Parenting UP! Caregiving adventures with comedian J Smiles

When Cancer Looks Like Dementia: A Spouse‘s Caregiver Journey

• J Smiles • Season 4 • Episode 16

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When laughter and wisdom intertwine, you find solace on the unpredictable path of caregiving. Join me as I sit down with Jim Cooper, the ex-DJ who spun his caregiving tales into a guidebook full of practical advice. From the early tremors of illness that shook his wife to the enormity of his new role, Jim's path from music to manuscript is as inspiring as it is instructive, offering a beacon of hope for anyone navigating the caregiving seas.

Caregiving is no solo journey, and this episode is a testament to the strength found in togetherness. As laughter provides a momentary escape, the shared stories of good days and bad remind us that the art of caregiving is painted with the broad strokes of flexibility, resilience, and the courage to let go.

In the heart of our discussion, the unsung heroes take center stage—the nurses, friends, and family who underpin the caregiving narrative with their unwavering support. We celebrate the victories, no matter their size, and open up about the profound impact of community during our most challenging moments. From accepting help with grace to the transformative power of hope in the face of adversity, this episode is an invitation to join a conversation that honors every caregiver's silent victories and shared struggles.

#CaregivingJourney
#CaregiverSupport
#EndAlz
#stemcellhealing
#CaregiverStories
#CaregivingCommunity
#CaregivingAdvice
#overcomingcancer
#UnsungHeroes
#Comedypodcast 
#CaregivingVictories
#cancerdiagnosis 

"Alzheimer's is heavy but we ain't gotta be!"
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Speaker 1:

I am never the one to do gender baiting, but usually in family caregiving it's a lady or a kid. Today's guest, it's a dude. His wife is his LO Y'all. She was chilling. Everything was great, they'd been married for years and everybody was healthy.

Speaker 1:

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. And guess what? He was the one that noticed these things and decided yo, it's time to go to the doctor. And he's a dude. Kind of dude, right? A radio disc jockey. Yeah, yeah, yeah, back in the day was disc jockey time. Forty fives put the needle on the record. Kind of dude, you know what I'm saying? Yeah, that kind of guy. Kind of dude, you know what I'm saying? Yeah, that kind of guy. And a clothing retailer like a fashion dude. And then all of a sudden, his boo ain't well, she's not right.

Speaker 1:

Along the way, he figured out that being a caregiver is hard and it sucks and nobody is really on our side. He took some notes. He wrote a book and he's here to share it with us, with me. You Lean in, put your earbuds in, look and watch. We on TV. Yeah, come on, come on, come on.

Speaker 1:

Parenting Up caregiving adventures with comedian Dave Smiles is the intense journey of unexpectedly being fully responsible for my mama. For over a decade I've been chipping away at the unknown, advocating for her and pushing Alzheimer's awareness on anyone and anything, with a heartbeat Spoiler alert. I started comedy because this shit is so heavy, so be ready for the jokes. Caregiver newbies, ogs and village members just willing to prop up a caregiver, you are in the right place. Hi, this is Zeddy. I hope you enjoy my daughter's podcast. Is that okay when Cancer Looks Like Dementia? A Spouse's Caregiver Journey.

Speaker 1:

This week's supporter shout out goes to smiles169. The Apple podcast review is a great resource for caregivers. Exclamation point what you better? Give me an exclamation point Five stars. I love it and I quote I must say coming across this podcast has been a true pleasure. 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. I highly recommend anyone who wants to learn and laugh to take a listen. Exclamation point they sprinkled me with two exclamation points. Yes, if you want to be the supporter shout out person, leave a review on Apple podcasts.

Speaker 1:

Our parenting up community is growing so fast I can't put out an episode as fast as we are growing. So text podcast to 404-737-1449 for updates, exclusives and suggestions on topics. While you're at it, share an episode with a caregiver you love. Review on Apple Podcasts and follow us on social media. Subscribe to our YouTube page, please. It really helps Parenting Up family. The guy that I am chatting with today used to spin records and now he is spitting caregiving. He's giving out cough syrup. No, he's not giving out cough syrup, but he is an author. 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. I want you all to give a big welcome and keep your eyes and your ears open for Jim Cooper. Hey, jim.

