The HoneyDew with Ryan Sickler - 331: Kelsey Cook and the Dementia Hat Trick: Jokes, Genes, and Greif

Episode Date: April 28, 2025

My HoneyDew this week is comedian Kelsey Cook! Check out her latest special, Mark Your Territory, now available on YouTube and Hulu, and her podcast, Pretend Problems, co-hosted with comedian Chad Daniels. Kelsey joins me in the studio this week to highlight the lowlight of her mother's battle with frontotemporal dementia (FTD). We dive into the emotional and financial rollercoaster of caregiving, and how genetic testing plays a role in shaping future plans. Plus, Kelsey shares what it's like trying to land jokes in the world's saddest room. SUBSCRIBE TO MY YOUTUBE and watch full episodes of The Dew every toozdee! https://youtube.com/@rsickler SUBSCRIBE TO MY PATREON - The HoneyDew with Y’all, where I Highlight the Lowlights with Y’all! Get audio and video of The HoneyDew a day early, ad-free at no additional cost! It’s only $5/month! AND we just added a second tier. For a total of $8/month, you get everything from the first tier, PLUS The Wayback a day early, ad-free AND censor free AND extra bonus content you won't see anywhere else! https://www.patreon.com/TheHoneyDew What’s your story?? Submit at [e-mail] Get Your HoneyDew Gear Today! https://shop.ryansickler.com/ Ringtones Are Available Now! https://www.apple.com/itunes/ http://ryansickler.com/ https://thehoneydewpodcast.com/ SUBSCRIBE TO THE CRABFEAST PODCAST https://podcasts.apple.com/us/podcast/the-crabfeast-with-ryan-sickler-and-jay-larson/id1452403187 SPONSORS: GhostBed -Head to https://www.GhostBed.com/honeydew and use code HONEYDEW to get an extra 10% off your entire order Cure Hydration -Get 20% off your first order! Stay hydrated and feel your best by visiting https://www.curehydration.com/HONEYDEW and using promo code HONEYDEW

The Honeydew with Ryan Sickler. Welcome back to The Honeydew, y'all. We're over here doing it in the Nightpan Studios. I'm Ryan Sickler, and I'm going to start this episode like I start them all by saying thank you. Thank you for supporting this show. Thank you for supporting anything that I do. And if you have to have more, then you got to have the Patreon.

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We're highlighting the low lights. I always say these are the stories behind the storytellers. And I am very excited to have this guest back on the Honeydew. Ladies and gentlemen, Kelsey Cook. Welcome back to the Honeydew. Thank you. Thanks for having me. You're veryew. Thank you, thanks for having me. You're very welcome, thank you for being here.

First of all, your hair does look fire. Thank you so much. As a lady, was it nervous, were you nervous to go from longer blonde to shorter? Is this considered, what would you consider this? This is like reddish. Yeah, yeah, yeah. It was like red, red right when I did it

and now it's a little more in the orangey category, I guess. And you're also a lady in the eye of the internet. And you're updating your appearance. The internet's so sweet when you do things like that. It's really the best. It's truly like, oh, I wish all these people were in my life in a more consistent. Facebook especially, it's the olds. like, oh, I wish all these people were in my life and I'm working. It's like Facebook, especially.

It's the old, you know, it's like old men who will leave comments in all caps, like screaming at me, hate the red, back to blonde. And I'm like, hey, Dale? Like, let's not. And it's always, every time, if I go click on their profile, says single, it's like, listen, I know that's not the case for everybody who's single. A lot of wonderful single people out there. But if you're going to scream at women on the internet,

like back to blonde. About their appearance. Likely not a lot of women super into that. Well, you look great. Thank you. It's great to have you back. Before we get into your story, please promote everything and anything you'd like. Yeah. Right there, Kelsey Cook. Hello. My new special, Mark Your Territory, is out right now on YouTube and Hulu. You can go watch it wherever you want to watch it. My podcast, Pretend Problems with my boyfriend, who's also a comedian, Chad Daniels, is out everywhere. Would love if you checked that out. And then I'm on tour. You can get tickets at kelseacook.com and you can follow me on all social media at Kelsey Cook Comedy.

So last time you were here, what's that? I said back to you. Back to me. It feels very new. In the studio? Yeah. I love it. Last time you were here, we talked about your mom.

And can you just give us a recap of, cause I don't mean to be ignorant, I do some of these, I forget. Is it, was it dementia? It was? Yes, yeah. You do so many episodes. I also am ignorant between,

and I've had, my grandmother had dementia, one of them, but Alzheimer's, dementia, like I just lump those all together. I know that they're not to be lumped together. Right, right. It's okay though. It's interesting you say that because that's become such a big part of the awareness that

people are trying to get out with this particular disease because it's called frontotemporal dementia, FTD, and it's the most common form of dementia for people under 60. And it presents very differently than Alzheimer's. It's not just memory issues, it's behavioral changes. Just really their personhood can shift so dramatically. And so it goes really underdiagnosed for so many people because doctors will just be like, I think this is like a personality disorder. They, there's not enough, I think education around it yet.

And so unfortunately families and the people who have it can go like years and years not understanding what's going on, not having any sort of like real support. And watching this person change just like Completely change. Yeah, they know it. Are you know what? I mean, like are you aware? Like hey, I know I never used to do this or behave like this before you start to lose your mind You are aware that you're changing. I think so. I mean, I think it's so different person to person, but my mom She would be like god., God, I'm so anxious to drive.

