Managing Special Needs Nursing Care Like a Boss with Carrie Holt & Kacie Craig, Part 2 of 2

Do you ever feel unprepared to manage nursing care at home? Picture yourself juggling conflict, setting clear communication, and ensuring your child's safety without losing your peace of mind. Well, you're not alone. Join us as we dive deep into the world of home nursing care with our guests, the remarkable Carrie Holt and Casey Craig. This episode is a treasure trove of insights as we explore Carrie's unique approach to home nursing care, the crucial role of sleep, and the many creative solutions families implement for their child's safety.

Managing in-home care relationships isn't always a walk in the park. How do you establish boundaries? When should you trust your instinct? Tune in as Carrie and Casey share their personal experiences of collaborating with nurses and nannies, throwing light on the significance of a formal on-boarding process. They explain the potential benefits of utilizing contracts in complex relationships and how to steer the ship of home nursing care with grace and grit.

Finally, let us not overlook the challenges of caregiving, especially when it comes to picking caregivers for special needs children. Carrie and Casey take us on their journey, sharing their encounters with nursing agencies, church communities and their innovative strategies to finding help. They emphasize the importance of accepting help and the blessings that it brings. What role could prayer play in finding quality care? How can self-care be prioritized amidst the whirlwind of responsibilities? All of these questions and more are answered in this enlightening discussion. Don't miss out on this dose of inspiration and practicality!

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Transcript

Speaker 1: 1:54

Hi, I'm Cara, life coach, wife and mom to four incredible and unique children. It wasn't all that long ago that my son received a diagnosis that had my world come crashing down. I lacked the ability to see past the circumstances, which felt impossible, and the dreams I once had for my life and family felt destroyed. This forward has many years of surviving and not at all thriving, and you'll see a mom who trusts that she can handle anything that comes her way and has access to the power and confidence that once felt so lacking. I created this special needs mom podcast to create connection and community with moms who find themselves going trapped and with no one who really understands. My intention is to spark the flare of possibility in your own life and rekindle your ability to dream. This isn't a podcast about your special needs child. This is a podcast about you. If you are a mom who feels anxious, alone or stuck, then you are in the right place. Welcome, hello and welcome to the special needs mom podcast.

Speaker 1: 3:06

Today we're having part two of the conversation that we started last week. Our guests today are going to be Carrie Holt and Casey Craig. They had not known each other prior to today, so it's kind of fun to get to know each other live. Last week's episode really focused a little bit more on some of the more emotional experiences, the journey to kind of getting where they are now. This week again is going to focus a little bit more on that managerial kind of stuff. My guess is that even after you finish this episode, you're going to still be left with a lot of wants in terms of how to support yourself through all the challenges of nursing care. By all means, let this be a prompting for you to lean into some of the areas that are really uncomfortable for you and really ask yourself the question how can this go differently? What do I want? Instead, let's get into the second part of this conversation. Thanks for joining us here. We are continuing the nursing care conversation. I don't know what we'll name this podcast episode yet, but if you haven't listened to last week's episode, you can go back and kind of listen to part one.

Speaker 1: 4:15

Carrie, I actually want to start with something you mentioned previously, and it was this piece about challenges in the relationship between your son and the nursing care and the struggle that you shared of you questioning how you've parented as a result of what's happening with the nursing relationship. I guess I just wanted to put in that I think this is one of the hardest parts of special needs parenting, because when you're parenting somebody with a disability, you never know whether it's their disability or whether it's a behavioral issue like any other child would have. That needs to be quote unquote parented. I think this is the thing my husband and I are struggling with the most right now, because my son's 14 and he wants independence, and yet you don't generally give independence to somebody who's not capable of responsibly having it. So I just wanted to put that in there because it's very much in my mind and we'll turn from that to kind of go into.

