've been out dancing? I can't remember. If you can't remember then it's been too long. You got to start living Jay. It's been over a year, Zetty would not want you living like this. She would not want you giving up this much of everything for her. Parenting Up family, this is where I'm gonna tell you that if you have kids in a room or people don't like cursing, you might want to either mute their ears or pause for a second. I'm gonna do a countdown 3,2,1. This is my thoughts on that last little diatribe. First of all, that was all unwanted advice. I did not come back from DC and asked anybody to help me get out of my rut. When I got back from DC, I realized uh oh, I moved to quickly. I wasn't ready for all I tried to do. Okay, Jay, I got it, cool, sweetheart. You know what I mean, like, you thought you were putting your toe in the water obviously you jumped in the deep end. No problem. Just get to the side get your ass out to pool and sit down. Man, everybody who offered some unwanted advice. This is where I thought- Excuse you, my fucking daddy dropped dead and my mama's mind walked away from her. And all that happened in a itty bitty little bit of time. I've never been in this predinky winky, so how do you know what I need? And sometimes shit I want to be lonely, Uber driver, y'all everybody around me was offering advice. The Uber driver, the lady at Target checkout line, Bank of America everybody was like you know, how are you? Ma'am? Are you okay? How you look? And I'm like, Oh, no, I was just having a tough time, my dad passed recently, I'm my mom's caregiver. Everybody want to jump into advice, I ain't ask for no advice. Hi, first of all, I need you to hush and just ask me paper, a plastic, regular language resumed. Parenting Up family, I had been faking the funk. That's really what I figured out. My life was so insulated, and had become so protected that I didn't realize how green my emotions still were. I had only been handling my father's estate, Zetty's medical needs, trying to figure out how to be a caregiver. And so then when I went to DC, let me tell you what that effectively did, all of a sudden, I was around a thump of people, which is the same as a gaggle, which means hundreds who knew pre caregiver Jay, They approached me and expected me to engage and act the way I did before I was a caregiver. And I didn't want to talk about being a caregiver. I was too new to it. I didn't have the language and I didn't want to, I didn't have when I say I didn't have the language, how do I say that? Okay, I didn't have the language to talk about being a caregiver concisely and I wasn't comfortable enough in my role to talk about it without bursting into tears, with how it happened, how abruptly my mom had succumb to the disease. Externally, I appreciated the fact that I was plucked into this environment where I was just Jay and they treated me like old Jay. That sounds too much like OJ like OJ Simpson, so I'm gonna do that over. I appreciated that I was in this environment, where I didn't have to talk about the sadness of my life so I thought. But caregivers, especially my newbies, this is the deal, once you're in it, it's a part of you. I was thinking, how great is this, I'm just hanging out with my friends from college and sorors that I've met since then, and we are catching up, we're celebrating. And I'm not talking about being a caregiver. I'm not talking about any of the responsibilities and heaviness and darkness of my life. Yay, I've escaped for a few days, but truthfully, I was living a lie. It wasn't a work conference. It was a very social, very personal, very tight knit group of women who knew me well, knew my mom, knew my dad; that's why it was a lie. And by the time I was supposed to meet everybody on the yard, basically, I turned into a pumpkin and the slipper didn't fit. And I was unable to meet it because I had not been true to what my life was. And I didn't have the language to explain it. I didn't lie on purpose. I didn't even realize what the hell was going on. You know what Imean, they didn't know to ask. No one knew that my mom had Alzheimer's. Individuals knew that my father passed. Absolutely a ton of sorors said, Hey, Jay, so sorry to hear about your dad, they gave me a hug, and I said, Thank you so much. I didn't double down with girl let me tell you what else happened. I wasn't speaking about my mother and I talked about why I didn't do that in episodes two and three, so you all know about that. But it was a mess, the metamorphosis within started without me , isn't that crazy. The spiritual shift was doing its own thing, thank goodness, it was. So happy it did not wait on me. Apparently I was new, yay, and shouldn't I be and for the family and friends that needed me to be the same way they eventually caught on. And the ones that didn't, I'm not as close to them anymore and that's just fine too. I'm not the previous me. I'm also not the me from junior high or high school and I shouldn't be her either. Right, I've lived longer. I've learned more, thank goodness I've grown past that chick. I mean, she was all right, but Lord she definitely had limitations. Caregivers, we have to know our own limits. Nobody else is going to learn that for us, and nobody else is going to protect us. That's a big deal. Of course, we are protecting our ellos. We know their medications, their sleep schedule, doctor's appointments, rehabilitation, exercise, so on and so forth. But whether you need a vacation on the beach, or alone time to read a book, or if you need to go out with friends and have a glass of wine, you know the difference. And if you don't know the difference yet, I strongly encourage you to check in with yourself and learn the difference. What kind of breakthrough you need, rejuvenation can come in so many forms. I thought going to the centennial will rejuvenate me over night. Like it would catapult me to the stars and boom, I would be back to Jay. It actually took me backwards. It was too much too fast. I almost overdosed on goodness and like who the hell would have thought you could have too much goodness. But that is just