Home Health Nursing

Hosted by Erica Jolene with special guest Amelia Mohr, RN | Transcription HERE



 


Social Media Updates

Facebook & Instagram


If you have ever been faced with the decision to consider home health nursing for a loved one, this is the episode for you! In this episode, I cover all the hard stuff with my special guest Amelia, who just happens to also be our home health nurse. Amelia has been with our family since we first opened the door to the idea of home health nursing. We discuss everything from how to navigate making that decision, what to expect in your first meeting with a nurse, what to expect when the nurse is hired, and important conversations to have with yourself, your family, and your nurse. It is so fascinating to get Amelia's perspective of what it is like to be a home health nurse for families with medically complex children. As I say in this episode, I really wish I had something like this, well, anything really, to help prepare me for this chapter of our lives. I am hopeful that this will help others who may be considering home health nursing for their own family.


Please consider voting to help petition for Disability to be a category of its own. By clicking HERE, you will be helping to support shows like this to be more accessible and reachable to those within the disabled community who are searching them out.


Research conducted in relation to this podcast, "Telling the Atypical Truth: Disability Community-Building Through Podcasting," can be found HERE.

 

Episode Transcription


Erica

Hello, and welcome to Atypical Truth. This is a podcast community for those impacted by disabilities and complex medical conditions. I am your host, Erica Jolene. Today's guest is Amelia, who has been our home health nurse since the very beginning. Okay, well, she was the first one to come into our home when we finally decided to have h home health nursing. I don't know about you, but the decision to have a nurse come into our home was not an easy one for our family. What with all the therapists and social workers, we had more people rotating through our home than we had ever had before. My husband and I, we are both introverts at heart who can play the role of extroverts when necessary. So the idea of someone being in our home, our private little sanctuary, it had us both feeling very nervous and on edge. So we put it off until we could put it off no longer, thanks to a second baby on the way. Thankfully, we got really lucky to meet Amelia and have her join our family. As you can hear in the episode, she is so calm, intelligent, caring, and just really easy to talk to. And to be honest, having someone in my house every other day, it was a huge and welcomed change in my life. Even if we were just talking about new crafts, video games, trashy TV shows, and true crime. Her presence helped me to feel less isolated and less lonely during a time when I was really struggling with those feelings. So without further adieu, I would like for you all to meet our friend, Amelia. Hi, Amelia!

Amelia

Hey, Erica!

Erica

Thank you for doing this with me.

Amelia

Not a problem. My pleasure. Thank you for having me.

Erica

I'm excited for our listeners to meet you. I definitely want to share you with the world. I want everyone to know about the people in our circle that have helped us get where we are today. I'm excited for them to hear from you.

Amelia

I'm excited too!

Erica

I'm just going to ask you a few quick questions to get to know you better.

Amelia

Okay.

Erica

What is your favorite smell?

Amelia

Favorite smell would be that smell right before it rains. The smell right after it rains is also top tier and I love it. But the smell right before it starts raining, I think, is the superior smell. And that would be my favorite.

Erica

(Laughing) The superior smell. (both parties begin laughing) Amelia, what did you want to be when you grew up?

Amelia

So when I was really little, anytime an adult or anybody would ask me, "what do you want to be we grow up?" my answer every single time was that I wanted to be a brown-haired blue-eyed horse. That is when I learned at a really young age that adults are lying when they say that you can be whatever you want when you grow up. But it is always funny looking back on it now because I can just see everybody's face whenever I would respond with that. And I was so serious too when I answered that. That was what I wanted to do. I could just see on everybody's face, they didn't have the heart to tell me that I couldn't do that. (laughter from both)

Erica

Oh my goodness. I don't know if I would have been able to tell you that you couldn't do that either. I had a period where I wanted to be a mermaid so badly. I really identified with Ariel from Little Mermaid because of the whole no voice theme and yeah, anyway, that's a layered subject for a later episode. After seeing the movie "Splash" with Tom Hanks and Darrell Hannah, I think.