Speaker 1: 5:14

What I mentioned at the end of last week is looking at a little bit more of like what you have used to help you as leaders of the nursing care in your home. My guess is that both of you are the primary manager of this in your home, as opposed to your husband. Is that correct? Yes, okay. So let's look a little bit at and Kerry, you mentioned this, I think it's a really, really great topic is to how do you deal with conflict? So something happens that's not to your liking, or maybe even like a major deal. How do you go about that in terms of kind of being a manager in your own home? And, kerry, I'll start with you.

Speaker 2: 5:51

So I think it definitely depends on the situation, and this is where I think, from the very beginning, you need to have a set of house rules or boundaries and guidelines that are clearly communicated to the people who are in your home. I think we switched nursing agencies when my son was about two years old and it was actually through the agency that I got this, like carbon copy paper Like this is dating me just slightly where it had questions.

Speaker 2: 6:22

You know, where does the nurse park, where does the nurse put her lunch, that kind of stuff and what I did was I adapted that questionnaire to my own and made this spreadsheet. It's just a very janky spreadsheet, but just, you know, this is what our expectation is about your interaction with our other children. This is this expectation, or whatever, and so the other thing that I have recently started doing is I have a letter that I have written to our home care nurses when they come in our home, because what's interesting now is that they don't know anyone who comes in new now does not know the history and where we've been and the experience that I have, not only as a mom, but essentially I have an ICU nursing degree with my son. We have had seizures, we have had bowel obstructions, we have called the ambulance, I have done wound care, coughing, bowel programs, suctioning you know you name it port care, like I have done a lot of this, and so I think sometimes, when they come in, there's these preconceived ideas of what this child is going to look like, and I think it's just really important that you have clear communication.

Speaker 2: 7:34

And then, going back to the navigating conflict, so if it's something that is obviously a major nursing error where your child has been put in danger. You've got to contact the supervisor, the nursing board. You need to protect your child. Okay, we have always had like a baby monitor for at night. You know, the nurse sits in a different room. She has the monitor, she's watching, because my kid getting sleep has always been the number one priority in all of this, outside of him being safe. Number two is him getting sleep too, not just me but him. But I know families that have cameras in their house because, like, they work full time outside the home and I I've been home, so we haven't had to need, we haven't needed that, but just that thing. And then also, it's honestly just being brave enough to go to that person and say, hey, like this really hurt my feelings, or in our home, this is not the way we do that. This is not the way I would prefer that you interact with siblings. I have used our nurse Supervisor, who comes out and does the research every 60 days, and I've used her as a buffer. Thankfully, she and I get along really well. I've known her for a long time and that has helped too. Yeah, so that's just pieces of it, but don't be afraid to get a supervisor involved.

Speaker 2: 8:50

I've got a quick story. So when we were when Toby was really little, my husband and I was our first trip that we left town. I think there was like this really cheap airline in Columbus, the tickets for like 30 bucks and we're like, okay, we're gonna go to Florida for a couple days. Grandma was here, we had nursing coverage and during that time our power went out and we did not have all of the backup things for the pot. We had a generator but we the get there wasn't gas in the garage. We didn't have any emergency plans set in place like Dumb on our part. But you know, like you just don't think things are gonna go wrong. There were hurricane force winds in September and our power was out and during that time one of our nurses had no idea how to. When you have a child on a ventilator, you have to. If there's no power to the heater to humidify and heat the air going into their lungs, you have to switch them off of that and she didn't know how to do that.

Speaker 2: 9:41

I got home, toby start getting sick because of some lack of care up on their part and and at the same time, this nurse is telling my mom I'm studying to be a realtor because I don't want to be a nurse anymore. Like probably between Casey and I. We can write a book of stories that no one would ever believe. People have said or things have happened no one would believe. We have to laugh about it, right, or we'll cry.

Speaker 2: 10:04

And I had to call the supervisor and say this is what this nurse is saying. She actually came out that night. She came out, our power went out again and I had to get up and do everything because this nurse didn't know how to handle it and I thought for sure, the next day this Supervisor was gonna call me and say she's fine. And she said oh, we're getting at her out of there as quick as we can. This is a huge liability. So it's similar to navigating hospital stays and working with therapists. You have to learn how to advocate With kindness, but you know sticking up for yourself and also I cannot stress enough trusting your instincts. Oh yeah.

