התמלול המלא של Doing Too Much and Not Enough: Caregiving Autonomy

Michelle: Yay! He pooped in the potty. Okay, that is miraculous for everybody. But he had to work so hard for it Kimberly: yeah, so it, it, like, o- and on some level, all parents have to have that moment where they're like, "Oh, gosh, they pooped in the potty." Mine is eight years old. He's been in diapers for eight years because he didn't have the cognitive capacity up until now to understand even what it was to sit on a, on a toilet. Plus, he is in a wheelchair, so getting him to get from a wheelchair onto or from a crawling onto a toilet, i- it's just a, it's just a whole thing. It's a whole thing. So I started potty training him about two weeks ago, and yesterday when I put him on, there was no poop. And then I sat him on, and then he got up, and there was poop. So I don't know if it was intentional or if it was just, it just happened, but, like, I was so excited. So from that perspective, every single milestone that he reaches is such a big deal we didn't know if he would walk. We didn't know if he would talk. We didn't know how much cognitive awareness he would have, and I swear every day there's something else that that kid surprises me Michelle: I think it's just doubly that exciting because as you say, when he was born, his doctors had no idea how, whether he would survive, whether he would ever walk or talk or see or move or... They, they had no expectation as to his success. And so every single success is like a little gift. It's a gift that he's giving to you and the universe is giving to him Kimberly: Yeah, and it makes me grateful. It ma- it, it, it makes me practice gratitude because he may not reach all of the milestones, and so every time he does, it's, it's like a little, it's like a little miracle all, like, wrapped up in a bow. I'm super excited that he's in the process of understanding this. And I will tell you, too, is in his do it myself era. So now every time I pull him up to our doorway, he reaches for the door handle. And he doesn't have any leverage because he's in a wheelchair, so you know, like, he can pull on the door, but all he'll do is hit it against the chair. But he's trying to help open the door. just makes me so happy. And this, this summer has been a summer of milestones with this kid, let me tell you. I put him in swim lessons because he loves the water. He hates soap Which, yeah, makes bath time and w- hand washing like a nightmare. But he loves being in the water. And so as he's e- getting older, I don't want him to, to, to think that he can swim if he can't swim. I don't want him unsafe, and so I put him in swim lessons. And within the first 30 minutes of swim lessons, this teacher had him floating on his back Now, it took a couple weeks before he could float on his back unassisted and also self-adjust. You know, as you sometimes start to kinda like list one way or the other. He's starting to, he's learning now how to his body so that he's floating on his back and doesn't have his head in the water. And

it has just been a, incredible summer because don't have to worry. I've been able to go out and take him places, and I don't worry so much because he is expressing how much independence he wants to have o- over his own life. And I'm trying to give him as much as I can. Michelle: always have. You always have given him as much opportunity and freedom as you could Kimberly: So let me quickly transition then to talking about the autonomy of the people that I caregive for. With, with my eight-year-old, I'm not as concerned about stepping on his autonomy because for one, he is still eight years old needs full-time care. Um, and for two, I do offer him as much autonomy as I possibly can. with my other two charges, um, it's, it's a little bit more of an effort to And it's, it's kind of like a s- a, a, a trial and error. Like, I stumble through, like, how much do I do for them? How much do I do alongside them, or how much do I step back? This summer has been the, the most challenging part of caregiving. 00:10:48.000 --> 17:57.000 MS MF sucks Kimberly: So my oldest son has multiple sclerosis. He's almost 30, and he has been on his own for about 10 or 11 years. And he had a flare-up in December, which caused his body to just shut down. Um, and so for the past eight or eight months or so, he's been f- like, fighting tooth and nail to claw back of his physical independence. So he's gotten to a point now where he can walk, um, with a cane, and he is driving again. But also There is a cognitive fog that often happens with brain injuries or with multiple sclerosis that basically multiple sclerosis is lesions on the brain. So I- I've been feeling like, um, a lot of what I'm observing with him feels like a traumatic brain injury. And it's been a challenge to know just exactly how much or how little to do for him. want to let him do his own thing, and sometimes he shows up for himself in his life, and then other times he just doesn't show up for himself in his life. And so I thought maybe we could take a few minutes to discuss the challenges of trying to be a caregiver for somebody who wants to be independent but can't quite yet be independent. He also struggles to understand what his own limitations are. I guess more accurately, I could say what he thinks his limitations are and what I think his limitations are, are apart right now. And so it's been really hard to know how much or how little to do for him when I believe that if I don't do certain