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June 8, 2020

H.E.L.P. - I'm not qualified.

H.E.L.P. -  I'm not qualified.

Zetty requires 24/7 care and J Smiles is clueless as to how to provide it. J Smiles gets ideas and suggestions from internet searches and a childhood friend. Undaunted and overwhelmed, J Smiles traipses into the uncharted territory of getting H.E.L.P.

J Smiles:

It was like, I was coming home with a brand new baby. But I was never pregnant. I did not adopt. I didn't have a surrogate. But that's how I feel. All of a sudden, I got this whole human being that I'm responsible for, out of the blue with no warning. At least when you're pregnant, you got some months to plan for it. Or when you adopt you throw in your paperwork and they kind of.. you decided you wanted to be a parent. Know what I'm saying? Well, for the surrogate, you decided you wanted to be a parent, all of those there was an affirmative action on your part when you decided you want to be the parent and not this time..but that's how I felt. Getting off that plane from LA. We land in Atlanta. Yawl. My mom was in a wheelchair. She cannot walk. She cannot communicate effectively. And I'm thinking there are no doctors at the house. There are no nurses at the house. There are no caregivers at the house. Yawl just gone let me take my mama back. Who.. you trust me to do this? I don't know what I'm doing. The house is not dementia proof. Okay, I dont have no Alzheimer's equipment. I know nothing about this stuff. And I don't know that I'm safe enough for y'all to give it to me. But right now...We all we got. ParentingUP! 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, 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?

J Smiles: Today's episode:

HELP. I'm not qualified. The first night back home was scary. I couldn't sleep. I couldn't rest. I couldn't plan. I literally didn't know what to do. Now, thankfully, the home health agency Home Instead they already schedule an appointment for them to come to the house, see the house, interview me, assess my mom. But they weren't coming for a few days. So I was flying solo. Bathing my mom, cleaning her, feeding her, doing an awful job by my dad. I didn't have any techniques. I didn't have any supplies. It was a mess, a absolute mess. I did have loving caring folks who supported me. The top five that we already talked about. They were checking in on me and I was trying to figure out how to just last to the caregiver agency company comes. Let me tell ya something that was funny and not at the same time. My mother ended up with some weird looking asymmetrical rat tail hairdo. From the way they shaved her head to put the shunt in. I thought now, I know this was necessary, But my mama would be mad as hell with yawl if she realized that you gave her a symmetrical rat tail. Anywho, I digress. By this time. I'm just a few weeks from opening my business in Las Vegas.. Score. So the grand opening is looming and I'm afraid to ever leave my mamas side at this point. But anyway, let me back up a little bit. So I was so paranoid and so shook by the way the last few months of my life had gone, I didn't even trust myself to interview the care agency. So I got my cousin to come over. My cousin Joy, the same one who went got my car from the airport. I got him to come over and be in the house with because I said, Well, I don't even know like, are these people gonna be chasing me out? Are they..how do you how do I know? Like Can I really let them see my house? I don't know these people. They could come here they could hurt me they can hurt mama like that's how paranoid I was. So much had gone awry and crazy wrong. That I didn't even trust people in house. But I knew I needed to. So I got my cousin to come. He's an imposing figure. this cost? Did you train them? Are you sure that the person doesn't have a criminal record? Like that's all I knew to ask, which is a horribly insufficient set of interview questions. I mean, I know that now, but at that time, shoot, I was like, hey, so about these caregivers, how many Can I have? When can they start? What do they do? I'm thinking this caregiver gone come in and teach me. You've been trained, I haven't been trained. I know how to hospital. I got a PhD in hospitals. But in the hospital, I go get the people who are trained the doctor, the nurse, the tech, the phlebotomist. I love saying that word whenever I can, so but this caregiver they gone come do everything and train me? The answer's no. You're supposed to tell the caregiver what you want them to do. Okay, I'm sorry. Have you not been listened to me? I don't know. I have no plan for this. So I meet with the owner. I tell them my background. I tell them how swiftly this happened about my dad dying. My mom being shocked into dementia, about the brain power that my mother wants thrust upon the world and all of the bits and pieces of my mom's life that was now just kind of meandering in default. They told me they said, Hey, you know what, because your mother was such a force, such a professional force and so involved with the community, we have the perfect caregiver for her. This woman is..she worked in corporate America for a number of years and she's now retired. We think she will be able to have a really good conversation with your mom, because she likes talking shop too. And I'm like, hey, whatever. Little did I know, the heavens was smiling on me. From that poor set of interview questions and request, I got the best caregiver I've ever had or ever heard of. You know how they say, God takes care of babies and fools? I would like to say to God takes care of babies, fools, and J Smiles. Because there is no way that I should have gotten the queen of all caregivers. It was just who I got in DeWanda. DeWanda came in and she was a phenomenally perfect fit for me and my mom..because she had worked in an office. And so she understood the language that my mother used, even though what my mama was talking about was largely inaccurate. My mother's language and words and diction and the way she formed sentences could be intimidating and could be a bit commanding. And so it was fantastic that you know, DeWanda just was like, Yeah, whatever. It just went right with... blew right, by DeWanda. She wasn't affected. She wouldn't impacted. She wasn't intimidated. It was great. And DeWanda had cared for her brother who was terminally ill and she had cared for long term for another client with Alzheimer's ..So I was like bet Lets Go! Let me tell you the part that I still don't understand why she didit. So DeWanda thought she would be working just 8 to 10 hours a week just for a little pocket change. What ended up happening though was I had to go to open up Score in Vegas and I needed to be gone for some days. Well DeWanda was working the day so what am I gonna do with the night? WALA.. Aunt Cheryl. Y'all Aunt Cheryl came from California and she was with my mama at night and DeWanda during the day. Don't you know that DeWanda worked three weeks straight three weeks straight Sunday to Sunday to Sunday three times. This is the first caregiver I get out the gate..Its like I got caregiver gold mannered from heaven out the gate. It spoiled me and I have never been the same. I aint been able to put it together since. Don't nobody do that. Anyway, that was fantastic. As grateful as I was for Cheryl and DeWanda caring for my mom, yawl I felt so guilty leaving her, I was nauseous getting on the plane to go to Las Vegas. I felt like I was abandoning my mother for like some capitalist enterprise like How dare you put the opening of a business ahead of your mom? Jay, what are you doing? Then I heard my mama and my daddy, say, baby we have already invested money and what you doing right now is to go in to protect your money, Mama'll be fine. You've left me here with Cheryl and whoever this new lady is, that'll be fine. You go watch that money. So you're talking about mental health tricks to keep myself in a mental headspace where I could be in Vegas and act as if I am the owner and operator of a massive new business. Be present, be aware, be vigilant, but all the whilst constantly watching my cell phone trying to see if there's a text and if my mama's okay. It was hell. This parenting up thing is not a game. It is not a game when you are parenting your parents. That's the concept behind parenting up. Whew. So everything goes well in Vegas, the grand grand opening actually gets pushed back. But I'm out there for over a week, doing what we can..putting my elbows in, rolling up my sleeves to help us get closer to the grand opening. Oh, and let me tell y'all that also during this time, major things were due to the IRS around my father's