Amelia

Yeah!

Erica

I was fully convinced that they were real and if anyone asked me what I wanted to be, where I wanted to go, my response would be "Cape Cod where the mermaids are because I need to be a mermaid." (Laughter from both) And then, at a certain age, I realized my grandparents lived close to Cape Cod and I was, I think disappointed is an understatement, that my parents knew this and didn't take me there. This was a willful decision on their end when they knew mermaids were right there.

Amelia

Yeah, I would be. Yeah, I would be furious if I was in that position.

Erica

In hindsight, I don't remember a single adult correcting me and telling me that this was not real. I hold on to the beliefs of things like that for very long, maybe, maybe an unusually long time.

Amelia

That's okay. It just keeps the imagination alive. And that's a good thing I think.

Erica

Look at us now, right?

Amelia

Exactly.

Erica

I am a mermaid, you're a brown horse. We got what we wanted. Right?

Amelia

It's perfect.

Erica

Amelia, do you have any pets?

Amelia

Oh, yes. I have got a little rat terrier mix. His name is Leroy. He is eight years old and a handful. He is a bouncy boy.

Erica

(Laughing) A bouncy boy, I love that. (Both laughing)

Amelia

Yeah, he's bouncy and he's stubborn. (Laughing) But he's, he's super smart, though. I love him. And I've got four cats. I have Max and Bobby are my two older ones. My two newer ones are Lydia and Gregory, they're brother and sister from the same litter. They were strays outside and I brought them in. They are mine now. I claimed them.

Erica

Or did they claim you?

Amelia

A little of both. (laughter) I was putting food outside and they stuck around and now they're in my house.

Erica

If you feed them, they will come...

Amelia

Exactly.

Erica

Do you have a favorite meal?

Amelia

I'm a pasta person. But really anything with a lot of carbs and a lot of cheese. Like, if it is a meal that is super heavy and super-rich, I'm probably going to love it. So...(laughter)

Erica

What is your greatest fear?

Amelia

If we are going for more normal things, and we're not getting into like, existential topics, then I would say for sure, wasps. I have a phobia. It's pretty bad. But I've never been stung. That's always like the first question I get, "Well, have you ever been stung? No, I haven't because I run away." (both laughing)

Erica

...because I'm smart enough to stay away from those creatures that look like ants on steroids.

Amelia

Yeah, they're terrifying.

Erica

I feel like that is a fear that many people can relate to. What is your favorite thing to nerd out on?

Amelia

Um, well, you know that I love my pens. I have a lot of pens. I bring my fountain pen to do my charting every day. But beyond my pens, anything like craft-related. I do cross-stitch and crochet, things like that. Different types of yarn or whatever and learning new types of crafts and then I will find a new one to get hooked on and then I will just talk about that non-stop for forever. But that tends to be the common theme though, something was it's something crafty.

Erica

Ummhum We have that in common.

Amelia

Uh-huh.

Erica

Are you an early bird or a night owl?

Amelia

Definitely a night owl, for sure. If I don't have to be up really early for any reason, my body will very, very quickly revert back to staying up until dawn. It's, it's crazy. So I tend to switch back and forth.

Erica

What is one word that would most accurately describe you?

Amelia

Probably "curious". Both in that, I'm a little odd and also that my curiosity is like the thing that keeps me going. I am always wanting to learn new things about everything. I'm constantly just reading something, or watching a documentary, or looking into something new and falling down new rabbit holes, things I've never heard of it. I want to learn all the things that's that's my thing, and I love it.

Erica

What is one of the best pieces of advice that you've received so far?

Amelia

Honestly, probably to start meditating. Really, like it's really helped out. You know, I said I started it about in the past year or so and it's really helped to change just kind of my general outlook, and kind of slowed things down and made things more calm, and just kind of helps me be more mindful in my everyday interactions and activities and all that good stuff. So...