things for him, they won't get done. And so fine, some of the things that don't have to get done, but some of those things do have to get done. And so I've, I've been really hands-on for the last multiple months. Um, and now that he's starting to feel physically better, he's starting to challenge me a little bit on like, "Back off, Mom." So I'm just gonna leave that there for a moment and let you, and let you help me reflect on this. Michelle: I've watched you for the better part of a year really struggle with exactly this question of how much do you step in and how much do you not step in? And I've tried to create pathways and permission and ways forward that you can step in more with confidence that you're only doing good for him and not doing bad for him. So I still right now am a little confused as to what is your, what is your continued hesitation knowing what we know now? What's your continued hesitation to not wanna overstep your bounds? Because it could be for his sake, it could be for your sake, it could be for habit as being a mother, it could be that you're just trying to tread carefully because this is an extremely important relationship to you. You, you have gone through a process, but even today there's significant hesitation to not want to intrude on his autonomy when I think right now where he is, he needs you to do those things, and I don't think it's intruding on his autonomy. I think it's creating a life for him Kimberly: All right, let me... Yes. So let me explain a little bit more about what, what the challenge is with him right now. He believes that he is on top of all of the things about his life that need to be on top of. His doctor's appointments, his medication management, his, um, paying bills, um, moving forward with trying to find another job. And I'm seeing very little movement in, in a lot of those areas. So the challenge that I'm having is I believe that some of the lesions that he's had recently from his multiple sclerosis has also affected his ability to be self-aware, um, particularly in the areas of ma- medication management, taking care of his doctor's appointments, um, paying his bills, um, being able to manage money, uh, moving forward with trying to find a job. And all of these things are things that he thinks he's taking care of. from where I sit, he's not taking care of these things. So if I am not reminding him in the morning to go to his appointments, he either doesn't go or he goes to a different appointment that he thought was on this day and not actually the appointment that was scheduled for this day. He just is very confused a lot and doesn't see it. So the challenge that I've had been: what do I do with that? In the arena of wanting to give him his own autonomy, I'm also seeing that if I were to just step back out, he would probably continue to spiral downward into a place is what happened when, that got him into this flare-up in, in the first place. So My gut wants me to help him to see his limitations. I want to make a list and be like, "You said you can do X, Y, and Z, and you have not done X, Y, and Z." But the more digging that I've been doing on this, the more I'm finding that if he's cognitively and physically incapable of having that self-awareness, then me just coming at him with proof is actually really counterproductive. What I'm finding instead is that the best approach is to come at it with relationship and with listening and with empathy. Last couple of days since I've really have come to this

conclusion that proving to him his limitations is completely not gonna work, it's actually really lightened up my load a little bit, um, the burden on me. Because now what I'm attacking not his willingness to see what he's capable of. What I'm attacking is, how do I help him to get all of these things done while also him a, a sense of his own autonomy, and also making sure that those things don't fall through the cracks? So that's what we're dealing with right now with, with, with him, is- is I'm trying to, I'm trying to practice the art of listening to what he has to say and then figuring out a way to get the thing done without offending him. 00:17:57.000 --> 22:35.000 Stop proving start doing Michelle: So this is interesting. You started this section by saying that he doesn't acknowledge the, the issues that are going on with him, the, the, the capabilities gaps. And I was going to ask, he denies the capabilities gaps, does he really believe that, that he's fully capable, or does he feel like it's the right answer to say to you that he's fully capable? And at, at this point, I don't think it matters. I don't think he will ever get to a point where he doesn't believe he's fully capable and, like, understands fully his, his limitations right now. And I don't think it matters if he's trying to give you the right answer or not, because the result is the same Kimberly: I think that's accurate. and that's kind of why I wanted to talk through this is because an ... I think a natural response to that un- in, in, inability to, uh, to, to be self-aware to try to change that. And I think a lot of caregivers are gonna be coming at their pr- loved ones with the perspective of I have to get them to see the truth. have to get them to see the limitations. I have to get them to see all the things I'm doing behind the scenes. And what I'm realizing now is that's completely not only not gonna work, but it's gonna make things worse. So you're right. It doesn't really matter whether he believes it or