J Smiles shares how the stress of caregiving created physical sickness landing her at the hospital. Plus, she walks you through her journey of grief as a caregiver for Zetty, who has Alzheimer's.
It was the middle of the night, I was in my room asleep that it was in her room asleep. At this point, she'd already had brain surgery. And while dementia was gripping her body, she was still alert enough and she had enough control over her bowels that she could be in the room alone. At night, I wake up to a tremendous awful pain and electrical buyer hot poker going up my spine through my neck into my head, it felt electrical. I just laid there for a second totally shocked by the pain. I never felt pain like that. I never had pain in that area. So I get out of the bed and I kind of have a wobble over to my bathroom. And I get Tylenol, Motrin, some kind of over the counter pain medicine, I get a sip of water. So I'm heading back to the bed. Now I've never turned the light on obviously I know my room. The way my bedroom is set up is my bathroom and three feet and then the bed and then three feet and then there's a window. When I turned to go back to get into bed, my body did a speed walk like you're noticing people in the Olympics that do the speed Walker, they were like what is that really a sport who gets to get a medal for that? Or like the people in the cartoons they start speed walking and the legs are moving so fast. You see, like smoke. That's how my body felt like it was moving. So my body sped past the bed and walk right into the window bow and I fell back like a plank like a starfish. arms wide open legs wide open just stared at the ceiling. Like what just happened? And yeah, as I lay there, I only had one go. Please don't let me be dying. I'm the only one here with my mother. That would mean she would find me She already found my dad. This cannot happen to her twice. Parenting of caregiving adventures with comedian J Smiles is the intense journey of unexpectedly being fully responsible for the well being of my mom. for almost a decade. I've been chipping away at the unknown, advocating for her and pushing all sarms awareness on anyone in anything with a heartbeat. So having a mother jobs, caregiver newbies, Oh, geez, village members trying to just prop up a caregiver, you are in the right place.Zetty:
Hi, this is very, I hope you enjoy my daughter's podcast. Okay.J Smiles:
Today's episode, my body's falling apart. Where's the duct tape? So I don't even know how much time passed. I know I dozed off to sleep. I'm not sure if I've been it if I technically medically passed out or something. But I know some time passed. And I woke up and then I had enough strength to get into bed. I got into bed and then I believe at around 10am DeWanda arrived because DeWanda as the only caregiver I had at that time. I let her in the ho se. I tell her what happen d. She is shocked and she's cared. I call my doctor my doc or tells me that I need to be een by the ER because it's t e weekend. Obviously they also f el that I shouldn't drive so I g t a ride to the ER and DWANE s there with Eddie. I get to the ER yo Guess what? Pretty much l ng story short and extern lly in case of a pinched nerve. I thought I was dying. They say yeah, you don't die but not today. But to do need to pull it together. J Smiles because your body is a wreck. Sweetie baby. This nerve is aggravated and your whatever around your spinal column. I'm messing up all the medical terms but it's inflamed and pissed off. You are too stressed. What do you have going on? That's what the ER doctor asked me when they did the test and look at all the X rays and the blood work and the blah, blah, blah and the feeling my back with the little fingertips. The takeaway was you need physical therapy and you need to chill. I say sir, how long do you have? You want to pull up a chair? What do I have going on? Get out of here. But that event walking into the window. I was not inebriated. I was wide awake, but walking into the window with zero control over my body. It scared me and when they told me that medically they thought that that was my body's reaction to stress. I said I was playing, I was playing so we're gonna do this over So what now? I'm sorry. Okay, nobody, like be losing control over their motor skills and walking and moving and pace of movement because of stress. I was very stressed. But I would try to go out like a sucker. Anyway, what ended up happening was I started counseling. Yeah, I actually got a counselor, a real psychologist, someone trained in helping you work through the overwhelming parts of life. There's five stages of grief. And to make sure I'm not messing this up. I checked it out on Web MD. com. So in the five stages of grief, denial is first, y'all I was so heavy so far up in that denial. Do you hear me like even though I got my mom the medical attention she needed, like with