Speaker 2:

Hey everyone, how you doing. You know, and I just went into my radio voice. I wonder if they would understand, as I used to spin 45s. That's going back.

Speaker 1:

That's going back. I don't know if they will, but you know what we're going to do. Our best man a 45 where you had to pop the record. What did you call that little thing that went in the middle?

Speaker 2:

The spider. You put the spider in the middle and put it on there and yeah, the 45. Those around somewhere, oh man, the 45.

Speaker 1:

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.

Speaker 2:

You got one song and one song on the other side, and that was it and that was it.

Speaker 1:

so that meant jim had to really pay attention. There was no, he couldn't get up and go to the bathroom or anything. That song would be over so quickly and it's time to talk or press a button or flip it over.

Speaker 2:

Or you learn to go to the bathroom in less than three minutes. So it's just like in and out. There we go. Okay, I'm ready.

Speaker 1:

That's scary. Not a lot of time for washing hands, but anyway we're not going to talk about that right now, Jim.

Speaker 1:

So, Jim, you are a caregiver, I think once a caregiver, always a caregiver. You come here to speak to us, primarily being a caregiver for your wife. She was diagnosed with cancer. Now parenting up family, I know, primarily we Our family caregivers for those with dementia. 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. Be a caregiver warrior and keep your sanity I'm going to say that again and keep your sanity. He lines it out with 22 caregiver tips. Oh my God, such bite-sized little niblets that you can get. 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. So, Jim, let us know first and foremost how you, or your wife, your family, came to know that you had cancer. What were the symptoms, the signs.

Speaker 2:

It's interesting because they weren't obvious right away and a lot of the signs were not pointing to cancer right away. Um, there was a period where my wife was having problems coming up with words. 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. It was. It was there.

Speaker 2:

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. 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. 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. 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. So we went down that road and, and you know, my first thought was you know, oh, oh man. 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.

Speaker 2:

I mean the glaze in her eyes, she couldn't speak, everything just shut down and I thought maybe she had had a stroke. Everything just shut down and I thought maybe she had had a stroke. So we we going from that knowledge, we went to our doctor and he said no, it's not a stroke. I want you to see a neurologist. Went to the neurologist. He's like maybe it's MS. So let's, let's take a look inside your head and and see what's going on up there. And there were little cloud formations in her brain. You know at the time he's like it's possibly MS. So make a long story short or a longer story shorter.

Speaker 2:

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. 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. 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. But getting to that point from a caregiver perspective was tough and I'd never been through cancer to this level. 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. 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.

Speaker 1:

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. You're like what is this, those first few months when you don't know what it is. 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. You're like, well, I don't. If she woke up calling you know this spatula a car tomorrow, is she not going to know who I am? I mean, those are the things I remember thinking about my mom. 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. So when you found out about lymphoma, did you have any knowledge about lymphoma? Did you know much about that type of cancer?

Speaker 2:

No, we knew nothing. 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. 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. 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? And he said, no, it's like we need to stop that right now. 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. 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.

Speaker 2:

Uh one. 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. You've got to be able to say to you know the doctors or whomever that you know this is what's going on. Cause the doctors would ask Sally, you know what's going on, what, what, what, what was happening here? And she would spit out a couple words and then nothing, and she just didn't have the capacity to relate and communicate. So it hit me very early on. 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.

Speaker 1:

Okay, that's massive, jim, that you know. It's two things that I take from what you just stated. First thing is for you to know you need to ask questions. 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.

Speaker 1:

I know that when I talk to people a huge thing for family caregivers is that denial phase you just think it's temporary. Whatever the presentation that your loved one is experiencing, you just think, oh, they're having a bad day. You know if it's a cognitive decline or if, you know, a spinal cord injury. I've heard all kinds of things. 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. As if he would stop picking up the fork on purpose, like he really doesn't want to feed himself. But there's this. You know as that, as a family member, you just don't want your LO to be crashing and burning in front of you. So how did you get through that? How did you get through that period of denial into acceptance? And then how did you determine, kind of on the fly, which questions to ask? Because, truthfully, shit, jimim. How do you know what to ask and when to ask questions?

