Transcript
WEBVTT
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I am never the one to do gender baiting, but usually in family caregiving it's a lady or a kid.
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Today's guest, it's a dude.
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His wife is his LO Y'all.
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She was chilling.
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Everything was great, they'd been married for years and everybody was healthy.
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And then, like she started trying to grab a bottle and her hand didn't quite work, or she tried to talk and then the words didn't come together.
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And guess what?
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He was the one that noticed these things and decided yo, it's time to go to the doctor.
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And he's a dude.
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Kind of dude, right?
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A radio disc jockey.
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Yeah, yeah, yeah, back in the day was disc jockey time.
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Forty fives put the needle on the record.
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Kind of dude, you know what I'm saying?
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Yeah, that kind of guy.
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Kind of dude, you know what I'm saying?
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Yeah, that kind of guy.
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And a clothing retailer like a fashion dude.
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And then all of a sudden, his boo ain't well, she's not right.
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Along the way, he figured out that being a caregiver is hard and it sucks and nobody is really on our side.
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He took some notes.
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He wrote a book and he's here to share it with us, with me.
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You Lean in, put your earbuds in, look and watch.
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We on TV.
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Yeah, come on, come on, come on.
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Parenting Up caregiving adventures with comedian Dave 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 Spoiler alert.
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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, 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 when Cancer Looks Like Dementia?
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A Spouse's Caregiver Journey.
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This week's supporter shout out goes to smiles169.
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The Apple podcast review is a great resource for caregivers.
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Exclamation point what you better?
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Give me an exclamation point Five stars.
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I love it and I quote I must say coming across this podcast has been a true pleasure.
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I have learned not only about caregiving but how to deal with personal and family trauma and how to find the silver lining in what can oftentimes be daunting situations.
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I highly recommend anyone who wants to learn and laugh to take a listen.
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Exclamation point they sprinkled me with two exclamation points.
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Yes, if you want to be the supporter shout out person, leave a review on Apple podcasts.
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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, please.
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It really helps Parenting Up family.
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The guy that I am chatting with today used to spin records and now he is spitting caregiving.
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He's giving out cough syrup.
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No, he's not giving out cough syrup, but he is an author.
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He wrote a book about how to not lose your whole brain, your whole mind, while you are being a family caregiver and supporting a loved one.
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I want you all to give a big welcome and keep your eyes and your ears open for Jim Cooper.
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Hey, jim.
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Hey everyone, how you doing.
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You know, and I just went into my radio voice.
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I wonder if they would understand, as I used to spin 45s.
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That's going back.
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That's going back.
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I don't know if they will, but you know what we're going to do.
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Our best man a 45 where you had to pop the record.
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What did you call that little thing that went in the middle?
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The spider.
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You put the spider in the middle and put it on there and yeah, the 45.
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Those around somewhere, oh man, the 45.
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So for you listeners and our viewers that don't know, the 45 is the record, the wax, what we would, what you all may think of as an album, but it only played a single song right that's it.
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You got one song and one song on the other side, and that was it and that was it.
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so that meant jim had to really pay attention.
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There was no, he couldn't get up and go to the bathroom or anything.
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That song would be over so quickly and it's time to talk or press a button or flip it over.
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Or you learn to go to the bathroom in less than three minutes.
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So it's just like in and out.
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There we go.
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Okay, I'm ready.
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That's scary.
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Not a lot of time for washing hands, but anyway we're not going to talk about that right now, Jim.
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So, Jim, you are a caregiver, I think once a caregiver, always a caregiver.
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You come here to speak to us, primarily being a caregiver for your wife.
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She was diagnosed with cancer.
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Now parenting up family, I know, primarily we Our family caregivers for those with dementia.
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But Jim Cooper's experience, his story and the way he put together this, his book the book is titled the Not so Little Book of Cancer Caregiving.
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Be a caregiver warrior and keep your sanity I'm going to say that again and keep your sanity.
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He lines it out with 22 caregiver tips.
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Oh my God, such bite-sized little niblets that you can get.
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You can just like pick one side of the thing you want to try to get better at, or at least not cuss out somebody about.
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So, Jim, let us know first and foremost how you, or your wife, your family, came to know that you had cancer.
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What were the symptoms, the signs.
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It's interesting because they weren't obvious right away and a lot of the signs were not pointing to cancer right away.
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Um, there was a period where my wife was having problems coming up with words.
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She would be talking to you and then all of a sudden just stop, and because her brain had stopped functioning at that point she was also doing word replacement, where she would pick up, say, a glass, and say this is a very nice table, you know, and not even think twice that she even said something wrong.
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It was.
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It was there.
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She was having motor skill issues where she was dropping a lot of things and then her arms would just start moving on their own.
