Transcript
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For the first time in my parenting up podcasting life in my life as a caregiver, I had the honor dare I say, the shock of meeting a person who said yo, jay, I think we got the same journey.
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I think we got the same journey, except I didn't get truncated by my mom getting Alzheimer's.
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I was like what the hell are you talking about?
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So there's this chick who is all into caregiving and helping others age well.
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She became a caregiver really, really young, like way young like middle school and then set off on a life of living globally on purpose.
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She's originally from America, the United States, and then she said I'm going to live in other nations and I'm going to help people age well and I'm going to force NGOs, nonprofits and governments to get all their shit together and pull their resources together and we're going to get technology and science and make it do right.
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I was like what?
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And we're going to design products.
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I was like you're going to do what?
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Yeah, and that's what she's doing.
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And so listen here, people.
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And so listen here, people.
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And then at the end of all of that, as she's becoming a caregiver for her mom, she does improv for the world famous Second City out of Chicago.
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Ha ha.
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Yeah, I'm like you know what chick you right.
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You are me Kind of.
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If my mama didn't like you, live in the life I said I was going to.
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It's all good, though, we're going to make it happen.
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Come on, come on, y'all Lean in, let's listen at, like Jay Smiles.
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If I was Caucasian and Zetty didn't get Alzheimer's, lean in, let's listen, and let's watch.
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Parenting Up.
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Caregiving adventures with comedian J Smiles is the intense journey of unexpectedly being fully responsible for my mama.
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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.
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Spoiler alert I started comedy because this shit is so heavy, so be ready for the jokes.
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Caregiver newbies, ogs and village members just willing to prop up a caregiver.
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You are in the right place.
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Hi, this is Zeddy.
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I hope you enjoy my daughter's podcast.
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Is that okay?
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Comedy and Caregiving Concierge a conversation with Jennifer Cain Berkmose.
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Today's supporter shout out comes from Instagram the Conflict.
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Chick Soror, I love you too.
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Double exclamation point.
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That means she's a Delta, my big mama going through the same and she is my heart.
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For those of you who are not from the United States, my big mama means my grandmother.
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She just told me she loves me more than I love her.
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I said it's not possible.
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She said oh yeah, it is, you win Big Mama.
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Thank you, the conflict chick, for sharing something that happened between you and Big Mama.
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Listen anytime somebody wants to let me know about an exchange with their grandmother.
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That's super special.
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All right, y'all.
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Review on Apple Podcasts, please.
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And of course, you can comment on IG or YouTube and that is how you will receive your supporter.
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Shout out.
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Our parenting up community is growing so fast I can't put out an episode as fast as we are growing.
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So text podcast to 404-737-1449 for updates, exclusives and suggestions on topics.
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While you're at it, share an episode with a caregiver you love.
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Review on Apple Podcasts and follow us on social media.
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Subscribe to our YouTube page.
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Please, it really helps.
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Parenting Up family.
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You know we go all over the globe looking for a unique guest and today, boy are we excited.
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We got a person who knows the inside out and some really unique perspectives and angles.
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This chick is a caregiver and she knows all kind of data and statistics and technology and app kind of stuff, like she even is connected to the World Health Organization.
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Who, who, who Like?
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So not the mute, not the owls and not the famous rock band.
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Anyway, let's do it.
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I call a JCB some other people who don't know as well.
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Not the famous rock band.
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Anyway, let's do it.
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I call her JCB.
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Some other people who don't know her as well.
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Call her Jennifer Kane Bergmosay.
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It's Danish and really from Montgomery Alabama.
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I just eat Danish cheese.
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So, anyway, put your hands together.
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What's up, jen?
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Hi, Jay.
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Thank you so much for having me on.
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It's a delight to see you and a delight to have a chance to sit down and talk.
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Absolutely so.
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First of all, you're not in the United States.
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Let everybody know where you are.
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Yeah, so, as you hear from my accent, I'm as American as they come.
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So I'm originally from Oregon in the US, and West Coast.
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I live in Switzerland and I've actually lived outside the US for 25 years.
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Sounds crazy.
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So I'm actually coming to you from my house in a place called Basel, switzerland, which is in the northern part of Switzerland, and if I look out my window, if I pick up my computer and I walk here in the room, you can see France on one side and Germany on the other, so it's just between the three countries.