the brain surgery, and at this time, I'd had a caregiver and we would get her medication straight. I was still in denial because I had not absorbed the fact that J Smiles. This is your new life. Your mom was not just sick and recovering from say back surgery or knee replacement. This is it boo boo. This is the new normal, in a bad to get any better. Everything is going to get more complicated. And more intertwined. Ha, ha. But yeah, I wasn't thinking like that. My dad now was co raizy. Deep, even though I was going through the motions. Yes. My mother has dementia. Yes, she has normal pressure hydrocephalus. NPH she has a shot, I have to make sure that the shunt is operating properly. But it had not sunk in. This is it? I mean, but I don't even know what my body was trying to do. Like in terms of the stages of grief, there's my dad just dropped dead. We actually, okay, drop this off. Like he was standing. He wasn't standing. He was sitting in a club chair. So I guess my dad kind of late did. Okay, that's not funny, is kind of funny. My dad would laugh. He's probably laughing at it anyway. So I digress. My grief was so heavy, and so omnipresent. That I didn't know when what might be having this cousin, my mom or cousin or my dad, because my dad was physically gone. But my mother was emotionally and intellectually gone. So I was grieving. And who was that grieving? And was that grieving the loss of my life, right, because the life I had been working on and crafting was now over. I know, audit, and I didn't even have time to figure it out. It's crazy. How could tell you the disease that she had? And I could actually step through. Oh, yeah. My mother was forced into retirement. Yes, my mother can no longer be an expert, forensic accountant, I could tell you those things. But I could not emotionally accept the consequences of those statements. Right now is deep. So like, the second stage in grief is anger. You know, you just mad as hell about what happened and the pain that you feel over your loss just makes you be pissed off with life with people with whatever, y'all I never get to anger. I double down on denial. I ain't got to anger yet. We are umpteen years later, he and I met at my daddy daddy died. I'm not mad at God that he took my daddy. It was so crazy. And so fast. I was like, Yo, this is so much bigger than me that then I can't even try to get into the reason. Also, I have to tell you, my father always wanted to drop dead. Now go with me on this. This might sound a little harsh. This is not J Smiles. This is no hyperbole. This is true. My dad jack Smith always said to my mother, baby, I want to just drop dead. His words and I quote, it's about to be a curse. I don't want nobody wiping my ass. My mother that in her sweep was to be Honey, don't say that. Chuck, don't you say that would be my pleasure and my honor to care for you, honey, don't say that. Don't leave me like that. And then somewhere in the conversation, he would find me in house and say, baby jG Listen, if it looks like I'm not going to be able to wipe my own ass. You tell him the poor to plug. Yo, yo mama is going to try to keep me around. I'ma just be a warm log lady. But she's not gonna let me go and I'll be like that he really is this. You're gonna put me in the middle of this. Can you write that down? Can you put that in a wheel, but all bonk chasing the wheel we never found. So when I thought hard about it, I was sick to my stomach about how my dad left. But my dad left on his terms. He said he did not want any amount of physical or mental decline. He said it for years, I just want to drop dead and my mama hated it. And so luckily, the Holy Spirit allowed me to lean into that moment, very early on that moment of knowing my dad got what he wanted. Now, it sucked for me, but my dad got what he wanted. And the only thing I was really asking God to do was, listen, whatever it is you think you need me to do through here, do you need to be real clear, because there's a lot of cloudiness in my mind and in my heart, and I'm gonna need you to say it, say it plain, and said, umpteen times every five minutes, so I get it. So I can do your wheel. Because otherwise I could screw this up. And I want to screw it up. And I definitely wouldn't mad at my mom for losing her mind real talk like, oh, boo died. There are five stages of grief. And so the next one is bargaining. Now, I thought this was funny. When I saw that I was like bargaining, what does bargaining have to do with grief at all in the whole world? The bargaining is the part that says, What if, if only I had, I call it guilt and the look back or the regret factor? What if this had happened? What if I'd asked that bla bla bla bla bla, I'm gonna say that I shared the bargaining stage with what the night. Okay. I don't think my psyche could handle how much my life was really changing in the moment. It could not future I