not. Um, but in answer to your question, I think he truly believes he's capable. I think he really truly believes that he's functioning at full capacity, which is a blessing and a curse. Like, it's ho- horrible in the sense that then I have to I really do have to kind of keep picking up the pieces putting the pieces together before they fall apart, also a little bit of a relief because then I realize it this is, this is no different than the fact that he has to walk with a cane. Like, I could no f- more get him to walk without a cane, like, or run down the street than I could get him to understand what some of his limitations are. So in that sense, it's a little bit freeing Michelle: We've talked about, about this, and it's not the exact same situation, but we've talked about so many times that we sometimes feel like if we could articulate the exact truth the right way to somebody, then they would get it, when all we're doing is hitting our head against a brick wall. And sometimes that desire to get someone to agree with us or to see the truth the way we see it is stopping us from taking action. And I feel like the process you're going through right now is to stop trying to articulate that or trying to, to not articulate it in a way that's gonna hurt his feelings or to make him combative to- toward you and you're now moving to just taking action, and that becomes the more important piece than trying to articulate your truth Kimberly: Yeah. I think that the reason that that feels like a more natural thing to try to articulate a truth is because if, if we were dealing with people who are fully cognitively functioning, that would be a natural thing. Like, you have a conversation so that you can then both get on the same page. And what I'm realizing is I'm not gonna get on the same page with him, so I'm gonna have to figure out how to make sure that the cares are taken care of without his buy-in or acknowledgement. Um, and like you said, it's not really relevant as long as the cares are getting taken care of. And the reason I, I think that this is super critical too is because think a lot of caregivers who are dealing with, um, with people who have dementia are, are running up, up against the kind of a similar situation, where the, the natural inclination is to be like, "But no, Mom," or "No, Dad, but can't you see that you're not able to do this, and you're not able to do that, and we have to take away your keys because you can't drive, and lookit, you almost got into an accident?" And all of those things, and realizing that it's really not that different from what I'm dealing with, which is that all of that is just spinning wheels, trying to get the, our loved ones to s- to see the truth. I wanna encourage that if people are dealing with adults who are moving into dementia, is maybe a better approach is just to lean into their truth and just get shit done without having to, uh, to get their buy-in. And that's really difficult when you're, when you're dealing with a parent, because a parent, like a parent with, with dementia, you're gonna... That transition time from being their child to being their parent is, is t- it's hard. it's really hard, especially when you're dealing with, with adults 00:22:35.000 --> 24:37.000 Yikes! Time to take the car keys away Michelle: So I have a really brief side quest, and that is taking keys from an elderly parent. Michelle: So I have a really brief side quest, and that is taking keys from an elderly parent. I have heard so many of my friends, because a lot of my friends have parents who are going through the same shouldn't be driving phase, um, in their lives. And I have heard almost every single person to, to a person say, "Well, they haven't gotten into an accident yet," or, "They haven't killed anybody yet." Uh, w- i- is this what we're waiting for? We're not taking the keys now because we see them driving poorly, because we're waiting for the accident to happen, and then

we'll take the keys? I don't think that's logical. I think that's, again, waiting for something that's not gonna come or something that comes that's very devastating. Kimberly: I think that what people are thinking is we're really lucky, it'll be a fender bender, nobody will be hurt, but I will then have the evidence so that I can prove to them. What I'm suggesting is don't wait for the evidence, 'cause you already know it and you're not gonna convince them. And what you're suggesting is what are we risking Michelle: the evidence won't change offender... No. Offender-better evidence is not gonna change their mind about giving up their keys. They're gonna say it was the other person's fault, or it was the rain or something. So the waiting for the evidence, hoping that it's little bit of evidence, that's not gonna change their mind anyway. This is dangerous. It's risky Kimberly: It is. One of the things we just have to face is that sometimes we just have to do the hard thing. And sometimes we just have to take those keys away and let our parent be mad at us, and understand that they're not mad at us as much as they are mad at the situation that has caused them to, to, to not be able to function the way that they're used to. They're taking it out on us perhaps, um, I think if there's anything to take away today, I, I just wanna encourage to people to just, to be willing to be, to take that hit for the sake of your loved one. And then figure out how to take care of yourself as well 00:24:37.000 --> 29:06.000 New approach, refreshed