Parenting UP! Caregiving adventures with comedian J Smiles
Get engulfed in the intense journey of a caregiver who happens to be a comedian. J Smiles use of levity reveals the stress and rewards of caregiving interwoven with her own personal journey. Over 10 years ago, she was catapulted into caregiving overnight when the shock of her dad's death pushed her mom into Alzheimer's in the blink of an eye. A natural storyteller, her vivid descriptions and impressive recall will place you squarely in each moment of truth, at each fork in the road. She was a single, childless mechanical engineering, product designing, lawyer living a meticulously crafted international existence until she wasn't. The lifestyle shift was immediate. Starting from scratch, she painstakingly carved out useful knowledge and created a beneficial care plan for her mom. J Smiles will fly solo and have expert guests. You will get tips, tricks, trends and TRUTH. Alzheimer's is heavy, we don’t have to be. All caregivers are welcome to snuggle up, Parent Up!
Parenting UP! Caregiving adventures with comedian J Smiles
What Caregivers Want Doctors To Know
The void between medical expertise and lived caregiving experience takes center stage in this powerful season finale. Join us as we recap the Alter Dementia Summit 2025!
This episode captures the vibrant energy of a gathering that feels simultaneously like a homecoming, family reunion, and professional conference. At its heart is a critical message from caregivers to the medical community: slow down and recognize us as the experts we've become.
Through moving testimonials, attendees express what they wish doctors understood – the need for comprehensive resources, guidance on medication management, and most importantly, to be treated as valued partners in care rather than passive recipients of medical directives.
The summit showcases remarkable work happening at the intersection of faith and healthcare, with Edward Smith sharing how his church in Fort Worth partners with Alter to support congregation members caring for loved ones with dementia.
We meet Jessica, whose social media presence has created vital community for countless caregivers, and Dr. Kalisha Barnes Johnson, whose NIH-funded research specifically focuses on Black adult daughters caring for parents with dementia.
Perhaps the most powerful revelation comes from Dr. Fayron Epps, whose vision has expanded from serving 24 churches to supporting 112 faith communities across five years.
For anyone walking the caregiving journey, this episode offers both practical insights and emotional resonance.
Subscribe now and join this vital conversation about transforming dementia care through authentic partnership and visit alterdementia.com for more information about the Alter Dementia program.
Host: J Smiles
Producer: Mia Hall
Editor: Annelise Udoye
"Alzheimer's is heavy but we ain't gotta be!"
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What's up? Parenting Up family. This right here is a twofer. Ok, I am standing in Detroit, so if you're only listening, just figure this out. I am right in front of the iconic Joe Louis forearm fist in your face to announce, first and foremost, this is the finale of season five. Y'all can you believe? It's been five seasons of the Parenting Up community, where we're taking care of each other, we're taking care of caregivers, we're supporting each other. We are putting our foot in dementia's ass. J Smiles, why are you in Detroit? Right, that's how we're going to kick off season six. You see how I'm going to swirl that thing together. Swirl it together like good old gumbo. You know my grandma from New Orleans. You know she's from New Orleans. So, listen, tune in to season six right after you finish watching this hot ass finale for fifth season. But listen, you wanna know what is on it, right? Ha, watch to find out, all right. So I would like you to finish this sentence. We're talking to doctors. Hey, doctors, I'm a caregiver.
Speaker 2:It would be helpful if you slowed down and treated family caregivers like the experts that they are. They are truly the experts in their loved ones. They're the ones that are with them 24-7 and oftentimes are met with a lack of curiosity and not given the credit for the work and the intentionality that goes into how they've been caring for their person. So slow down, be curious, ask us questions and truly listen to what we have to offer.
Speaker 1:Parenting Up's caregiving adventures with comedian Jay Smiles is the intense journey of unexpectedly being fully responsible for my mama. For over a decade, I've been chipping away at the unknown, advocating for her and pushing Alzheimer's awareness on anyone and anything with a heartbeat. I've been chipping away at the unknown, advocating for her and pushing Alzheimer's awareness on anyone and anything with a heartbeat. Spoiler alert this shit is heavy. That's why I started doing comedy. So be ready for the jokes. Caregiver newbies, ogs and village members just willing to prop up a caregiver. You are in the right place. Hi, this is Zeddy. I hope you enjoy my daughter's podcast. Is that okay? Today's supporter shout out is from YouTube Faith Villager Research 7897. I am in tears. Three exclamation points this is the best interview Dr Epps has ever done. Four exclamation points Wow, what a huge vote of confidence. Thank you so much. If you want to be the recipient of a supporter shout out, you know what to do. Leave a review on Apple Podcasts, youtube or Instagram. Thank you in advance. Today's episode what caregivers want doctors to know?