Speaker 2:

you don't and it and it's. 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. It's like, oh, that's no problem, things are things, that things are fine, don't worry about it. You're always looking for that. 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. And this was like three o'clock on a Friday and I'm like, when are we going to do that? He's like now. 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? I mean, do we have to really go through all this? So I was still in that phase of like, oh, you've got to be kidding me. So you know, you're always looking for that denial.

Speaker 2:

And as for asking questions, I didn't have a choice. I mean, if, I guess I did have a choice, but I felt like I didn't have a choice. It's like if we're going to go down this road and we're going to get this taken care of. You know, someone's got to ask the questions and Sally obviously isn't going to be able to do it. 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.

Speaker 2:

I mean, as stuff comes up, you pay attention to it and it's like, well, what about this? 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. 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. So I really had to step up to ask the doctors, ask the nurses, ask the social workers. You know, just ask the professionals who are involved in this. Hey, what's going on? I'm seeing this, or I'm feeling this even more so. Or, hey, sally's feeling this. 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. So it's a learned skill. It was not certainly second nature to know to ask questions and be that person.

Speaker 1:

I can't, I don't, I can't, I'm stuttering Cause I can't. 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. 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. 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. It happened in about 90 days. 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. 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. 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.

Speaker 1:

In reading your book, which I got to tell you, it was hilarious to me. Thank you so much for sending a copy. You know I like a hard copy of books. 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. 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. So I I really appreciate that.

Speaker 1:

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. Man Jim, I haven't seen anyone, I haven't heard anybody kind of tackle it like that, because for you it was cancer. 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. So how to make a healthy way around? 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.

Speaker 2:

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. 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. 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. Even when you go out of the other side of all this, it's not the same. It won't be the same. This is the new normal. So you have to make some space for it won't be the same. This is the new normal. 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.

Speaker 2:

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. 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. You can't control the road. I mean, give up on that right from the start.

Speaker 2:

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. 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. 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. 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.

Speaker 1:

What's something that you you know prior to becoming a caregiver. You know an activity or, I don't know, a hobby or a habit.

Speaker 2:

Even that would define Jim, he had to have it.

Speaker 1:

He had to do it and since becoming a caregiver, it was something that you had to give up. You just didn't have the time or the space for it. And now, looking back on it, you're like I don't even miss it. I can't believe I spent that much damn time doing that.

Speaker 2:

That's a great question. You know because of who I am and you know I have so many interests. 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. Oh, that's not, ok, we'll go do over there here and we'll go, do you know? 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.

Speaker 2:

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.

Speaker 2:

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. You know some of the other things that I love to do. You know, like you, I'm a book person. I want to have the book in my hand and I love reading. So you know that there wasn't as much reading time now available, or listening to music or whatever it happened to be. 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. So it's, it's like it's. It takes some effort and it takes some thought and some some work, but it definitely can be done.

Speaker 1:

Yeah, I like the way you say. Oh yeah, yeah, I can deal with that. That. It dovetails very nicely into the topic when I ended up getting to, which is I can you know what I can handle this? Because stuff could be worse. As bad as this is, and as much as I don't like this, oh my heavens, it could be worse. There are actually times, jim, where I think of a few things that I know that I can even conjure up that could be worse, and I'm like, ooh, at least I'm not having to go through that and I go ahead and take my shower or I get my mom up out the bed and I say that is just so and it's just so important.

