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J Smiles lets listeners meet another main "crew" member, a major supporter on her journey as a caregiver, Monica Cost. Interestingly, their bond started as adults through civic board membership. But wow, did they make up for 'lost' time. With many natural connections - members of Delta Sigma Theta Sorority, Inc., HBCU'ers, and free spirits they became fast friends.
Monica calmly recounts rocky moments in J's life. Monica was physically present with J Smiles when Jocko had his heart-attack. She is insightful regarding J Smiles' empathic tendencies. Monica leads with observation and a desire to understand. Cost offers supportive methods to care for caregivers -- start with extending grace. She encourages caregivers to make adjustments in real-time to manage stress levels.
The restrictive price of caregiving is discussed. J Smiles even admits to instances of guilt due to her reduced bandwidth.
The conversation is filled with laughter and lessons.
Once again, what is most evident is the power of friendship and the importance of J's crew.
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It was my birthday 2011
Monica:Yep,
J Smiles:We did it big right.
Monica:Oh my goodness. You threw an amazing party.
J Smiles:So I turned 41 we called it the N one party. You flew into Atlanta. Do you remember my dad? What? He listened, we were ready to go. The lights were up. That dude was still buying rounds. Do you remember that?
Monica:Oh, yeah, I was standing next to him. He said I could tell you all about business.
J Smiles:It was Jocko and the ladies.
Monica:Yeah.
J Smiles:Fast forward about a week. Jacko and the man above decided it was over. His time on Earth was over. You happen to be back in Atlanta for work.
Monica:I was doing the trumpet awards, and I had a book signing.
J Smiles:right
Monica:Yeah.
J Smiles:You did have a book signing.
Monica:And you were co hosting.
J Smiles:I did. I was co hosting the book signing with Murayama Irene.
Monica:Yep.
J Smiles:That morning. It was gonna be a brunch.
Monica:A brunch at her house.
J Smiles:A fancy brunch, we had eggs and champagne.
Monica:Yeah
J Smiles:Okay, so that makes it a brunch. Actually, it was a quiche. Okay, it wasn't even eggs, it was a quiche, so that's fancy.
Monica:Yeah.
J Smiles:I got the call about my dad ultimately ended up meaning he was deceased. Things kind of took a turn for the worst, but you were one of the individuals who ended up being at my parents home in Montgomery, Alabama, before it turned dark that day. I identified you as one of the people that I remember thinking that night. Wow. This is a really weird sense of emotions that I'm having because my dad is dead. And that feels a whole lot like the heavens decided to bird poop on me today. But then the core of my girlfriend crew are all in Montgomery and none of you lived in Montgomery
Monica:Right
J Smiles:But y'all are all in Montgomery on a Sunday before sun went down. And I was like, Okay, all right. Wait,
Monica:Yeah, it was all hands on deck.
J Smiles:Fast Yeah Parenting Up- caregiving adventures with comedian J Smiles is the intense journey of unexpectedly being fully responsible for the well being of my mama. For almost a decade, I've been chipping away at the unknown, advocating for her, and pushing Alzheimer's awareness on anyone and anything with the heartbeat. Spoiler Alert- I started comedy because this stuff is heavy, be ready for the jokes. Caregiver newbies, OGs, village members trying to just prop up a caregiver, you are in the right place.
Zetty:Hi This is Zetty. I hope you enjoy my daughter's podcast. Is that okay?
J Smiles:Today's episode, give caregivers grace, a conversation with Monica Cost. Hey, Monica.
Monica:Hey, Jay.
J Smiles:I cannot believe you're on my podcast dude.
Monica:I'm so excited.
J Smiles:Oh my god, this is like, whoa. Okay, we're going to have to take this slowly. Because you and I have so many moments of, I would say at the top of the mountain and the bottom of the valley as relates to my mother's health.
Monica:Yes
J Smiles:Okay, but I want to go back a little bit so that people can really see the journey through your eyes. Truthfully, my journey as a caregiver for Zettyy started with my dad's death. And you were a part of that core group who showed up in Montgomery. The day my dad died before the sunset, my dad got snatched, but my girls got shoved in my face, which felt awesome. It was a really way weird kind of spot. It was so abrupt and so, Wow, I don't even know. It was abrupt.
Monica:It's interesting to experience a person's pivotal moment that you're not a part of, so to speak.
J Smiles:Right
Monica:So I knew you before that day when Jocko passed, and then saw you through that situation. And so it's interesting to observe literally, the moment when a person's life changes forever, because I didn't know that that's what was happening. But now I recognize right as your journey has continued, I recognize that that was a pivotal moment for you like the things will never return.