Erica

what is one thing that you're presently grateful for?

Amelia

Well, really everything. That's another thing that I also do besides the meditation is I've tried to incorporate, uh, just kind of a gratitude practice. So I will go every day, at the end of my day, write down things that happened today that I am grateful for, you know. It's when you start to think about those things, you realize that even if you had a crappy day, there were still some little good things that happened to you, even if it was something tiny. But if I had to pick, like a specific thing, like right now, I would say maybe just the relationships I have with the people that are close to me.

Erica

Yeah. Yeah. I've loved getting to know you better and just learn these wonderful bits of information about you. Some of them I knew, others really surprised me. not in a "OH MY", but more in a just like..."I should have known that". (laughter from both) What inspired you to become a nurse?

Amelia

Well, when I decided to go back to nursing school...I'll be honest and say that, you know, I've met some people who just felt this great calling to be a nurse, like, that's what they were supposed to be doing. That was not the case for me. Now, I'm glad I went that route. But that was not like this, you know, great calling that I had to be a nurse. At the time, I was working as a pharmacy technician, which I really enjoyed that job, but it had kind of reached a point where there was a kind of capped out and there wasn't really any room for advancement at all. And I was like, well, I really do enjoy this job, but I want to be able to, to grow a bit more. So then I started thinking, "Well, what do I want to do?" I landed on nursing, decided to go that route. Once I got into it and started learning things and started working after school is over, I found out, "Oh, wait, actually, I really like this." So I am glad that I ended up going that route and now that I've done it, and now that this is where I am, I feel like I chose, you know, the right path and that this is kind of where I'm supposed to be. It worked out well. So...

Erica

Good! And so, what compelled you to work in home health?

Amelia

I had originally worked in, you know, nursing homes, I did a little bit of doctor's office things. And, you know, I loved my patients. For me, and my personality, that sort of environment is not what is best suited for me. That's not to say, you know, I didn't enjoy my time there. And that I didn't learn things because I absolutely did, especially being a fresh nurse and not knowing exactly what you want to do yet. For me, I want to be able to have a connection with my patients beyond just here's the medicine, you know what I mean?

Erica

Yeah

Amelia

You know, some people really love to just go, go, go, go, go all the time. And that is great. And I, you know...

Erica

We need those people too...

Amelia

We need those people. And that's, that's not me though. I want to be able to focus my time and my attention on one person and do the best that I can with them and make sure that they know and that they feel that they are getting the care that they deserve. And nothing's being rushed.

Erica

Uh-huh...and we need those people too. I find it so interesting that when you talked about the things you are grateful for you mentioned relationships in your life. This makes a lot of sense, because, you know, you do get to form a more intimate relationship with your patient...

Amelia

Absolutely.

Erica

...In the home-health setting.

Amelia

Yes.

Erica

That clearly is a theme that resonates in your life.

Amelia

Yeah, that is a big deal for me in just every area of my life, I like to have actual connections with people.

Erica

What aspects of your job in-home health care or just in nursing in general, do you enjoy and look forward to?

Amelia

I mean, and it kind of comes back to that connection with people, but it is just the best sometimes when maybe somebody is really just super anxious about something that's going on. You know, they're in a new environment, they don't know what's going on. Maybe they've come to the doctor's office and they are just super nervous because they don't know what's gonna happen, what the doctor is gonna say. And when you can go in, just be kind to somebody, go out of your way maybe just a little bit to do something, even just something small, make them smile and just tamp down that anxiety just a little bit so that just for a moment, they're they're feeling more comfortable with what's going on. And they know, at least somebody's got their back. That's probably my favorite

Erica

With that said, or should I say in opposition to that...What aspects of your job are difficult or challenging?