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I often think, you know, after we talked and we met, I have this sense that I have the life that you would have had if your mom didn't get sick, and I think that you and I are really similar in the kinds of live, the kind of training and fancy educations that you did and fancy educations that I did, and and getting a chance to do some really cool work that we felt felt really good about, be it like you know, business, work that we felt felt really good about, be it like you know business, be it philanthropy.
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We got to do cool stuff.
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Um, unfortunately, your mom got sick and you had to come back, and I think this is what I'm doing is very much like if you weren't girl, interrupted in that sense by the caregiving journey, you would still be doing it, you'd be sitting in my chair and I'd be sitting where you are hey, and that's why we, together, we're connected and we're about to make this thing work Absolutely so share a little bit before we're going to get.
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We're going to dig deep into the way we're connected with our journeys.
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Tell us how your caregiver experience evolved.
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Yeah, so happy to talk about that.
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Um, you know I can also say I'm a caregiver, both for an aging parent and also I have been a caregiver for a deceased mother now, and also as a child.
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I grew up as a caregiver so I had multi-generational living in my house growing up.
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My grandmother, who was, I think, one of the longest living diabetics in the country yeah, I mean, she had diabetes since the age of like 12 and she lived until she was in her late 70s, so she had a really long story.
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She lived with us and so I was that person as a teenager who had come home from school and like, have to feed her, have to get her out of her wheelchair, you know, change the catheter, take her blood glucose monitoring and then give her her insulin injections.
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So I had to do that as a child and it was very much what I always expected that I would do as a child.
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Growing up, my life took a different journey, yeah go ahead.
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Hold on, Jen, Wait a minute as a kid.
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First of all, back then, the equipment, the monitoring, the testing, the wheelchairs, trash, everything was weighed like the wheelchair probably weighed more than you did.
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Yes.
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Okay, and the monitoring.
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Remember the brakes didn't work very well, so it could be like we're falling.
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You know what?
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Hold on to me, we're falling.
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Remember, the brakes didn't work very well, so it could be like we're falling.
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You know, hold on to me, we're falling.
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So yeah, how many willies did you pop with your grandmother and you both ended up in the bathtub.
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A lady will never tell, right, a lady.
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But that thing saw the basketball court and that was fun.
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Right, we know that was fun, but you're absolutely right, jay, we know that was fun, but you're absolutely right, jay.
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This idea of I mean just thinking about blood glucose monitoring as a kid, you know just and remember, because now they're so stealth you barely feel the prick of the blood glucose monitor.
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Back then we had to just take the lancets and either do it ourselves by hand, which was really savage, or then we had the new technology ones which came.
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It looked like a, like a, almost like a tape measure, and then you put it, you put the lancet in and it would cock it back and it would press the button and go flying into the skin.
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Did you ever see those?
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Yeah, it's like a dart.
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You felt like you were playing bow and arrow with your grandparent.
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Yeah, exactly.
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So like that start and then you know, squeeze the finger and then put the, put the blood glucose, the, the, the strip on the finger, and then have to kind of look at what does the color say, like how does it match up on the bottle, and then what's the reading?
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And then do the calculation and then titrate that and then withdraw the insulin and then inject it.
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So yeah, um yeah, okay, so did you, did you?
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How did you feel about that Did?
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Was it just a part of your life?
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Did you feel like this sucks, I want to go outside, like, why me?
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Or did you feel like, oh man, i'm'm cooler than the other kids because I have adult responsibilities?
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Or did you resent your mom or dad for making you do it?
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What was the deal?
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Oh, it's such a good question.
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I, you know, for my grandmother I have to say my grandmother, god bless her.
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Vivian Viola, what a name.
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Like don't we wish we all had that name, vivian Viola.
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She was my best friend, so for me to take care of her was actually a privilege.
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So I, you know, and also, like let's put it in context I was a kid, so I would come home from school, I would watch her in the afternoon, before maybe I had to go to sports practice or you know whatever club that you might have.
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So even though I had that responsibility, I still got my time off from that.
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So as I was leaving, my mom would come home.
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So I still got to do the things that I got wanted to do as a kid.