J Smiles:Correct
Monica:Yeah
J Smiles:And little did we know that day how much the never return
Monica:Yeah
J Smiles:It wasn't going to even be like it was that day anymore. So you know, within a few months, literally within a few months, Zettys cognitive decline became permanent.
Monica:Yes
J Smiles:And I remember chatting with you a few times you came, you flew down to Montgomery to help settle some things around my parents home. But I just want to go ahead and fast forward. I remember telling you Hey, basically, they're not moving fast enough in Alabama love my home state.
Monica:But with your mom?
J Smiles:Yes, with my mom.
Monica:Yes
J Smiles:Yes, Right. Thank you for that clarification. But when my mom when she wasn't doing well, and I just wasn't quite sure what it was. I said, they're not moving fast enough. They don't have enough equipment.
Monica:Mm hmm
J Smiles:I did trust that the physicians were qualified.
Monica:Right.
J Smiles:And they were saying to be given the right test and prescribing the right medications, but they just we don't have enough MRI machines and blah, blah, blah.
Monica:Yeah. They were doing the best they could with what they had.
J Smiles:There we go
Monica:What they had wasn't enough.
J Smiles:There we go
Monica:Yeah
J Smiles:And so I say, Hey, I'm going out to Cali. We will be going a few days ago. You want to get back?
Monica:Yeah. Yeah.
J Smiles:And then I didn't get back.
Monica:Yeah.
J Smiles:So I called you to say, hey, guess what, we're not really coming back. Mama needs brain surgery.
Monica:Right
J Smiles:You remember that call?
Monica:I do. I said brain, wait hold on. I thought we were just going to get some tests. And you're like, yep, so we did. And what they told us is that we need brain surgery. And then I had a lot of questions. And I can't remember who of the crew you hadspoken to by that point. Because, you know, eventually there was a fill in schedule, who needs to be when, where, what, how for support? Who's coming? And I don't even remember what shift I had.
J Smiles:I would tell you, I don't know exactly what shift you had either. But what I do know is this, your children was still very young.
Monica:Mm hmm.
J Smiles:Okay. They could not care for themselves. Yep. I don't know how in the world. You got to Cali as fast as you did.
Monica:Yeah. Well, I mean, it was clear that you needed some support.
J Smiles:It was between you, Christine, Sayon, and Aunt Cheryl.
Monica:Yeah.
J Smiles:You all talked to each other
Monica:Yep.
J Smiles:And came up with a plan.
Monica:Yep.
J Smiles:Because I do know that somebody was there by the time my mother went into surgery, which was like, 36 hours later.
Monica:Yeah, it was the pylon. Yeah. Right. It was obviously still grieving your father, and trying to figure out that cosmic shift in your world, and then having to observe, and then finally come to some conclusions about your mother's cognitive health. And then in the middle of the grief, have to like be locked and loaded on her health and put that, you know, you had to suppress the grieving, the mind is powerful, but there's only so much you can, you know, a glass is only so big after a while it it overflows. And I think with grief and that sort of thing. Like it, it could have exploded in a not so cool way. And I think we all recognized that.
J Smiles:Like, Uh Oh
Monica:Yeah and we know you, you know, you feel very deeply. And so it's not as natural. Not that you're alone in that. But it's not very natural for you to just keep bypassing circumstances without feeling them.
J Smiles:Correct. Yeah, I think we decided it was the two of us meeting JG as Zetty calls me and Moni as a lot of people call you. That kind of came up with the nickname of me being john coffee from the green mile. Whoever thought about that, who seen that movie? Now, I'm not as bad as that character, John Coffee, but as real humans go, I can certainly I'm an empath. I'm a functioning empath, but I can absolutely be worn out to the point where I have to go lay down, or I might immediately pass out and go to sleep, go to sleep in the middle of conversation. If it's real heavy, and it tickles and touches all of my senses. I fall asleep right there in the middle of eating or talking
Monica:If you didn't know you would think she was putting on. I swear to God because if you're not like that, if you don't right then it's interesting to watch, but then you're like oh You know, then over time, if you were sleepy or you had that like immediate downtime, it was kind of like okay, what did she just consume emotionally?
J Smiles:Correct
Monica:Who had her, who was with her?
J Smiles:Right
Monica:What happened?
J Smiles:That's right. And then and then my tight crew is like, Hey, don't let J answer the phone and talk to Person A
Monica:That's right
J Smiles:Because they drain her and she can't be drained because Zetty just went through brain surgery. So then, which was hilarious when I found I found out finally that my crew was then protecting me like they were a moat around me to make sure that certain things and certain people didn't get to me because emotionally I could not withstand it. On your trips to LA,
Monica:Mm hmm
J Smiles:What do you remember around maybe either how I interacted or engaged or how Zetty interacted or engaged in trying to settle into this new space of- Okay, Zetty has this shunt in her brain, she has to have it forever. And at that time, she had not actually been diagnosed with Alzheimer's.