Amelia

I would say, the hardest part is the emotional labor. Not that I've worked in, you know, every sector or anything, but just in, in the places that I have worked, you get that to varying degrees, but it's always there. As you form these bonds with people, as you are trying to care for them the best that you can, you know, they're oftentimes going through some really difficult things that you're trying to, you know, be there for them. Sometimes, you just take on a bit of that emotional labor. And depending on the situation, there are points where it, it can get to be a little much, and sometimes you have to, you have to know yourself and kind of your own limitations as well, to be able to realize when you're getting emotionally overwhelmed, because if you're overwhelmed, then it makes it hard to take care of somebody else.

Erica

It does. So a common theme that I've heard from a lot of professionals in the medical field has been the frustration with the lack of support for those providing care. Like, who cares for the caregiver?

Amelia

Yes.

Erica

The lack of mental health support in the profession...

Amelia

Yes.

Erica

But also, so you work in home health, and you probably see that this is something I'm very frustrated with too, is the lack of accessibility for mental health care for the families.

Amelia

Absolutely.

Erica

So that is definitely a common theme that I've heard is this concept of there not being support for those in the profession and the caregivers as well.

Amelia

Yeah.

Erica

I would hope after the pandemic, maybe, we'll see some changes. I don't know. I really hope so.

Amelia

I do too. Something's got to give here.

Erica

We know that this is a need. This is a weakness in the system.

Amelia

Yes.

Erica

So I think the next step is that we all have to agree. It's not a big ask. It's a justified and validated ask.

Amelia

Yes, absolutely.

Erica

Amelia, you have been our nurse from day one. From the very beginning of this journey with home health nursing care, at least. You came into our lives when Margot was...

Amelia

She was about a year and a half I believe...

Erica

Yeah. So when I say day one, I really mean like the very first nurse we had in our home. From the very beginning of our journey with home health nursing, you've been there. I'll never forget the relief that I felt when we met you. I just really sensed that you would be a great fit for our family and that says a lot because I was, and I am, rather picky about who enters our lives, especially the privacy of our home and to be here all day, multiple days a week.

Amelia

Yeah.

Erica

And I have some non-negotiables for a person to be in our home. You know, they can't be bigoted, they can't be racist, they can't be homophobic, classist, or pushy about any one form of belief system. Those things are a major put-off to me. So I'm curious to know, what was it like for you to walk into our home, that's got to be so nerve-racking for you.

Amelia

It can be a little awkward at first, because you are just showing up to a stranger's house and just walking in and being like, "Hey, here I am!" I felt I mean, I felt good. Walking into your home after the, you know, initial nervousness. But after we got to talking, I felt good about it, I felt like we would be a good fit as well.

Erica

Because that's the thing, it's got to fit on both sides.

Amelia

Yes, it does. And I mean, I, I'm easy to get along with, but it's always a plus whenever you can walk in and you share so many common things with the people that you're going to be in that home. So you're not just getting along with them, you're actually like, "Oh, you know, this is actually a cool person, I would hang out with them outside of work."

Erica

I feel the same way about you. I do. (laughter from both) Do you have any of your own non-negotiables when it comes to working with families?

Amelia

My big ones are, as with, you know, any job or any environment, I will not tolerate abuse. There are certain ways that maybe sometimes people will talk to another person, you know, they may be angry, they may be very condescending, or belittling or whatever. Yeah. And, and I understand that it is a hard situation, it is stressful. And sometimes when you're just in the middle of something, those emotions can kind of get the best of you. So I am pretty forgiving. And you know, we're all human, I do the same thing. I have my moments. But when it's, you know, when it's a constant thing and not just a one-off, then that's a problem.

Erica

Yeah, I really struggled with the decision of getting a nurse because I felt like I was admitting defeat. I didn't want to give up my responsibilities as a mom. However, when we found out that I was expecting again, I knew that I would need help in providing that same level of care to Margot as I always had because she was growing so fast. And so was my pregnant body. I knew there was gonna be a time where like, in the third trimester, and boy was I right when I just wouldn't be able to lift her like I used to.

Amelia

Yeah.