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So I didn't resent it, I enjoyed it and I I mean she, she raised me really.
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So I got to do that for her and it wasn't a problem.
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Now I remember the journey that my parents were on and they sacrificed so much because not only were they financially fronting all of it, because there weren't resources associated with any type of care.
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We had to have in-home care while I was at school, for example.
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They, I think for three, four years they slept on a pullout sofa and they gave her their bed, because that's what you do, that's what you do, that's what we did for her, because she needed that type of bed.
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Also, because she couldn't get out of bed by herself.
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It was a better angle to be able to lift her so that we could, you know, put her on the edge of the bed and then we could lift her up.
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You know, doing the little dance that you do, you know, like you're at prom, you know dance, you're picking them up.
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It was that angle was easier to get her out of my parents' bed than it was if she was in, like the sofa bed.
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Plus, we weren't going to put her on the sofa bed.
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She deserved.
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She'd had that long, hard life.
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She deserved to have the real bed.
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So I think about that.
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You know now, would I do that?
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Like, if my father moved in with me, would I give him my bed?
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Yeah, I did it.
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Like, whenever he comes to visit, I do exactly that I sleep on the sofa and I give him my bed, of course, Jen, that was so the rule in my family too, really, yeah, my mom's, my maternal grandmother.
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The rule was, even if you got sick and you had like a cold or the flu, um, you got to go to grandmom's house and get well and you got her bed.
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Now, normally what it meant was, like if you were the grandchild, like myself, she put my granddaddy out and you slept with her and then he had to go sleep wherever else in the house.
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But, like if my mother was sick, then my mom and my dad had to leave our house, come to my grandparents house so that my grandmother could nurture and care for her daughter and my dad just had to leave from my grandparents' house, going to work.
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Like there was no staying at your own house.
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This was the way that you would nurture on a family member, and same same as to when, like my grandmother's, when anybody got sick, what would happen is they got air quotes, the big bed, you got the best bed in the house and you got the best bedroom, and then the parents just stayed on the couch or either took over the kid's bed and then the kids ended up on the couch because they took your room or whatever it was.
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But you're very right, what was not going to happen?
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The elder was not going to be uncomfortable.
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No, ever, no, no, absolutely never, considering all that she did in her whole life to sacrifice, and especially, I mean she was blind, she could barely walk, she was rather feeble, she started to get dementia by the end, and I mean the last months we did put her in a home, but we had her with us full time for I think it was four years, I think, which you know again, I loved.
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I think you were asking earlier did I feel resentful at all as a kid?
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I never did.
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I think the only time where it came up was I might like I might've liked to have had time alone with a boyfriend, but grandma was always there, which is a good thing.
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Like now, I'm like, oh, if I could only have a sick grandmother, like in the room with my children with their significant others, right, I would love to have that situation happening.
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So you know, you know what there were guardrarails, it was a guardrail that kept you out of stuff that has allowed your life to flourish yeah, 100% yeah, yep, so you, you would.
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You've been a caregiver for that.
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That was your first and a very significant, uh, caregiver responsibility, I might add.
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You're talking about living.
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That was living, family caregiving 101 at ground zero.
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At ground zero, absolutely 100%.
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There was no break from that All in.
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And also my father is still living and he was a practicing dentist.
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So I actually worked with him as well.
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So even from a young age I was doing all the things that you do in a doctor's office, like you know scheduling appointments.
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I was working in the in, you know, doing the insurance claims, or I was working in the lab, or I was sterilizing instruments or developing x-rays or working, you know, at this chair side making the fillings and putting my fingers in people's mouths, aspirating their mouths.
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So I was a caregiver in that sense, like in a clinic, also from a very young age, which is also strange, but I'm sure that wouldn't be allowed now, but back in the eighties it was totally fine.
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And then, of course, grandma home with us and it was interesting.
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Interesting also, jay, because I'm sure you see a lot of people who are maybe watching or maybe in your community, who are torn in both directions, because there's the variant which is you're living at home with either you move into your mother's house, or your mother moves in with you, or your aging parent moves in with you, and then you have these kind of fly by night, kind of celebrity relatives who fly in right Like the guest stars who fly in and, oh, they hold everyone's hands and maybe they bring a nice gift and they're there for a week and they do everything and they think they've organized everything boop, boop, boop, boop, boop, boop, boop, boop.