relationship Michelle: So after the process you've been going through the past year or so with your oldest son, where do you stand now with your willingness to step in? H- H- How are you interacting with him right now? Kimberly: So my interactions with him right now are actually really quite, quite good for the most part. Um, early on I was still trying to con- like tease out, like what are you capable of and what aren't, what aren't you capable of? Now I've got a really good handle, I think, on what he can do and what he can't do, and what he thinks he can do and what he thinks he can't do. so now my approach is to continue to make those reminder phone calls, "Hey, did you ... You know, do, don't ... Remember, remember that you've got an appointment today," and, and not judge if he doesn't remember. Or not judge or don't get an attitude if he thinks he's going to one place when it- he should be going to another. And just to o- to offer those reminders. And also, I am paying bills, and I'm doing insurance things, and I'm doing Social Security disability applications, and I'm hiring a Social Security disability lawyer. I'm also padding my with other help because it's something that you just can't do all by yourself. In addition, I sit down now and have lunch with him, which we try to do once or twice a week, I, I do give him the business-y things. Like, "Oh, by the way, I've, you know, did this application or talked to these people," just so that he's aware. And then I just stop and I, like, go back to the kinds of conversations that we used to have before, which was like telling him about my day, telling him about an article that I read. A- You know, I don't pepper him with questions 'cause that's not his style. He doesn't like being interrogated. way that he's always communicated with me is that I talk at him for like 20 minutes, and then I shut up, and then he starts kind of giving me little bits of himself. And so now that's what I'm doing. After the initial like business blah, blah, blah, then I just move very gently back into, "I just wanna have a, a relationship with you. I just wanna have conversation. I wanna learn about your life." And I really do try to listen more. Early on in this year, I spent so much time trying to tell him what was going on, trying to come at him with all of the list of all of the things and keep him appraised. And, um, it's just, it, it, it was overwhelming for me, and I, I'm sure it was overwhelming for him Michelle: He probably really appreciates having that close relationship back where he can just talk to you when he's ready about stuff Kimberly: Yeah. I think he really does. I think he really does. So it's been a, it's been a challenging year. Um, but I'm really quite happy with where I am right now. also thank you for being somebody who I've been able to bounce ideas off of, and you've given me some other tools and avenues that have helped me to see that earlier approach isn't gonna be effective or useful, um, or pleasant. And that coming at all of these things with a different perspective has actually been really, really helpful Michelle: feel like you needed to try all of those things first just to see, because I, I'm not there. I don't, I don't talk to my nephew that often. So I, I don't know. I'm just giving a, a, a reflection of what you tell me Kimberly: Well, and what's also been nice about being able to reflect that off of you is there have been so many times when I, like, I go to bed and I think, "Am I the crazy one?" Like, like, what... Because it took me such a long time to figure out that his truth is that he is fully capable. And it's not denial, and it's not that he's trying to just appease me or tell me what he thinks I wanna hear. I- he really truly believes he's capable of things that I don't think he's capable of. And so, uh, so a lot of times I would really think, like, am, am I overreacting? 00:29:06.000 --> 31:17.000 Dad only sees through rose thorn colored glasses Kimberly: like, is this... And okay Girl, seat belts. Put on your seatbelt 'cause we're, we're going in. He lives with his dad, Michelle: was about to go down the road of dad. So please go down the road of dad Kimberly: So he lives with his dad, and his dad doesn't see it. And so his... I have a, on a few occasions called his dad. We're no longer together. And I've said, "Hey, what are you observing? Like, what are you seeing? What's going

on with him?" And his dad does the exact same thing that he does, which is paint the rosiest picture. Like, "No, everything's great. Everything's fine. Yeah, I mean, yeah, okay, I know it... Yeah. He, he was... yeah, he just, he's not feeling really g- really good." And then I'll go over there, and he's, like, literally on death's door. I had to take him to the emergency room because he was going to die from a, a reaction to, um, a, f- related to his diabetes. Dad didn't see it. Dad can't, can't see it. And so also contributed to me going to bed at night going, "Am I overreacting? Am I crazy?" 'Cause I would say sometimes like, "Well, here's what I'm thinking about doing to support him, to support our son." Dad would be like, "Oh, no, that's just too... Ah, that's... You're o- you're overreacting. It's not that bad. It's not that bad." And then I go see it with my eyes and I'm like, "Holy shit, like, this kid's gonna die soon." Like within, uh, I think he would've died within 24 hours had I not taken him. So yeah, that's, that's another challenge is just dealing with other family members who are not supportive of cares that, that, that my loved one really does need. Michelle: With all due respect, ADR, if you're questioning whether your son's father is accurate or whether my reflection of you is accurate, y- you don't, you don't probably really need to ask that question. I mean, yeah, do it and, you know, ask the question because it's important to, to, to question our, our view. But no, you are seeing this accurately. 