Speaker 1: 10:44

Yeah, oh my gosh, yeah. What would you share in this area, casey?

Speaker 3: 10:48

You know, trusting your gut is number one. You know, I have had situations where I, you know, judged a book by its cover and had a nurse come out and essentially very petite, you know, in her later years of nursing, and I thought how Is she going to be able to pick up Stella? And she picked her up and I said, you know, do you feel, you know, comfortable? And she's like yeah, I'm like okay, but she seemed like a really nice person. So I thought let's try this out and she has turned into my absolute unicorn, like she is a OT, I swear, she's like an OT, pt, special ed teacher. She loves her like she's her own grandchild and it has been just a wonderful, wonderful fit.

Speaker 3: 11:34

But I also had and I don't, I had to learn this the hard way because we had a nurse that Essentially had a lot going on and I think in her personal life that reflected at my home and I Allowed her to gaslight me, I allowed her to essentially treat me with no, you know, not much respect and I Cringed almost every time towards the end of her coming. And I really had to learn the hard way of like, okay, I've got to set these boundaries and and they're no longer in our house.

Speaker 3: 12:09

But you know, I think that it just really it made me reflect on I I had that gut feeling. You know, probably a year before it got really bad I should have gone to one of the nursing supervisors, I should have had a conversation, but it was kind of a toxic relationship, to be honest. But I think it kind of depends too on the relationship and who it is, you know. So, for example, I don't have a letter or a spreadsheet and now I'm like writing down, like need letter, needs spreadsheet, because I kind of send them to you right, okay, perfect, yes, because I kind of do it in a more informal way.

Speaker 3: 12:47

You know, you know we talk about especially with overnight, Like I don't care if you watch TV, read a book, work on homework, you know, but no sleeping, and if Stella's awake you better be with Stella, like because, again, safety number one, but sleep is a hundred percent, maybe like 1.5, and so, yeah, having that conversation, so we have conversations, but I don't actually like have it written down. So I like that of having kind of like do to do to do. So, yeah, I think that trusting your gut and I also are number one priority, which Sometimes it's the technical stuff, but ours is that do you have the heart for this? Like are you going to love on Stella like you would your own child, because that's our number one Like I want her, out of everything, to feel Unconditional love and for who she is and where she's at in her life at that moment in time. And so if you have the heart for it, I can teach you all the other stuff.

Speaker 3: 13:46

I mean, if I can teach my husband how to calf and do all those things, like I can teach the other stuff, and especially if I'm around for a while. So I don't know about you too, and we might get into the conversations about like when do you let them be by themselves? And you know, I kind of ease into that where others may bring someone in that's like fully Confident on the technical side, to where they can just get them going right away. But I usually have to do a lot of on-boarding and Maybe I just leave for the post office for 15 minutes and that's our first outing and then, you know, later I might leave for lunch or something like that. So it takes a while to break them in and figure out their style too, and that makes so much sense.

Speaker 1: 14:30

I obviously don't have nursing experience, but I have a lot of experience. Well, one we had a nanny, right, so that's in home care. She's also the editor of this podcast who was our primary and longest nanny. We had several, but she was by all means, our favorite. But one thing I think that can be really helpful is to really wear that hat of manager, and one of the things that I did because actually I had experiences where I needed to give someone feedback and it was like this is really uncomfortable, right, Because it's in your home. It's uncomfortable to give anybody some critical feedback, but when it's in your home, I think it's particularly uncomfortable.