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And then they fly away and it's like whoosh, what happened?
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What was that?
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And they think they did, they think they were caregiving, and and those who are stuck a hundred percent doing that have this incredible resentment.
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So I remember watching that with specific family members who would fly in um and thinking, oh, this is really hard, because if you move away and you want to help, you really don't.
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Even though you think you are, you really aren't because you're not there.
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Right.
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And then fast forward, you know 40 years, and then my mother was in home hospice with Parkinson's and Alzheimer's.
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Sounds familiar, right?
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Right, omg.
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So wait, mom had both, she had both.
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That's a hell of a combo.
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She had both which was diagnosed first.
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So she had Parkinson's and then it was diagnosed as Lewy body Parkinson's, which is the more severe version, because it's really, you know, going after the brain Sidebar.
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My two best friends, their fathers, died within six months of my mother, One like four months before, one four months after all, with Lewy body Parkinson's.
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So something in the Northwest was happening in that age group.
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Was it some kind of environmental pollution or some kind of thing that was driving a mutation towards that or driving the epigenetics of that?
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Because these were three people that were relatively similar in age and all died within like the same calendar year of the same disease.
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Very serious, Weird, huh, yeah.
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So so that that's the thing.
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Anyway, she was diagnosed with Lewy body Parkinson's and the Alzheimer's diagnosis only came after she died.
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Because after she died we donated her brain to the local university hospital, Oregon Health Science University, to be a part of clinical trials to understand the brain of the patient with Parkinson's, and they also took part of her gut to understand the relationship of the microbiome to the brain, et cetera.
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And then they came back and once they'd actually looked at it they saw the plaques that were classic of Alzheimer's.
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I think that her Lewy body dementia was so bad that we were just like this is what it is.
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This is just Parkinson's with severe dementia.
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We didn't even consider that it was Alzheimer's, but of course it was all happening at the same time.
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Oh my God, and listen, this is my air ghost cheers To you and your family, finger snaps and spirit fingers for donating Not just doing an autopsy for your personal knowledge, but donating her brain and her gut specifically for neurological degenerative disease research.
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There are so many families who either are not aware or just hesitant to do such right.
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Because they or just hesitant to do such right Because, who knows, it could be religious reasons or just fear, or just lack of knowledge, it doesn't, I don't know why, but it just doesn't happen enough.
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And because they've told us that you can't have 100% clarity on a dementia diagnosis unless there is some type of post-diagnosis death examination.
00:22:09.660 --> 00:22:16.625
And you know, for you, for you all, to let them do that much, you know, really, really huge shout out to the family.
00:22:16.625 --> 00:22:22.422
You got to get a lot of buy-in and a lot of agreement and that's just hard for many families to do.
00:22:23.183 --> 00:22:35.461
So first of all, thank you for saying that and I actually have to say thanks to mom because, mom, I don't recall if it was her idea or if it was our idea collectively, I don't remember.
00:22:35.461 --> 00:22:37.340
Regardless, she agreed.
00:22:37.340 --> 00:22:54.807
So we discussed it with her and she said you know, again, I know that you've seen, I've seen you in some of the videos with your mom and I feel with you so much because of being in those moments where you really see them, feel them slipping away.
00:22:54.807 --> 00:23:07.368
She begged for cancer, jay, she, you know, she first of all shout out to you know your mom, I know the story.
00:23:07.454 --> 00:23:08.621
She's also extraordinary.
00:23:08.621 --> 00:23:15.779
I mean, all the patents and the life that she had decorated, accomplished, just such a go-getter.
00:23:15.779 --> 00:23:23.382
And I think you know my mom the same, and my mom had been a locally elected school board member and had.
00:23:23.382 --> 00:23:34.726
You know now the schools in the state where we lived are the school that she, the school district she was running, is the best in the state, very much due to the zoning that she put in place to build the future school.
00:23:34.726 --> 00:23:41.898
So she and she also worked on the right to die legislation in the 80s, like it was the first American right to die legislation.
00:23:41.898 --> 00:23:44.423
So she was involved in writing that.