Trying to navigate for her was not a thing. But she got so worked up, so anxious trying to navigate places. She was having a lot of memory issues, a lot of paranoia. I can't remember if I talked about on the episode two years ago that this was maybe two, three years before we actually got a diagnosis. She had tried to move down here to LA where I was living at the time. And I got a call on New Year's Eve day from the police saying, your mom called 911 because she thought she was being followed by the cartel. We're here with her in the grocery store parking lot and she won't get in the ambulance with us because she thought she was being followed by the cartel. We're here with her in the grocery store parking lot and she won't get in the ambulance with us

because she doesn't believe we are who we say we are. Like- And also our paramedic is Puerto Rican. And she's worried. Oh, what's this? She's worried. If we were all white, we could get her in, but it is the cartel and she's-

It's a sharp cookie. What is it? What? She's got an eye for that shit. Oh, Christ. Oh. This podcast is so great because you really, it's like, you do have a gift for taking these dark things

and making them, I mean, that's the whole point of us trying to like heal the trauma is to find the funny, you know? It's sweet to say, a lot of people in the comments, I can tell they're new here, like, does this guy really just laugh and fucking everybody's worst times right in their face? And I'm like, not like that. No, well, the people you are, like, we all love you.

We like, we know going in, this is what we're gonna talk about. And it's good for us too, but anyway, so like that, those sort of things started to happen. And this was years before they got into this. And why are they calling you? Are you her like emergency contact or she's saying call my daughter?

Call my daughter, yeah. Okay, she is. Yeah, so, because my parents have been divorced for a long time. It's just me and my brother and I'm older. So I think a lot of that stuff kind of fell onto me. But yeah, so you're seeing these things happen where you're like, that's not my mom.

This is so, so strange for her. And we got an MRI at the time. She took the memory test at the time, nothing unusual. They were like, there's some plaques in her brain, but like kind of typical neurodegeneration stuff. We're not that concerned. neurodegeneration stuff. We're not that concerned. What I think I had started with when I was here last is that at the very beginning of 2021, I found my mom face down on her floor and I called 911. She was taken to the hospital. She had a perforated stomach ulcer. Her gallbladder was inflamed and full of stones and she had had COVID. So they did emergency surgery, but because we didn't know that there was this underlying dementia,

anesthesia can just like super accelerate dementia. Is that right? So she came out of surgery- How do we fucking figure that out? Because all the poor people that had it happened to them. Yes, where in an hour surgery, you completely lose that person. Is that right? Yeah.

I mean, it was so, it's like the most heartbreaking thing. When I hugged my mom before she went into surgery, I had no idea that that was the last day I would have with my mom. I want to just be sensitive with my words here when I'm going to do this, but you're saying that prior to literally that surgery, your mom was still normal. Still, I mean, like that, the LA weird spell of the paranoia stuff, that was obviously super out of character for her. But we moved her back to Washington and it felt like once she was kind of in more of a rhythm, she was mostly herself. We were starting to see little

things here and there again, but overall it's like, I'd still- Like what percentage, 80% of you still? Yeah, maybe more. But I would- Even more. Like, yeah, I would still talk to my mom on the phone every day, mostly felt like it was her. It was just small.

That's what's so hard about this disease. It's like, they can kind of become apathetic or just parts of their personality start to change in a way we were like, God, what the fuck? Like, why is my mom being like, like, she's never been like this. And it sucks because you as family members get frustrated, especially when it's I think, like a parent child, because you want your parent to be your parent, like you don't want to have to parent them. So it's easy to be like, God, why? What is going on with her? Why is she acting like this? But you just don't know that that's what's happening until, unfortunately, it's, in our case, was way past a point of, there is no cure for this disease, but it just that surgery and the anesthesia took her to this like way. So when she came out immediately, you saw a difference. I mean, she didn't know who I was.

She didn't know where she was. She thought she had time traveled. She like, I'm telling you it totally. Whoa. And then she became catatonic like six weeks into that. They were finally able to do an MRI She became catatonic like six weeks into that. They were finally able to do an MRI and that's when her brain at that point was like so significantly shrunk and so many plaques

and that's when they gave the diagnosis because frontotemporal, it's the front and sides of your brain which like is very behavioral, stuff like that. So again, you're talking to a comedian here. What happens to the body? What is the cause of death? How do we die?

Do you forget to breathe? You know what I mean? Is that, am I a total idiot here? No, no, no. And that's a great question because I also, like I had never heard of this disease before my mom having it. So one of the leading causes of death is pneumonia. Another one is UTI, which seems-

I hear that so much. Yeah. And even for male patients too, like UTI and it gets up into your system and it like really fucks you up. Well, it can go to your kidneys so quickly and then, and it's just, it's so hard because they might not be experiencing pain the same way that other people will. They might not be able to even communicate anymore. Or to know what the hell it is. Exactly. Wow.

So you can see typically older people when they get a UTI, their mentation just goes south very quickly. You're like something's going on here and UTI, their mentation just goes south very quickly. You're like something's going on here and UTI is one of the first things they check. So yeah, pneumonia, UTI also with FTD, they have difficulty swallowing increasingly for most people. And so that can become an issue where it's like maybe they just are not able to swallow anymore and then you're dealing with that. So it's like I've, this is her fourth year since her diagnosis and it's, I've never had to face death like this. You know, I've been lucky that before

my mom getting this disease, I had not truly lost a significant person in my life. No. No grandparents. Right. Right. I lost two of my grandparents when I was very young and the others I still have. And yeah, I mean, there's nothing darker and harder than watching your parent, like

losing them slowly, but there's still a lot. It's like a very, this like horrible prolonged grief. It's like, it's so painful. It's like a double death. It's a double death, yeah. You've lost mom. Now there's this shell of what used to be mom and now we have to just wait time. This is going gonna take this case away. And you know it's gonna be, yeah. Yeah, and it's coming.

And it's not even that lady anymore. And you can't even say the shit you'd love to say to your mom on her way out because she might not even know who the fuck you are or registered or anything. Yeah, it's. Man, what a mind fuck. Yeah, it is truly the worst. How long was your mom in the hospital and stuff five months five months? Mm-hmm. Did she?

