Welcome to OUR Community!
May 31, 2020

Something is wrong with my mama!

Something is wrong with my mama!

The first full episode. J Smiles reveals the shocking events leading to her mom's Alzheimer's diagnosis. Her swift meandering journey of becoming a full-time caregiver is vividly detailed. Heartfelt, and perhaps hard to hear, you get a strong sense of the love and levity combination at the core of her brand of caregiving. The Snuggle Up, a suggestion segment, premiere is here too. 

Transcript
J Smiles:

I walked into the kitchen, and my mom was standing there at the counter. Her back was to me..no big deal. I was like, hey, baby what chu doing? Hey, Jaygee..Mama's making a sandwich. That was my mama talking. I'm Jaygee. And I say cool. What? What kind of sandwich you making? Y'all...then I turned to pick up something off the floor and noticed a yellow puddle forming around my mother's right foot. She had on sneakers. I said, mama, mama, what are you doing? She said, baby. I told you. I'm making a sandwich. Do you want one? I'm standing there trying to pull it together. I said, Ah, yeah, yeah. I said, Well, what else are you doing? Is anything else going on? You okay?She saidyeah, baby. I'm fine. I was like..You don't ummm...You feel okay. She said, Yeah. At that point people... my whole body sank. I looked down at my mom's foot and I could tell there was urine running down her leg. It was puddling inside her shoe and was on the kitchen floor and she did not know it. Parenting Up- Caregiving Adventures with Comedian 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 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, OG's, village members trying to just prop up a caregiver, you are in the right place.

Zetty:

Hi, this is Zetty. I hope you enjoy my daughter's podcast. Is that okay?

J Smiles: Today's episode:

Something is wrong with my mama. Now, let me back up a little bit. My father had died very abruptly, very suddenly of a massive heart attack just a few weeks before. So maybe six weeks, eight weeks, two months, something like that. Don't hem me up like my granddad would say. Aahhh, don't hem me up on the time. But it was certainly less than 90 days. This is what let me know something brand new was going on my mom like before then, the weeks before that. I assumed that difference that I saw my mom could be attributed to grief, depression, stress, shock, because my father was okay. My mom and my dad, or so we thought, my mom and my dad were on couch in their home in Montgomery, Alabama. Getting ready to watch a football game. It was actually the New York Giants. My dad is a New Yorker, avid, avid, avid, New Yorker . And ridiculous sports fan and they were about to play the Atlanta Falcons, in that year's, which would have been January 2012... That was the wild card game that Sunday and because my parents ah still snuggled on the couch so cute, so cute. And we're getting ready to watch the game. It was a little chilly and you know it's January. It's a little chilly in the family room And besides that my dad was laying his head on my mama's decorative pillow. Okay, which was a no no. So my mom went to the back to their bedroom to get a for real you can put your head on it "Jock Smith" pillow and a little throw for herself. She comes back y'all, he's gone. G-O-N-E, gone. He did not yell. He did not gasp for air. He didn't fall. She didn't hear a vase break. She walks back in the room and her boo-thang and her man is gone. And while I noticed shock in my mother. What I didn't know was that the shock wouldn't dissipate. So I got the call that Sunday morning. I was living in Atlanta. My mom called me she said Jaygee, that's as her nickname for me, my mom and my dad nicknamed me Jaygee. Jaygee, baby, it's Mama. Don't panic. your daddy is non responsive. He's unconscious. Paramedics are here. I want you to stay calm. I want you to pray. Everything's gonna be okay. I want you to come home but get someone to drive you. Now, in that moment, I am doing a whole freak out. Chicken Little the the sky is falling. I am throwing stuff in the room. I done slammed my body up against the wall. I am screaming. I am crying. There is all kind of mucus and snot running down my nose past my chin. I am a full meltdown mess. My mom is cool as a cucumber. God is gonna take care of it. I got to let you know that's the last time I communicated with the woman that raised me. Y'all by the time I made it to Montgomery, which felt like I got there in about 20 minutes. I had a dear friend visiting me and he drove like a spaceship. We got to Montgomery in the blink of an eye, it felt like to me. I get there. I go to the hospital. I didn't know my dad was dead, okay. They wouldn't tell me. As far as I knew, he was passed out unconscious and they thought something was going on with this heart, but my family decided not to alert me in advance. So my best friends, with an S, all knew.My family knew. My mom's best friend. While you bs'ing Google knew before me. My dad was a Google Alert because he was president of national Cochran Firm. My dad, Jock Smith, was a lawyer and he started the national Cochran Firm with the late great Johnnie Cochran, Jr. So it was news and everybody was like don't tell J. Which was a very good idea. I get into the hospital and my mom is on the bed, sitting beside the bed holding my dad's hand. It really is a lot of chaos in the room. I walk into the room. I don't know of have you all have seen The Champ, like a 1970s boxing movie, but that's when Ricky Schroder - this was before silver spoons. This is when Ricky Schroder was just a cute little, cute little thing before Macaulay Culkin became the cute little blonde white boy actor - it was Ricky Schroder. So but it was a movie, And any way. Ricky Schroder was extremely close to his father who was a boxer. At the end of the movie... Ricky attempts to revive his father by jumping on to the table where his deceased father is laying. And Ricky is on there and he's screaming at his dad and begging him and pleading him and hugging him and kissing him and I got to let you know that is exactly what I did when I got into that hospital room and saw my dad because remember, I didn't know my dad was deceased. I thought they were working on him. So I didn't know he was deceased to like got to the hospital. My mom sister told me in the hallway and then I went into the room. And, um, my mom just looked through me. I looked at her. I went to hug her. She did not hug me back. And I got y'all gotta know I'm my mama's whole world. My daddy woulda told you that. My daddy woulda said I know Yvette loved me but I tell you what, don't get in the way of her and Jaygee. So but, I was in such shock too. My mom wasn't looking at me but then she wasn't hugging me but I was so overcome with grief about my dad that I just jumped. I just jumped on the table as a really grown woman. 41 years old and did my full Ricky Schroder don't die daddy don't die Hey, I listen I'm sorry. I'll help. I'll do more. You know I'll move home, I'll help you run the law practice. What you want to do? You want to open up Popeye's chicken? You want to open up a QT, Racetrac? Tell me what you want to do. I was like I was so sorry daddy. You were working too hard and now you're gone. And if I come home and help more, you know. It just the total craziness that you say out your mouth when you're in shock. I could look at her and tell she wasn't there, I didn't realize she would never come back. So it was probably two months or so when I walked into the kitchen and saw that she was urinating while making a sandwich and didn't know. And in that proceeding two months, my mother was still driving a car. She was still running her firm, My mother had a extraordinarily accomplished and celebrated CPA consultancy. She was a forensic accountant. She was a highly sought after expert witness big companies, big corporations, state governments hired her big insurance companies hired her because if numbers were involved, and money was at hand, you couldn't beat her. Right? She was like Jordan in June. She was like, you know, Tiger before the accident. The point is, you couldn't.. she didn't lose, right. And so she was a very highly sought after. So she