estate since he did not have a will or we couldn't find it. And we were moving forward without one. You have nine months from the date of death to basically put in your draft of what you think your estate is going to be what you think its going to be worth. You have to have an assessment of all of that. You have to claim every benefit that you think you want...any kind of exclusion. You have to do all of that and you have to To be appointed by the court as the administrator and all of this other stuff within nine months in order to take advantage of any part of the tax code that could benefit you. Huh? So guess what, guys? Yeah, that's right. Nine months pretty much..His nine month deadline coincides with when I'm getting mama back to Atlanta. And when it is mandatory that I get to Las Vegas because I've been putting Vegas off at this point for about four months. Well, what we don't have over here is boredom. A huge thing I realized is I suck at asking for help. Oh, goodness, I like need counseling. Do they have something like that? Do they have like, I don't ask for help anonymous like I'm bad at it. Now. I got even worse because of my paranoia. Remember, family member who had just tried to sue us and things were going wrong with other partners that my parents had and cases and stuff were being filed, it was a lot happening. You know how they say circle the wagons. I ain't even circle the wagons. By this time I had just taken my mama and run for the hills and I was hiding in a cave. And I was afraid to ask for help. Well, partly I was in shock and I didn't even know what I needed. But the little part of me that was starting to wake up and feel was afraid to ask for the sake of appearing vulnerable and potentially being taken advantage of... awful feeling. Everybody during this time who helped me.. its because of their graciousness, because I didn't ask. Monica, Aunt Cheryl, Christine, Janel, Ceeon. I didn't ask them to come to LA, I just told them that my mama had to have emergency brain surgery and they rallied and came to me. Those same women started rotating to come to Atlanta to give me a break, to have a glass of wine with me, to check on my mental health, which at this point, I can tell you it was tattered and worn. By now, Zetty is starting to recover from the brain surgery and this recovery really is a slow waiting game. We are having to do exercises at home every day to strengthen her arms, her legs, her back, to increase her dexterity, writing, brushing her teeth. So not only are we teaching her how to do it again, we're also having to make her do it a bunch of times a day and she don't really want to and I really don't want to make her do anything she doesnt want to do. I feel like my sweetie baby mama has been through enough. And if she want to lay down and go to sleep for six days, JayGee wants to let her but I'm like I cant ma so you gotta get up and you got to do exercise. Another crazy thing..finding doctors. OMG for anybody in the medical field, y'all gotta make it easier to find out where you are because the Google search does not feel appropriate when your mama just had brain surgery and youre having to move to a new city. Okay? The people who had the connection in Los Angeles to Emory, they were able to arrange for the PET scan but they didn't have any suggestions on a primary care physician or a neurologist or neurosurgeon or a hospital or geriatric anybody. They just released us and I was like AHHH are you kidding me right now? But you remember back in Episode One, the first full episode, I talked about Dr. Sandia Green Harris, who is a very dear friend of mine, and I just had the great, great fortune of having grown up with her and she is a neurosurgeon in Atlanta. So I called her and I said look here Dr. Sandy that's what I call her. Remember all that stuff that was going on in LA, we are back sweetheart. We are in Atlanta, and I don't know nothing about any doctor here and nobody in LA could tell me about a doctor here. And I know it ain't..its not necessarily in your job description to help me find Sandy takes my mom as a patient which immediately gives me grace and access well past anything a Google search could have done or my health insurance 1-800 number. So Dr. Sandy becomes my mom's neurosurgeon. Dr. Sandy is in practice with a neurologist. So I say, hey, if she's good enough to be your practitioner partner, she's good enough for us to try and I don't even know how to find no neurosurgeon, or how to know which one is good or bad. I can tell you what's a bad pair of shoes just let me put them on. I can tell you if its gonna hurt after an hour walking in the airport. I can tell you about traveling and when you want to go to Iceland versus when do you want to go to Namibia? I don't know nothing about finding doctors. Okay, that's not my thing. It was important to have a neurosurgeon and a neurologist because the neurosurgeons are the experts who can adjust the shunt. So the shunt that was placed in my mom's brain was put on, I guess, kind of like the average setting. But they warned me that after maybe a few months, when stuff starts to.. when her brain starts to heal, we'll be able to tell if the device needs to be adjusted. And how can we tell? Well, if it seems like she's walking in, like the little shuffle foot, like yawl remember Tim Conway on The Carol Burnett Show? He had this character like this old, crazy white hair doctor, but he shuffled foot walked really, really slowly and he talked really, really slowly. Basically, walking like that is an indicator that this shunt is not working or mom having extreme incontinence because at this point, her incontinence had gotten a little bit under control because of the shunt. So that's what I was supposed to looking for. And I ended up noticing that hey, this looks a little funny. I think maybe it's just not working. And so about maybe three or four months later, Dr. Sandy did make an adjustment and the adjustment was useful. And then the neurologist is the specialist who keeps track of how any degenerative brain disease is progressing by just standard office visits, questions, tests, bloodwork, things of that nature. And the neurologist was also the person who would communicate with Emory around the PET scan results and whether or not that meant mama had Alzheimer's. And if she did have Alzheimer's, then how advanced was it? So because what we do over here is keep it interesting.. So the shunt that they used at Cedar Sinai in California is all the rave in Europe and in California, the rest of America does not use it. Hmm. So we get over here and all the neurosurgeons and neurologists in Atlanta like yeah, so J Smiles. We don't we don't use That brand. So the devices that we have to do any modification or adjustment won't work on what's in your mom's head. So guess what? I had to call back out to the Cedar Sinai, talk to those doctors..get them to give me a name to their device Rep. Sofisa and