Turning Alzheimer’s Pain into Purpose: J Smiles on Georgia Focus

Season Seven Welcome And Gratitude

SPEAKER_00 0:00

What's up everybody? This is a season seven opening. Can you believe that seven seasons? When it's a time for thank you for your love, thank you for your support. Thank you for always pairing me up. I am right here in the heart of it all at iCar Studios in Atlanta, Georgia. Just had a phenomenal conversation with John D ⁇ M and his show Georgia focus, focusing on real food, real activism, real love, real support. Parenting up caregiving adventures with comedian Jace Miles. It's the intense journey of unexpectedly being fully responsible for my mom. For over a decade, I've been chipping away at the unknown, advocating for her, and pushing Alzheimer's awareness on anyone in anything with a heartbeat. Caregiver knowing OD and village members just willing to prop up with caregiver. You are in the right place. Ah, this is great. I hope you enjoy my daughter's podcast. Okay. Today's supportive shout-out comes from YouTube at IVO P A I G E. And I quote, hmm, question mark. Someone I remember in younger days was an engineer and an inventor. Emoji thumbs up.

unknown 1:41

Ah!

SPEAKER_00 1:42

Thank you so much for uh acknowledging that it's true. And someone is me. Yes. If I'm gonna complain about products that need to be invented or modified in the world of dementia, then maybe I am the solution to the problem that I see. I appreciate you acknowledging it. And you know what? I might pull out my sketchpad and see what I got. I ought to be able to make these adult briefs work a little bit better than they are currently working. If you would like to be the recipient of a supporter shout out, please leave a review. Apple Podcast or YouTube. We're parenting up everywhere. Thank you.

SPEAKER_01 2:25

Jay Smiles, it's good to see you today.

SPEAKER_00 2:27

Same here.

SPEAKER_01 2:28

Really good to see you. I I I I met you at an Alzheimer's Walk in Atlanta.

SPEAKER_00 2:33

Yes.

SPEAKER_01 2:34

Um, and and I something drew me to you to come talk to you. And Jessie, you have a podcast about Alzheimer's because you've been deeply touched by this disease.

SPEAKER_00 2:43

I'm a comedian, a stand-up comedian too. And so on stage, what I say is my mom's brain broke. That's right, yeah.

SPEAKER_01 2:49

You said that's what happened.

SPEAKER_00 2:52

And that's how I became as you know, like 10 toes down in advocacy and trying to raise awareness, help caregivers. And you're doing it.

SPEAKER_01 3:03

Now you're an attorney and a and a comedian, but an attorney too. You were one or you are one. How does that work?

SPEAKER_00 3:10

Agreed. I don't, you know what? Truthfully, John, I don't know if I always know how it works. But um academically, I have a law degree. Okay. I have a master's in this product design, and I have a BS in mechanical engineering. And I worked in corporate America or in the private sector with each of those degrees prior to my mom being diagnosed. Like it was only about 90 days between when my dad died and when my mom basically started to fall apart. So I put my previous professional pursuits, I thought it was just gonna be on pause, and and it ended up pretty much being a hard stop.

When Grief Masked Alzheimer’s Symptoms

SPEAKER_01 3:58

14 years you've been dealing with it. Yes. Now now your father was your mother okay before your father passed away? Yes. That's what that's so weird, is that happens all the time.

SPEAKER_00 4:08

And I didn't know it.

SPEAKER_01 4:10

Yeah.

SPEAKER_00 4:10

I did not know how prevalent it was for a catastrophic event to like speed up Alzheimer's, for lack of a better term. I didn't know that could happen, John. So when my mom was just showing signs of something other than grief, and I have to say that what was kind of demoralizing at the time was her, you know, um, my mom and dad lived uh in Montgomery, Alabama. I did not live there at that time. And my mom's pastor, her doctors, some of her closest friends and confidants, they told me I was overreacting initially. Yes. They said, you know, I've never been married. So they said, well, Jay, you know, your mom, there was the love of her life, and she found him on the couch, and that likely is just depression. She's just depressed and she is mourning. And I thought, I don't think this is mourning. I know I've never been married, but I know my mama. So it was, it took a minute for me to find medical professionals who were willing to run the test and do the digging. Um, my mother, at the time of my dad's death, uh, my mom was just like 61, 62 years old. She was still working a full-time job. She's a CPA, forensic accountant. So she did really high-level complex litigation, dealing with big old numbers and big, big finance stuff. She had cases on the books, John. She had a staff, maybe three CPAs worked for her. So nothing gave me reason to believe within six months of my dad's death, I would be fully responsible for her, for his estate, for all of their affairs. It it was it was an avalanche. Yeah.