Speaker 2:

You know the what you just said is just so critical to getting through this is that you know to have the attitude of gratitude even when things are just so bad and you're like, why me? Why is this going on? You know, but to keep that, you know we made, we made a conscious decision that with with this particular disease, with the cancer, you know, you can approach it with some hope and optimism or you can get really bitter and angry about it. And the people that went bitter and angry and there's plenty of them, you know they're, they're're going to have a tougher road to hoe than than being trying to be positive and optimistic. There were days because, with my wife's treatment, every time she had chemotherapy it was three or four days in the hospital because she had to flush out all the chemicals before they would release her and let her go. And then she had a stem cell transplant which is three straight weeks in the hospital. And if either one of us were just like in that grumpy mood, it would be like come on, let's go for a walk. And even if you could only walk around the hallways of the hospital because you really couldn't go anywhere else because of her immune system being, you know, reduced to nothing. You could see a lot of people that were in much worse shape than we were, and you know we had to maintain that gratitude because everything that happened during this journey was right. I mean we got so lucky, and we know we got so lucky because every person we hit and every nurse and every doctor and every treatment, it was just the absolute best it could have been from an outcome and that's not always the case, and I get that there's still people dying from cancer. There's still people, you know, particularly with, in your case, dementia and Alzheimer's, that's not going to come back and come full circle. That's just a road that's just going to keep on going down. So the outcome isn't always, you know, bells and whistles and unicorns and rainbows. I mean it's tough stuff.

Speaker 2:

But we decided that we wanted to stay optimistic about it and there was one day that I was having a bad day as a caregiver. We were in the hospital and while we were in the hospital I was still trying to work. From nine to five I would take my laptop and the hospital had a kind of a rec center and I would go up and I'd spend, you know, six or seven hours, you know, trying to do work and that kind of thing, and that was starting to wear on me and I was just having a really grumpy, bad day. I mean everybody, just get out of my way. I don't want to deal with anybody or anything. Get out of my way.

Speaker 2:

And I remember getting on the elevator at one point and, um, I heard this voice say hold the elevator please. And I was like fine. I was like fine, whatever. Fine. I was like hold the elevator.

Speaker 2:

And in walks this woman in her 30s, she's pushing a wheelchair and in this wheelchair is this 12-year-old kid, no hair, hooked up to IVs. And I kind of looked at the kid. Mom had that, that terror glaze in her eyes. I can't even imagine being a parent going through this. But you know, and I looked at the girl and I said, how are you doing? And she's like I got one more treatment to go. And then I think I'm pretty good and I was like you just stay strong and stay tough. And mom kind of smiled at me and they got off at a different floor and anything that I was being pissed off about disappeared. You know, just seeing someone in that position and not being able to imagine what that woman is going through or that child is going through. You know everything that I. My stuff was minor. I mean it doesn't make any difference anymore.

Speaker 1:

It's immediate, just like that. It just washes away. It just washes away. But kudos to you, jim, even being open enough to say hello to the kid in the chair. You know what I mean. There are some individuals that can be so insular in whatever their pistivity or grief is or whatever that they're. Just you know they push their button, you know growling at the damn elevator wall and they don't make eye contact to even notice what the other human beings might be going through in the space where they are. So kudos to you for that. And I know what you mean about how sometimes the universe can let you see a mirror or let you see another person's walk right when you're about to go down. The rabbit hole of woe is me, and yeah, that's a pretty good example. Share something with us about, maybe something you and your wife doing a caregiving moment where you probably pissed her off and she let you know it and she said hey, hey for that.

Speaker 2:

That happens all the time.

Speaker 1:

Well, she's like hey, if this is your idea of caregiving, I'll help myself.

Speaker 2:

You know, and there's a, there's a great example of that and it was very early on. You know, we were talking before about that first neurologist we saw and he wanted to blast her with steroids right away, you know, on a Friday afternoon. And I was like, OK, blaster with steroids right away, you know on a Friday afternoon. I was like okay. So we go to the hospital and the people you know I cannot say enough about nurses because they are all just sent by God. I mean, just every single one of them we hit was just marvelous. But we get to the hospital and it was our local community hospital and she's like, oh, Mrs Cooper, this is great, We've been waiting for you, Come on. And it's just like, how do you do that? And so they get Sally set up and they got the IV and they got the steroids going.