00:31:17.000 --> 34:01.000 Surviving is not thriving Michelle: So I was gonna go down the dad road a little bit. And again, with ADR, all due respect, I wonder, I, I ... This is a half-baked idea, so please bear with me. I wonder if your son's dad was raised in such a way that you don't really live life, you just go through day by day. He's had the same job since he got out of college. He just goes to work. He doesn't really enjoy it, as far as I know. This is just liv- Like, you just live your life, right? You don't drink in life, and you don't thrive, and you don't improve and grow and look at all the beautiful things in this world that we can partake in, the good and the bad. And I wonder if your son living with his father is also in that sort of mindset of this is just life. This is whatever life throws at you is what you have to deal with, right? So you're just getting through the day, g- waking up in the morning, maybe getting out of bed, maybe going back to bed at night and being able to pay your bills. That's all you have to, to strive for. And maybe he's missing this, this drinking in life and this, this beauty of growing and thriving and experimenting and forming relationships with new kinds of people and experiencing new kinds of activities. I wonder if he doesn't really have that expectation because he's seen his father never really do those types of things. And so for him, he's gotta deal with th- these diseases that he

has, and so he's able to get up and sometimes get out of bed, and then he goes to bed at night. And maybe he thinks that's all he gets, and his life could be so much richer Kimberly: I think you're spot on. I wonder how much of that message I can actually convince him of because it's along the same lines of I'm trying to t- I'm trying to convince him of what he's capable of. At the same time, I'm also trying to convince him that there's more to life than surviving. it's been a challenge. It's been a struggle for ex- I think for exactly the same reason, because he just thinks this is all there is, and that life is gonna shit on him. So what's the point in getting your hopes up, and what's the point in, trying to strive for a better life when it's always gonna shit on you at the Michelle: Oh, Kimberly: And, uh, Michelle: uh, uh Kimberly: it's, it's, I can't get that message to him Michelle: Th- that strikes me so deeply because he's absolutely right. Life is always gonna shit on you. It just is. And he's got his more than fair share of, of life shitting on him. He has. And he's withstood it, and he's survived it, and that's amazing. And it's not the only way, and you can be shit on and continue to have a life. Not just survive, but have a life. And I, that, so I, I'm, I'm hopeful for him, one, 'cause I know him and he's an amazing human being, and two, because you raised him until he was out of the house at 18. You were there in his house. So it's not like his father was the only influence on him 00:34:01.000 --> 36:10.000 Sharing joy in the little things Kimberly: and we talk about this all the time, that sometimes the best life lessons that we can offer our children aren't... is not the things that we say to them, but the life that we live. so I tr- have tried for years and years and years to live my life drinking in life, as you say. Living life to the fullest, you know, taking, um, not, not to say that I'm like, "Go, go, go a thousand, at a thousand percent speed," like, all the time, but just that I, I'm taking opportunities as they arise, and I'm enjoying moments when the moments happen. And as we have conversations, like we sit down at lunchtime, I'll say things like, "Man, there was a time when I would, I could not have imagined that I could be sitting at an outdoor patio having lunch with somebody that I love in the middle of the day of the middle of the week, like, on a Tuesday. Like, this is great. Like, I'm loving this." And I really truly do love that. And so I'm trying to kind of point those things out to him, um, that, that that's how I see life, and I'm really hoping that some of that does rub off on Michelle: So he also was able to sit on a sunny patio on a Tuesday in the middle of the day with someone he loves Kimberly: That's what i'm saying. I'm trying to point out like this is th- in this very moment, things are good for you. Tomorrow might suck, yesterday sucked, right now in this moment, things are okay. Like you're, you're... You can just like look the blue sky and then take the sunshine on your face and be like, take a breath. Michelle: And focus on those things rather than the, the difficulties. I mean, both have to be addressed, of course. But I think you're right. I think a lot of people miss those, those moments of joy Kimberly: Especially caregivers when we're in the, the thick of caregiving, I think we sometimes forget to just stop and recognize, like there are some really good, there are some really good moments. Like I love sitting out on the patio in the middle of the day in the middle of the week and having Michelle: So you're demonstrating