was still running her firm. And as a matter of fact, for those first couple of months, she was managing my dad's firm. She was paying all the bills everywhere. She was was keeping everything afloat and while I noticed a few comments or activities that seemed a little bit like just quite not like my mama but I didn't get worried or get scared because her boo had just died on her out the blue while she went to go get a pillow. So I was thinking I'm gonna give her a break..Hey, you know what I'm saying? Like she deserves a little benefit of the doubt I'm gonna lead baby girl go ahead and shake it off right but when I came in and saw that happening in the kitchen, I knew this is different. Whatever this is, its not grief, its not depression. She is unaware that her body is failing her. Yeah, I went into a full panic.. the shock of watching my mama urinate on herself and not know it actually pushed me out of my grief for my dad. I like almost immediately stopped grieving him and pounced on my mom to protect her..figuratively speak and I thought oh hell, okay. Oh, okay. You know what I was playing with y'all? Ah, okay, we over here worried about daddy's estate and his will and is everything going right with his business interest and his partners and things? So none of that matter if my momma die. The thought hit me that oh my goodness what if my mama and my daddy got that soul tie that when one die the other one just gonna fade away and they sleep. Y'all I started freaking out! I was like listen here lady LISTEN hear. Don't you be making no plans with Jesus..don't you look for the light..stay away from the light. Y'all remember when Eddie Murphy did that with Shrek? Eddie Murphy was the donkey I think that's right. Anyway, somebody says the light..it might have been the Lion King. Anyway it was an animated thang.. And that's how I feel about my mama. Stay away from the light girl..because I was like oh let me tell you something Jesus..Unless you plan on taking me to heaven right now too.. I know good and well you ain't about to take my daddy that abruptly with no warning and then snatch my mama within 90 days. The you ain't bout to do that if you also want me to stay on Earth. Now. It's up to you Jesus. You know what I'm saying you in charge dude I'm just saying though you do have some limitations *laughs* unless you're about to change my whole everything..my whole body and my whole everything.. Bruh you gone have to.. you gone have to ease up a little bit.. you know what I'm saying? So, I did what I do which is scurry to find a solution right? At my core, I'm a solution finder.. that's why engineering made sense. That's why being a lawyer made sense. That's why being a product designer made sense. I like finding solutions to everyday problems that a bunch of people have so I got to now figure out what is the solution for my mama cuz something is wrong with my mama. But listen, y'all, I aint have no idea what was wrong with her.. like Alzheimer's didn't even cross my mind. *Pun intended* because who gets almost overnight? This lady was fine or soI thought.. and she was high functioning and in charge of a lot of complex stuff. And My mama..the thing she was known for her whole life was brainpower..now don't ask her to bake a cake. Don't ask about baking a cake. Don't ask her to sew nothing okay. Don't ask her to fix nothing right? She couldn't rebuild no engine she couldn't. She couldn't type either. And she couldn't swim. If you want any of that. Don't ask her for that.. And she wasn't good at driving long distances. Now she could get wherever she was going real fast. *laughs* My mom was brain was what she was known for. Like this chick was valedictorian everywhere she went to school, so it ain't never dawned on me that something wrong with her brain what you talking about..Her brain was fine, right? Like when I went in the kitchen, I asked my mom what you're doing she said, I'm making a sandwich. She didn't say I'm doing needlepoint. She didn't say I'm washing clothes. That was an appropriate answer. So I'm moving on along. Anyway, y'all. I go to all the doctors I can find in Montgomery that are willing to talk to me, but I don't even know what to ask for. I mean, I don't even know what to say. All I can say is Hey, my mama was standing in the kitchen and she was urinating on herself and she didn't know it..that's all I got. What does that mean? Well, first thing they told me was, are you sure that's what you saw? Like, ah, really seriously? Okay, who knows why they said that but either way I didn't take that response very well. One of the things they said well, you know, maybe she's having a breakdown. Let's do a neuro psychological exam. I was like, What What does that mean? What's a neuro psych exam? And basically Y'all, it's like a whole day worth of tests. So my mom went in and see this neuropsychologist and then my mama had to like do verbal tests and do written test and then have a conversation with the lady. The lady was supposed to give me a report and that report was supposed to tell me what to do well, first of all, the report took two weeks to get and then the report told me to go see another doctor. Now mind you in this two weeks, my mama is declining more and I don't know what's happening. We walking around the house she tripped on nothing. Okay. We went for a walk in the neighborhood. She fell on flat ground, work in work is going on. Now listen here. My mama is no ballerina. But she also ain't never being clumsy. She can walk just fine by herself and she can walk pretty fast and very stable. So I'm like what in the goodness gracious hell is going on. So finally, I'm able to find a doctor, a specialist in Birmingham, I go to Birmingham. This doctor meets with my mom for like, 20 minutes. He says, Hey, you, you the daughter? I'm like yeah, that's me. Can I speak with you outside? I said, Absolutely. He goes outside. He says your mother has a degenerative brain disease and you need to take care of her for the rest of her life. I don't really know what else to say. I'm like, Sir, sir, first of all, how do you know that? And second of all, I don't know what else you supposed to say either... But that can't be it. You got a peppermint or something you want to give me? You can't just tell something like that on they mama. Man. This guy hits me with the I'm pretty sure that's what it is. But we can't prove it