Speaker 2:

And at this point we still didn't have the cancer diagnosis. And at this point we still didn't have the cancer diagnosis. And she looked at me and she goes but I don't want MS. And I was like this is one step, this is step one. Just, you got to have some patience, let's go through it and let's walk through it and and see where it goes. And she looked at me. If she had had a spear gun in her hand, I would have had a spear through my neck. Because it just was like don't hand me that crap. Now I'm gonna sit here and feel sorry for myself for a while and it's just you know. It's like okay, I get it, I'll back off, I'll go over here and get a soda or something. You just sit there and have your fun. So it's like, yeah, it's you know.

Speaker 1:

It's like you go through step one, maybe almost getting to have an MS you over here, like this is step one, this ain't step one for you buddy, You're over there, you know not possibly getting anything Right?

Speaker 2:

Yeah, absolutely, yeah, absolutely. I know that. Look, we've known each other. You know we started dating when we were 15 year old in high school and we can read each other's minds, and especially read each other's faces, most of the time and just like, oh, I can see when she comes at me with like I've got a question, it's like, oh, here we go, I did something wrong, so you know, you got to.

Speaker 1:

Oh, that's good times. You all have been together Well. Congratulations on that. And I'm going to look, I'm going to give you my silent crowd cheers. That's my fun, that's my fun, proud cheers. That's my Bruce Springsteen. Yeah, nurses, but I am 100% there with you. Nurses make everything better and they make. They keep us in the game. They keep us in the game. They keep us in the game. Without them, none of this stuff works. I also love how you point out celebrate everything, even the small things. How did you come up with that as a marker for caregivers to keep their sanity?

Speaker 2:

You know it's because every day is you don't know, and every day is something different. You've got to look for a place to celebrate something, you know, just to keep everybody's spirits up, your own and and and the patients at the same time. You know, and I had so much help doing that, you know, if, if you're, if you're, if her white count, you know, hit a certain mark, it'd be like, yeah, that's cool, that's good, let's do it. Or, you know, we spent, we spent several holidays in the hospital. We were there for Thanksgiving week and we were there on Valentine's day and you know, which isn't really a holiday, but I'll go along with it. So it, you know it, and I had so much help because Sally, being who she is, immediately became like kind of the house mother for the entire nursing staff at Sloan Kettering. And you know she would, she would show up and all the nurses would come out and surround her. You come off the elevator and surround her, how you doing? And I'm like, excuse me, I'll just go over here and you guys go, how you doing. And I'm like, excuse me, I'll just go over here and you guys go.

Speaker 2:

So you know, and you know, the nurses were just, you know, so fantastic there was. You know, there was one point where they bought her a pair of pink boxing gloves and all the nurses signed it in gold ink and gave that to her because you know, she was, just she would. They would come into our room for a break. They would come in to break, to talk about their kids or what's going on in their life or what you know, their husband's pissing them off or you know, you know, and so she became kind of the house mom for all the nurses and we've been to one of their weddings. We've, you know, we get all the birth announcements and it's just like it's wonderful. I've always said that the nurses, the doctors, are the mechanics, but the nurses are the healers. They're the ones that are going to be with you all the way through and making sure that you get your shit together and get it together as much as can be done.

Speaker 1:

Right and you created the community. You and Sally created a community with them and that allows you to To maintain that, that higher vibration of healing. So even when you're home or in between the treatments, that stuff really matters. It's a mindset, it's a positivity, and I believe that you not only do you get better care from them, you get end up getting more information. You know you get more than just the standard what's in the chart or what's under the prescription. You unlock a treasure trove of information that they might not even purposely keep from you. But the more comfortable it's natural for us the more comfortable a human being is, the more information that will just readily flow. And so that was a magnificent way to engage them and for your wife to basically end up it sounds like her room was the water cooler where all the information was exchanged.

Speaker 2:

I love that and you know and this goes and this goes back to what we were talking about in the beginning is like it dawned on me at some point that if I've got questions and I always have questions the nurses are going to give you the answers, or the doctors are going to give you the answers. That's where you go. You don't go on the internet and start looking things up. You go to the doctors and you say, hey, what's this? Or you go to the nurses and say, hey, what's this?