Monica:Correct
J Smiles:They were telling us it's likely coming.
Monica:Mm hmm.
J Smiles:But it hadn't happened yet.
Monica:I remember you being I wish I had a good analogy. It's almost like on a, you know, you were on 10 for Zetty at times, but then you would have these low lows, right where you would be sleepy. I don't even know, I can't remember. Maybe we got to grab the beverage or two, you were locked in, bypassing. That's really the word that comes to mind is that there was more underneath. But you had to figure out what was happening with your mother. And so you were very instructional.
J Smiles:Okay.
Monica:And you gave a lot of information.
J Smiles:Right
Monica:Around good information around what was happening was Zetty, that mean, you didn't know how you were feeling? I remember several times just trying to get a get you to articulate it. And you were unsure. And I now understand, maybe, hopefully, then I did too, is that there was so much pile up. And things that you hadn't dealt with it you're like, I can't even get here to talk about how I feel now about having to rush my mother into emergency brain surgery. You know, how many ever miles, 2000 miles from home.
J Smiles:Right
Monica:I was happy to see it. I was I wasn't happy to see you in that state. I'm happy I came so that I got an understanding of where you were.
J Smiles:Right
Monica:And, and better how to support you. And then I was heartbroken, I guess seeing Zetty while it was happy that she was healthy overall, she could walk, but her cognitive abilities and playing puzzles with her. And I remember in my mind, this could be we could learn ourselves out of it.
J Smiles:Right
Monica:Right. This was the beginning I hadn't done all the research. And so I actually I had done some research and in that I'm thinking you know if we play so many games, and we do these number puzzles that, you know, we're gonna
J Smiles:We can beat it
Monica:Like, yes, like learning to walk again.
J Smiles:Right, and we can get out of this thing.
Unknown:Yeah. And then, you know, just to ask her the most basic questions and play these games and her not be able to answer the questions was something.
J Smiles:And just for everyone to know. So Monica and I did not grow up together. We didn't go to college together. But we became really really, really fast friends fast. Right. So just let me back up just a tad to say a little bit about that. We met in Boston at the turn of the century. Ah, God, right turn of the century in the millennials. And we met through Chip Greenwich Greenwich. I just like calling him Chip, But I guess I should say his whole name, Chip, Greenwich. And we were asked to serve on a board. We were board members together. And the purpose of that board was to expose youth in Boston to HBCUs because Massachusetts doesn't have any HBCUs historically, black colleges and universities. I went to Howard, Monica went to Hampton, my mother also went to Hampton. I'm a Delta Delta Sigma Theta sorority, Incorporated Monica's a Delta she pledged at Hampton, I pledged at Howard my mom pledged at Hampton. So at our first meeting, Monica and I decided Yeah, we of course, we are on this board and we love all about this, but oh my god, we're cousins now. We just jumped right over it. Seriously. Monica's Your mom is from Atmore. Alabama. Yep. You were born in Atmore. I'm from Montgomery, your mom went Tuskegee.
Monica:Yeah.
J Smiles:Your Mama was there when my dad was at Tuskegee.
Monica:Yep and remembers him
J Smiles:Right figured out that they knew each other while they were in school enlisted. But anybody who ever lived in Boston, that's not from Boston. You don't need but one thing in common with a person of color from (laughter). If you living in Boston and not from there, its like a mirage. Thank you so much, we can be friends right now. It's tough in Boston, if you're not from there,
Monica:Yes
J Smiles:You are a person of color. So Monica, and I decided that's it. That's enough.
Monica:Yep. We friends.
J Smiles:We are friends and you can't leave me and I don't care. Whenever you're free, tell me I'll make myself free.
Monica:Right.
J Smiles:So while we had not known each other for long, my mom had several business meetings in Boston. You had several reasons to come to Alabama for family functions, so you met my mom and you met my parents several times like they were both fully alive and healthy. So you had your own
Monica:View, perspective.
J Smiles:Yeah. Your own set of Yeah, thank you all of that. Yeah. I mean, you hung out with him.
Monica:Mm hmm.
J Smiles:Saw him , you know, cut a rug, so to speak.
Monica:Yeah. And wow.
J Smiles:Yeah. It was different.
Monica:Mm hmm.
J Smiles:It's was very different. Yep.
Monica:So anyway, California was, was an experience. It was a great reality check to where you and Zetty were.
J Smiles:So we got out of California.
Monica:Yep.
J Smiles:We did make it out of there. It was tough. I can remember, one of the craziest parts of California was when it was over. And, and they discharged Zetty and they're like, Okay, so now, you know, she's healthy enough to leave the hospital gone about the rest of your life. And I'm thinking rest of what life With whom? Where? And how do I do this?