to him what life could be for him 00:36:10.000 --> 38:07.000 Caregiving from a distance Kimberly: tell me a little bit about the challenges that you've had being a caregiver but having to do it from so far away. It's also gotta be really challenging 'cause you can't, like, sit and do a face-to-face and check in with, you know, with the person you're caregiving for. So how, how is that for you? Michelle: How's that seatbelt? Kimberly: You know what, girl? Do it. Spill it Michelle: I really wish I could do more for my parents. I really wish I could do more. I wish I could check in with my dad daily or weekly, and I don't do that. And I feel like there's not a lot that he needs from me, and then I think there's probably a lot that he needs from me. And we're, we're administering their insurance and their trusts and their power of attorney and their healthcare and all those kinds of things. And I do that when I can, but I'm also a full-time mom with a, a business that I'm running, and I, we're podcasters, and that takes some time. And all of those things I love doing, and I would not want to give any of those up. And yet my day becomes so short then. And I feel like there are so many things on my task list for our parents. In fact, I've got a, I've got a list of all my activities that I do, right? I've got all these things, and one of them is senior Chernocks. It's one of my, one of my main projects in life, and that never comes to the top as often as it needs to. And so for me, it's just, I wouldn't say that it's guilt. I would just say that it's, um ... I'm often punishing myself because there are things that I need to do for my parents today that I'm not doing. And I don't know whether it's procrastination or I feel like they're fine. And Mom, Mom's certainly fine. Dad seems like he's fine in his new place. He's getting lots of care. But I'm not there, and I don't see it every day, and I feel like sometimes I'm, um, I don't want to go as far as saying dismissive, but I, that green bar doesn't come to the, to the top as often as it should, and that makes me feel like a terrible daughter sometimes 00:38:07.000 --> 41:33.000 Don't fall into the try harder trap Kimberly: So just like reflecting and thinking out loud, I'm feeling oogy because I think I'm doing too much and you're feeling oogy 'cause you think you're

doing not enough. And I think that maybe there's a lesson in there that there is no right answer for this. There is no amount of too much or not enough. There's only what we are what we're capable of doing, and I, and I really do truly believe that if you, if that green isn't coming to the top very often, it's because you are currently lacking the capacity to have the green be at the top, and that's okay. Michelle: So you've known me for over half a century, uh, give or take. I am not built for there's no right answer. I'm not... Kimberly: Oh! Michelle: uncomfortable for me, and I'm unwilling to say that we're, uh, right now I'm feeling oogie, as you say, about not doing enough for our parents, and I want to change that. So for me to accept, oh, that's just where it is and I'm gonna be fine with that, I don't wanna g- I don't wanna go there right now. I wanna do more. I wanna d- I, I wanna do the same amount with, with more urgency. I should put it that way Kimberly: Okay, and I won't put- I won't push back against that. I will, however, challenge that this is not that different from the conversation that we had about try harder. Like, if, if the system that you're doing right now is not working, then just, like, trying to, "God, I'm gonna buckle down and then I'm gonna do it better next time," is, is gonna just make you keep beating your head against a wall. I, I think the only kinda way out of that sort of beating up on yourself is to just look at it differently and, and recognize that you're doing plenty. doing more than, more than a lot of elderly folks have people to do for them Michelle: Okay. We'll, we'll put that out into the universe. It's a li- a little bit like, uh, the microcosm of my own children. One of them is out of the house, and the other one's in the house, and he doesn't drive. He's 12. So I drive him to his activities, like, five times a week, sometimes more than that. And I arrange his appointments. He's just got braces and stuff. So I'm with him every single day doing something, right? Teaching him how to do the laundry, teaching him how to do the dishes, teaching him how to make his lunch. I'm, like, hands-on parenting on that little kid, c- he's not even little, because he's here, right? My daughter, I don't do anything for her, really. I mean, I send her some money, and I go to the grocery store with her, and I call her, and I text her, and I send pictures of the puppies 'cause she misses them. And we went to the Pr- Pride parade yesterday, and we hung out together and had lunch. So I do stuff like that for her. But it's, she's so far away that I don't, I don't do stuff every single day for her. And it's the same kind of thing. Being a, a, a distant caregiver, it doesn't feel like I'm doing a whole lot. And I feel like our parents probably, their needs are gonna go up, not down, as opposed to my daughter, whose needs are gonna go down, not up Kimberly: And as their needs go up, do you think that your, your time commitment will go up Michelle: That's what I want. But again, you're right. Try harder. Try harder to do something you're not doing right now Kimberly: But right now you're not doing because they