Speaker 2:

And again we got fortunate in that the nursing staff where we were went out of their way to explain everything right from the get-go. I mean, her first dose of chemo, the chemo nurse came down and explained how it worked, what was going to happen, how it was going to work, what the possible side effects could be, you know what was the actual medical drug interaction going on in her body, and it was all information I'd never heard before and certainly knew. And sure they give you all the handouts when you get there of all the different drugs and what they do. And it's like I'm not reading that I've got 20 things to do.

Speaker 2:

But, the nurses were just like could explain everything, and it finally dawned on me. It's like okay, that's how you do this, that's where you get the true information and the true wisdom of there's so much that you end up Getting through osmosis almost just in being around.

Speaker 1:

The nurses and the doctors, radiologists, all of them. This is this conversation. I could keep talking to you on and on and on. Jim, I don't look, I don't want to give away the whole book. I want people to go and get the book in and and find you in all the places. There's one thing, though, that I the last thing I want to point out from the from. Well, there are two things actually that I made a note that I wanted to say that I think is phenomenal, that you mentioned One is around really talking about death and dying in advance, of getting to that space, of getting to that space.

Speaker 1:

And also caregivers being comfortable, receiving and giving themselves credit for the job that they're doing. You know, it's too often where a family caregiver says, well, no, you know, that's my wife or that's my child, that's my brother, I'm supposed to do it Well. I mean, you don't have to, you don't have to do it, you don't have to do it well. So give yourself credit for doing this heroic task. Heroic task, sacrificing, being so selfless, being so loving. And again to the first point of saying don't be afraid to talk about death and dying. It's going to happen anyway. Right, we might as well be prepared for it, and let's not let it shock us. We already shocked off our butts about the disease itself. We might as well try to yeah, you know. So I thought those two points were remarkable for you to kind of put it in the face of caregivers and say hey, think about this, and when someone wants to help you and when someone wants to help you, let them.

Speaker 2:

Yeah, you know, that was in line with those two things. And there was another revelation to me is like, you know, when people say what can I do, you know your first response is nothing because you haven't thought about it. But there are things that people can do and we got very lucky with who our supporters were and people that came out of the woodwork, you know, just to give us. You know, thanks and prayers and that kind of thing. You know, and I'll tell one. I have so many stories about that, but I'll tell one in particular. It was the first week we were there and it was Thanksgiving week, which is a tough time for Sally to be there because she's into family and we couldn't be with them Thanksgiving Day. I mean, we did a little FaceTime thing, but it's just not the same.

Speaker 2:

The next day, her uncle and her brother and her sister and our daughter came up to the hospital, just to, you know, put faces on it, and my uncle pulled me aside and said come on, I'm taking you out to lunch. You need a break. I'm like break. What are you talking about? I have no, I have no idea. You know, because when you get in the caregiver mode, you're 24 7 you. That's what you're focused on and you almost feel guilty if you don't focus on that, which is a whole nother discussion. But he said no, come on, we're going out. And I, reluctantly, went with him and by the time we got to the restaurant sat down and I was like, yeah, I needed a break. You're right, this is what it's like to eat with metal utensils and not out of a styrofoam box. I'd forgotten about that. So you know, when people want to help, you know, let them.

Speaker 1:

Do you remember Exactly? That is a great shout out to your uncle. Do you remember an example of help? That was a simple help, where you did ultimately get to a point where you could say hey, yeah to a neighbor or a friend or family or church member.

Speaker 2:

Yeah.

Speaker 1:

You know what you want to help. You could do X. Was there a thing, a task or something that became easy for you to request? What was it?

Speaker 2:

When my wife was in for the three week for the stem cell transplant. For three weeks, you know, I've stayed with her, you know, the whole time. And it finally dawned on me it's like I'm just spending money left and right on breakfast and lunch and dinners, you know cause they were free for her, they weren't free for me. And I said to my sister-in-law and my daughter, who lived about 15 minutes away from us from home, so, and they were just like our guardian angels, taking care of the dogs and making sure, you know, the house didn't get robbed and that kind of thing. But I said to them I say, hey, you want to help me with something? Fix me a couple of meals and put them in Tupperware things so I can stick them in the freezer here and that way I'm not spending money, I don't have to go out to eat, which they both just thrilled to death to do. And I ended up with about eight or nine little Tupperware things that I had in the freezer and at dinnertime or even lunchtime I would take one of those, nuke it in the microwave and go sit somewhere quiet and just relax a little bit and have something to eat. Simple for them, simple for me. I get great food on top of it. So you know what's not to like about that.