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It was like she was waving in seven 47s on the tarmac out at the airport, I mean it just arms were just flying all over the place.
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So at some point I said to her we were out for dinner one night and she kept dropping her utensils and at some point I said look, we gotta, we gotta go to the doctor and check this out.
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And she said okay, which surprised the heck out of me that she said okay, because I usually get a fight from my wife about things like that.
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So we went down that road and, and you know, my first thought was you know, oh, oh man.
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And just to back up a second, we had gone to a party with a bunch of friends in the summertime and she had had one drink, one small drink, and it was like she was completely into alcohol poisoning.
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I mean the glaze in her eyes, she couldn't speak, everything just shut down and I thought maybe she had had a stroke.
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Everything just shut down and I thought maybe she had had a stroke.
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So we we going from that knowledge, we went to our doctor and he said no, it's not a stroke.
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I want you to see a neurologist.
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Went to the neurologist.
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He's like maybe it's MS.
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So let's, let's take a look inside your head and and see what's going on up there.
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And there were little cloud formations in her brain.
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You know at the time he's like it's possibly MS.
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So make a long story short or a longer story shorter.
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This went on for about six months where we really didn't know what was going on and that was kind of like the worst part for me as a caregiver, because I like to have answers and I want to know what's going on.
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And that was kind of like the worst part for me as a caregiver, because I like to have answers, I want to know what's going on.
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And once we finally got the diagnosis, I felt a little bit better Because okay, we have the diagnosis and we got with the right people and okay, here's the plan, here's where we're going.
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But getting to that point from a caregiver perspective was tough and I'd never been through cancer to this level.
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My mom had had it and I'd spent some time with her previously so I kind of had an outsider's view of that.
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But once it really hits home and once the doctor said to us you know it's, it's lymphoma, you know everything changes Immediately your whole life of what you thought it was going to be changes in that second.
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Yeah, I got to tell you you took my breath away in how much her symptoms sounded like Many dementia sufferer symptoms initially the misplaced words, cognitive decline and just the unknowing decline and just the unknowing right.
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You're like what is this, those first few months when you don't know what it is.
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So then you can't even make a plan and you don't know if the next day there's going to be another catastrophic symptom or illness that might double down and be added on to your LO's set of ailments.
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You're like, well, I don't.
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If she woke up calling you know this spatula a car tomorrow, is she not going to know who I am?
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I mean, those are the things I remember thinking about my mom.
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Like, okay, if you don't know what this is and you can't stop it, you also can't tell me that next week three more things may not happen.
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So when you found out about lymphoma, did you have any knowledge about lymphoma?
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Did you know much about that type of cancer?
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No, we knew nothing.
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I mean, and Sally it was my wife's name, sally, and she would say that, you know, when the doctor said it's lymphoma, she didn't even know what that was.
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I mean, she was just like, but we were in such a state of shock at the time and the one thing that was really frightening to me going through all this is that she was still driving a car and at this point I was like, and she'd had two minor, thankfully accidents over this period of trying to figure out what was going on, period of trying to figure out what was going on.
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So once we got to the point of, hey, this is lymphoma, I said specifically to the doctor, I was like, should she be behind the wheel of a car?
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And he said, no, it's like we need to stop that right now.
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So that was just such a huge sense of relief to me because, like, okay, knew there was something going on and that, asked, that piece of it frightened me more than anything else.
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But once we got to that point, it was like, okay, that's a little bit of a relief and and so it's that kind of sparked me into realizing a couple things that I certainly never knew before.
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Uh one.
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As a caregiver you got to ask questions, I mean, and in this particular case and it's probably similar with dementia, although I have not had that experience, I would imagine it's similar or you've got to become the mouthpiece for the patient.
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You've got to be able to say to you know the doctors or whomever that you know this is what's going on.
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Cause the doctors would ask Sally, you know what's going on, what, what, what, what was happening here?
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And she would spit out a couple words and then nothing, and she just didn't have the capacity to relate and communicate.
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So it hit me very early on.
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It's like okay, I'm going to be the communicator for a while to see how far we go with this and make sure everyone involved is informed properly.
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Okay, that's massive, jim, that you know.
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It's two things that I take from what you just stated.
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First thing is for you to know you need to ask questions.
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It kind of says that you embrace the fact that there was a problem that you need to ask questions about, which sounds like you kind of moved out of the denial phase fairly quickly, or at least you're not talking about it much right now.
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I know that when I talk to people a huge thing for family caregivers is that denial phase you just think it's temporary.
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Whatever the presentation that your loved one is experiencing, you just think, oh, they're having a bad day.
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You know if it's a cognitive decline or if, you know, a spinal cord injury.
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I've heard all kinds of things.
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You know where they say well, just yesterday he was using his arm pretty good, and now today he can't pick up a fork.