don't need. What I'm suggesting is that as those needs do grow, then both of our commitments to, to the time and effort are gonna grow alongside them. 00:41:33.000 --> 46:10.000 Setting aging dad up to thrive Kimberly: I think for me with Dad, one of the challenges that I have is that he is so independent, he's living in an assisted community questioning why he's there because he doesn't have any needs. And so two things. One is he is doing fine. He's got friends. He, like within five seconds of being a resident there, got himself like elected as the head of the, of the ... What is Michelle: The residence committee Kimberly: the residents' committee. Yeah. So he kinda just doesn't need that from us. second thing is part of it is that we've set him up to succeed this way. So a year ago we were a lot more worried because he was living in a house by himself, and we were starting to see that it was not gonna be sustainable. So what did we do? We worked our asses off. You especially did a lot of the phone calling and the, the logistics and the financial, and we got him set into a place where we can back off a little bit because he has this s- such a, uh, additional help, and eyes on, and friends, and social, like, and all of the things that he wasn't getting. So part of the reason I think it's okay to step back a little bit is because we've set him up a situation that he loves and is working for him and doesn't require quite as much of us Michelle: I think that's a really good point. And I, I, I'd like to share a little bit more about our experience with Dad because he was living alone. Our mom moved into a facility near you, which is thousands of miles away, and he was living alone, and I don't think that was really good for him. He's such a social person that he needs pe- he needs people around him all the time, which is perfect for a, a, a assisted living community that he's in right now. And we, we cahooted, we convened, we chatted, we ChatGPT'd how are we gonna get our father to agree to go to, uh, an assisted living place, because he is independent. And really what we wanted him there for was the social part of it and just to make sure that if something goes wrong, he has someone in his vicinity who can help him. And so we came up with all of these elaborate plans, and I set up a tour for him. I think we set up a tour for him, FaceTime. The minute he walked into that place and h- saw how gorgeous it was and how, how airy and free and how bougie it looks, he's like, "Okay, this sounds good for me." So we were completely prepared for a battle that never transpired. So maybe that's what I'm doing right now is thinking, "Okay, well look at all these things I could be doing for him," but maybe they don't need that right now. Maybe that's the, the point

you're trying to make to me Kimberly: That's exactly the point I'm trying to make. We set him up to succeed with the needs that he has now in a way that w- we, that neither one of us has to be as hands-on because he's got people who are there daily. We set him up to succeed, and right now he's thriving Michelle: He really is thriving Kimberly: And all of the other stuff, honest- honestly, Mo, just all, it's just all money. Michelle: I've, I've learned in my old age that worrying about money is the biggest waste of time. Go get the money and then spend it. You know, it's just what it is. That's a whole different conversation, but yeah, that's... Worrying about their happiness, their social, all of those things are important, but the money, it'll work itself out Kimberly: And it's not to dis- dismiss situations where people really are struggling for money. I'm not, we're not talking about that. What I'm saying is that we were facing having to make a decision about their life or their death, or facing a decision about how are we gonna pay for this thing, the, the pay for this thing is just a money conversation. Like, I'd much rather be ... that's the worst thing that we're dealing with right now, and we're not having to make a decision about whether they live or die, then I think I'm, I think we're good Michelle: And when I say don't worry about money, I'm saying worrying about money is a waste of time. I'm talking about the 3:00 in the morning when you wake up and think, "Oh crap, how am I gonna pay that bill?" You can't do anything about it at 3:00 in the morning. Get up at 8:00, have your coffee, have your water, have your walk, and then go get that money, right? And I'm not saying it's just that easy, but worrying about it can oftentimes make people spiral. That, that's all I meant. Kimberly: Yeah, and maybe that's what part of what you're doing with not keeping that green card up at the top is that you're waking up at 4:00 in the morning and thinking to yourself, "Oh my God, the green heart card isn't at the top. Has it been at the top for like eight whole days or something. It's not like we've, you know, you've neglected him for months and months, right? Like, that's, uh, you just, he doesn't need that 00:46:10.000 --> 49:33.000 Setting aging mom up to thrive Michelle: So our mother, who is also amazes me every, every time I talk to her, she's living very close to you, and she is also getting the care that she needs, largely from you. So I think it's a different situation because she's very good at articulating what she needs from you, Kimberly: So when we're talking about Mom's cares, 'cause that's the third person that I, that I'm caregiver for, Every time I take her to an appointment or do business online for her or, you know, take care of bills or whatever, I have this voice in the back of my head from two of my closest friends who have both lost their moms fairly recently. And both of them, they say, would, I would give anything to have