Monica:Right. Right. And you're letting me take her?
J Smiles:You trust me right? To do what?
Monica:I'm a mere mortal.
J Smiles:I am a mere mortal. And I don't know nothing about none of this. And so you were very helpful with identifying care agencies.
Monica:Which was another whole thing right? It's like you return to some part of the country where you lived or you know, your homes, and you'd now need caregivers. What?
J Smiles:I don't even know what those are. Who are they?
Monica:What do they do? How much how little do they do? Should I leave my mom with them? Yeah, what questions should I ask? How do I know if they're creepy?
J Smiles:Correct. I mean, I know Craigslist isn't appropriate.
Monica:And we didn't look there just so you know.
J Smiles:But like, Okay, I'm used to looking at like a TripAdvisor , all right. Like my Google searching capabilities are pretty nice. But after TripAdvisor, and like Yelp, I'm kinda so. So okay. We've kicked it a lot, Monica. We've traveled a ton. We've gone to a ton of conferences, you know, whatever.
Monica:Yep.
J Smiles:We've learned a lot.
Monica:Yeah
J Smiles:Right. A partnership, shout out to Boston again, Benny wildly. We've had great mentors who happen to know each other, like for us to have met as adults
Monica:As adults, that's the thing
J Smiles:Right
Monica:Yeah
J Smiles:The way we met was through professional partnerships, but it has really exploded, and then into just a really fruitful set of relationships, and then our, our zoom circle, they will be on another podcast episode. And as we get ready for that, everybody. I don't know what's gonnahappen, I plead the fifth in advance. But what I want to ask of you is to try to put on all of those hats if you can
Monica:Yep
J Smiles:You really know J Smiles. You know, Janay, you know, JG you know, Jay, you know, Jasmine, that's, that's a nickname that comes out of Zoom
Monica:Cats out of the bag.
J Smiles:I know, I know, I know. And so what I would like for you to share because my purpose in this podcast really is it remains threefold. First and foremost, it's to support caregivers and to say it's a lot of us out here, where we are not trained in anything medical, but we dearly love our family members, somebody something that we decided to care for. Shout out to our ellos in caregiver speak. That's loved ones.
Monica:Okay.
J Smiles:Yeah. Yeah, I wanted to bring in
Monica:I learned something new
J Smiles:That's what I'm say ng. I want to make you be a coo kid. Shout out tau ellos. Ano her thing is to just bring gen ral awareness to what Alzheim r's looks like in an ind
Monica:Mm hmm vidual and to get a cure.
J Smiles:So I'm just trying to take away the mystique, share and show we are normal people.
Monica:Mm hmm
J Smiles:I bet you there are a lot of people who are caregivers, and many of their co workers friends, church members don't realize that their caregivers.
Monica:Right
J Smiles:And so I wanted to show our faces right so I would like you to share the Pre-Jay/JG person you know, and then the as caregiving has become more and more and more a part of my existence who that person is.
Monica:Yeah, I think the word that comes to mind his priorities you know when I think back on the you pre Zetty being diagnosed it you know, somebody who was just so moment to moment and so you know, at any time you could be off, you know, flying somewhere, going to a new country, traveling with friends, jumping out of an airplane like who knew, right you just I don't know you home today. You might get a postcard from Australia tomorrow. And really, I mean, full of life. And I'm gonna say post, it's not that any of those things have gone away, it's just that your priorities have shifted to literally, it's like all roads lead to Zetty. It is. It's amazing actually to watch. And Chris and I have talked about this is that, you know, some of what you do is teachable and some of it is fabric. The heartbreak, you know, in your voice and in your eyes when your mom takes a turn and a new thing comes, you know, related to Alzheimer's, even though you know, it's coming, it's just, you know, because you're empathic, and because it's your mother, watching you process that. And I think as a friend, and somebody in your support group, I guess what I would like to offer is this grace, I think is what I would ask people to have, and in the grace that you have for your friends and people that you know, as caregivers is observation. You know, there, we all have our own lives and not every friend is cut out for every position as Janay well knows, right, you know, who's in your crew. But if you're really good at something, a particular thing, I think it's a great time to show up for the person that you love, who's a caregiver. You know, I suggest that as you all listen to this podcast that you try not to compare, right? That is not the goal. The goal is about doing what you can to shore up the well being of your loved one, to fight for them, to continue to display awareness, talk about the awareness, Alzheimers awareness, because you said something maybe a week ago or something you posted that nobody has ever been cured from Alzheimers. And that I think that was the thing that I mean, that struck me and you're talking about
J Smiles:Yep not one person ever in the history of the world, in no country, ever, not one time ever in the world?