was present like a mug. But I will admit, I did have portions of should I have noticed something earlier. Now, a part of that is just the way I'm wired. I'm extremely observant. It gets on a lot of people's nerves. Maybe they are recounting a story about a trip they had or about a conversation they had with a co worker. And I want to know, okay, so were you sitting down or standing up? Were you in your office when the coworker came? Or were you all by the watercooler and my friends are like, Oh my god, what does it have to do with the story? but y'all, I don't even know. But if I had been present, I would have absorbed all of that. And that would be a part of my memory of that moment. So even when you're recounting the story told me you got to tell me, was it night or was a day that you have on a skirt? Did you have on pants? Had you eaten? Were you dude, okay, what did you already have bad blood with this chicken office? Right? So, super observant, which helped me a ton in my careers in corporate America, right in engineering and product design and law, all of that stuff being observant. It helps. So I'm thinking like, hey, this my boo thing, my main girls, Edie and I'm like, Jay, what did you miss? There's no way she just all of a sudden got mph in a lie. How did you not notice your mom slipping? This is yo lane. Like I really do. I noticed that I don't want to notice. You know what? I'm gonna give you an example. Alright, so my daddy job is not my biological father. Okay, but he is my daddy. Jacko and daddy. Were both married once before they met each other. For really weird, weird reasons. Alabama. And Alabama law, at least at that time, said that for Jocko to adopt me my birth father would have to accept it if I was under 18. But they get this. Alabama was so opposed to the idea of gay marriage that they didn't allow adult adoptions unless the adoptee was infirmed incapacitated, mentally challenged in some way. So then that means we didn't qualify. Right? How crazy is that? Anyway, so that is why for like 33 years, I think it was like the like that. My name was Janae Johnson. I found the law y'all while I was in law school. Alabama had passed an exception to the law that said adult adoptions are okay, if the adoptee is the natural child of the spouse of the adopter. It was perfect. I was like that is totally jG Jocko and Daddy, that's completely us. That is my natural mama jackals America's daddy boom. The reason why I brought up Jocko is to show just how intense and ingrained this idea of me seeing small details. My dad spoke a lot of places he received a lot of awards. He hosted a lot of parties. Often he would ask me to be the mistress of ceremony in the gratitude of the thank yous. It will be in tomorrow. Wife Yvette smiley Smith, thank you into my daughter Janae. And my mother asked my dad, well, why didn't you put Jays whole name on it? And I looked at my mom and I did the light. I put the finger up. I had never thought about it. But I instantly knew as soon as she asked him that question, I knew why he never put my last name. Because my last name at that time wasn't Smith. As soon as I got it, I called my mom to the ther room. I was like, Don't me tion it. I said for daddy to, to have to say and to my daug ter Janay Johnson is for him o have to admit publicly that he is not legally my dad, he do sn't feel that way spiri ually, or emotionally and fi ancially, this dude has been olding me down and he don't l ke it. He cannot do anything about it. Even though he's a henomenal lawyer wit a lot of connections. The law i the law. And my mama said, change. I never thought about hat. This is a talent God ga e me if I love you, and I dig ou. I can just observe and co nect real fast stuff that you re doing. And then in this argaining stage, I'm a little b t beating myself up on how di you miss this jG a no way you'r supposed to miss this mazett whatever you were doing in l fe wasn't bigger than watching er in the beginning stages of osing her mind. Anyway, I nev r came up with anything. And th n back in Episode Four hel . I'm not qualified. I talked a out there was a family member nd one of my mother's employees that told me Yeah, I did no ice a few things that seemed a ittle bit off with your mom. Tha part did not help my bargai ing stage because I'm thinkin well, if they noticed it, why did I notice it if they s w it? Oh, Jay Z. What were ou doing? Also? Now there's one hing that I can say that I knew, but there was a rationale. In h r mid 20s she was diagno ed with a debilitating bladd r disease called interstitial c stitis. I might have messed t up. But it's I see. Anyw y, it's a disease of the bladder where the lining of your bladd r ends up disintegrating, ike Swiss cheese. So then when you're in hits the bladder walls it feels like somebody just put salt into an open wound. And im gine your body is constantly mak ng urine. So