Erica

And I remember at the beginning of my journey with having a nurse in the home, which was you, I mean, I hardly let you do a thing, Amelia. I feel in hindsight, I feel so bad because it was like, you were there, but I, I didn't trust anyone to make her meds, I didn't trust anyone to hold her the right way. So I'm pretty sure for the first few months, you just helped me by handing me things while I was...

Amelia

Yeah...

Erica

...stuck with my pregnant belly and Margot on top of me. And I'm gonna say, I'm not proud of this. I do realize I just was having a hard time getting comfortable with the idea of someone being in my home, someone other than me caring for my child. But I will say you were super patient with me. You let me subject you to an embarrassing amount of terrible TV shows. I just I really appreciated that. And I wonder for other moms who may also have a young baby and they're being informed on Home Health Nursing, maybe they're struggling with this as well... What did that feel like for you? And what advice do you have? Was that okay? Did you sense that I would eventually get used to you? Or did that make you uncomfortable?

Amelia

Well, gosh, no, it was fine. And I kind of expected it, to be honest. You know, it's, it's a huge change. It's not like just leaving your child with the babysitter for a few hours. Which, you know, new moms have a hard time with that sometimes when it's the first time you're going to hand over care of your child to somebody else, and this is in perfect circumstances So you're looking at a situation where it's not just someone I don't know is coming in to take care of my child, it's someone I don't know is coming in to take care of my child who is medically fragile, who is going to be in our home all day, multiple days a week, invading my privacy. You know, it's, it's a lifestyle change. And that takes a lot of getting used to. And I mean, if it was me, I would be extremely apprehensive about it as well, because it's so different. You get used to it. And I knew that you would get used to it eventually. But you just have to be patient and put yourself in that other person's shoes and say, "Well, how would I feel somebody was coming into my home and doing all of this, and they're here all day, and I don't even know them?"

Erica

Well, you did a great job of that, you helped me transition so well. Look at us now! We have two nurses!

Amelia

I know.

Erica

I guess it'd be almost four years that we've known each other that you've been in our home, we've both witnessed each other's lives evolve. Yeah. We've seen each other through an array of life's seasons, so to speak. We've celebrated each other's accomplishments, you going back to school, getting your RN. Me coming up with some crazy idea, like a podcast...(laughter from both)...our victoires, you know...and we've also sat with each other through loss and grief. I can remember, one such time very vividly was the unexpected diagnosis of Cary at his birth.

Amelia

That's exactly what I was thinking about. I will never forget that.

Erica

You were there for us in a way that we, we didn't expect. We didn't expect any of it. But, you know, we had no expectation for you to jump in and fill these roles for us. When we were in St. Louis...

Amelia

Yeah...

Erica

You know, Margot was being cared for by grandma and you, and it was just the two of you, at least for a couple of days. That was so incredible. I think it took our relationship to a different level of trust and comfort. So I want to ask you, what is it like to spend this much time in the home of another family as we do our things, we live our lives, in so many ways. You're not a wallflower, you're not a fly on the wall, you're in it, you're involved in it, we seek your opinion, we engage with you in the conversations. So what is that like for you?

Amelia

You know, I love it. That's another favorite thing about my job, quite honestly, when you're in a home like that, several hours a day, multiple days a week, for years, at this point, it becomes, you know, almost like a second family and a second home. You know, there are still professional boundaries to maintain and that can become a little bit difficult sometimes because you get so used to each other.

Erica

Mm-hmm. I'm over here, like, please make yourself a home. You're a guest. Well, also it's like, "Oh, this is your job. Shit, how do I...." I know! (Laughter from both) So it's one of those things like, of course, nobody's perfect. But you have to be mindful of that and try to maintain those professional boundaries. But if you are not paying attention, it's very easy for them to get blurred. Because everything becomes so intertwined. I could see that being a difficult aspect of this job.

Amelia

Yeah. But I love it though. So...