one more time to be, complain about having to take them to an appointment. When I'm taking mom to appointments, I don't come to those appointments with the perspective of like, oh my God, I have to do another thing. come at it from a perspective of, I still get this time with my mom. And didn't have time with my mom until two years ago. I have not lived in the same state as my mom 1993. So having her, like, literally two and a half miles from me is all by itself, I'd never thought I would have it that. I never thought that I would have that. So I'm coming at it from a slightly different perspective, I think, than some, some caregivers because it really is to me, like, I get to have a relationship with this woman that I never thought I was gonna get to have. And we are building that relationship through the time that we're spending sitting in the waiting rooms and and then going and having lunch afterwards. So, yeah. I- are there times when it just feels like, I got another appointment"? Yeah, of course. Of course. There's times like that, like, but I feel that way about everything that's on my calendar from time to time. And like I just said with Dad, we, we also set her up to be in a place where she has eyes on her, and she's got assistance, and she's got friends, like, a whole tribe of friends. Like, she hasn't had a tribe in a really long time, if, if... Not like this. She's never had a tribe like, like Michelle: Yeah, I'm extremely happy for her Kimberly: we s- we... Yeah. So I feel like a lot of the work we had to do upfront to kinda get them both settled, that now I think it's probably okay to be just like, "Okay, I'm just gonna let, I'm gonna let that ride for a little bit, and we'll deal with the crises as they occur." Michelle: So I feel like I'm a caregiver to you, and that is by far the easiest gig ever. Ever. So you're caring for our mom physically, emotionally, you take her places. And then I talk to you about it, and I love that Kimberly: I'm so grateful. As a caregiver, it can be really easy to feel like no one's caring for me. Um, and then I call you. Michelle: So I don't really do anything, I just care about you 00:49:33.000 --> 52:58.000 Build your caregiver support systems Kimberly: So let's talk about the, the, the, what do we do as caregivers to care for ourselves? I'm really, really lucky, 'cause I do have you in my life, and you're also the child of one of the people that I care for. So you, you like... I don't have to bring you up to speed. like, 'cause like we're kind of both in the, in... You know, we've got the same history or a similar history. so I think of the most important things that I did as a caregiver to take care of myself was just build a, a... surround myself with the people that are supportive me and of the efforts that I'm doing as a caregiver. So you, for so many things, but most specifically emotional support. Um, but I've also got additional like PCA helps for some of my, for some of my kiddos, and I've got a lawyer on, and I've got a... Like, they all have teams of doctors, I'm... And, and school people, you know, helping with my, my youngest. And so I'm leaning into all of that. Like, as I'm, I'm, I'm allowing myself to get, to accept as much help as is being offered to me Michelle: That's huge. That's huge. And I, and I see a difference. I mean, you're, you're 100% full-time taking care of your son, your youngest son, because you're his mom. So any help you can get with him is just part-time away from him. So I, I love that he's got a PCA, his, uh, his teacher, his old teacher. I love that he has a big sister. I love that he has a big brother who doesn't help care for him, but certainly helps with the loving him, and playing with him, and making him happy, and make him laugh, and all that. I love that What else do you do to care for yourself? Kimberly: I have my calendar set so that I try very hard to schedule appointments for people, including myself, um, in the mornings from, like, 8:00 to 11:00 because 8:00 to 11:00 is, like, me time. So I usually, during the school year, I get my kid on the bus around 8:00, 8:15, then I go for a long walk. I listen to my audiobooks, or I listen to music, or I listen to a podcast. And then I come home, shower, get myself ready for the day, sit down, have a meal do my, like, Duolingo you know, all, all of the things. Like, that's my me time, and then I schedule things for 11 o'clock or later. it doesn't always work that way, but having scheduled that time for myself has actually been really, really, like, l- like, l- like life-saving for me because, because I know that even if I had to schedule an appointment on a Tuesday, still have the rest of the week where I do have some me time built in. And it would be so easy to fill up all that time with other appointments and things and tasks and things I have to do. Um, and I just don't because I don't know what I would do if I didn't have a little bit of me time Michelle: I think it's important because you're making yourself a better caregiver for other people because you're caring for yourself Kimberly: one of the most important things that I do is build in time for myself and I stick to that. I s- I, I do my very best not to schedule things over myself