Monica:Yes, so we got to get behind this. Like it's, it's a very unforgiving disease. And I think over time or in in the past, it's been, you know, they put the person in a home or keep them in a room and people just don't talk about it. And so anyway, back to who Jay is, now, I'm just gonna say that everybody is different. So even in in the way that I'm talking about Janay, at my point in this is really about observation and paying attention to your people to figure out what it is that they need. So I would say that Janay is still very full of life. And her heart is still global, although she is very local.
J Smiles:Dude, have I ever have you known me to be this stationary?
Monica:Never.
J Smiles:And could you have thought I can stay this stable emotionally?
Monica:No. I mean, and in the beginning
J Smiles:First of all, I should say, Have I been stable emotionally?
Monica:Yeah see that's a relative, that is a very relative thing. Because in the beginning, there were low lows.
J Smiles:Yeah.
Monica:And then over time, I think we had a thing we talked about your, your recoil factor.
J Smiles:Oh, that's a good one.
Monica:Yes.
J Smiles:Please dig into that.
Monica:And so in the beginning, literally, there will be a moment. And, you know, whatever, something happens to Zetty and Janay again, realizes what has happened in her life. And it she might be in bed for two days. And it just it took a long time.
J Smiles:When you say beginning?
Monica:When Zetty well, we go back to Jocko, but since we're talking about Zetty in the beginning, like when Zettywas seeing people after the brain surgery
J Smiles:Just when just just for clarification. You mean when she was first when she was first?
Monica:When she was first diagnosed
J Smiles:Got it.
Monica:Jay, when you were recognizing that all of this was going down. And I think all of us were in denial for a little bit. We were all playing games with Zetty. And we're like, yeah, what can we do reduce sugar, do this and still some of those things are helpful because you you know, want them to be healthy and and not help the disease progress. But in reality, it was happening. And so it was the multiple realizations of that, which is what I'm talking about that would send you into a emotional, you know, spiral for days.
J Smiles:Yes.
Monica:And then over time, you came out faster. So you still felt it, you didn't bypass it, but your ability to return became faster. And I think that's an important point. Because for people who feel deeply I could imagine that it feels like this is never gonna end. That this pain will never go away, that it's always going to be something new, that I'm not going to get a grip on this and then to add on to that you're dealing with your father's estate, and all of the financial matters that have to be dealt with and the IRS don't give a crap.
J Smiles:Okay, pause on this podcast when you hit something that the host, which would be me feels deeply (appluase) okay. Whew continue.
Monica:Yes. So and, you know, again, the crew jumped in and helped with with as many things as we could that she could delegate but J is an only child, most of the decisions and the burden fell on her so I'm gonna say this post post J.
J Smiles:Okay, now post post.
Monica:Yeah.
J Smiles:So which one where did the post post come from. So post I'm thinking post is Zetty was diagnosed so Jocko has passed Zetty has had the brain surgery and been diagnosed with Alzheimer's.
Monica:Yeah,
J Smiles:That's post. Second post you identifying as when
Monica:Second post? It was when you started getting into meditation
J Smiles:Boom, shout out to light watkins my guru.
Monica:Yeah
J Smiles:That would have been the end of 2015 going into 2016.
Monica:Okay, so it's three or four years later. And it it was your hunt for better?
J Smiles:What? Hold on. (applause) First of all,the engineer geek in me loves having
Monica:Yes. buttons.
J Smiles:Yes.
Monica:Yeah, it was the hunt for better the understanding that I can't, this is not sustainable. For me to live, in general like to be on Earth. This is also not sustainable for me to take care of my mother.
J Smiles:That's so true. I would like to say just a tad on that, please. And this is very specifically directed to anyone who is a caregiver. I was falling apart on the inside. I knew it. And that "whole whoa is me martyrdom, this the hand I'm dleat this the best I can do. I made it through another day. Well, God doesn't put more on me than I can bear. I guess if I just eat, make sure my mother has eaten, taken my meds. She took her meds if we shower, we just do it again." Listen, my Jesus, my Buddha, my Confucius, he ain't mean for me to get through it like that. And so once my mom's ailments had been identified enough, and were stable. To me stable just meant we now know the medications. And we know the routine for her day and I had my migraines, at least at that time, enough under management, that I could start to say, How do I manage my stress differently? Because Jay/JG this is your new normal and this is the stress that's a part of your everyday life. How do you manage it? Well, you're absolutely right. That meditation, I tried a few things that took the edge off. But I agree with you completely that meditation was for me, a more sustainable game changer. Hot yoga, swimmin, things of that nature definitely were useful.
Monica:Yeah.
J Smiles:Meditation. kind of kept the lights on.
Monica:Yeah, you know, travel at that time. You could travel.