Speaker 1: 15:09

And so I took that learning and set up some structures for the next relationship and what I did was like, you know, I really did a formal like hiring and again, this is totally private, so it's different. But yeah, you could still employ some of the same things where I actually had the person who was applying create a recipe, Because I was like I totally get that. I'm asking you, you know, I know you're on carecom, I see all the information, but I want you to go to that extra step, that you really want to work here in my home and you're willing to take that 1% extra step or a lot more than 1%. The other thing I did is I set up really clear guidelines of structures for feedback both ways. So when I hired, I said I don't remember the time frequency, but it was like, Okay, in 30 days we're going to have a review and that's where I can give you feedback. And, of course, I can get feedback and I don't remember. I know we did a year review as well and it's just great because it sets the foundation of oh, we're going to have a conversation here and there's going to be a space for us to hear what's working for you. But, more importantly for me, there's going to be a space for me to give any feedback that I feel is important and you don't have to wait till that time period. But it's nice having that one ability for yourself to give some feedback, but also a designated space, because I think that's an expected thing as an employee is to have have some feedback.

Speaker 1: 16:22

And then I had an idea when you guys were talking. So whether it's a letter or whether I describe it like an in home care manual or even a onboarding manual is to check with our friend, chat GDP, because she has helped me. I chose to write a contract. We were giving my son a car to use and it was like I'm not just handing over the keys, like here you go, like there's some parameters here and I want to make sure this relationship is well understood. So I turned to chat GDP. Oh my gosh, the contract that she came up with was incredible and I just made a couple tweaks and it was like way better than I could ever have come up with. So I think that might be something where Carrie, you obviously didn't have that 17 years ago and yours is probably amazing I think it's something that anybody can access. It's free and you know again, it kind of just gets you started. It gets that brain going in terms of kind of being that manager of the space of your home.

Speaker 1: 17:19

I want to go back to Casey. What you were sharing about this relationship that you had that wasn't working and you knew it. And my guess is that you had this tension of, well, it's better than nothing, and if I fire them or just continue having them in a home, then what? And so it makes so much sense why you kept them, and I guess I just wanted to once speak to that, like it makes so much sense, and also address the thing that everyone's probably shouting that but what if you can't find the care Right? We can manage them, Like I can do that part, but I can't even find them. So I know each of you have struggled with this and overcome it in various ways and we won't spend a lot of time here. But I do want to just glean from your wisdom as to how you approach that mentally to kind of not feel like, oh my gosh, we're doomed, and how you move past the struggle, like how you go find care when you need it and when it's hard to find it.

Speaker 3: 18:18

Because we have self directed hours in addition to nursing hours With those particular people in the state of Missouri. I can hire essentially people that are just gone through like a CPR training and medical administration course and a first aid course, and so those people I reach out to local colleges a lot and get nursing students and so my husband and I joke that we aim for like the early to mid 20 year olds that are in school, that they're like a uterus is are about to explode because they want to have a baby and they're not in a position to have a baby. So you can just come love on mine Like this perfect fit of they're in school. This is like especially overnight, they can study and things when Stella's sleeping, but then they can cuddle her and hold her and play with her when she's awake or, you know, when I want her to go back to sleep. So yeah, we found nursing students are great fits.

Speaker 3: 19:16

We've also found like OT or PT students, special ed or teachers, even like and ours, you can actually hire outside family members like we can't get paid but we can. You know my mother in law or brother, sister, you know things like that you can hire as well. So we've had a lot of luck with that. You know, nursing it's gosh, it's just touch and go as far as like who they have available for what days, what hours, you know all of those things. But one thing that I have found is that even when I'm, you know, recruiting for nursing hours or self directed, I do a little ad on Facebook or socials and it has a really cute picture of Stella and then I write it as if it was Stella. Hi, my name is Stella, I'm an eight year old little girl, blah, blah, blah, and so I do this whole thing of from Stella's perspective. I think that just kind of sucks people in a little bit whenever they see her as more of like, you know, a little girl, a child, and not a, you know, patient.

Speaker 1: 20:20

I love that. Actually to humanize. Hey, you get to actually have this impact in somebody's life. How cool is that? Like selling the job beyond, just you know, learning opportunity, and what about you carry.