Speaker 3:what caregivers want doctors to know. When I wrote the initial grant, I was like, oh, I'm going to work with 24 churches over five years. I'm going to find 24 churches that are going to. Let me come in with this crazy idea. I thought at that time and work with them Y'all. Five years later, we had 112 faith communities. So that's what happens, right? That's why I think about all these servants and we always limit ourselves because we got these small goals, you know, and God just showed up and showed out and said no, your people need you, they need this ministry, and so we are growing.
Speaker 1:What's up, family? I plucked one of the best caregivers known in all of the social media land. That's why I'm all over here on her shoulder, because I actually do know her. This is Jessica. Yes, the whole caregiver colliding thingy. She's famous Worldwide, internationally known. Y'all remember when James Brown made that famous.
Speaker 2:That might have been before my time.
Speaker 1:She's a baby till. Anyway. Look at this badge. It has yellow stuff in it because she is a speaker.
Speaker 2:Yeah, yeah, yeah. How you doing, sweetheart. I'm doing great. I love these glasses, by the way. Thank you, I'm doing good and I'm glad to be here. It's nice to be in a space with other Black caregivers and just people who get it especially around dementia, so I'm happy to be here. This is your first time at the Altar Summit.
Speaker 1:Yeah, what made you say yes?
Speaker 2:Oh, good question. Well, you know, it's interesting because this time last year, when they had the first summit, I was like I want to be there and I'm going to be there next year as a speaker. And literally a few months ago, dr Epps reached out and she's like do you want to be a speaker? We would love to have you. And I was like, yes, that was like my vision, you know. And so what made me say yes is one, dr Epps, because she truly is a visionary and she like, is real and down to earth and cares about black people right, navigating dementia. But then, two, I was like someone saw me. My story matters and I want to share it and I want to make sure that other people can learn from me. And that's why I said yes.
Speaker 1:Yeah, what do you hope to get for yourself? So you're here as a speaker, so you're going to be pouring in what do you hope pours into you? What do you come here needing to get massaged on or lavendub loved?
Speaker 2:on. Yeah, I come. I hope to leave here with more community. Right, I share my life on social media, like everyone knows everything that happens with me and my mom. But people really don't know, jessica, and so I would love to get connected to people that are also on the journey, that are not just learning from me, that will check in on me and like be a part of my circle of support, like that matters. And what better place than a place filled with black church folks? You know somebody going to call and pray for you. I hope anyway.
Speaker 1:They're going to at least tell you remember to wear those stockings and your hat on Easter girl.
Speaker 2:Which is coming up. Right, I need to get my Easter dress, you're right.
Speaker 1:Yeah, what's the one? Tell me something that nobody on the ground knows about, jessica.
Speaker 2:Oh my gosh, that no one knows about. Jessica, here I'm a dance fitness instructor. I teach a hip-hop-based format called MixFit every Tuesday and Friday at the YMCA, so it's a little bit of my own self-care, but also teaching others and just creating this environment of fun and stress-free and being yourself and just truly working out because you want to.
Speaker 1:What that is so amazing. I had no idea. I've known you personally for like two years. So dope, so dope, so dope. Thank you so much. I am happy that you manifested speaking here. Okay, Atlanta, Alter Dr Epps. Thank you so much for bringing my girl, Jessica, here. Let everyone who might not already be following you know where they can reach you.
Speaker 2:You can find me on Instagram at Career Caregiving Collide, or my website, which is JessicaCGuthrycom.
Speaker 1:And she spells it all the proper English way.
Speaker 2:All right, I need all the letters, please. Yes.
Speaker 1:Bye-bye, bye, hey, parenting Up family. We are here at the Altar Summit 2025. And I'm standing here with Mr Edward Smith. He is actually one of the partners with Dr Faron Epps. So you really do the work within your church to make sure that your parishioners, your congregation, gets to understand more about being caregivers, how you support caregivers. How hard has it been to get your congregation on board?