Erica

I know for me, that was kind of a hard part for me is this idea of, "This is your (Amelia's) job. I'm aware that you are an employee of our nursing agency, you come in, your job is to care for the kids." But the other side is like, "I really like you, you're my friend. Make yourself at home. If the toilet paper is low, fill it. If the soap is empty, fill it," but also I'm like, "No, no, I got that. I got that." It's really hard on so many levels and I think that is why it can really feel like a vulnerable experience. So yes, I know my own advice to families is like, take time to find the right person...

Amelia

Yeah.

Erica

...because they're out there.

Amelia

Yeah.

Erica

And don't settle for something or someone who is going to make you feel uncomfortable. And I would say that the nurse too! I can't tell you how many times I've asked you guys to put your mental health, your well-being, before our own because we need you to be healthy in order to come here and care for our kids in the capacity that it requires. If you don't have a family as a nurse, engaging you like that, be mindful that that's not okay.

Amelia

Yeah

Erica

You might be an employee, but you're still a person. And yes, this goes back to that care for the caregiver.

Amelia

And I appreciate that so much. Because I know I mean, over the years, you know, as I said, there's been times of loss and just bad things. And, you know, I appreciate you guys being patient with me, because I know there have been, you know, days here and there that I come in, and I'm definitely not at my best.

Erica

Oh, you've seen me my best and you've seen me my worst! And sometimes that can like all happen in a day, you've seen that with bad news with, you know, a health situation...

Amelia

Yeah.

Erica

Or it could happen over the span of time. And, you know, I think that is such it is it's a beautiful part of it, but it's also very hard and vulnerable.

Amelia

But it just brings a whole new dimension to everything. And I think, I think it's wonderful.

Erica

And you know, now, I couldn't imagine doing this without nursing, without you. It is a whole new dimension. And when I think about the pandemic and the loneliness that a lot of people have felt in isolation, we have been isolated as a family, but we had this second family of nurses that would come in, and just having someone new and fresh to talk to has been so, so helpful. Yeah ...and I say that in regards to the pandemic, but that's actually been the reality of our life this whole time. You know, you guys were the constant visitors, we never really got to leave our house pre-pandemic.

Amelia

Yeah

Erica

This is something that, in a strange way, most of our socializing happens with our kids professional care team.

Amelia

I'll try to keep myself interesting for you..(laughter from both)

Eric

You better! (laughter from both) That is a part of the job description to do that, no? I'm gonna add it. (eruption of laughter from both) So you've worked with other families as a nurse in the capacity of home health nursing. You know, it often feels like you're an audience of one, in a reality show that we never signed up for (we = the family). You sit in our homes, you've helped care for children, as our lives continue to play out in front of you. And so much of this is vulnerable. And we lose a lot of personal privacy that people usually get and look forward to in the comfort of their own homes. Yeah Our lives, essentially, are put on display for someone who is, at first, a complete stranger. And this is typically happening, as you already said, during a very fairly difficult time in our lives, considering you only receive Home Health Nursing in our state, if your child meets certain criteria, which includes the need for life-sustaining medical equipment, or the severity of the condition.

Amelia

Yes.

Erica

So you've seen us at our absolute worst, but you've also you've seen us through our personal bests. And I'm just kind of curious to know, in your work with other families, are there common themes that you see play out in families like our own?

Amelia

Yeah, absolutely. You know, everybody, every situation, of course, it's going to be a little bit different, because people are different, but there is always so many things to juggle... keeping track of meds, keeping track of appointments, keeping track of this or that, where did I leave this piece of equipment? Where did I leave that thing? You know, parents struggling to keep track of all of it.

Erica

It's, it's a lot...

Amelia

It is a lot. And it's....

Erica

...what company to order from? When do we order from them, especially when they're all on different schedules? Oh, my goodness, yes.