SPEAKER_01 6:18

And it was 14 years, but now also you have a podcast about caring for Alzheimer's people. I love that. Thank you. Thank you. You know, it's it's something that you know, my grandparents had it and I dealt with them. But it's something that needs to be talked about. I appreciate it. I appreciate it. And I love that you have a podcast. You go out to the Alzheimer's music, the Alzheimer's Walk and all. And uh what are you telling on your podcast?

SPEAKER_00 6:44

Uh thank you for teeing it up to me like that. Um, I tried very hard to stick with the lighter side. We lead with levity, believing that humor heals. Comedy came because of caregiving for me. Okay. I did not, it wasn't on my bingo card, John. I was into that.

SPEAKER_01 7:04

I was gonna find out how you get comedy.

Humor As A Caregiver Survival Tool

SPEAKER_00 7:06

Yeah, okay, well, look, I I I'll get we'll I won't jump ahead. It uh it was uh an escape hatch for me at the time. I didn't know I would start to do it professionally, but the podcast is titled Parenting Up, Caregiving Adventures with Comedian Jay Smiles. And I'm very dedicated to the community of family caregivers and talking about the funny stuff. We hear enough of the hard stats and the data from scientists, from doctors. I mean, if I get one more research study in my inbox, I'm I'm probably gonna pull out all of my hair, especially because the research study isn't telling me there's a cure. Like, I don't even know how much more data do I need you to give me as a family caregiver. Now, I want the doctors and the scientists and the research people, you all do all that data. But it can be overwhelming a lot for a family caregiver and for their village of supporters. So we talk about after you get through the crisis, how funny it was that your dad maybe walked outside in his underwear to cut the grass. It's funny later. And those are the kind of things that we like to talk about. And we also bring on, you know, other family members or experts in the field that can tell family members, hey, this is how you tackle a scenario or an experience uh ABC.

SPEAKER_01 8:39

Who had Alzheimer's, but you you're not making fun of them. It's just it helps you deal with it. That's correct. You you you you find humor it. I I do that all the time. Good for you. And um I that's why I like that, because you s you you deal with it too. And um, you know, it's just it's just natural that you do. Yes. I mean, it's a terrible disease. It's terrible, folks. It's terrible. But it's I can't imagine anything worse than that.

What Late Stage Care Looks Like

SPEAKER_00 9:03

I even had an uncle with uh sickle cell, and you know, I I was probably a teenager when he passed away. He beat the odds for his the longevity of his life, but he didn't get to see 50 years old or anything like that. And you're right with how awful the disease is, because they can't communicate um at all what they're feeling, what they need. And that is why, in my opinion, it is one of the harder things to watch happen to someone you're close to because you don't know if they're making that face involuntarily, does their stomach hurt? You know, do they have to go to the bathroom? Are they hungry? You have no idea. Right, right.

SPEAKER_01 9:48

Now, how how's your mom now? Is she pretty far along with it?

SPEAKER_00 9:52

Yes, she is. She is very far along scientifically, but her spirit is so strong. I think, quite honestly, she's just wheeling herself through her heart to give a little more and to push back on the disease. She pretty much is not verbal anymore. You may get a uh huh, uh-uh, no, yes, I love you. But other than I love you, everything else, you shouldn't trust it. If she says yes or no, I'm hungry or not, ah, I don't care. If it's time to eat, please put the food in front of her. Don't wait for her to ask. She's incontinent. She can walk with help. Like someone needs to guide her uh with her hands or something like that. She cannot be alone. She needs 24-7 care. She's not able to ask for anything or do anything for herself.

SPEAKER_01 10:49

How do you do that? How do you balance that?