Speaker 2: 20:32

So I was thinking back to the early days and we were kind of in between nursing agencies and honestly, it was really hard because at that time in my son's medical diagnosis I could not drive in the car with him by myself because if his ventilator came off he could die. I mean, it was just that simple. He was so medically fragile so it's not like I could just pile him in the car and run my son to preschool. So it was a lot of letting go of. Okay, we need help, we need outside help and we have some family where we live, but not a lot. We have a little bit, and so it was relying on our church community to help my kids get to where they were going to go, making connections at the preschool and I think, also just not feeling guilty that you need help, because we all have times in our lives where we need help. We need more than extra help and you can sink down into this despair of everyone's going to see me coming and they're going to run because they always know that we are more needy than most families and that can be really hard. But I think we just have to. I think one of the ways that I have reframed. That is, I know how I feel when I help other people. I feel so blessed, I feel so privileged to be able, and when we don't allow people in, we're taking away that blessing, the gratitude, the compassion, everything that that does when it stretches us, when we're serving other people. And so I think we have to get over that and allow other people to serve us. And then, honestly, it is word of mouth the nursing community inside of special needs. I feel like it's this little tiny bubble of talking to other people. I have a very good friend of mine where oldest boys are the exact same age. They share almost the exact same birthday. Her son has a trig ventilator and a feeding tube. I finally just went to her and said are any of your nurses free one day a week, just one day a week? And sure enough they were. And we got a new agency on board and there were times we've had three agencies kind of involved in our case.

Speaker 2: 22:44

Sometimes you just have to get really creative. You have to ask around church communities, facebook groups, special needs communities. I feel like post COVID. It's even harder. But even reaching out, like you said, to maybe new grads coming out of college who want some experience, but maybe they want the flexibility. The crazy thing about home nursing is it's a very unique branch of nursing, like in our case where my son is now. I feel like sometimes our case is a little boring but at the same time it can also be very flexible. Maybe you have a lady who eventually wants to stay home with her kids and so she can work part time but still keep up her nursing skills and license and all that kind of stuff. So I think you just kind of have to get a little bit creative. And I know I'm a person of faith.

Speaker 2: 23:27

I prayed a lot a lot for nurses through the years and that has helped.

Speaker 1: 23:34

What's interesting is because, again, I'm an outsider in this space like this is not something I have personal experience with, but I do have experience as a former employer of finding the right people and I think there's a lot of parallels here. Usually you don't just go one place and find the perfect fit. Usually it takes some like you're suggesting out of the box thinking, creativity, some selling like Casey's, like yeah, I like sell her up, like because this is who you get to take care of. Here's the benefits of the job. It's flexible and so it makes total sense, and I think I'm guessing that as we kind of shift how we're looking at it, it feels a little bit less heavy, a little bit more hey. Hey, maybe there's some possibility there which I think is really important, because in all of this it can feel really hard, it can feel almost impossible sometimes, and so I really appreciate you bringing your experience to share what you have done and what has worked in the past.

Speaker 1: 24:26

Carrie, you have mentioned this kind of letting things go concept and I want to look at that for a bit because I know a lot of the hesitation to bring anybody in.

Speaker 1: 24:36

This is for everybody nursing care or anybody to help is and this can go for spouses is well, they don't do it like I do and fear a lot of fear. And I want to bring all the compassion in the world, because when we're working with trauma and I have it that all of us are traumatized in many different ways from this parenting experience that control is the thing that we most want and that we most don't have. So when we have the illusion of having some control over something, it's real hard to give it up. I'm picturing like prying it out of our hands, like I will not give up this thing Yet. That also makes it pretty impossible to get a uniform of support, and so I would love if you both would speak to what are the things you're willing to let go of and how did you support yourself through that discomfort in a way that felt safe enough and, of course, that you were willing to do so. Carrie, we'll start with you.