Speaker 4:It really hasn't been hard. Once we started the program, god would alter everything. They've also been very supportive with the liaison the lady that's over the liaison. They've really been supportive in giving us information, giving us things that we need in order to run our program. We just started our library. It hasn't been hard at all because they have made it easy for us with the resources that they've brought in to our community. So it's really been helpful.
Speaker 1:Fantastic, where is your church located.
Speaker 4:Our church is in Fort Worth, texas. We are Gift Ministries. My bishop is Bishop Donald Hayes and I brought the program in. Well, I brought the idea of the program to Bishop and Bishop received it. But I appreciate my Bishop because he's not only received the program but he's very active and working with the program.
Speaker 1:That's amazing. Is there one thing you can tell to others who may be interested in starting a chapter or a partnership with Alters? Is there something you wish you had known in advance, or something you can say that would be encouraging to them about starting their own partnership?
Speaker 4:Well, you know we can always say no something in advance, and what I mean by that is starting this journey. I knew nothing because my mom had Alzheimer's and she lived with it for five years and died with it. So it's very dear to my heart the program of getting the education out because we knew nothing. So I would just say, just like Mike said, just do it.
Speaker 1:That's a great way to end it. Thank you so much, mr Smith. I'm a Smith too. I'm Jay Smiles. That you so much, mr Smith, I'm a Smith too, I'm Jay Smiles That'll do it for us.
Speaker 1:What I will call manna from heaven for the black girl caregiver experience. I'm at Alter 2025 and if you got anything to do with dementia and you happen to be black and I mean black, meaning somebody in your lineage probably has something to do with being enslaved and was born in america. Baby, and if you identify or was a girl at birth, this thing is some kind of something. Okay. Okay, this is our own sorority. I don't know what you call it, but this is a reunion and we are seeing. It's homecoming, thank you, this is homecoming, and Bayou Classic and Essence and all the things. Somebody talking about boots and where your fans at up there in the church. Okay, that's how we doing it. But anyway, y'all, I am here with the one and only Dr Kalisha. Now, if you go look her up, her last name is Barnes Johnson. Now, if you look it up, her papers is Barnes, because she started publishing before that man put a ring on it. His name is Johnson. But I ain't about to go through all of that.
Speaker 5:Honey, I love you, eric, I love you. There we go.
Speaker 1:I had the pleasure of meeting her with Emory and the IMCC Integrated Memory Care Clinic y'all. She personally has walked me through, in the wee hours of the night, moments of stress when I thought my mama might be trying to go meet with my daddy up in heaven. She calmed me down and helped me figure out what to do and how to get Zeddy to the hospital on more than one occasion. There were times when you were the one, Anyway, that might be true.
Speaker 5:That might be true. Don't, don't. That might be true.
Speaker 1:I ain't lying dog.
Speaker 5:You're not. You're not. It's a blessing to support y'all.
Speaker 1:It is a blessing. She was the one when I was in Texas and Zeddy had the stroke here in Atlanta. You were the one that got the call and calmed my caregiver down.
Speaker 5:You remember that I do and got that sorority sister, through all them clearances to get where she needed to get, to make sure Zeddy wasn't by herself.
Speaker 1:My line sister got to go back with Zeddy and be in all the little ER stuff and on the ambulance, because the IMC don't play by their dementia care clients. Baby, y'all better get in these streets with us. You are a speaker here, which ain't easy to do. I mean this, this. This is top of the line in terms of dementia care and our community. Look, I feel like I'm know a little bit. I ain't a speaker, they ain't asked me to be a speaker and I know a little bit about it a little bit. But you a speaker and you are speaking on what? Tell us about it.
Speaker 5:Understanding dementia and I'm hoping to put a new spin on it for those who are, like I mean understanding dementia. I know we're going to talk a little bit about the different types, cause, again, there's more than one type of dementia. We're going to talk about medications that we use, what doctors should and should not say when they offering you these medications, how to handle some of the different behaviors that come with these different types of dimensions, because sometimes they might be seeing things and hearing things, sometimes they might be aggressive and pushing you, fighting you, sometimes they just don't care, and so we got to figure out how to be nimble, how to be dynamic, how to be creative when it comes to working through all those things and still being able to say I love you mama, daddy, spouse, partner, brother, sister, whatever relationship they got, yeah.