When did what finally happens so? And I apologize if I'm repeating myself too much from two years ago but so she she was in the hospital for five months when she went catatonic and they Diagnosed her they thought at that time that she had six weeks to live. So my family and I were just completely shattered. I mean, this just was so out of nowhere. Then she pulled out of being catatonic, was doing better, but then would go in and out, wouldn't eat, would start to eat again, finally was discharged after five months. And so she is in an adult family home now. And-

Right now she is. Mm-hmm, yep, yep. Is there been any, when you go visit her, does she know you? So- Or does she know you now? Because you know what I mean? Does she learn who you are? Does that make sense?

Yeah, totally. It varies. So I was there over Christmas and I'll see her again this weekend. She didn't know who I was the first day and then knew, seemed to know who I was the second two days. So I FaceTime with her almost every day and she seems to know me most of the time over FaceTime. But it's hard.

If you ask her how old she is, because she's 72, but if you ask her how old she is, she'll say 42. And so then she thinks that her kids are like six. Oh, so the math, math's for her. You're not... So it doesn't, sometimes when she doesn't know it's me? You're not... So it doesn't... Sometimes when she doesn't know it's me, it's not necessarily that she doesn't think... That's interesting, isn't it?

Yeah. Like for the brain to be so fucked up, but then to be like, no, I'm 42 and that makes my kids this age. Yes. To know that. Yes. Like the years and the difference. So wait, two years ago, you're here talking about your mom and at that time, they thought

six weeks? No, that was when she first went in the hospital. Okay. But she has- And here she is still alive. Four years later. Four years later. Four years later.

She has gone on and off of hospice like four or five times, which again, this disease, it's so crazy. It can just drop suddenly and they'll be like, Hey, I think this is it. I can't remember if this had happened before I had come on last time, but I flew to London to shoot a TV show and they called and they were like, this might be it. I think you did say you flew back. Right. Yeah. Yeah. And then she pulled through, but it really can where you're looking at them and you're like, Oh yeah, I think maybe this is it. And then they can just like bounce back a little bit, be kind of stable for a while. So she's been stable for maybe like a year now.

Yeah. That's the last time she was on hospice maybe. But yeah, so she can still talk, but it's very- Is she bedridden? Yeah. For years, how do they get you up and move you around? They have a lift that they put her into a wheelchair every day, so she has time in the wheelchair every day, but then goes back, because she broke her hip

the day before she was supposed to be discharged from the hospital, because they weren't watching her close enough. There's been so much shit with the, I mean, your, oh, that's right, last time I was on, you had just had your whole horrible thing in the hospital. Yeah, two years ago, yeah, yeah. So yeah, I remember we were talking about that.

Stay out of the fucking hospital. We were talking about that, stay the fuck out. Stay the fuck out of the hospital. But like, take care of yourself as best you can, because God, it's- I had Dan Van Kirk tell me like his, I wanna say it was his 90 year old grandmother, like they were trying to move her from one bed to another,

completely dropped her on the floor and like cracked her back or head, everything. Jesus Christ. I'm like Jesus Christ. I mean it's unbelievable, like your whole life you grew up thinking like, oh the hospital. Yeah, that's the place. So people get better.

But no, that's where they go to die. No, it's like you don't want to be in there. I looked up the list of people they've killed at Cedar Sinai. It's an extensive list. Shut up. Oh, dude, you are dark as hell. That is... I looked up celebrities who've died at Cedar Sinai. Not that I'm a celebrity anyway, but my point is, well,

if Bill motherfucking Paxton is getting... Charles Bronson they're killing at Cedar Scion. I not that I'm a celebrity anyway, but my point is, well, if Bill motherfucking Paxton is getting Charles Bronson, they're killing it. Cedar Scion. I fucking death wish they're killing. Who am I? I know they've got insurance. They got SAG after a fucking shit. I got Blue Shield Silver.

OK, I know they're fucking not coming for me. They're killing those. Oh, fuck. Is he who's in Casper? He was. I don't know if he's in Casper these torn our twister he's Alien I'm thinking who's the bill that's in Casper you guys know I'm talking about anyway So funny Yeah, fucking got that twister money and still going down who Who knows? And then he did that Mormon show, Big Love on HBO with him.

Oh, yes, yes. Like he's Bill Paxton. Fucking weird science from back in the day. All kinds of shit. Yeah. But you got to make sure. Dead at Cedar Sinai. What the fuck? Bill Pullman on Casper, she says. Oh, yeah. That was pretty close. Yeah. So my mom fell in the hospital the day before she was supposed to be discharged,

broke her hip. They had to keep her there for longer. And then we found out a few weeks after she had been discharged that they didn't do a follow-up they were supposed to do, so her hip never sat right. And she can't communicate, and we also don't know if she even feels certain discomforts, the same as other people, but it's so hard too because you hear these absolutely gut-wrenching stories of people with dementia who get up, fall, have a brain bleed, and that's how they die. And so it's so hard because it's like, I hate more than anything that my mom is bedridden. And I also would have been terrified every day too, thinking about her, like just trying

to walk out the front door, slipping and falling, getting a brain bleed. It's like, it's all horrible. Every, there's like no good part of it. So yeah. And last time you were here, I asked you about getting genetic testing. Yes. And I asked that because I had to end up going through genetic testing because I kept clotting my, they didn't know what they were telling me. It could be leukemia, cancer, all kinds, hot, whatever.

Lymphoma, and I'm freaking the fuck out. And it turns out it's just a genetic thing, and then everybody's gotta get tested. And I was saying to you off, Mike, like that even if you don't talk to your family anymore, there's so many of people who come on here who are like, I don't talk to my parents or my dad or whatever, they're fucking, and I get that.

But do everything you can to find out what their fucking genetics are. Because you've got that imprint, regardless if you ever talk to them again the rest of your life. And I don't find out I have this fucking blood disease till I'm 42. How old are you?