Amelia

And being, you know, just exhausted in general from having to give so much of yourself all day, every day, having a medically fragile child, you know. Fear when they go into, you know, have an unexpected problem and have to suddenly get admitted or, you know, it's all there. You know, in different homes that I've worked in, it's the same sort of deal. You know, I've seen people are at their worst, and I've seen them at their best and that's just part of being in someone's home. You see that glimpse of their lives, but there are so many common threads, you know. My job is to come in and take care of the kids. But really, it's not just the kids, it's you, you're coming in and taking care of the family. And trying to, you know, I'm over here taking care of the kids, but I'm also trying to calm the family down, if something is horrible is happening and being like, "You know what, you can vent to me, let me explain this to you. We will get through this together..." And if nothing else, just trying to be some sort of support system, because that's important, too.


Erica

Yeah, you're definitely describing your role in our life to a T.

Amelia

I mean, that's the bulk of it. Really, it's not just the kids, it's the whole family. And I would think that you know, maybe somebody that was coming into the profession needs to be aware of that, that it's, it's a whole family thing. It's not just I'm going to come in and deal with these kids and then go home.

Erica

Such great advice. Yeah.

Amelia

Be mindful of the whole family's situation, because it will play out and it will impact you it will impact the child. So definitely.

Erica

What suggestions or recommendations do you have for families starting this process?

Amelia

Well, number one: yes, it's a stranger coming into your home, but, you know, I promise we're coming in, and we want to help you, we want to help your kids. And we will do whatever we need to do to try to make you feel comfortable and to accomplish that goal. And I know it's weird at first, but it'll get better, I promise. But also, though, what you had touched on earlier, please feel free to be picky about who comes into your home. If someone comes into your home, and you're uncomfortable, like beyond just the someone is in my home weirdness; but if you truly feel uncomfortable with the person, or if you are kind of feeling weirded out, but you're not quite sure. And you maybe you've given them a few months, and you still are just like Yeah, no, I just, I'm not comfortable with this. Trust your gut. You know, at the end of the day, it's your home, and it's your kids, what you say goes and if you're not comfortable with something, don't just let it slide. Whether that means something in the dynamic needs to change, whether that means this person is not a good fit, you need to find another nurse. I understand maybe if you are in a really dire situation and you just have to have somebody in the home, I can maybe understand keeping them there until you can find someone who is a better fit. If you are not comfortable with anything, then something needs to change and you are fully within your rights to seek that change.

Erica

I think you're absolutely right. And that's such good advice to families, to kind of like piggyback off of what you're saying. I also want to say to nurses out there from a family and family to family...One, if you have a good nurse, treat them like a good nurse, articulate your appreciation. We have to keep in mind that you guys are giving so much of yourselves. To have the validation that you're appreciated, that the care that you're giving, and you're providing is seen and valued. I think that is what keeps you coming back into the home. And yes, you're invested emotionally in a healthy way.

Amelia

Yeah.

Erica

So that's my advice to families...if you do have someone good, articulate that appreciation, and doesn't mean that you have to buy gifts, but just acknowledgment,

Amelia

Just a thank you is wonderful, you know. I've worked in places and I know I'm not the only one where you never hear anything good and the only time you hear anything from a boss is if something goes wrong. And that doesn't make you want to be there that doesn't make you, you know, it just makes you feel bad. And, you know, I love working for you guys regardless, I come in and I do feel like I'm appreciated...

Erica

Well, you are.

Amelia

It's huge, because there are so many jobs, you know, in medicine and out of medicine, where that's just not the case. And the employees don't feel any sense of appreciation whatsoever. And it's huge.

Erica

Yeah, I mean, I am appreciative. Because of nursing, I've been able to find myself again, I've been able to step away from being a caregiver, from being a full-time therapist, full-time nurse, full-time doctor, and mom and...I just get to be the mom who can go and do a hobby, can go back to school, can go to work, and still have another facet of my life that, you know, is a break from how consuming medically complex caregiving can you be.

Amelia

Yeah.