Speaker 2: 25:41

Carrie, from how I'm performing as a mom, as a caregiver, as a nurse to my son and, like you said, just that control piece. What I have found about myself, even just recently, is a lot of times when I am not checking off all the boxes or I feel like our family health is not good, I feel like it's all my responsibility that somehow I have failed. And then there's a lot of shame. Shame comes in and tells us we're not worthy, we didn't do a good job. You know your kid's behavior is driving people away and all of a sudden you know it's all this. And then I feel this check in my spirit going okay, out of those actions, out of that shame. Then I try to control everyone else around me because I'm trying to perfect all of them in the process of trying to perfect myself, to feel good about myself again, and so it's just kind of like taking that step back and realizing that we can't control this. I had a friend say to me once just like I can't take all the credit for my child's good behavior, I can't take all the blame for their bad. I think that's just such a great way to approach even nursing.

Speaker 2: 26:48

There's a lot of tension between home nursing and in home nursing because, at least in my experience, our nursing agency is largely through one of our local hospitals, so a lot of times they're trying to put the requirements from how they do nursing in the hospital in the home and those two things don't always mix Like. There's tension there because there's certain protocols through the years where it's like this is a best practice for the hospital, for instance, not spraying saline down, a trick when you need a section. Well, that has always been the best way to section my son and so it's learning to press back when it's important for the health of your child. Approach someone, get a doctor's order. I always say in nursing you have to have a doctor's order to breathe, to move.

Speaker 2: 27:35

I feel like that for nurses sometimes. Or I've also learned once a nurse has been vetted, if I've got a really good home nurse who's been here a couple more than six months and she knows the routine, she's the one training the new person coming in and I'm releasing that to her I might step in, give a couple of tips, things like that. But I'm learning that I am going to wear myself out if all the responsibility is on me and I have to have my hand in every single fire related to our home, and I think that's where you have to figure out what do you value? What are your boundaries?

Speaker 1: 28:11

Yeah Well, thanks for sharing the tangible example of, like what you have let go of. Is there anything else that you can think of at any point that you let go of? That surprised either you or made surprise anybody else that you were willing to kind of let something go along the road of nursing care.

Speaker 2: 28:29

Honestly, it's probably just more recently listening to my son say this isn't a good fit and even though I wanted to hold on to that person in particular because I knew it meant less help. And you know he's gonna need to step up a little bit more and have a little bit more. You know independence and his care, which he has some level of, it's learning to balance the control that he needs to have and the autonomy that he needs to have with his safety, and that can be really, really difficult. But at the same time, I see his eyes light up when it's Okay, let's have this conversation about this, when I'm attuned to his needs and we are planning this together, what this looks like, what the plan is, how he can advocate for himself, then he knows he's being heard and and we can move forward. And I think also probably through the years, just in general it's been, I think, like Casey said, like it's been a nurse that I just really wanted to hold on to and I just had to say it's okay, just to let them go and the right person is gonna come at the right time for the next stage of our life. Let me just say this to more recently I have struggled with just the whole.

Speaker 2: 29:57

I shouldn't have to be dealing with this again Almost 17 years into our journey. And why am I working through grief of this over again, being blindsided I? The absolute worst words out of a nurse's mouth to me are we have to talk. So I love your idea about these reviews, because I haven't had that set in place and I am blindsided so many times by a nurse saying to the point where I have a little bit of a bodily reaction of trauma, of oh my goodness, I know what's coming. Our lives are gonna be turned completely upside down and we're gonna have to start over again. And Honestly, with that, I've just had to learn to just let go of the anger, like let go of the grief, let go of just the cynicism, because in order to protect myself, I want to be really cynical about the next nurse who comes around and is she gonna stay, and you know. But the truth is, every time we go through some tension, I learned something new to take into the next stage and there's beauty in that piece of it.

Speaker 1: 30:59

Yeah, indeed. Well, thank you so much for sharing. And KC, what about you so looking at like this Tolerance of either air or tolerance of whatever, but like your tolerance for having things not go exactly your way? What do you see? What's been your experience with that?