I'll be 36 in a couple months. So imagine you've got a disease right now you don't even know about, and it doesn't even manifest into you until you're six more years. Yeah. And you're like, what the fuck? I've had this my whole life.

Yeah. So, you know, getting ahead of that is, again, why I was telling you, if my daughter does have this, I can educate her, like no birth control, blood clots, all these things. And again, I'm a man, you're a female, that disease may affect you differently.

And if you have a daughter, you can pass that on and so on and so forth. So you also said I was the only person of all the people who asked you if you would do genetic testing. And I find it disturbing that a professional clown is the only person in this world of medicine and everything you're in saying, hey, maybe you should consider genetic testing.

Nobody at the hospital or anything, no one? No. Not wild? Because even the people in the hospital, it's like people don't know enough about this disease because when people get FTD, it can either be genetic or sporadic where it's environmental whatever. Oh, is that right? Yeah. Okay.

You know, I think like diet lifestyle sort of those things. So my mom had not been tested. I ordered the test for myself a couple of weeks ago, sent it in. I'm about to see her tomorrow, actually. I ordered a test for her, so I'm going to do a cheek swab. I started to dig more into my family history and ask more people, do we have great-grandparents with dementia? I come to find out we do have two great aunts that had dementia. Mom side? Yes, my mom side, her dad side. And so, we don't know for sure if that was FTD what they had or if it was another type of dementia. But either way, I don't know. I was kind of living in the ignorance is bliss thing for a couple

years where I was like, if I find out I have it, when am I just going to stress out until it hits me? And then the more I started to talk to people who lost a parent to FTD, they did the genetic testing, found out they have it. Now they are participating in so many like clinical trials. They're able to use their blood and everything for other research. It's like, you know what? It started to feel not irresponsible, but I could be helping so much more if I do have

it. I could be helping myself and others to find this out. So we'll see. Tell me, how can you help yourself? Let's start there. What can you do? Okay, let's go back a little bit Are you nervous as shit to get these results? Yeah. Yeah

Is it? definite if you have I think it's one of four genes that could be mutated if you have a mutated gene It is like I think 80% chance and that means it'll affect you this one's for people under 60 This is a younger persons. There are stories I've read Where people start to get symptoms in their mid to late 30s and pass in their early 40s? So you're like, I mean? I'd be like, oh, here it is, God damn. It's all said already, God damn.

I'd be terrified to forget. I'm not, like this isn't, I'm not a good person mentally for this. I'm like already very, like a very anxious, just like in my head, a worrier. So to have any of these, like exactly, you see any glimpse of it and you go, what the fizz is fucking it.

Here it is. Here it is, I don't know. Fucking is, I'm start forgetting everything now. Oh my God, yeah, yeah. It's a... Sometimes the scariest thing keeping you up at night isn't a ghost story, it's replaying that rock bottom breakup or that sketchy roommate from 2003,

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person, but I like felt myself get like a little more attitude-y sometimes. Like a little more if somebody did something on the road I'd like honk instead of just being like oh that sucks. And my therapist called this haircut a cunty bob. Ha ha ha! A cunty bob, that's wild. Because she has to, it's like, it's not a Karen. It's like a cunty bob. And it's like, oh my god, that's so funny. Cause there is something about this haircut,

I feel like a little, I don't know. I don't know how to explain it. A little more edge? Yeah, I don't know. And, but when I like honk and trap, we know, I'm like, is this it? Like, am I having, like, am I gonna become different? It's really rough to see all these things,

because you wanna educate yourself. Of course, like, I know so much about the disease now, but also you don't wanna use that to ruin your day to day. But it's very terrifying. I can only imagine. I mean, I have two genetic diseases. One I don't find out about until I'm 42.

The other one, the first one we found out we were in like high school, I want to say, like ninth, tenth grade. Oh my God. So young. But you got to know. You have to know. Yeah. Oh my God, so young. But you gotta know, you have to know. You have to fucking know because that's not just, what you're dealing with isn't just

a simple like, oh well, you know, it could be breast cancer. This is a fucking- This is a life changer. A life changing ticking time bomb and you don't even know it's coming if you don't have it. Exactly. A life expectancy. I mean, if I have it, it would completely change my life. How old's your mom?

She's 72. And the last five years you said she's been dealing with this? Got diagnosed at 68, but was showing, you know, we look back now and we do see some of the symptoms, maybe 65, 66. So yeah, I think it's important not just for myself to know, but for my family too. Because it's like if I have it, of course I'm going to tell my brother, like, you should look into this too. He has daughters. It's just a horrible thing. Has he gone and done it?

No. I kind of wanted to wait and talk to my family about it until I got the results because I also didn't want to like scare my family unnecessarily. I don't know. It's so funny. When I do this podcast, this feels like therapy. It's a very public podcast, but yeah, I don't know. I feel like it's a big thing to talk about. I don't think I'd be ballsy enough to call your hair a cunty bob. Especially if you're paying me. You know what I mean? Like, let's pump the brakes, bitch. But she has the hair a cunti bob, so that's why she was like,

listen, it's a cunti bob. I was like, that's very funny. So yeah, I will definitely keep you updated when I find out the results, especially because I feel like you were one of the first people to even be like, are you gonna do that? Like, is this even genetic? People just, some people don't know about it

or understand it. But also you're saying it's kind of a thing that they're not even really sure of until it sort of really sets in and they're like, okay, we can now tell you it is this. Right, yeah. But even seeing the early stages, it sounds like it could be a variation.

It could be several different things. Yes. They're not sure until it really sets in. Which, yeah, which is the worst. And then it's too fucking late. Exactly, yeah. And you might not even fucking be mentally there enough to realize what they're telling you your diagnosis is.