Erica

As much as I love my kids, dearly. And in hindsight, I wouldn't trade this experience unless I was guaranteed that they wanted something different. But I mean, I appreciate nursing because of the freedom it has given me. And I want other families to know that it is a change, it is a transition, but the reward in being able to do that is that you get to focus on yourself, your self-care, your well-being, and then you get to show up even better, as a mom...

Amelia

Yes

Erica

...as a wife, as a friend...


Amelia

Absolutely.


Erica

In every capacity of your life, you get to show up as a better YOU because you've been allowed the time to take care of YOU.


Erica

So Amelia, let's pretend for a moment that a miracle happened overnight and suddenly, without any warning at all, the home healthcare system became a perfect, flawless, career and system that you'd always dreamed for it to be. No one has told you this has happened. You walk into work, how would you know? What things would you see or notice that said and spoke to this change having happened?

Amelia

While we'd have enough pulse ox probes for one! (laughter from both)

Erica

Can you say that again, because you just cut out and that needs to be said!

Amelia

You'd have enough pulse ox probes for one thing! That would be a big one. I would walk into that home and I would be like, "Oh my gosh, we have all the things we need. We're not running out of anything. We have, you know, all of the equipment of the meds, all of the stuff."

Erica

And we have this ceiling lift...

Amelia

Exactly!

Erica

...we have a bath chair, you know, goodness, You're right!

Amelia

It would just be there. "Oh, my child needs this thing..." And then you could just get it. And instead of having a battle for months, trying to get a single piece of equipment...

Erica

You are speaking my language here! Yes! I think so few people realize how big of a deal that is. If you're not working in our home, but when you're at our home...

Amelia

It's constant...It's nothing but a battle, just trying to get the simplest stuff.

Erica

And when you're like on this faulty pulse ox monitor, and you're like, is he tanking? Or is it the sensor? Because we only get two a month and guess what? In a hospital, they change them like once every few days, so...

Amelia

And that adhesive, you know doesn't last all that long. So...

Erica

Yes, I agree. What a great answer. I love that. This has been awesome. Thank you. I mean...

Amelia

Thank you for letting me do this.

Erica

Like we see each other all the time. But to just have this conversation in this capacity.

Amelia

Yeah, it's completely different. And I love it!

Erica

It is, it is. Thank you so much.

Amelia

Thank you and I yeah, this was fun. And I really do hope that it helps somebody out.

Erica

It will. It will. I'm telling you, if I had heard this, would the nerves still have been there? Absolutely.

Amelia

Yeah.

Erica

But I think it would have been a much easier transition.


Erica

I hope that you all enjoyed this conversation. And if anything, that it helps set some nervous hearts at ease. I know it would have been extremely beneficial for me. And I've been provided some sort of insight into what life is like when home health nursing joins your team. In a few weeks, you'll be hearing from our second home health nurse Kaylee. It was an absolute miracle that the stars aligned for her to work in our home and she quickly found a permanent place in our hearts. She is the older sibling of an awesome young man with disabilities and a similar seizure disorder as our kids. Her perspective as a nurse and the older sibling to someone with disabilities, well, it's really awesome and very encouraging. I can't wait for you all to hear from her as well. So if you can relate to this content, and you're interested in becoming a guest or hosting your own conversation, please don't hesitate to reach out to me.


If you can relate to this content, and you're interested in being a guest or hosting your own conversation, please don't hesitate to reach out to me. You can reach me through the website at www.atypicaltruth.org. You can also find Atypical Truth on Facebook and Instagram.


One way to help promote this podcast more widely, for those within our disabled and medically complex community, is by sharing it with as many people as possible. By simply taking a few minutes to subscribe, rate, and review this podcast; it will become more visible to those who are searching it out. (You can do so by following this link)


The beautiful soundscape behind this podcast is titled "Rugla" it's performed by my favorite contemporary music collective from Iceland Amiina. The cover art for Atypical Truth was designed by the lovely and very talented Kendall Bell @littlebell.co



Recent Posts

See All