how raw and crazy the world of being a caregiver is, that's my perspective. I told y'all I would keep it honest and I would just share with you my journey. After that happened, I said well hell, if I took a L, l equals loss from too much love, I have to be careful when something is too heavy. There have been multiple times where I actually had to take a step back when people that I love were experiencing death in their family and that hurt. It hurt me to say because prior to becoming a caregiver, I was that chick, I was the crisis chick. Everybody knew it, call Jay she knows what to do. I actually designed funeral programs. I told y'all I have a PhD in hospitalization. I mean, it's self appointed, but I know how to do that. I know how to do doctors and hospitals. I know how to do funerals. I can't sing though. There have been people that I'm extraordinarily close to that out like I can't come to the funeral. I cannot help with the program. I cannot even help in the hospice and the decline of your loved one. I can't I, you know what, don't call me. I used to be the chick that said hey, call me at any time, 2,3,4 in the morning doesn't matter. I'm also a night owl, so I can function on 2,3,4 hours of sleep. So hey if you are struggling overnight, because your loved one is just having a tough night or if you are just falling apart because you know that your mom or your husband or your child, your best friend; hey're suffering and thye may not be here long, just call me. I'll just sleep on the phone with you. I will sleep while you're crying. I'm that chick and I've been her for decades, not anymore. As a caregiver that time I'm like yeah, you know what I mean, whoo, sure hope you find somebody cuz I ain't her. Sometimes I can, sometimes I can't and that feels tripping too, right? This week, Paula might call me and say hey, Jay, I need to talk to you....boom, boom, boom. I'm having this problem, you know about my mom. Y'all I might be able to go all in with Paula, me and Paula might be able to chat for six hours, I can give her everything. And maybe I ain't talk to Paula for a damn year, but she catch me at a time when I'm full and I have the energy. Two weeks later, one of my favorite cousins could call me and I'm like yeah, I ain't got it. That kind of fluctuation, that used to make me feel like I was fickle and not being a good person. I was like you gotta do better than this. Like you can't like this isn't right. I mean Paula os cool, but I that's your favorite cousin, how you going to give Paula more than you give your favorite cousin right and then you like so ahhhhh. Now I'm pushing myself to give my cousin more than I have and I mess around and then the next day, I'm not able to give Zettywhat she needs, then I end up hitting the wall, then I got a migraine. I'm just saying how fast stuff can unravel as a caregiver, if you're not aware of your own parameters, your own emotional parameters, and who gives a flip if they make sense to other people. They're your parameters. It's your life. It's you and your loved one. Besides let me tell you something else, lean in this a secret. Stop telling people how much you did for Paula, versus how much you did for your cousin. If you don't tell nobody then people can't be keeping score, on who got what. Had to figure that out the hard way to. So now I just tell everybody, yeah, I don't have the energy to do nothing for anybody except Zetty. So that way, nobody's trying to figure out where they fall on your priority list, isn't that a mess,grumpy, but trying to figure out where they are on the list. Zetty is my whole list, Zetty is the whole freakin list, there is no more list. The whole list is Zetty, crazy people. Once I became a caregiver, any time I tried to lean into pre caregiver Jay and meet those expectations of others, those emotional, intellectual, spiritual, physical expectations of what I use to be it never worked out. I mean, never. I didn't want to tell them you know I can't do that because I'm a caregiver now and let me run the list of how my life has changed. Because then you have to hear the people say, ah man, you talking about that again, right. Some version of Jay is not fun anymore or she's always talking about being a caregiver or she is complaing again, she doesn't have to be a mama's caregiver, she could just put her in a facility. And then I want to pop them in the mouth and who wants to pop people in the mouth. I don't want to walk around popping people in the mouth, that's no fun. So what I found the easiest thing to do is be the new me. I'm a new me. I've been a new version of me evolving pretty much my entire life. So now this is just a new me and caregiver is the most prominent hat that I wear. And if you're not cool with it, then we not cool either, yeah. The snuggle up- number one, determine your lingo. What's that phrase that let your caregiver crew know, when you are having a fragile moment, that limit where your emotional barometer is at the edge. Number two, determine your parameters by actually going out and living life. You got to try some things, shake it up a little bit. Yep, you might end up having your own version of a burn victim experience, like I did with centennial. But I'm sure happy that I've tried it. Don't allow fear of failure or embarrassment, or rejection to make you not try. Get out there. You're worth it. Number three, many experts warn caregivers about grieving our loved ones while they're still alive. It's a natural process because we see them that long slow death or recognize that we actually watch ourselves change over ton as we become caregivers. Give yourself that grace as well. Number four, join me every Monday night for a video broadcast, a bodcast. It's a video podcast, it's all about caregiving, but a completely different topic then we have here. Same title, Parenting Up in partnership with getvokal.com. Follow us on social media., Parenting Up has a presence on YouTube, Facebook and Instagram with unique caregiving content. 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 too. I'm a comedian, Alzheimer's is heavy, but we ain't got to be.