Exactly. Fuck. It's. When you talk to your mom, are you able to tell her, does she know what is going on with her? Is she aware of that now? She maybe like three, four years ago would say to me and my cousin, she'd be like,

I know I have the big D. Like she was like, she didn't want to say the word. Have you been able to tell her it's actually not that it's this thing? Well, it is dementia. I mean, we've talked when she was a little more, if it felt like she was in a place where I could talk about it with her in a way to like comfort her because sometimes back when she was a little more lucid, she would feel frustrated or she'd be like, I just like, I can't think of the word I want or I can't say or whatever. And I'd say, I don't want you to feel bad

about that though, because this is that disease and like, it's okay. I just, I don't know, she's so brilliant. I know I've mentioned on here before she's in Mensa. She speaks three languages. I before she's in Mensa. She speaks three languages. I think she's still no, I mean, if I speak some French to her, she'll kind of like nod like she gets what I'm saying, but she hasn't spoken French back to me for a really long time. But yeah, I don't know. I think she just think she would want to know certain things, but you also don't want to

upset them. It's a hard line to tell. I think I was trying to hide away from it because it was so overwhelming and so painful. Now I'm getting the test done. I was asked to be a speaker at an FTD fundraiser, which I had never done anything like that before. Polar opposite experience of comedy. Have you done a serious talk before at any sort of thing? No, I've done worse.

I was hired to be... A good friend of mine lost his son to... Oh gosh, I want to be clear. it's called pulmonary hypertension, I believe. It's something I'd never heard of before, and he was a young kid and he passed. We had worked together, we were writers at Fox, and he knew I did comedy. He's like, you know, I'm on this board for this thing and they do a, you know, like a yearly meeting. And this one's in Chicago and they're looking for a comedian to come and sort of lighten the load of this thing

that kills kids. And I'm like, I'll do it. And I went and did it. I went and did it two different times. Wow. And you just sort of like do 10 minutes of whatever, but you know, you're in a fucking generic, like conference room at like a hotel

with that ugly carpet and the fluorescent lights. Silver buffet, shit in the back and the fluorescent light. You're on a small stage, maybe this big, but really elevated for no fucking reason. You know what I mean? I do. All bright lights, nothing in our environment. And you're just sitting there trying to make them laugh

about something in the middle of all this. And they're like, that's great. All right. And then they go back to something like, all right, we're gonna raffle some shit off for people that are about to die. Here we go. And you're like, God.

God. It's so wild. It's like the things people want us to do where it's like, I understand, but this is like a very bleak environment. So I haven't had to go speak seriously. Okay. But you did.

Yeah. They didn't even, they didn't know I was a comedian when they asked me. They just wanted somebody who was a child of somebody who had FTD, cause that previous fundraiser, they had somebody who was a child of somebody who had FTD because the previous fundraiser, they had somebody who was a spouse. And they thought it'd be interesting to hear a child's perspective. And I said, oh, yeah, I'm happy to do this. I don't know if you know, but I'm a comedian. And so it's interesting. I'm looking forward to trying to help people in

this way, but I have to tell you, I'm very nervous because this is not at all – this is like the opposite of what I do. And they're like, no, it'll be great. And so, they had two guest speakers. It was me and then the guy before me is like one of the Mayo doctors, FTD doctor. And this guy, his bedside manner is just like as dark as it gets. And so, he did a His bedside manner is just like as dark as it gets. And so he did a like 15, 20 minute talk right before I went up about like where FTD is at. He's like, there's no cure. I wouldn't recommend getting genetic testing because even if you find out, what are you gonna do?

Well, at least you know what the fuck's happening to you. What do you mean what are you gonna do? You have some awareness of like, oh might be that thing. Yeah. Yeah. No, it's like which is I I mean look I I don't have this. I hope I never get this. I hope you don't either. Thank you But even if you do have it Like I guess going into it blind would make me a little more loopy in the head Yeah, what's the fuck's going on with me? Why? And, and, but if you know this thing may rear its ugly head

at some point, then at least you're like, all right I'm not crazy. I'm suffering from a disease. I'm not going mental. Right, right. Yes. But those guys, they're like, we're doing a Q and A and so people are like, would you recommend?

No, don't, don't even bother. It like the most depressing like host I would game conference. I got two years I mean it was just like bang No hope no, no like It I'm telling you, it was like... That's terrible. It gutted. It was horrible. And you're going next, by the way. And I'm following this guy. He's my opener.

He was my opener. I was like, no... Because so many of us at this fundraiser, you know, we have family who have the disease, but we're not like you said, we're clowns or we're whatever. We're probably not in the medical field. So we're looking to this guy. It's like, oh, this is like this guy's his life's work. He has answers. You hear the Mayo Clinic. The Mayo Clinic. You think this motherfucker must be atop of his game know what he's doing and it was he did a fucking powerpoint where it was just like

dead Dead dead dead What is happening like I looked at Chad I was like oh my god like I don't I don't... You're coming up next. I don't want to come up next. It was... It's just showing the worst shit ever. It was so bleak.

He said, I don't recommend genetic testing if you're coming up next too, by the way. Yeah, I'm coming up next. And so anyway, he leaves the room and just, it's just broken. Nobody say anything, very solemn. And I get up and the woman's like, okay, now we got our family member who's here to talk about it. Fun fact, she's actually a comedian. I knew it, I knew it, I knew it.

Kelsey Cook. They're, you know, some like us and I don't know. People still registering that they're gonna die. Like that they shouldn't even get the testing done. Yeah, right. They're just fucked up now. Because why would you want to know if you're gonna die in 10 years, whatever? It's like, it just, again, hopeless environment.