Speaker 3: 31:17

Well at first. And then this goes for, you know, nursing my husband everything I found myself wanting to do it all, like do all the medications, do all the everything. And I finally Realized the reason why I wanted to do it all was because if it was done wrong or if there was a mistake, I wanted it to be my mistake so I could be mad at myself and not mad at them or blame them. So that took me a couple of years to like really work through and realize, okay, I have got to give some of this up, you know, and if there's a mistake made, there's a mistake made. Just like if I were to do it, if they were gonna do it, we're all gonna learn from it. No one can be perfect, including myself, and so really letting like small things go at a time, I think for me it's best for little bits, right. So, like my husband started taking over meds, did I check them for probably a month straight to make sure they were right? Yep, and then whenever I was like okay, he's doing a good job, I don't have to double check anymore. And then even like with this is recent, within the last year, you know, I always did Stella's suppository, and I know this sounds so crazy, but it's like I knew what her output was, what a Traditional output looks like if we needed to alter any type of medications. And for some reason she just always had a better belt movement when I did it versus someone else. And so one of my nurses was like you know, I could probably do her suppository before I left. Would you like for me to do that? And I'm thinking, oh, I don't know, because then I'm not gonna know. And then what if it she doesn't go well, and then she has really bad reflex the next day. But then I was like you know what? Yeah, this is how I do it, these are kind of my tricks. And at first it was a little rough for the first couple times, you know, and I could hear her like grunting and like, oh gosh, is everything okay? And then now it's like, oh, my gosh, I don't have to do suppository tonight. So when so is gonna do it? And then it's like the next person, right. And then the next person I'm like, hey, would you like for me to show you how to do a suppository? And so that's like one more thing that like I can be, that gives me time to be mom instead of caregiver, because giving suppositories is 100% caregiver hat right and so instead I can read her a book or we can have a more like mom time versus like caregiver nurse time One of the big things to carry.

Speaker 3: 33:41

I don't know if you've realized this too, but like picking Stella up and holding her because she is so low toned, like it's really awkward at first. You know, I got to build up my muscles and like form to what she needs for the last eight years. But someone that's just coming in and she's a 45 pound, you know for lack of better words, dead weight with her head and her arms and everything's just like dangling that it's really awkward at first. And so I always tell them like this is how I do it, this is how I hold her, but like my mother-in-law does it differently, so, and so does it differently, I'm just gonna let you Pick her up and hold her and I'm gonna go downstairs and do laundry, because it's going to feel awkward. You're gonna feel like you look awkward. I know you're not gonna drop her, so as long as you don't drop her, we're good. But like kind of get the feel of that and it's gonna take a while.

Speaker 3: 34:34

It might take a week or two, honestly, before you feel comfortable like oh gosh, I'm doing this right.

Speaker 3: 34:40

So my big thing is like this is how I do it. But if you find a different way that works better, like let me know because you know, might help me out too. But there have been times where, like, I can tell Stella's noises or like mom, please come save me, because this person's not Rocking me how I want to be rocked and it's kind of like. But then I think they have to learn and they have to realize. So I might jump in and be like, hey, do you notice that her tone has changed? Like I think she might want to be repositioned, and they're like, oh okay, you know so. But it is sometimes just like absolutely excruciating, going oh gosh. So sometimes I just take myself out of it and they're the best way they're gonna learn is on the job learning it. And you know I can jump in here and there, but trying to kind of Take myself and even into the next room to let them kind of work on it on their own.

Speaker 1: 35:32

Those are such good examples, I think, because it demonstrates you being uncomfortable, right Like this is something new, it's something unfamiliar. You haven't done this before. It has a high value, right Like it's your daughter, and yet you've done what's tolerable. Right Like you're like okay, I can tolerate her being a little uncomfortable positionally for a little bit. Or I can tolerate having the nurse learn to do suppositories as I watch. So it's a really great example of you leaning into discomfort to what's tolerable and then growing in those areas. So beautiful. Thank you both so much for sharing. Well, I've kept you longer than I already told you I would, and I'm really sorry, but I couldn't help myself. So we are gonna wrap this up as we do. I just wanna open it to if there's anything that you just on your mind, on your heart, as we wrap up, that you would like to say or share with the audience.