Speaker 1:Right. What is your research field? What's your passion? What gives you the right to tell us what dementia is?
Speaker 5:Well, I think, because I've been in this space for a while, whether it's as a clinician or a researcher, and mainly the work I've been doing is around African-American black adult daughters caring for their parents. We know research supports that adult daughters are doing the majority of the work in black communities. No disrespect to the spouses, to the sons, to the nieces, to the granddaughters, yada, yada, yada. The list goes on. But the adult daughters have been holding it down for a really long time. And you know what? We don't know what y'all need. We don't know what's working. We don't know how to help you. We don't know how to build your quality of life. We don't know how to help you help your parent. There's a lot we don't know, and so that is my passion, that is my mission is to make sure we are being specific about the relationship between who you care for and how those family dynamics matter in the dementia context.
Speaker 1:You got funding to do this.
Speaker 5:Yes.
Speaker 1:From who?
Speaker 5:You know everybody's heard of these letters lately, but NIH has funded me as well as the Alzheimer's Association, so I received a five-year grant from NIH. God willing, I get my fifth year. Saints, just pray, Just pray Saints. And then I just have another two-year grant from the Alzheimer's Association.
Speaker 1:Just a two-year grant. Anyway, what I didn't hear was fish fries we don't have no building fund over here.
Speaker 5:We're not a GoFundMe account.
Speaker 1:I heard so much, dr Kalisha, because what I heard was the top of your research mission and passion is for people like me, adult daughters caring for a parent, a family member with dementia, with Alzheimer's Because you're right. Every time I'm talking with before I got with IMCC. Everywhere I went, it didn't matter how highly ranked the facility was. They weren't really ready to engage with me, my questions and my concerns. They may have had a lot of know-how and knowledge about the test, about the medicine and about how to treat my mother scientifically, but about the care and concern from my POV, I would give them an F. So thank you, thank you for deciding that I'm worth it. Can I have a hug? You can you know I love you girl. Alright, that worth it. Can I have a hug? You can you know I love you girl? All right, that's it. And we're going to get her on the Parenting Up podcast real soon, all right.
Speaker 5:Thank you, I look forward to it. Hey, what's up? Parenting?
Speaker 1:Up family. Guess what. Have you ever wanted to connect with other caregivers? You wanna see more behind the scenes footage? Wanna know what me and Zeddy are doing? I know you do All things. Jsmiles are finally ready for you, even when I go live. Uh-huh, do it now with us on Patreon. Join us in the Patreon community. Catch everything we're doing Visit patreoncom forward. Slash JSmilesStudios with an N. Okay, this question is posed to a doctor. Hey, doc, I'm a caregiver. It sure would be good if you fill in the blank.
Speaker 6:Hey, doc, it would be nice if you would actually tell me, or tell us, what to expect, what we are supposed to do. How are we supposed to care for our person, our mother, cousin, whoever it may be? It would help if you would provide resources and resources that will allow us to reach out and gain a little bit more insightful information on what we're dealing with. It would help if you would guide us, to let us know when this happens. This is what you need to do. It would help if you tell us about the medication that you're giving our family members, our spouse or whoever it may be. It would help if you would just be a little bit more, have a little bit more empathy for us and not shove a diagnosis down our face and not really treat our spouse or our parent as a diagnosis instead of a person. Be with us while we're going through this situation. Be caring, be understanding, be patient, show us the way, guide us, because this is all new.
Speaker 6:This is not something we just woke up one morning and figured out. This is what we're going to do. This is the person that has cared for us the most of our lives and now we're in a situation where we have to respond or return the care. We're just asking for a little bit of empathy. We're asking for a little bit of guidance. Give us the resources that technically we don't have. We don't know where to go. We don't know where to go. We don't know what to do. Be patient and show us the ways. That's all we're asking for. We're not asking for anything else.
Speaker 1:Look at here, Jimmy. Look at here. Look at here I sound like, sound like Aiden Murphy.
Speaker 2:Look at here. Look at here. Look at here.