then Sofisa gave me their rep in the Georgia area, and then I had to get the rep in the Georgia area to call Dr. Sandy to say, Hey, I will come to your office with the proper device to allow you to adjust the shunt that's in Zettys head. All of that just to do what was supposed to be a simple adjustment because didnt nobody have the adjustment tools for the brand of shunt my mama had. Anywho whenever I'm in Atlanta, I'm on shift at night. DeWanda is during the days, I'm doing the nights and then obviously some days I gotta give DeWanda off.. which means I then do the day and night and while this is happening, I am also still managing my mother's CPA expert witness firm, my dad's Law Office, moving forward with his estate affairs and still trying to get to the grand opening of the business out in Las Vegas. Yawl the number of moving pieces is crazy..crazy and I will admit to you the way I was getting through was Remy Martin 1738. I'm not condoning it but I told you I'm gonna tell the truth. During this time, reverie lattes from Starbucks, which is a strong bold espresso with steamed half in half. That's right. That was my meal. That was my breakfast, my lunch and my dinner. The Remy Martin 1738 over ice look like iced tea okay. In a little cup, it looked like warm tea. So I will admit I was getting away with increased volumes of cognac without anyone recognized and without anyone knowing. I wasn't driving but I never even got inebriated. My body was in such turmoil, such pain and under such stress that even consuming those amounts of alcohol, I wasn't waking up with a hangover. I used to her interacting with them, handling his affairs, and maintaining my mother's own affairs. And of numbers being thrown around at the conference table and your mom had difficulty recalling a few of the numbers as the meeting progressed. Yawl my mama was so nice with numbers. In the span of one business meeting, she doesn't forget the numbers that are thrown out no matter how large they are or no matter how many there are, it was customary for her to recall all of that and recite it like a computer would. So I said, Well, what did you say? Did you say something or did you ask her how she was feeling? What was going on? This person said, Well, no. I mean, Yvette is such an expert with this stuff. I just thought maybe she was having a bad day. See, her dad had died kind of recently. We just thought maybe she was under a lot of stress. There was a lot going on. I say, huh, okay. Then I told a few key members of my family also ask them to keep it to themselves and a family member said, Jay, now that you mentioned it a few months before your dad died, I saw your mom in the CVS without her bottom partial in. Now I need yawl to know this..Its two things my mama would not ever do when she was a full, healthy brained person. She would not ever let her gray show, she was not for gray hair period end of story. She would not let anybody outside of me and my father see her without her full set of partials clicked in and I looked at the family member and I said, Well, what did you say? Did you say something to her? Well, no, I just thought she was busy and half and just forgot about it. But it did stand out to me as something that I didn't think she would do. UGHHHH Its over now. Its water under the bridge. And both of these instances, they're telling about things that they saw happen a handful of months before my dad died. So it's not to say that I feel like there's something I could have pounced on and figured out earlier. It just was noticeable and stood out to me. A painful thing to watch was my mom attempt to be herself. She would try to get a legal pad and pen and start writing testimony, which is what she would have been doing if she were working. So she would start writing testimony based on what she was watching on TV. So if it was law and order, or the news or The Ellen DeGeneres Show, it didn't matter. She would start writing as if she was going to have to report that to a judge or to a court.. very painful. It was obvious that she didn't know who was alive and who was dead in our life. That was also painful. I was like, wow, are you serious right now you don't know daddy's dead? So, okay. I have to take my time with these kinds of stories. So there was an instance where my mom said, JayGee have you talked to your daddy today? And yawl, I just stopped and I looked at her. I was like, I'm thinking, is this a trick question? I'm like, No, or have you? Because remember, in my mind, Ion need you talkin to daddy. Ion need y'all making no pact because I don't need you falling asleep and don't wake up tomorrow. Okay, I don't need that. I don't need that Zetty. She said no. She said, I haven't heard from him all day. I don't know where he is. He better not be in the street. And Im like Oh, she thinks he's still alive and like just didn't come home today. Which means she doesn't have any recollection of like the last I don't know nine or 10 months. Are you kidding me? This is too much. This is too much I said well, mommy, daddy died. Oh, such a bad decision on my part to make that statement. She looked at me and she said no, he did not. Don't you say that JayGee do not say that. So then I say, well, Mama, I wouldn't play about something like that, that he did die. And so I went to get his obituary, I pulled it out. I showed it to her. And she's looking at it and she's reading it. I can't tell how much she's processing or consuming it. But the look on her face, the scowl, the way her shoulders are starting to curl, it appears that she's didn't you take me? She said, oh my god. Jock must think I don't love him. She said I bet everybody there thought that I didn't care for him and didn't love him. JayGee how could you, how could you have a funeral and not tell me or not take me? I was a green caregiver at that time green and wet behind the ear. At that point. I'm a bit frustrated. I'm a bit overwhelmed with the situation or raise my voice a tad. I'm like, Mama, you were there. You were totally there. And I get pictures of me and my mom at the funeral. I show her. That does not help at all. She says, I can't believe this. She goes to lay down. That was my first hard lesson in caregiving. My reality doesn't matter. Matching her reality is all that counts. The snuggle up- don't just try to get Aunty or your neighbor to come sit with your loved one. They are not trained and don't know what they're doing. You got to think about it like they're a toddler. They can't communicate what was done well or poorly while a caregiver was there. When it's time to select a caregiver, this is not the time or the place to look for the bargain. Another snuggle up.. village members if you see an adult behaving way out of character tell one of their loved ones. I think I saw Jays man cheating but I don't want to get into because I don't want her to get mad with me..this ain't that. 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.