Building A Global Caregiver Community

SPEAKER_00 10:52

Um, to be quite honest, I don't know if it's always balanced. I think I think I think if if someone if someone were to really follow me and my team or uh my podcast team or my care team, it would look like uh peaks and valleys several times a day. We got a lot going on, then nothing going on. Then a lot going on, then nothing going on. So we are a part of a few different um podcast communities where individuals asked to be uh interviewed. Like I remember Patty Davis, to be quite honest, I thought I was getting catfished, John. Um, when I was her PR team reached out, um, you know, uh former President Ronald Reagan's daughter, because she had a new book coming out about her time being his caregiver and how much healing that she actually uh was able to receive from your relationship with her father in caring for him, caring for him toward the end. And so I've had uh people like her, Patty Davis, as well as uh neuroscientists or pastors, and then just the sister or the wife or the child of an average everyday citizen. Literally, people from all over the world have contacted us to be on the podcast because family caregivers make up the backbone of the healthcare system in every nation, John. I knew we did it, but it wasn't until people started reaching out to me from Mexico, from Brazil, from Switzerland, from France, from Canada, that I was like, oh my goodness, without the help of family caregivers, everything would implode. That's right. Yeah.

SPEAKER_01 12:38

Yeah, it would. And do you do you have um you have doctors come on and talk about the the You mentioned you had scientists on there, but you have doctors come on and tell people what to do about it?

Dementia Types And The Right Experts

SPEAKER_00 12:49

We will have, I would say uh maybe doc overall, doctors probably come on uh 25 to 30 percent. We really try to lean into having caregivers tell real life experiences so that our community can feel seen. That's what we've heard the most is you feel so isolated, you feel alone, you feel like nobody else knows what you're going through. Uh, but we do make sure to have medical experts that pertain to the dementia. What what many people it gets a little confusing. Is Alzheimer's dementia or is dementia Alzheimer's? Are they the same? And so, you know, there are double-digit numbers of different dementias. Alzheimer's is unfortunately the most popular. I'm saying popular, I would just say the most prevalent, I guess. Popular makes it sound like we like it. So we don't like it at all. But so there's Alzheimer's, there's frontal temporal dementia, Parkinson's, Down syndrome is a dementia, and that um shocks many people when they hear about that. So we will have different dementia experts, sometimes gerontologists, neurologists, neurosurgeons, uh come on and talk about what they've experienced. Now, one thing that I feel very um that I'm very proud of, very excited to say is typically my team, we're able to identify medical professionals who also have a personal experience in caregiving. Maybe it's a spouse, a sibling. Um, even if their caregiving may not be Alzheimer's, if you're a neurosurgeon and you're having to offer any care to an adult, you get it. You do, you get it. And your questions change, right? Your answers change, your empathy is different. So we do uh our very best to make sure that even if you have the medical expertise, they're like, uh, but have you ever cared for anybody, even for a month? And then that's what really makes you a part of a perfect candidate for the parenting up community. There are individuals in their 30s being diagnosed with Alzheimer's. And the thought is, scientifically, you have somewhere between three and six years if you have an early on-site diagnosis. I am, well, I'll never be able to prove it, but I do believe that my mom is still with me and can walk and give facial expressions of delight or despair because of the very significant changes we made as soon as her diagnosis was given to us. And I said, okay, her nutrition, we did something different for her nutrition. We took all the medicine they suggested. And it has helped. We're in year 14 and looks like she could have another 10 in her. And I'm like, whoa, I I gotta make sure she let outlive me.

unknown 15:59

No, right?

SPEAKER_01 16:00

Jay, it's been a pleasure having you today. It really has been. I really I I appreciate you talking to me about this. It's uh we need to talk about it more.

Share Your Story And Subscribe

SPEAKER_00 16:07

I agree, I agree. And thank you so much for the invitation. Thank you for all the work that you do just to make sure that the community of Georgians have a voice and are able to tell um their wins and their losses in a place where they feel seen. That's very important. Today's snuggle up. Thank you so much, John from Georgia Focus. Y'all, I gotta admit, 14 years in, telling the story of my mom, how I became a caregiver, and that caregiving led me to comedy, sometimes it feels like, I need to say that again? Doesn't everybody know that already? But you know what? This conversation today was cathartic for me. Actually, because of Don's personal story with dementia and how he is focusing on being a part of the Alzheimer's Association, that's where I met him at the Alzheimer's Walk in Atlanta, it just reminded me that it's never old. You know, it's it's almost like telling somebody where you grew up or who your favorite teacher was or what your favorite color was. It's a part of your story, it's a part of who you are and how you've come to be. So I my biggest takeaway in the snuggle up is go ahead and lean into whatever your journey has been. Share the story as many times as you can, because not only are you impacting the lives of strangers, but you know what? You're healing your own scars. And how the hell can that be bad? Thank you for tuning in. I mean, really, really, really thank you so very much for tuning in. Whether 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 gonna know when we do something next. Y'all know how it is. I'm Jason Miles. I might just drop something hot in the middle of the night.