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As if he would stop picking up the fork on purpose, like he really doesn't want to feed himself.
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But there's this.
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You know as that, as a family member, you just don't want your LO to be crashing and burning in front of you.
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So how did you get through that?
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How did you get through that period of denial into acceptance?
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And then how did you determine, kind of on the fly, which questions to ask?
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Because, truthfully, shit, jimim.
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How do you know what to ask and when to ask questions?
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you don't and it and it's.
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You know and I'm so glad you brought that up about about the denial, because as the caregiver, you're always hoping that, that that you can grab onto something that'll enforce that denial.
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It's like, oh, that's no problem, things are things, that things are fine, don't worry about it.
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You're always looking for that.
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And I can remember going to our first neurologist and when he was talking about it being MS and he's like, okay, the first thing we're going to do is blast this thing with a whole bunch of steroids.
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And this was like three o'clock on a Friday and I'm like, when are we going to do that?
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He's like now.
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I was like, oh, where At the hospital and I'm like, really, I mean, can't you give her like some Tylenol and some Bactine or something to clear this whole thing up?
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I mean, do we have to really go through all this?
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So I was still in that phase of like, oh, you've got to be kidding me.
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So you know, you're always looking for that denial.
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And as for asking questions, I didn't have a choice.
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I mean, if, I guess I did have a choice, but I felt like I didn't have a choice.
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It's like if we're going to go down this road and we're going to get this taken care of.
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You know, someone's got to ask the questions and Sally obviously isn't going to be able to do it.
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So I just assume that you know that's my role here, that's what I got to be doing, and as for what questions to ask, it's a crapshoot.
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I mean, as stuff comes up, you pay attention to it and it's like, well, what about this?
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And one of the first things I had to learn because it was not second nature for me certainly was to ask for help and ask the right people for help.
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I mean, I kind of knew this going in, but this whole thing reinforced the fact of stop looking things up on the Internet, because 50% of the information that's out there is wrong or misinformed or whatever it happens to be.
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So I really had to step up to ask the doctors, ask the nurses, ask the social workers.
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You know, just ask the professionals who are involved in this.
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Hey, what's going on?
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I'm seeing this, or I'm feeling this even more so.
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Or, hey, sally's feeling this.
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Can you go talk to her and be kind of the director, for you know, whatever treatment is going on even prior to the diagnosis.
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So it's a learned skill.
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It was not certainly second nature to know to ask questions and be that person.
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I can't, I don't, I can't, I'm stuttering Cause I can't.
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I can't imagine what, what your heart and your soul is going through, because this is your wife, you know, your life mate With me.
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It's my mom, and my story is that my mom experienced this through the catastrophic event of my father dying, and it was my father dying that created the trauma and that trauma triggered the neurological event for her that sped up the dementia.
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So neurologists have told me that what might've taken eight to 10 years to more natural, well, in a more gradual decline, I should say, would have occurred.
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It happened in about 90 days.
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So in this look, in the span of a quarter, in the span of one corporate quarter, in the span of one one, um, one corporate quarter, uh, my mom literally went from sugar to Shinola.
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You know so, and but you know I wasn't living with her day to day, you know, and I never expected to live with my mom every single moment of every single day.
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So, um, my, I know there's a different, there's a there's a different pull on your heartstrings when it is your life mate.
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In reading your book, which I got to tell you, it was hilarious to me.
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Thank you so much for sending a copy.
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You know I like a hard copy of books.
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I know that everybody and I'm a podcaster, so people may be like, oh, jace Meltz, yeah, I like the audio too, but if I'm about to have a conversation with the author then I need.
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I want papers to turn, I want to turn it because I want to flip it and dog ear it and all those kind of things.
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So I I really appreciate that.
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There was a part that really struck home with me which is and I'm paraphrasing now which is how you got to make space for this disease now in your life, for this disease now in your life.
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Man Jim, I haven't seen anyone, I haven't heard anybody kind of tackle it like that, because for you it was cancer.
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For me and many of the listeners or viewers it may be Alzheimer's or some of the lentil-related disease, but the disease is going to take up a lot of space and stop tricking yourself like it's about to go away or like your life is not going to be altered.
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So how to make a healthy way around?
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All right Is a big pink elephant in the room and how do I manage to create some type of like, like you said, what's the thing and keep your sanity Right Right.
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Right, it's interesting because you know, and you brought up a very good point and I hadn't thought of it before, but it's absolutely true, it really doesn't matter whether it's, you know, cancer or dementia or Alzheimer's or whatever the crisis happens to be.
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The phrase that I heard early on that is just that I've stuck with is you've got to make space for the new normal, because this is the new normal.
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It's not going to be the way it was, as much as you want to stay in denial and hope that it goes back to the way it was.