Speaker 2:

So you know those kind of little things that pop up in my head. You know it's like, okay, I got to make a note of that. I got to ask this person to do this for me. I got to, you know, we had one good friend in our town and I was talking to her. I was like, hey, you know anybody that can mow our lawn, because I just don't have time for it. And she's like absolutely no problem. And she knew a guy and he came and mowed the grass and that kind of thing. You know, anything that you can do to take a little bit of the weight off, you, as a caregiver, do it, you know. And and you've got to let go of the fact that is it going to be done the way you want it done? No, but who cares? You know it doesn't matter, just let them do it and shut up and be grateful about it and that's all you need to do. So it's.

Speaker 1:

Shut up and be grateful. That's a hashtag Shut up and be grateful.

Speaker 2:

We're going to make that go. Bumper sticker. Bumper sticker Shut up and be grateful.

Speaker 1:

I love it. This has been a remarkable conversation. Jim oh man, I OK, I know already.

Speaker 2:

I can't thank you enough for this. This is an honor for me to be part of this, especially because I know that your focus is a little bit different. But but I just so honored to be here and be grateful and be able to share, and I just thank you from the bottom of my heart. My wife thanks you from the bottom of her heart as well to give us this opportunity.

Speaker 1:

Of course and that was something else I wanted to say to let the Parenting Up community know that she did successfully complete the treatments and the stem cell transplant work. So for those of you in the Parenting Up community who consider donating to stem cell research or supporting it through congressional or political matters, you now know of a person whose life was saved because of it. It's Sally Cooper. So we have our own Parenting Up life up life saving story, which is just beautiful beyond words. Jim, let us know where we can, the group know, where they can get the book.

Speaker 2:

They could get that on Amazon. There's a Kindle version available, but the paperback is out there. There's a Kindle version available, but the paperback is out there. And for people that are local to where I am and I'm currently situated in Delaware there's some events going on here. I'm doing a book signing in a couple of weeks at a local bookstore, so I'll be out and about. So if you see the sign for a book signing or if I'm going to give a talk somewhere, please by all means come by and say hi and and say you heard me on this podcast and that would be, and I will pass that news on straight to let everyone know that they're listening in to you Absolutely.

Speaker 1:

And again it is the not so little book of cancer caregiving. Be a caregiver warrior and keep your sanity. I stress again, it's the keep your sanity part.

Speaker 2:

for me, let's both of us put our course minds. Yeah, absolutely.

Speaker 1:

Absolutely, absolutely the Jim. At the end of every episode I have a segment called the snuggle up where I share Three snuggle ups and the snuggle up. They are points where you know they're hard things, where as a caregiver, you wish you didn't have to do them. But once you go ahead and do it you realize all right, because I went ahead and ripped the Band-Aid off and did this thing, my life as a caregiver was better, it was easier, it was better for me or my LO giver was better, it was easier, it was better for me or my LO.

Speaker 2:

Please share with us one snuggle up. Oh, which one do I pick? There are so many to choose from. The biggest single thing I can point to for myself is getting over the fear of things.

Speaker 2:

Medical, um, because of my background and we're not going to go into all that cause. We'd be here for another three or four hours. I had an intense fear of doctors, dentists, hospitals. I mean very early on in our relationship my wife had some minor surgery and I couldn't even stay in the hospital. I was having anxiety attacks. I had this intense fear, learned that I needed the spirituality that I had developed to be able to turn that fear over to. Whatever power is out there and I don't care if you worship turquoise penguins dancing the merengue in Montana, I mean whatever gives you some sense of peace and hope. You know that's, that's what you bring into your life but be able but to be able to be there for her without that fear and have a sense of comfort and peace in that. You know the. I think the one tip I have in in the book is like spirituality, get some, because for me it was, it was. It meant everything in the world that I could be there for her and not have to freak out.