then it's just a, it's a chronic pain. So i 's just a matter of if your ain is at seven or at 25,000. hroughout the day. My mom had ealt with that since her mid 20s probably about six to nine mon hs before my dad died. A new med cine came out that was supposed to assist people with I see. I 's called El Mirage. They told u we think that is a good candid te for El Mirage. And this articular physician had been w th my mom for decades and h had been extra really helpful. Dr. Simon Melman in Birmingham Alabama, and it always stayed on top of technology. So when he suggested it, you know, me and J cko like, absolutely, he told s that in rare instances, ther had been psychotic episodes, hort ones and that they fade way Zadie was on the L marohn. H r bladder pain was being managed extremely well, but maybe, y u know, a month month and a h lf in she did two or three rea ly unique things to my daddy an my daddy told me it was that he put on some tights and a shir and said she was about to go to work. And my dad said wear your pants and she said these are my pants and my dad was like that. Those are not pants that i anywhere though you know hat those tights and some o her women might wear that wha his long shirt over it, but you will wear them those tights more like stockings. And so he talked to her and got her to put the pants on. But because sh had just started taking l maroh . We call the doctor took off the elbow Ron and assumed hat those couple of unique thin s that my dad saw could be ex lained So then I had to grapple with it in the bargaining. I don't know. Yeah, it was the opposite of fun. I can tell you that it was the opposite of fun. So, you know, I can surmise that perhaps the El marohn exacerbated what was already something in the category of dementia. Right? Her body was already likely starting the stages of some type of cognitive decline and then the Elmer Ryan just kind of nudged it in an area but like I said, we were able to just chalk it up to if the medicine stop taking the medicine, let it wear off drink some water. That was always my grandfather's answer Jason war to go to bed, you'll feel better. I gotta tell you a substantial part of this bargaining area degree for me. was, what if I didn't do enough Google research? What if I didn't ask enough questions? What if it's not Alzheimer's? What if it's something that is curable? And what if somebody in Switzerland has figured out that beetroot juice or raw egg in toothpicks can cure Alzheimer's? But nobody in America knows it yet, but I can find it out? What if, what if, what if, whoo, that took me down some rabbit holes. My counselor called that ruminating. I would like you all to know that ruminating is unhealthy, though. So I remember thinking like no, no, I'm just thinking through all of the options, and I want to be thorough, it makes sure that I've uncovered every answer, and I've looked under every rock, and she was like, yeah, Jay, what you're doing is snuggling up to an unhealthy mind. And I was like, Oh, yeah, you know, I don't want to do that. I don't want to do that. So yeah, that bargaining slash denial, I stay in that stage for a minute. And then according to web, MD, the fourth stage of grief is depression. And while there are a lot of symptoms and signs of depression, I'm going to tell you, the two that were most prevalent for me, sleep issues of which I still have, all right, I am still on medication for depression, as I speak to you listening and being overwhelmed by the thought of what is now on my plate. And literally like, Can I do it? I want to it was never a question of if I had the heart or the desire, but like, Do I have the strength? Do I have the wherewithal? Do I have the mental power? Do I had a talent? Do I had a skill set? Do I had to know how to do a head hooks book? Can I get it done? I don't know. I remember going to Chanel and Christine, we went to a gospel concert. And Marvin Sapp saying my testimony, I broke down crying because I thought, I don't know if I'm going to make it through. I don't know if I've made it yet. And I and I just I didn't know I did. I didn't know if I had if I had it in me. And another huge thing that I think just kind of doubled up. The area of the pressure for me is I didn't want to mess up what my parents had accomplished. You know what I'm saying? Like my parents were both self made. They were individually self made. Then as a couple, they may imagine they both were revered in their professional communities. And they had done a good job managing their reputation, branding their resources, right at managing their assets, managing their relationships, I want to mess it up. I felt like my parents did the hard part, a child of the civil rights movement in 1960s, Montgomery, Alabama, she got chased by dogs, she guys spray with the water hose. She got beat with the baton by the cops. Dr. King was a real life mentor of