J Smiles:Oh wee, hold on. (appluase) Wait, I'm a I'm a double down.
Monica:That's right. That's right.
J Smiles:Yeah, one thing that he has always said my entire life. Nothing makes me happier than leaving.
Monica:Mm hmm.
J Smiles:She said, My baby jG has always like to go.
Monica:That has uh since been curtailed. And not just you know, COVID was a big part of it. But even before that, I think as as Zetty makes these turns, some come fast, some come slow. And Jay just decided to lock in, you decided to lock in. And again, I'm going back to you can't judge a person's the way they care for it's like parenting, parenting up. If a child is doing the best they can that they know how for their parent, and so lecturing people about what they should or shouldn't do or how they're handling it, it's different to offer things that you think might make it easier, but to judge them on the journey makes the path even more difficult. Would you agree?
J Smiles:I completely agree. I personally have never taken it well, when someone has used what I receive as a judgmental tone, and or what I'm going to say, directive words. Iif you are asking about my mom, or offering suggestions, or even saying, hey, Jay, I heard you say this, have you considered this, I'm open for that. I'm even open for a positive critique. I've had people mentioned things such as, I don't know how long you're going to be able to keep that up. If that's the beginning of your sentence, I just checked out on you. And that has come from people who historically have been in the category of they care and love JG and Zetty, deeply have been in our corner for decades. J ayI don't know if you should start that because I don't know how long I'm gonna be able to keep it up. Or if you keep doing that much for your mom, you're going to grow to resent her. Whoa, hey, Where's it? Was it? Ouch.
Monica:And it's just a story. How do you know what I'm gonna? How you know what's gonna happen?
J Smiles:That's going to be another pop that pop up, pata tatata. That's going to be another episode. And I'm going to know I'm going to have you aren't talking about that. About stories we tell ourselves. But in any case, yes, I completely agree about parenting, whether you are parenting up, parenting down, or parenting latterly, many of us are parenting siblings or someone in our friendship group.
Monica:Yeah
J Smiles:Right. Because parenting is where you are doing some level, in my opinion, is you're doing some level of nurturing and care in a protective manner where the person you're needing to care for them, like a parent would.
Monica:Yeah, I'll also say that I, you know, it took a while. And it's interesting, again, for your core crew, of people watching, there were people who were taxing you along the way. But they had been around
J Smiles:What are you saying, Miss Monica?
Monica:I think your loyalty to them, you know, kept making you deal and try to work it out and figure it out. But they just
J Smiles:I'm currently folding my arms.
Monica:They, they couldn't be along for this whole journey, because they didn't have capacity, and nothing to do with love. You don't have to get angry to turn the volume down on people, but sometimes for your own sanity and for the walk that you need to take for your loved ones, you're going to have to turn the volume down on some relationships that aren't supportive, because you can't it's expensive. They're too expensive, because they take too much from the journey.
J Smiles:That's true.
Monica:Yeah.
J Smiles:Can you give me a slight example, for the benefit of other caregivers who may feel guilty? At least I have a few things coming to mind where in that moment, or in some moments where there's a person or a group of people they've been by your side through other moments of life? You all have been I say were thick as thieves and how do you cut them loosw or turn the volume down? Like why? What gives you the right to do it now. And like just hang in there a little longer, there's a bit of guilt or anxiety around, potentially not being sensitive to their needs. So I can remember thinking, Man, Jay, are you just are your nerves a little frayed? Are you potentially a little less? Is your fuse short? And are you not being reasonable?
Monica:And you know what? See that could be the case but in certain circumstances, again, as part of the core crew, you have to give grace. That is where a person has to be extended grace, and I'll give a hypothetical of what I'm speaking of is. If your people in your surrounding you do not adjust well to your new normal, they probably can't stay. So if you have someone who used you as their sounding board for all the times where things go wrong in their life or you know they come to you every time there's a whoawith me, and they're not paying attention to the fact that you don't have capacity to hear these things at this time
J Smiles:Right
Monica:Because your level of response, and what is important to you has now changed, at least for this time, maybe forever. But for people who aren't adjusting to your new thought patterns and the way you think about life, and the things that have become completely irrelevant to you. They probably can't stay because they're gonna keep trying to pull you back to your old self that potentially doesn't exist anymore certainly isn't here right now.
J Smiles:What?
Monica:And I'm a communication person. (appluase
J Smiles:Yeah, you are.
Monica:So I would prefer you know, but again, this goes back to Jay is more empathic. And so she doesn't like to have these confrontations if she can help it. And it's not that I like it, but or and it is just that I don't know how to leave it out there. Something has to be done. The volume has to be changed on some relationships. And it's fine.