Speaker 1:

Well stated. Thank you so much Thank you.

Speaker 1:

Thank you very much. Let's snuggle up Number one. Ok, I'm about to hit y'all hard with this. Jim was scared about the whole medical system. He was scared to talk to the doctors, the nurses. He was scared to go in the hospital. He was scared to stay there with his wife. He admitted as much. You know what I want you to snuggle up to.

Speaker 1:

If Jim, a Caucasian man in America, was afraid of the system, what the hell do you think about the rest of us? Now listen, I'm not playing the race card, but what I'm saying is I have heard foreign born Americans, women of all races and shades, certainly people of color, say I mean, I'm just afraid that they're not going to take my questions, or I'm afraid that the system is not going to, or I never been to a neurologist, or I never been in an operation. But I bet, if I was Okay, this was a white man and he was scared out of his ass and had been so. A white man, and he was scared out of his ass and had been so. He had an aversion to hospitals and everything medical. So, people, it's just a thing we don't like doctors, we don't like the dentist, we don't want to be sick. Admit it to yourself the system sucks. But if your LO needs you to dig in, you go ahead and dig in. Get that shovel, get over in that ditch, roll around in that dirt, help your LO out. All right, we got this Number two, yo.

Speaker 1:

It could be worse. No matter what happened to you today, last night, last week, it could be worse. It doesn't matter the disease that your LO has cancer, lewy body, dementia, spinal cord injury perhaps your LO just got his or her wings. Maybe you don't even believe in heaven, but they're no longer alive. All of this sucks and you, like Jay Smiles. I don't even know why I'm listening to this stupid podcast episode, but some kind of way you ended up here. It could be worse. You could not have the ability to be listening to this podcast or even read the transcript. Somebody cares enough about you to say, hey, I think you should join this Parenting Up community because it'll help. There are some other people who are hurting but learning and supporting each other. I'm not about to run down all the ways. It could be worse, but I am sure your brain could figure out a whole lot of negative-ish.

Speaker 1:

Don't do it to yourself. Lean into the stuff that is all right. Number three think of it like being the most rewarding, long-term, consistent volunteer opportunity of your life. Okay, you're not getting paid, but it's like if you were helping your local fire department clean up trash all along the highway. You don't get paid for that either, but you feel pretty good once you drive down the street and you no longer see cans. Or if you help, you know your local church or whatever voter registration. Maybe you help out and you monitor the voting polls, you following me.

Speaker 1:

The point is, you make time for those things knowing you're not going to get paid. You make time for those things knowing you're not going to get paid. Once you become a caregiver, start making time for the things that your LO will need you to do. Modify your schedule, your hobbies, maybe even your work schedule. Let your boss know I'm now a full-time family caregiver. I don't want to lose my job. I don't want to lose my job. I don't want to lose any station. I don't want to be demoted off the team. I need you to know I am now a full-time family caregiver. I mean, if you had a newborn baby, everybody in the office would know and they would give you some natural leeway.

Speaker 1:

So don't blame yourself. You know what I'm saying. Let people know what you got up against you and what you're doing about this cape you're wearing. All right, you got it. All right, you got it. Yo. What's up y'all?

Speaker 1:

I'm over here just mixing and scratching up stuff and reminding y'all Patreon is open. It is open and ready for you, you, you, you and your mama too. We are loading up things, all things Zetty, all things podcast, all things caregiving behind the scenes, extra stuff. J Smiles comedy is dropping with her own little collection within the J Smiles Studio, patreon Very, very soon. It'll be less than a month. But you want to go on and get in there because there's exclusives. That's kind of time sensitive to whoever is in there first. We've already had live broadcasts for people who are already in and I'm going to be honest because of, you know, branding matters. So there's some stuff that I just can't say and do on the World Wide Web that I can do in the Patreon pantry. So if you want to see and know and hear and experience more of what's happening between my ears, come to the J Smile Studio, my Patreon pantry.