hers. Her dad drove Dr. King around, I was like they live the hard life and figured out how to do this. All I gotta do is not mess it up. But I don't know. Anywho. So stage five is acceptance. Now I'm gonna tell you how it is. It took me over three years to squarely be in the stage of acceptance. Three years. It felt like three lifetimes. One of my dad's closest friends told me within like three months of my dad died. He said, Jay, I hate to tell you, he said but I've been through this with several family members that I love a lot. He said it takes two years of them passing before you can count on having a thought and a smile or where you think, Oh man, a day passed. And I didn't cry. I was like two years. No way. Oh, mg. He was so right. Except this for me took about three years. It took about three years to get there. Maybe a little over three years, not quite four, let's go with three 3.5 no five is mine up 3.5 years to get there. And I really know that period of time because they talk about in the world of mental health, acceptance being the final stage of grief. Because you start moving on with your life, you start to move forward and create new relationships, new memories, new activities, the way I know where my acceptance was, is because that's when J Smiles was born, where I had the energy, the bandwidth and the desire to create something from scratch. The mere concept that I couldn't fix my mama's disease, y'all. Oh, boy, oh boy. Now I begin to let that go. What I was fixing was I was fixing her quality of life. Right? So I could not cure the disease, but I could control who she was around the environment in which she lived. What she was eating. What She watched on television, what color lipstick. She had access to my mama likes a red lip. Through all of the stages denial, the double down of denial, cuz I skipped anger. The bargaining with denial, depression and acceptance, a tremendous constant was my mother's expression of love. I will be eternally grateful to the universe for allowing my mother to be able to express her love to me, it might not have come in words, but it's like, the sparkle in my eye the way she hugs me, or the way she goes. At the end of the hook, all of that would just let me know. All right, jG, you might not have all the answers. But what you're not doing is losing your to me doing this. During this period of time, I came to the point where it's like, hey, I need a new metric system. I had lived the life of you set a goal, you figure out how to do it, you ask a few people who've done something similar, you make it happen, might take a week might take a year, you get it done. Because my real goal was to make my mama not have Alzheimer's, so I couldn't do that. So I'm like, Okay, so what what is the other metric? How do I measure my work product? Yeah, it got so crazy of doing that bargaining and depression era. This is, this is what I came up with. I said, You know what, jG if that is alive, and you're not in jail, then you're winning? Is the deal. If that is alive, then I'm good, right? If I was dead, I ain't got no problems. But if I'm in jail, that's the problem. First of all, I'm afraid of jail. But even more important than that, I, I can't care for her. If I'm in jail, I can't care for her. I can't manage her affairs. When it when I thought it through through counseling and prayer and everything. I was like, you know, the two things that I need to really be okay. If there is alive and I'm not in jail, then I'm winning. That's what I came up with. You can't rush grief. You cannot rush the grief. Take your time people. Take your time. The struggle up, get up therapist, a licensed psychologist. It doesn't matter. If you think you are managing your caregiving responsibilities. Well, think of it, like downloading the software upgrade on your cell phone, your cell phone is working fine enough. But then when you get that software upgrade, man, that phone is working so much more efficiently. It's running faster. And then there's these extra accessories and bells and whistles that you didn't even know you were missing out on. Another snuggle up. Don't rush grief people. Why is everybody else moving along with their life? And I'm so stuck watching your loved one suffer from anything dementia related is a premature grief because they not even dead yet, but you're losing them before your very eyes. Be patient with yourself. Another snuggle up create your own customized new metric system. How will you measure your personal successes? Okay, so now you're a caregiver. Maybe you've gained a little weight. Maybe you can't travel as much as you used to. Maybe your career is not as expensive as it once was. But what can you do that you can measure as a small win and you can smile when you look in the mirror. You deserve it. 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. all sizes heavy, but we ain't got to be