J Smiles:Thanks. I appreciate that as a vote of support. Okay, so now we'll change gears just slightly. You have actually traveled with JG and Zetty a couple times. You've traveled with me a couple of times when I was having anxiety and panic, because tZetty wasn't with me and I'm thinking, Oh, am I going too far? Am I have I been gone for too long? I remember once I even ordered a satellite phone, because we went to Antarctica. And do you remember me like hanging over the edge of the balcony, sothe satellite antenna could get through?
Monica:The connection, yep I do
J Smiles:Yeah. And I got that satellite phone. I rented it for a month, so just so I could have it for 10 days.
Monica:Yep
J Smiles:But I got through and I can hear her.
Monica:Yep
J Smiles:What I want people to know is that find your own ways of comfort for me, since I know that travel was important for me to stay J, but also knowing that my mom is okay and being able to touch whoever's with her. And in that instance, touch just meant to hear, being able to actually hear a voice. Text isn't enough, if I'm out of the country, I need to hear everybody's voice and they need to sound okay to me. I investigated satellite phones. I never really used satellite phone before, but when I googled and said how can you talk somewhere if your cell phone doesn't work and they say satellite phones. Okay, well, I'mma rent one and believe it or not, they weren't that wasn't ridiculous. If I tried to pay, buy one that might have been ridiculous to rent one for a month wasn't crazy. I tell you what it a steak dinner at Ruth's Chris costs much more than renting that phone. Also, Monica, you have stepped in and been awesome when I've had moments of panic, like if there have been times when we were out of town, and I'm trying to clean maybe trying to clean mom or get her dressed and she starts to have a bit of a cognitive episode of decline. And then there are moments when I just become her daughter, and I'm so sad and frustrated with what she can't remember. And even though you're not a caregiver, and you haven't had that experience with anyone close to you, you step right in, you glove up in some kind of way, you know what to say and do and you start talking very kind, very sweet. I've never asked you to do it and I've never trained you in my technique, so to speak, where does that come from?
Monica:I think not assuming that I know and paying attention to how people flow like if there are times and just outside of this, right, I have friends, Jay is one of them who I don't want to say feels more deeply, but her response to what she feels is different than mine. I recognize that. And so instead of being me, for you, I try to be more like you for you.
J Smiles:Say it slowly one more time just so two people in the back, get it.
Monica:When youfeel something, your response to it is very different than when I feel something and there then are times where I just don't feel things as deeply
J Smiles:Correct
Monica:But when you are feeling something, then my goal at that moment is to be more like you and your response to you. Instead of being like me in my response to you. Now, I know there are times where you need to hear that you're doing a great job, you're doing all you can because you know in this instance, all you can is not going to heal your mind.
J Smiles:That's correct.
Monica:Right. And so I could imagine that sometimes it's might feel overwhelming, all not in a regret way, obviously, but just in a God I'm exasperated, and I want to help my mom and I'm, there's nothing I can do. And so to your point about switching modes between daughter and caregiver, and that could be moment to moment.
J Smiles:Yeah, it is, like, all day every day. I mean, you step in and then, but I've seen you more times than I can count, you step in and then you, you interact with my mom in such a effective and caring caregiver like manner. You're not a caregiver, and I don't know how you do that, when you've, I've like, I've never really said, Hey, Monica, this is the way I do it.
Monica:I'm gonna give that to the universe. And I think that part of my calling is about the human connection.
J Smiles:Okay
Monica:And I think that's been my whole life. I like connecting to humans. I like other humans. And so I am adaptable.
J Smiles:Gotcha. Well, good for me. Yay, JG. What would you say to someone like yourself, you're one of my very best friends, you actually are involved in decisions I make about my mom. There are times when you actually assist me in caring for her. What would you tell someone like you when it comes to supporting the caregiver?
Monica:Take off your judgey hat. Like step one, this is not your life, it is the life of your friend or loved one. The other thing is do what they ask, they know how they want to love and care for their loved one. It's kind of like when you and Jay knows this, I hate referring to people with Alzheimer's as babies, but there are some like elements of the journey.
J Smiles:Correct
Monica:But it's like when you drop your child have at someone's house to watch them and you say please don't give them sugar, or please don't let them sleep all day, and you come back and they have had two packs of Sour Patch Kids and been sleep for six hours. It puts a burden then on the mom or the guardian of the child. And so it is not up to you to decide how this journey is going to go. And if you can't let go of that control, then you should let go of being part of the journey. In that regard. I think then maybe your goal is to send meals, to send a card every now and again, they need it put something in the cash app, right, that sort of thing, play the role that is best suited for the caregiver, period, end of story. If you're a person that believes you know best, then you shouldn't be part of the journey of caring for the caregiver.
J Smiles:Right you shouldn't be apart of the inner circle.