until we get an MRI. Like cool. So where's the MRI? He said go right downstairs. You can get the MRI down there. I said great. I go downstairs ready for the MRI right now..okay. I want to right now cause I don't even know what you mean by degenerative brain disease. What does that mean sir? So anyway, I go downstairs and I'm talking to the people to schedule the MRI and they said well oh absolutely we have the request here. It's already in the system. I'm like bet now mind you, my mama is sitting in the lobby area because she still doesn't know about this diagnosis because we're talking a matter of months. Less than six months still to my dad passed and I don't have the heart to tell her they think something's wrong with your brain, right? I'm at the hospital by myself. I feel hives coming on. I feel like throwing up but I'm trying to hold it together. My head is pounding like a jackhammer going through concrete at a construction site *makes constrction noise* That's what I felt like in my head. So the lady says, well, ma'am, We can get you right in. I said okay, when is that? She said six weeks. I said, Excuse me..My mama out here falling apart, y'all talking about degenerative brain disease and you telling me you need six weeks before you can give the MRI to even tell me if the doctor is right with his assessment? I'm sorry..is there anybody else I can talk to? Well ma'am, we only have X number right? Basically she was like we got half of an MRI machine and here comes the issue with my home state of Alabama. I don't think that we lack intelligent physicians but we do lack infrastructure and we lack equipment. So six weeks was unacceptable. My mom bit by bit in front of me days and weeks on end, I'm seeing her unravel and I'm thinking I aint bouta to lose my mama and my daddy like this. So I get to calling anybody and everybody I know that's remotely attached to anything medical. I'm calling nurses. I'm calling the physical therapists. I'm calling doctors.. I'm calling hospital personnel. I am leaning on my law school Cumberland friends and lean on Howard friends. I'm leaning on my Stanford friends. I'm leaning on all my daddy and my mama's connects that I can trust cause mind you by this time, we had been sued okay by a family member family member was threatened in lawsuit several of my dad his partners and various businesses were not doing what they were supposed to do contractually. So then I'm fearful as all get out who I can even ask for advice around my mom, one person I knew who understood what I was going through, I could understand a calamity at stake. Dale Cochran, Johnnie Cochran, as we called her in a panic said, I can't even tell you who this is for Let me tell you what's happening. And let me tell you what I need. She said, sweetheart, the fact that you won't tell me who it is tells me who it is. So anyway, I utilize her brain to figure out what's great next steps, some time passes, I get to see the sign. That is time. I'm freaking out because I'm seeing my mother become less and less stable around the house, but I don't know what it is. Okay, good to see the sign that I'm talking to him, Dr. King Black phenomenal, phenomenal, phenomenal like top neurosurgeon of the whole world. And as a matter of fact, his Uncle and Auntie left outer corner from down the street from my grandmother, which just made it all feel that much better. But anyway, that has nothing to do with why he's one of the greatest neurosurgeons Anyway, I'm speaking with him and he's like, hey, do you get your mom out here? We will do a full workout because I told him I said, Dr. Black. I don't really know what's wrong with my mom. I just know I can't wait. Three by this time. It was three weeks, right? So three to six weeks had already passed. I can't wait that long for somebody to even tell me if they right that is a degenerative brain disease. Get your mom out here and then we're done. We'll do a full workup as my grandfather wouldn't say it from head to toe. We will check every major system she has every organ it'll take us about a day and a half. Then we will spend a half a day looking over the stuff and then we'll bring you in on day three and then have we'll take a half a day explaining to you what we found. And then giving you what we consider to be great next steps and then you go on back to the south east and manage your mom's care from there I was like okay cool. Let's do that boom boom boom I okay I packed my clothes I packed my clothes that's what I call my mama we got three days to close I stay in this really cute hotel is boutique buy nice summer I want to get to pool time we don't just get these few little test this stuff and then we own home. Yeah, but don't don't chain joke was on me. They did all the tests today. It was time for the results to be revealed to us. They asked to speak with me without my mom. So they gave her some rules about doing some other kind of hearing test and then let her go to the restroom so they could explain it. And they told me my mother had two forms of dementia. I can remember my hearing going out. I can remember feeling hot. I can remember feeling. I still see the room I was sitting in and I'm staring at and I said Sir Wait, okay, hold on, hold on. What do you mean two forms of dementia? I don't I don't understand what you're saying. He said, Well, we're pretty sure we'll need test to see but we're pretty sure that she has Alzheimer's. And we also know that she has nine hydrocephalus or mph is pretty advanced. And we suggest that you have brain surgery. I'm like, Okay, oh, whoa, whoa, whoa, whoa, whoa, whoa, whoa, whoa, whoa, whoa, two forms of dementia and some brain surgery. And he said, Okay, what we're saying is two forms of dementia but and the thing is that the mph really presents like dementia. And so that's why we just described it to you like that. And what we're saying is that she needs to have this shunt put in her brain in order to correct the fluid in her brain. What will okay when do dock when do you think and that was Dr. Ray to okay. Dr. Chu, and Dr. Black were phenomenal. Dr. Steven Sykes was the neurologist and they treated me with such tenderness and care. I'll never ever, ever forget them. I mean, forget them. Never forget them for that I said was I said, Well wait, okay, how we gonna know about the Alzheimer's? And he said, Well actually Ma'am, the Alzheimer's can wait. I'm