Speaker 2: 36:25

I know I would like to just say through the last, however many years there have been times where I have just been really grieving the number of nurses who are in and out of our house and, especially in the early years, just how hard that has been on my son. And even recently it's still hard because he thinks every nurse that comes through the door is a friend and sometimes he doesn't understand that professional home balance which is a tricky thing with nursing, because nurses go with you everywhere. I mean we have taken them to the zoo, to bowling, to birthday parties. We don't typically do vacation but for the most part they've gone with us everywhere throughout the last years. One nurse that we had who was with us for a little while and then she left to go work in the hospital it's one downside to our agency that we use that is associated with the hospitals. A lot of times it's a new, higher stepping stone to getting into the hospital, so sometimes there's a little bit more turnover. But at the end of that process she wrote me a letter and I'm gonna cry talking about it, but basically it was just thank you, because you had this impact on my life. You've taught me how to be a better mom and just different things like that.

Speaker 2: 37:42

And again, that's not to say woohoo for me, because I'm a work in progress and there are days I completely lose my cool and they see me yelling at my kids and having major meltdowns with my teenagers. But there is a measure of when they're in your family they're also seeing like there's this impact that you're having on one another that you wouldn't necessarily have that experience. They're learning more compassion, whatever it is. Yes, they're watching you and that's a downside, but on the upside, you're interacting with people who usually, for the most part, are just wonderful. They care, they wanna do a good job not always, but for the most part and I think when I flip, that narrative of this isn't fair. We need this help. It's all this stuff too. How can I have this positive impact on somebody else and show them how to be a good advocate for those who are marginalized in our society, or whatever it is that has helped me to rethink, nursing a little bit through the last many years that we've had them in our home.

Speaker 1: 38:52

Yeah, beautiful, and anything that you would share as we wrap up, casey.

Speaker 3: 38:56

Yeah, I would just mirror that that we've had so many people that their lives have been enriched by my daughter, like she has made a significant impact on their life trajectory, on the careers that they choose, and my daughter was a flower girl in one of our nurses' weddings. You know, like just yes, like these people for the most part, you know. Of course there's some that I'm like I hope I never even see you at the grocery store, like 99.9% of them. Like they, I'm still friends with them. I'm still like they still check in with Stella. They like they're not working with us so they have their own kids now and they're growing up and having their nursing positions and things like that. But they still have so much connection to Stella and our family and that's really nice that whenever you can provide that for someone else to have that opportunity and to learn from your children.

Speaker 3: 39:55

And my other big thing is, you know, when you have nursing come into your home. A lot of times it is you have your mindset of okay, I just need them from this time to this time so I can essentially get these things done or, you know, to survive this or whatever. But I welcome you to really think outside the box of what if it's just so you can take a nap or you can take a walk, or would you be able to go out and have lunch with a friend? So really think about some of those things too, and don't let yourself feel guilty for those things Like those are small but so impactful ways that will make you feel like you're living right. You're more than just surviving. At that point and bringing some joy into your life, and if that's you know, nursing, that's able to come in to cover for you so you can have those small moments of joy, then you're gonna be such a better parent when you are there.

Speaker 2: 40:50

Yeah, there's no such thing as balance. So let the house cleaning go, whatever it is Like, once a week. Pick something so you can do that when you have the help you need. I would echo that completely 100%.

Speaker 1: 41:05

And I also Casey knows how much I'm big on having space to not just rest, not just do all these things, but actually like have fun. I'm like to go play tennis. Go play tennis with a couple of friends and that is worth it. It's worth all of the struggles that you guys have both so beautifully shared with us the ups and downs, the pros and cons. So thank you so much for being here. I'm thinking that there probably needs to be even more episodes on this, because I think there's so much involved and even for those of us that don't have the personal experience, I think there's also so much to be gained. Whether we're managing an OT, a PT, a doctor, a group like. I think there's just so much parallel to what it takes to have both his mom and his caregiver role as we support our children.

Speaker 3: 41:52

Thank you.

Speaker 1: 41:53

Thank you All right, we'll all see you on the next episode.