I was so uncomfortable because it is the anti-comedy environment. So I was like, hey guys, how we doing? So fucking dumb to ask that. How we doing? Not great. Not great, Kels. Do you talk about what you're going to talk about? That guy just told us there's no hope, man. Shot a bunch of no hopes out of you. How you doing? I know. So I say that it's like crickets. I'm like, okay, this is like not, this is not a comedy environment. I do my speech and I was so nervous. I was like flying through it because you realize as you start talking, you're like,

I'm not going to get any laughter. I'm not going to hear any sound for 10 minutes. I'm just going to tell the saddest story that's ever been. It feels like a 10 minute bomb. It was so nerve, I felt so wrong. It was so weird. But then at the, and I started to look up and like, I could see some people crying. And then your brain's like, oh, I'm actually kind of crushing for like this.

And I'm like, to see people cry, you're like, oh, I'm actually doing like, people are connecting to this. But it's so weird. It's like- I'd be up there like, are they still crying from what the doctor said? Or am I making an impact? Exactly.

It's like, you don't want to make people cry, of course, but to, it was nice to see people at least like feeling what I was saying and connecting to it. It made me feel less alone when other people are like, oh, yes, I also have been through something like this and all of that. So anyway, I come off stage. I was choked up by the end of it because I've never spoken publicly like that, done a speech about my mom and everything she's gone through. And I come off stage and this old woman comes up to me and goes, that was great, but I just wish you'd been a

little funnier. This bitch. This fucking bitch. After Dr. Death, what the fuck did you do? I like still had tears in my eyes. I just did the most vulnerable thing I could. And the feedback was like, could have used some laughs. It's like, then fucking come see me in Des Moines. That's what you should have said. I'll be, go get your tickets at kelseacook.com. Like that, this is not that. And so I just was like, oh my God, you just like,

you can't win. If I had gone out there and just like been super jokey, I bet I would have disappointed a lot of people who wanted like a heartfelt story. This isn't really what we're doing here. We don't always have to laugh about everything. Ethel just didn't give her enough ha ha's. She walked up.

She walked up. Oh, great question. She did walk up, but God. So yeah, that was an interesting experience. So do you have a contingency plan? Are you future tripping right now? Are you thinking, looking back with the hindsight of what happened with your mom and stuff, what is something or what are some things you can do to help yourself if you get this diagnosis? If I get it and I do have the mutated genes,

I think I would probably try to really throw myself into the research end and like find out where it could be helpful for me to donate more of like my blood or saliva or whatever to help with research and developing medicine and stuff. Like just try to be more involved and proactive in that way and then see if there were any, I don't know, like trials of stuff that I could do. I don't know.

I really hope it's like, it's so weird to be sitting here and be like, I could have this and I don't know. I really hope. It's so weird to be sitting here and be like, I could have this and I don't know. Right now. I'll know in a few weeks. How fucking happy are you going to be if you don't? Do you have just one brother? One brother. And he's not even going to bother? No, I think he would.

I think it just depends. He's waiting to see what you have. He is probably. Yeah. Well, probably waiting to see what my have. Yeah. He is probably. Well, probably waiting to see what my mom has too when I talk about it. Because if my mom doesn't have it and I don't have it, I'm sure he would probably feel like, okay, well, this was not genetic.

So it might not be, she may not have that? No, I'm sorry. It's just dementia, but. It might not be genetic. It might be sporadic. Yep. Oh, so it's not always genetic. You did say, oh, so your mom may have just gotten it.

Is that right? So the history of your great-aunts and stuff is unclear because you're not sure if it's FTD, right? Yeah, we don't know if it's FTD or if it was a different sort of dementia. But FTD, all of that has been more prevalent in the media in the past, I don't know, two, three years because it's what Bruce Willis has. So that's what it usually takes is some famous person to get the word out there.

Yes. You know, that thing Bruce Willis has. That's what he has. And didn't he go catatonic as well for a minute there or at least they said he couldn't communicate? I think he might have been non-verbal. I don't know if he's still non-verbal, but yeah, there are these different versions within FTD. One of them is called primary progressive aphasia, where you lose your ability to communicate

and you also lose your ability to- That's diehard. You're seeing a human like that. Yes. Put to those limits and everything, now just reduced to what? Is he in a bed, a wheelchair? I don't think so.

I think he actually, I saw a thing about him during the LA fires, like going out and meeting firefighters and walking around. So I think he's like mobile and all that stuff, but I don't know where he's at with the other things. But yeah, it's, I think about that too. I mean, you're not just a boyfriend and girlfriend with Chad, you guys live together. I said you're married, you do a podcast together.

It's over, bro, it's over, you're wrapped. We've got life insurance. It's like, yeah, it's very, very serious. What is it like for him to sit there? Because I mean, I would feel helpless just sitting there waiting for you to find out what the fuck this is. And then if you do have it, I also feel fucking helpless because it's coming. And what do we do about that?

Yeah. We talked about it. I mean, he's been such an amazing support system through all of this. But he was like, this goes without saying, but I just want you to hear it that if you do have the mutated gene, nothing changes. You know what I mean? I'm here forever. So again, it's that's what I assumed. But there is a part of my brain that was thinking that if I have this, is a part of my brain that was thinking that like, if I have this, is that fair for me to ask somebody to still be with me forever? Yeah.

Because you know what they're about to go through. They would become a caregiver. They would. Yeah. It's like, it's so heavy. It is. Life goes from like- You don't want the person you love like that also having to like wipe your ass.

Exactly. Let's be real about it. Of course. And fucking see you also at your lowest and your most vulnerable and the time where you don't want anyone to fucking see you. Like this isn't who I am. This wasn't what I was. This disease did this to me.

Yeah. And they watch that yeah, because what it does to the caregivers like it Absolutely chews you up and spits you out it like emotionally physically. I was not somebody who dealt with depression before my mom Being diagnosed and in the past four years, I've gotten a depression diagnosis. I've had to be figuring that out because it's not natural for your brain chemistry to be in a state of grieving every day for four years. That's not right?

Really? That's so weird. What about for 40? Is 40 normal? Fuck man. Is that normal? Fuck man. Is that okay? Cause I don't know who the fuck told you that. Way past four years. Maybe it gets better.