Monica:No
J Smiles:You do not know best
Monica:Because you're expensive, because you're costing the whole team.
J Smiles:Too expensive.
Monica:Yeah, because the team has to come in and pick up the thing that you've thrown off or the way that you've thrown the caregiver off. And so don't judge, do what they ask and now maybe you have questions. I'm not saying there are times where you know, Jay may make a decision and I may ask a question about it, but one my tone I don't believe is judgmental. I'm really trying to understand.
J Smiles:Correct
Monica:Why she's making that decision because potentially I might have a new solution, a different solution, a way to go about it that I think would be more advantageous.
J Smiles:And totally open
Monica:Yes
J Smiles:To new solutions and better ways to doing it. Because...
Monica:Yes
J Smiles:I am not the end all be all. I am the last decision maker, but no part of me thinks I have it all figured out.
Monica:And you have so much on your plate, there's no way for you to know every little tiny thing that is also happening in the world of Alzheimer's or agencies and caregiving and new medications. Like you keep up on a lot and I don't even know how you do that, but there's just no way to cover it all and care for your loved one.
J Smiles:That's correct.
Monica:Yeah.
J Smiles:And sleep and J Smiles.
Monica:Yeah.
J Smiles:And did I tell you the IRS wants most of
Monica:Yeah. Yeah.
J Smiles:Also, um, a lot of this to you. Is there something that you wish you could get me to do differently? Like in a perfect world, you're like, I don't think Jay really sees this. But if if I could just get her to tweak this or if we if you would say this as a caregiver supporter- I wish more caregivers would do this for themselves. I wish they would sleep more or drink more water or watch less murder shows.
Monica:Yeah, see? Audience This is the time where I wish I could ask her to step out. So we could have a private conversation about this, but she's gonna stay, and so I'm gonna let her rip. Okay? Um, yes, I would love if you released a little bit of control. And I know it's challenging, this is just my wish, because you live with your mom. And so you just so happen to be around when everything goes down and so you are way more in it sometimes. And I think you have to be particularly when there's a very high functioning caregiver that's here and it's not wrong, obviously, because you want to, that's what's wrong. You want your mother to have the highest level of care, and you want her spirit to be happy, and, you know, amazing at all times, and rock out on it. But on from the outside looking in, I think, you know, potentially there's opportunity to I wish I shouldn't say there's opportunity, because and I want to clarify that is because when you do something, if you're a caregiver or a mother, and you do something that goes against the thing in your belly, that's telling you to do for your loved one, or your child and you don't do it and something goes wrong, it is hard to recover from that. So I just want to clarify that I'm not saying opportunity, but I'm talking about my wishes. So I do wish that there might be a little less control and a little more planned sleep, potentially. But again, this is so relative because everybody handles things differently. Brain food for you, you know, so diet wise, keep your vices and maybe add in some more healthy options. And so I say that to those who are caring for caregivers and for caregivers is this all goes to crap if man down. Because then you can't you can't even care for your loved ones if you now are sick or dealing with hypertension or dealing with something that could be cured with some spinach and five hours of sleep.
J Smiles:So double up on the coffee and Bailey's.
Monica:It's fine.
J Smiles:And add 30 minute naps.
Monica:And a smoothie, maybe with some kale.
J Smiles:Got it?
Monica:Yeah.
J Smiles:All over it.
Monica:Yeah.
J Smiles:Thank you.
Monica:Yeah.
J Smiles:I actually received all of those. They received those with a great with open arms, open arms and open heart. This has been fantastic. You are welcome to come back whenever you like.
Monica:Thank you.
J Smiles:Good nice guy helping people. If Zetty we're here- You remember when you worked for Reebok. She kept trying to take the tennis shoes.
Monica:Yes.
J Smiles:That you gifted me because she said my baby gi sorer or would really want me anyway. I will say on behalf of your pro fight, thank you so much for being on my podcast. This has been fantastic. Can't wait to do again. The snuggle up- Number one, Ask your crew, your caregiving crew, what they wish you would do differently? What do they want you to modify to make your life go better? You may not adhere to any of the modifications, but just listening to their perspective could be useful. Number two, turn the volume down in the relationship in those areas of life that's causing disturbance on your caregiving journey. Number three, join us every Monday night for our live streaming show on getvokal.com 9pm eastern standard time in the United States. Cannot wait to see you, chat with you, hear your questions, and your comments about caregiving. Also sign up for our Parenting Up email list. Both have details in the show notes. That's it for now. Thank you for listening. Please subscribe for continuous caregiving tips, tricks, trends, and truth. Pretty Pretty please with sugar on top, share and review it too. I'm a comedian, Alzheimer's is heavy but we ain't got to be.