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Even when you go out of the other side of all this, it's not the same.
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It won't be the same.
00:24:01.184 --> 00:24:02.431
This is the new normal.
00:24:02.431 --> 00:24:03.978
So you have to make some space for it won't be the same.
00:24:03.978 --> 00:24:04.440
This is the new normal.
00:24:04.440 --> 00:24:21.463
So you have to make some space for, okay and in my case it's like okay, I have to make space for cancer caregiving here, because this is part of the deal now and I can't work, you know, 75 hours a week at my job, it's just not going to work and all the other things I was doing at the time.
00:24:21.986 --> 00:24:47.244
You know, it takes some thought and definitely takes some organization to sit down and go and be honest with yourself and say, okay, here's what we have to do A, b, c, d, e, d on these days, and you know this needs to be done here and this needs to be done here, and I can move some things around around and maybe some of the things that you'd like to spend time on in the past.
00:24:47.244 --> 00:24:59.146
You can still spend time on them, but maybe not as much time, and you're going to have to do some sacrificing here and there in order to make sure that, you know, the road is as smooth as it can possibly be.
00:24:59.146 --> 00:25:00.711
You can't control the road.
00:25:00.711 --> 00:25:03.865
I mean, give up on that right from the start.
00:25:03.904 --> 00:25:20.942
You cannot control the road, but you can figure out how to ride it and, with all the things that will come up and there'll be things that'll come up how to deal with those little bumps in the road or potholes or trees falling down or whatever it happens to be.
00:25:20.942 --> 00:25:31.151
You know that you're going to be able to navigate yourself around if you stay a little bit flexible and realize that, hey, the bumps are going to come.
00:25:31.151 --> 00:25:39.345
There'll be good days, there'll be bad days, there'll be bad days for the patient, there'll be bad days for the caregiver, and it's just the name of the game.
00:25:39.345 --> 00:25:48.334
And you just got to and there's a lot of tricks and and not even so much tricks, but a lot of things you can do for yourself to get you through some of those potholes.
00:25:51.279 --> 00:25:55.625
What's something that you you know prior to becoming a caregiver.
00:25:55.625 --> 00:26:01.730
You know an activity or, I don't know, a hobby or a habit.
00:26:01.871 --> 00:26:06.816
Even that would define Jim, he had to have it.
00:26:06.855 --> 00:26:12.087
He had to do it and since becoming a caregiver, it was something that you had to give up.
00:26:12.087 --> 00:26:14.107
You just didn't have the time or the space for it.
00:26:14.107 --> 00:26:18.470
And now, looking back on it, you're like I don't even miss it.
00:26:18.470 --> 00:26:25.970
I can't believe I spent that much damn time doing that.
00:26:28.363 --> 00:26:29.607
That's a great question.
00:26:29.607 --> 00:26:41.968
You know because of who I am and you know I have so many interests.
00:26:41.968 --> 00:26:52.383
You know and I get this from from my mom and she and I had a few discussions about this is that you have so many interests that it's just like, oh, we don't have time for that, ok, I'll go do this.
00:26:52.383 --> 00:26:55.541
Oh, that's not, ok, we'll go do over there here and we'll go, do you know?
00:26:55.541 --> 00:27:09.805
And it's just like you know, what I had to do was was I don't think I actually gave up anything, but I certainly reduced the amount of time that that activity spent.
00:27:10.366 --> 00:27:42.967
If I had to pick one thing, I'd say you know, I love playing the drums, I've always loved playing the drums, and right before the diagnosis came in, I was taking some lessons again and trying to get my game up and get back in gear, and I had played with a couple bands and we were playing out here and there and that whole piece of my life really took a backseat Because, you know, even though there was one point in treatment where my wife was in the hospital, it's like, look, I got, it was a weekend.
00:27:43.059 --> 00:27:52.692
I was like I got to go, I got to go play with these guys because they're dependent on me, but that whole aspect really took a backseat.
00:27:52.692 --> 00:27:55.609
You know some of the other things that I love to do.
00:27:55.609 --> 00:27:57.980
You know, like you, I'm a book person.
00:27:57.980 --> 00:28:00.548
I want to have the book in my hand and I love reading.
00:28:00.548 --> 00:28:09.766
So you know that there wasn't as much reading time now available, or listening to music or whatever it happened to be.
00:28:09.766 --> 00:28:18.861
So it's, it takes some adjustment and and yeah, once you make those adjustments, it's like oh, it's not too bad, I can deal with that, I can live with that, that's cool.
00:28:18.861 --> 00:28:20.925
So it's, it's like it's.
00:28:20.925 --> 00:28:26.288
It takes some effort and it takes some thought and some some work, but it definitely can be done.