God. But here's also the ugly thing about that is that, you know, if I was Chad, I mean, you've got the fucking ugly hindsight of what he's about. Like, you're going to be able to educate him about like, this is hard. This sucked. This, this, this. Yeah. Oof. And listen, we're staying positive.

You know, I feel good about it. I could. Will you please text me? Of course. Yeah. Text you when I find out. And it's like, we might look back on this episode and be like, oh my gosh, it was so wild to let go down all these paths and I don't have it, but I don't, I don't have it yet.

Well, how long, how much longer? They had initially said like four weeks and then the email said eight weeks and I was like, it was cause they sell something. Is it blood and saliva? It's just saliva. Saliva. Yeah, yeah.

So I'll keep you posted, but it's weird. And it's like, my special came out yesterday. It's like, there are these other big, really great things happening, and then also like the darkest, scariest shit. So it's weird. Lurking. Yeah, it's a weird dichotomy, but yeah. We're gonna stay positive.

Thank you. So you and your brother don't have, and hopefully you said he has kids. Yeah, my two nieces who I love so much. I mean, Chad and I don't have kids, and so I kind of feel like my nieces are as close to kids as I'll get. And that's what I wanted to ask, and you don't have to answer this either. I asked you because you're still young. Do you want to have kids? I know Chad has older and has grown kids.

Yeah. But did you ever want kids? Do you want kids? And if so, are you terrified that you might pass this fucking thing on? Yeah, I was never I wasn't one of those people growing up where I was like, I for sure want kids like I have friends who they knew they were going to do that. It was without question. I was always more, I think, excited,

career-focused and just kind of thought, ah, if I have kids. Because my mom had me when she was 36 and my brother when she was 42. So she waited. She really did. And she was kind of my template of like, if I have kids, I want to feel

like I'm not compromising being a good mom. I want to feel like I did the things I wanted to do in my career and then add that. But anyway, now that I am, I'm about to be 36, which is how old my mom was when she had me. And Chad is not only older than me, but has his own kids kids like you said. So he and I have had conversations where it's like, oh, you know, if we like had met at a different time and if life was different, I'm sure we would have wanted to have kids together. But now like given our ages, given our circumstances,

it just feels like not, I don't think it would give us the life that we want to have. Like we really love our life together. And he has a hilarious joke in his Netflix special where he... Like, his daughter's in college now. He just crossed that finish line of raising his children to be out of the house. And he's like, if I had a kid now, it would be like,

being in prison on my last day, going into the yard and stabbing somebody. Yeah, just kill them. And just being like, get back in my last day, going into the yard and stabbing somebody. Just kill them. And just being like, get back in there, another fucking 18 years. So I think about that too, where he had kids young, has spent the majority of his adult life raising them. And now he gets to like experience more of that freedom

of like, oh, I can travel, I can do whatever and not have to worry about, okay, are they okay at home? So I kind of want to give him that too. And I think for kids, it's like if it's not a fuck yes, it's a no. And it's never been like a true fuck yes for me. It's been like, yeah, there are times where I think that sounds nice, but I think you have to have a way stronger feeling about it. So you have adult step kids.

I do. And how's that? It's great. I can't remember if I talked about it on here last time, but I mentioned it in my special. So his daughter is about to be 21. And you know, that's kind of like an interesting age spread, right? She's 21, I'm 35. And she had started following me on Instagram when Chad and I got together,

but I wasn't really thinking about, you know, it's like my job is to post like my jokes and stuff. Yeah, talking about banging her dad. Yeah, you know what I mean? I'm sitting here thinking about that. Yeah, I had that joke from my previous special about him having a vasectomy and me like not knowing what that was like, is it going to be clear, like that fucking white Gatorade flavor? Does it taste better when there aren't kids in it? I'm saying all this fucking wild shit. I posted that joke and then she texted Chad that night and was like, just so you know, I for sure unfollowed your girlfriend tonight. I was like, well, fuck. Unfollowed. She did. Kind of step mom of the year over here. But yeah, my friends, they were really like,

right when we started dating, they were like, she's gonna love you, she's gonna think you're so cool. And I was like, oh, you mean after watching me talk about blowing her dad? Like, yeah, I bet she's gonna think I'm the fucking best. No, it's a weird dynamic, so she's great. Are you better at it? Well, she doesn't see my stuff anymore. I can't not, I have to do my job.

I have to post my jokes. But when you see each other in person, everything's fine. Oh yeah, I'm not like, blew your dad, I'm not gonna. You're not doing that shit? Obviously not doing that shit. But I mean, she doesn't resent you, or like she's cordial and things are cool in person,

is what I mean. She's not like standoff, and she's just like, I'm not watching that shit. No, yeah. Which by the way, I completely understand. Yes. Even when I see my dad and step on kiss, I'm like, look at that. No, yeah. Which, by the way, I completely understand. Yes. Even when I see my dad in step on Kiss, I'm like, look at that. Yeah.

If I heard her talking about bullying my dad, I would try to cut her tongue out or something. I would be a crazy, I'd go fucking handmade stale shit on my face. What about his ex? Are we allowed to talk about that? His ex. Who's ex?

Chad's. Oh, his ex-wife. Yeah. Oh. They're very cordial. But are you guys, do you get along? How about that? His ex, who's ex? Chad's. Oh, his ex-wife. Yeah. Oh, they're very cordial. No. But are you guys, do you get along? We met at-

You really don't have to have any interaction because the kids are grown, huh? Yeah. Okay. I met her at his son's wedding and we were- How old's his son? 25. 25 and 21? Mm-hmm.

Wow. Yeah. And we were cordial. It's like they've been divorced for a very long time. They co-parent really well, so that's not really a thing. But yeah, his daughter is very warm toward me where everything is great. She learned, okay, this is not somebody whose material I want to see because it's some of us about my dad and I completely get that. So we just, we navigate it. I'll update that feed here. Not interested, not interested.