like, Whoa, what is this mph to speak up? You're telling me that the mph Kate like the Alzheimer's got awake because the mph is a bigger deal. Are you serious right now, doctor? I said what so when should we have this surgery? He said as soon as possible, I guess was the Friday we were there were the Thursday, Friday our flight was back to the east coast Saturday morning. I said, Well, how soon is soon it's like as soon as you can. He said we could do it here. Or if you have another physician you want to use that's fine. And I'll make another physician. I don't have another physician. What are you talking about? The two came back to me with some version of I don't suggest that you take her back on the plane and fly her. I mean, you could take the chance if you want to, but I would if it was my mother. You are definitely the only neurosurgeons I know. out here in LA. I was like, this is a lot to digest. I thought I was coming out here for three days. So you want to give me a workup and report as being gonna tell me what to do and I'm thinking my mom is going to need some extra vitamin C something go global. You know what I mean? Maybe we got to do a cleanse. Okay, maybe we got to cut out caffeine, maybe get rid of sugar, right? Maybe get a catheter? What are you talking about these options? Sir? No, sir. You keep all these options. You said you said Well, I tell you what you think about it. You know, call your family see what you want to do. That was the next heartbreak. First time, my life I didn't have anybody to call. My grandparents were deceased. My dad was recently deceased. Like we're talking maybe about five months at this point. There was no one where my communication was solid enough and situated enough where I could call in that moment and rely on their advice. It was off. I said, Okay, well, thank you so much. I this time My mom is coming back and she's like, Hey, how you doing baby? Cuz I'm looking at her and I'm thinking mama just tried to tell me you die and I'm trying to figure out how not to throw up on you. We leave that's Friday. Get her back into the loo cute bedroom. You know what I mean? I put her movies on my mother loves watching movies. She is a movie a Holic. I put a little movie on or have some room service, y'all. I walked downstairs to the bar bartender say What are you drinking? I said, I don't know. I need something strong. That doesn't require any assistance. I got just the thing for you. He poured it needs no ice. It was like a caramel brown color. I was gonna ask you, I need you to know I'm not a heavy drinker. I'd like a glass of wine and like a martini. I don't drink daily and I don't drink a lot. And typically my stuff is mixed with a whole lot of fruity stuff in it. took a sip. I say what is this? He said Remy Martin. That's a very, very refined strong cognac. Turns out it was Remy Martin 1738 Okay, whoa, Okay, sounds fancy, y'all. I finished it so fast. He said what's going on. I said a lot. I drank three double Remy Martin 1738 sitting in that lobby bar trying to get my head right. I was not intoxicated, I didn't eat nothing. That is how intense the pain was in my body. The universe smiled on me and let me remember phenomenal contact that I had at the Sandia green Harris. I grew up with in Montgomery, Alabama. As it turns out, guys, she is a neurosurgeon. We've known each other since elementary school. My grandmother taught her parents in college, low history, all right, all sorts or she's based in Atlanta. So with this six or seven in LA and it's nine to 10 I sent her a text can you talk and she said, You know, I'm at a she was at a party said I'm at a party. This is an emergency. She stepped out into the garage or something. I started bawling and tried to tell her what it was and what was going on. And she told me she was like, Jay That sounds intense. She said, but why are they so sure that they want to operate so quickly? She said, I'm not saying you know, cyinade. Absolutely. their reputation is amazing. But why are they so sure that they want to go right to operate can't we try some treatment or watch her first another moment of the universe smiling on me. Well, they had an MRI from like four or five years prior. And so they were able to look and compare where my mom's Brain Stuff colors looked versus where it was now. Maybe they go No, no, no, no, we we got it. And so when I was able to tell Dr. Sandy, hey, they are comparing MRI she said, Oh, okay. Well, they got something compared to sweetheart, you got to go with it. And she said, there's no reason not to trust that they can't do surgery. She said, if you were in Atlanta, I could do it for you, which would have been great. I said, alright well, so you think I should do it? And she said, yes. So I hang up, go give some more 1738 I go upstairs with my mom snuggle up with her, okay, watch the movie, we go to sleep and I'm thinking, Lord, you're gonna have to show me a sign. I was begging all of everybody associated with God as a God the Father, God the Son, God the Holy Spirit. I wanted little baby Jesus grown Jesus with the hair and the beard. I wanted Muhammad, I wanted Buddha and Tao and Confucius everybody, I needed anybody associated with a higher being that believes in a purpose of love and humanity to guide my spirit on what to do. This snuggle up of this segment will be in every episode, basically a few takeaways stuff that is hard to hear but items I suggest you ease into snuggle up to it. Give it a shot. Today snuggle up. When you see a change occurring in your loved one, do not brush it off. Don't let anybody convince you that you're overreacting or you're being dramatic, or that someone say no, they're just getting older, everyone starts to forget stuff. Everyone falls, sometimes, you know your loved one, if it feels weird to you, if it feels odd, if it's shocking to you, make note of it. Don't talk to somebody professional. Another item to snuggle up to getting a baseline of the brain. If there is a person that you love dearly, who has any cognitive questions, go ahead and get a baseline MRI, you need that comparison. To see when stuff starts to change. You need a ground zero, right? That kind of cuts out time when stuff starts really getting tricky. Wow, pinch me right now. The first full episode is in the books. You. Yes, you. You made it special. 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.