Speaker 1:Jimmy, were you sitting in on my mama's diagnosis? Jimmy, were you sitting in on my mama's diagnosis? Because I swear it sounds like you jumped right up in my head and stole all my thoughts for how I felt when my mother was initially diagnosed.
Speaker 7:Thank you, so very much, you're so welcome.
Speaker 6:Thank you very much, I appreciate it.
Speaker 7:It sure would be good if we were able to get the proper resources and information that is needed for a lot of the caregivers to be able to provide to the person they're caring for, as well as a lot of the medications that are actually given. A lot of times, a lot of the patient is given so many different medications and then you, as a caregiver, you're responsible for giving that, and that's a big job and you want to make sure you're doing it proper and in the right way, but also making sure you're not over-medicating the actual person, because that is important. So that would be good. A lot of the different additional hands-on, I think would be nice as a caregiver Because, remember you coming in in, you're just either a daughter, you're a niece, you're a granddaughter, um, it may be.
Speaker 7:You know you're a son, um, so it may be somebody that has the actual, I'm gonna say, medical knowledge. But to be honest, a lot of us don't. A lot of us are just stepping in and filling the shoes to take care, whether if it's our grandmother, the mother, the aunt or sister just stepping in to do the job the best way we can. But while we're doing that, we want to make sure we're taking care of them properly. So I think for me I would say having that additional training, because even though it's impacting so many people, it impacts everybody in a different way. Nobody's dementia or Alzheimer's is impacted the same way. What member A went through, member B may not go through. So I think just having all the pros and cons and the proper information would be needed. Now that's what I'm saying, that I think would work. But it's just me. I only wanted what you thought.
Speaker 1:So thank you so very much. You know how we do Listen. You know mama and them said I'm so happy you ain't add a talk for mama and them. This time, baby, you can speak for yourself. That's it.
Speaker 7:Thank you so much. You are so welcome and thank you for what you do. I think it is important to have somebody like yourself to be able to ask those questions, because what I'm going through somebody else may not be going through, so it may be different. So just being able to hear somebody say, oh, I never thought about that, that is a good question. So thank you, ladies, for doing what you do. I appreciate that.
Speaker 2:Slow down and treated family caregivers like the experts that they are. They are truly the experts in their loved ones. They're the ones that are with them 24-7 and oftentimes are met with a lack of curiosity and not given the credit for the work and the intentionality that goes into how they've been caring for their person. So slow down, be curious, ask us questions and truly listen to what we have to offer as we help support our loved ones living with dementia For free.
Speaker 1:She didn't say that part, but I did. But we're doing it for free. Sorry, she's sweeter than I am. I'm a comedian.
Speaker 5:We out.
Speaker 1:Snuggle up and so amazing, I actually had a one-on-one interview with the Dr Faron Epps. I mean, this lady has single-handedly changed the game on what it is to actually get grant money, institutional money, and combine it with the needs of the black community and the faith community, how you gonna get government money and pastors to listen to you, to change the way they reach out to their congregations. Can this lady run for president? I don't know, but getting to talk to her, they gave me a solid 30 minutes in the middle of her summit. Get out of here. Whose life am I leading?
Speaker 1:I got to sit in on an improving through improv, actually watched how they teach people. I might actually have to take the class myself Because I was like, okay, wait, I can't even digest all y'all doing, I need my own notebook. That was dope. I ran into one of the biggest, baddest social media icons in the space of caregiving the one and only Jessica Guthrie. What, yeah, y'all know how it go. Y'all know how it go. That's my boo. And then Dr Kalisha I mean the way she holds it down over at IMCC and she's actually the one that kept me calm when Zeddy had the stroke. Like these people are at the top of the food chain when it comes to this industry. And they care about Zeddy, they care about me, they care about y'all, and they're right here making it happen.
Speaker 1:At Alter, they took time off work Y'all. We not by ourselves, we're not by ourselves, we not by ourselves. We gonna keep pushing. We gonna keep pushing, cause Alzheimer's might be heavy, but we ain't gotta be. Thank you for tuning in. I mean really, really, really. Thank you so very much for tuning in, whether you watching this on YouTube, or if you're watching this on YouTube, or if you're listening on your favorite podcast audio platform. Either way, wherever you are, subscribe, come back. That's the way you're going to know when we do something next. Y'all know how it is. I'm J Smiles. I might just drop something hot in the middle of the night.