Not interested. No. No. Don't want to hear about my dad's dick. Great, thank you. Let me ask you this, and we can wrap up on this here. Like, what advice do you have for people who, let's say, do know their loved one has this or are just going through not just specifically what

you may have, but the mention in general? What advice do you have? Yeah. First of all, if you're going through it or have a family member, I'm so sorry. It's hard for me to think of a more cruel disease than watching somebody go through this and watching their family go through it. It's so painful for everybody. The AFTD is a really great resource. I believe it's the aftd.org. That's how I got connected to a support group and so I do like a Zoom support group with people in Minnesota. There also was such an incredible but also truly gut-wrenching article that came out a few months ago in the New York Times of I believe, I want to say Lindy Jacobs. I hope I'm getting her last name right. She lost her mom to FTD. She did the testing, found out that she and her two sisters have FTD. Now the three of them are

trying to do what they can to get any sort of early medicine. If you can look up those stories, then you can reach out those sort of stories, then you can reach out to those people. Like now I'm connected with Lindy and she and I were able to talk. I think just the less alone you can feel, the better because it's a very isolating experience. Like one of the FTDs sometimes is sometimes

they wanna put like, they wanna think things are food that aren't. So a lot of times- Is that aren't. So a lot of times- Is that right? Yeah, a lot of times when I'm- Don't eat things that aren't food? Yeah, when I'm talking to my mom, she'll like start to try to eat her teddy bear.

And I'll be like, hey, like, remember that's your teddy bear, so let's not eat that. Like, though that has become a normal conversation for me with my mom, but that's not, like it's traumatizing., it's traumatizing. It's traumatizing to watch your mom be this way that you've never, A, seen a person be, let alone your mom, is now a completely different person. So I think just knowing more people that are going through these very specific things that

are, yeah, it's just devastating. So connecting can feel better, I think. This Zoom meeting you do, how did you find that? Like, how did you? On the AFTD website, there's a link for like per state support groups and like the leader of that. And then you can just contact them and they'll send you. Has it been helpful?

It has, you know, they're a really sweet group of people. I don't attend as much as I used to because they're all older than me. It's people whose spouse has it or maybe they're much older parent and they're older. And so I was feeling like, I wish I knew more people my age who are experiencing this. So again, they're very sweet. It just was like, sometimes I didn't really feel like I was having that sort of connection of being on the same page. Have you been able to have a conversation with your mom about what happens when she passes? Is there a living will and trust? Is she already taking care of what she wants you to do? Or is

that just all in your hands? Yeah. She had told us a long time ago what her wishes were for her ashes and stuff like that, but I don't know if she did it will. The whole system is so fucked where all her money is gone, all the money she worked so hard for as a teacher. Because of medical bills and everything. So what happened? Yeah, that's another thing. What do they just- They just bleed you dry.

They just connect to your bank account and just take it while you're staying there every fucking day. To take care of a human full-time is so expensive. I know what they charged my insurance was over half a million for three weeks in the hospital. I can't imagine what it is for day after day after day. What happens when you run out of money? Then you go into Medicaid and then it pulls. Then you're covered in that way, but everything you've worked for is gone.

Gone. You have no spending money. You have no little, I want to buy myself an nothing. Just wrecks you everywhere. It's the worst. So I don't really know Will wise, but she's been on hospice enough times that I have had those conversations with her many times.

Honestly, every phone call I have with her does feel so much pressure. I always want them to go as perfectly as they can because you just never know. Are you scared each call could be the last? Every time. Are you? And that's why I'm saying to live like that for four years is not normal. So it's weird. Sometimes when people lose somebody, it's sudden and it's horrible and they have to do that grief process probably their whole life. This is also so horrible in a different way where like you said, they're there but they're not. And every day you don't

know how much more time you have. And so I let my mom know how much I love her every single time I talk to her. I don't even care if I'm annoying her with it. I let her know so many times on a phone call just how much I love her, how excited I am to see her, all this stuff. Can I ask this last question? This genetic test you did, how do they know now? What comes back to say it is specifically this if they didn't even diagnose your mom properly?

Right. You know what I mean? Right. Are you worried that they could be like, nah, and then you get, you know? I am because this test is testing I think it's like one of four major gene mutations but even if you get a no to those ones there's apparently another test that you could take that finds even more rare mutations that have shown up for people who get FTD and so it's like I have told myself that too it's hard even if I get a no I don't think that worry's fully gonna go away.

Because it's just like, it's not happening. No, but also hopefully in the next 20 years, there's severe medical advancement and everything going on in medicine and... Kelsey Cook, I'm gonna stay positive for you. Thank you. You're gonna get good results coming back. You better let us know. I will. I really will text you, I'm gonna stay positive for you. Thank you. You're gonna get good results coming back. You better let us know. I really will text you, I promise.

And please, congrats again on your special. Promote everything you'd like one more time, please. Guys, yes, my special marker territory is on YouTube and Hulu. I have, like the whole last chunk of it is talking about my mom and her dementia and like highlighting some of the lowlights. Like, you remember when I was on

and we talked about people not believing that she was a pro foosball player in the home and being like, sure you are. And I'm like, I swear to God. Do you show them Hall of Famer right here? Yeah, I talk about that in the special. So anyway, it's very much, I think that chunk is highlighting the lowlights in that special. So please go watch my special. My podcast, Pretend Problems,

is with my boyfriend Chad. New episodes every week. You can watch on YouTube or wherever you download. And I'm on tour. So kelseacook.com for tickets and at Kelsey Cook Comedy on social media. Thank you. Thank you. Best of luck, girl. Thank you. Thanks for having me. You're welcome. As always, Ryan Sickler on all social media, ryan sickler.com. We'll talk to you all next week.