00:23:44.423 --> 00:24:03.446
And then she later you know she was always a patient advocate herself she became the chair of the American Diabetes Association, after having been the chair of the Research Foundation for years and raised millions like 50 probably in today's money, like 100 million to 200 million raised for research.
00:24:03.446 --> 00:24:13.361
And while she was in that role she created World Diabetes Day, which is a UN resolution, like she was part of that.
00:24:14.395 --> 00:24:18.384
So you know, I think she knew the legacy she had from her living.
00:24:18.384 --> 00:24:38.636
She wanted to leave that legacy from her own death as well and the disease that she had, because she was trapped in this body where she had in her mind she imagined she would do so much more more and not just like, oh, travel the world, take more cruises.
00:24:38.636 --> 00:24:39.278
That wasn't what she was after.
00:24:39.278 --> 00:24:41.021
She was after more impact and she was wanting to be of more service.
00:24:41.021 --> 00:24:44.517
And so that was her final act of service, which she agreed to.
00:24:45.478 --> 00:25:51.636
But you know, jay, it was just tragic because she begged for cancer, and what she meant by that was she begged for the sympathy that would come from going through chemo, through going through a surgery, through going through one of these devastating diagnoses, going through the treatment and getting better, because with a neurological disease like this, like a chronic degenerative neurological disease, it is chronic, it is forever, you're never getting better and we both know it's a plateau that you're fighting to maintain every single day, through nutrition, through the way you're dosing your medication, through the way that we were encouraging her with her physical activity, and it was everything we did to hold onto that plateau, which was already unbearable, like already already individual already, and if she, she witnessed her mother battle a disease and fight and then.
00:25:51.856 --> 00:26:21.531
So she had an awareness of science that many just might not have a need to dig into, and then she knew that her mind and her body were going to fail her in ways that she could not win, and to have that knowledge has to be frustrating, irritating and just daunting, to say the least.
00:26:21.531 --> 00:26:27.018
So here at the Parenting Up podcast, we do sprinkle everything with levity and humor.
00:26:27.018 --> 00:26:28.818
Do you have any?
00:26:28.818 --> 00:26:51.192
Can you recall any stories with your mom or your grandmother during the time where you were caring for them, or even possibly, where other family members may have shared with you things that either they did or you ended up doing, just to make it through the caregiver journey?
00:26:51.192 --> 00:26:58.345
And you're like this only is funny because of how stupid hard being a caregiver is.
00:26:58.906 --> 00:26:59.567
Yeah, yeah.
00:26:59.567 --> 00:27:08.244
So you know, I was talking about my grandmother's journey where she lived with us and we were full time but we had these other kind of guest star relatives that would fly in.
00:27:08.244 --> 00:27:11.741
I was that guest star relative in my mom's life.
00:27:11.741 --> 00:27:21.383
So I, you know, because I was living on the other side of the world and my children were really little and I had established my career, et cetera.
00:27:21.383 --> 00:27:25.176
So then I was that I was that I'm the bad one now, so I'm the one right.
00:27:25.176 --> 00:27:31.008
So, um, in that sense, I, um, I learned.
00:27:31.308 --> 00:27:36.500
So there's humor, and I think the humor came at her death, which I can't wait to tell you the story Cause I think it's just hilarious.
00:27:36.500 --> 00:27:49.103
Um, but you know, she was such a, she was such a lady and she, you know, she's such a teacher through her whole life and very much through her illness and very much through the dying process as well.
00:27:49.103 --> 00:28:14.344
And before we get to the funny, I'll tell you this the thing that really taught me something that was so insensitive at the time I didn't realize it was so insensitive and now it really changes the way that I look at olders was, you know, again, she had this really fancy life, she'd been working, you know, going to speak at conferences all over the world and doing this really amazing work at the American Diabetes Association world and doing this really amazing work with the American Diabetes Association.
00:28:14.344 --> 00:28:27.481
She had amassed a really spectacular wardrobe of business suits, right, and so she had gone in and out of hospice and she was now in home hospice and I was like mom you know, we've got a moment to get rid of some of these things that you get to choose where they go.
00:28:27.481 --> 00:28:32.027
Because she being so service-minded, I was like let's buy, you know, let's, let's go.
