Hope for living, loving and caring with no regrets!

Ep 22 Michele Howe

Episode 59

This week, Rayna Neises, your host, talks with Stacey Johnston.  Stacey has a varied background owning and operating a dance studio for 30 years and spending 11 years serving as a family services specialist.  She is now a coach, consultant, speaker, trainer, and podcaster.  Stacey is a caregiver for her mother and stepfather.  She shares the following insights from her caregiving experience and her current passion for encouraging others:

  • Caregiving is a balancing act between what we want and what our loved one wants/needs.
  • Ask questions to help shift your loved one’s mindset from what they cannot do to what they can do.
  • Find your ‘dance partner’. The world deserves the best version of you!
  • You cannot give from an empty cup, so turn on your ‘light’, and things that you need to fill you up will come to you.
  • Letting go of control can be difficult for the person being cared for as well as for the caregiver.
  • Listen to “Everyday Heroes” for interviews with people from across the world who are doing great stuff serving other people and bringing hope.

Transcript

*Transcript is an actual recount of the live conversation

Rayna Neises: 

Welcome to A Season of Caring Podcastwhere there’s hope for living loving and caring with no regrets. This is Rayna Neises, your host. And today our guest is Stacey Johnston. Stacy grew up in a dance studio family and has enjoyed the beautiful world of the arts all of her life. She’s been married for 36 years to a wonderful man. She’s the mother of three and grandmother of four and a half -with one on the way. She owned and operated Applause Dance Studio for 30 years and spent 11 years in the adolescent and adult substance abuse and mental health profession as a family services specialist. Stacy is currently operating Enlighten Up as an Internationally Certified Personal Development coach, consultant, speaker, and trainer. She feels blessed to spend the days working with individuals, companies, and families to eliminate their journey from existence to significance, shining a light in their legacy. Stacy’s new joy is co-hosting a podcast, the Hero Builder, where they focus on ordinary people that do extraordinary things in the lives of others and deeply diving into attributes of character and integrity. Welcome Stacy. I’m so glad to have you today.

Stacy Johnston: 

Thank you so much. I was so glad to be here. It’s an honor.

Rayna Neises: 

Well, I am excited to hear your story and then some of the things that you’re doing to encourage others. So let’s jump right in and have you share a little bit about your caregiving season?

Stacy Johnston: 

I think when my dad first got sick and got diagnosed with Alzheimer’s. That began our journey for us, with my little brother and I, and our path through caring for our parents. And we realized that we were kind of in that first generation that cared for our parents and raise our children at the same time. Well, it looks when they were born and that’s a, that’s a tough place because it’s two completely different sets of needs

Rayna Neises: 

It is, but lots of needs.

Stacy Johnston: 

Right. But lots of needs in some of them were so similar at the same time. You know, you think did not just do this with my four-year-old.

Rayna Neises: 

Okay.

Stacy Johnston: 

And so we began that journey with my dad and I was a long distance I was eight hours away my little brother was four hours away. And so we, we had to rely on services and the VA and the right people and, you know, God, getting lucky, sending us the right people at the right time to be there, to stay in his house with him, people that we could trust to, to see to his care. Right. So we learned a lot through that. And then we learned a lot as we moved on and buried my dad, he passed away from Alzheimer’s a couple of years ago, right before my daughter got married. And then in January of 20 19, I have a very active family. My mom was a go getter. She was a president of the garden club, PEO, they built houses for habitat, she decorated, they had a date for eight once a week. And they fed people in their homes and just this, this ball of energy and this lovely thing. And January 1, 2019, she had a stroke early that morning. Hit the Basal Ganglia region of her brain. Where you store your vast store of knowledge. Okay. Is what that, that portion is. And so her body kind of forgot she had a left side and by the time I got there from Albuquerque, she was in the bed, right. Strap on not able to talk, not able to walk. And we began to wonder, is this what’s next? Right? One day you have this life the next day you have this other life. But she was a dancer and she had this incredible body knowledge and we had the most wonderful care team at the hospital in Kerrville. And they’d been trained by John Maxwell years ago and they had a philosophy of the teamwork makes the dream work. And so they would talk to my little brother and I go, tell us about your mom. What does she do? What’s a phrase that we can use with her that’ll strike a memory with her. And I said, shoulders back dots out, right. Ballerinas, right And if you tell our shoulders back dots out, she will sit up because she knows that position

Rayna Neises: 

Okay.

Stacy Johnston: 

and sure enough, it worked for her. And so her entire care team, if they’d see her in the hall or walk by room, they go, “Hey, MissPat, shoulders back dots out.” So we had this wonderful care team with her and she came, her goal was to dance at my daughter’s wedding. And she did in August. You got to dance in my daughter’s wedding. And so she recovered really well, but we learned a lot about what that care might look like. Right. So we begin to check and make sure we had long-term care insurance in place. And what was that going to look like for our family and their family and where did they want to be? Because it matters, right? By the time my mother had her stroke, my little brother’s still had boys in high school, but my kids were grown and the last was getting married. Had grand babies all around. And so I was at a different place in my life than he was, but I was still 13 hours away from my mom. Right. And so she recovered remarkably from stroke one and we were on a path. And my stepdad is very healthy retired from the Navy. He knows everything there is to know right?Superman and January 1, she had a second stroke. Exactly 365 days later, but in a different region of her brain, this one was caused from AFib, a clot that got released from her heart so it caused a different kind of stroke. Now we’re in a whole, another place right? We began to care for the second stroke, my husband and I decided it was time to relocate and to move closer to his family into mind because we were in this season of caregiving. Right. It was upon us. So we relocated to Texas from New Mexico and we got here. We moved to Texas to help care with my mom. The day they shut the country down, 2020 and that’s the day our moving van left. And so since that day, about three weeks after that, my mom fell. They were still at home at the time. No care at home, they were self-sufficient. She fell backwards, broke her pelvis. So she did 11 weeks of solitary quarantine, and we couldn’t go visit her. We couldn’t see her. She couldn’t see us. She got to see my stepdad one time through a window and in this, Oh, it was heart-wrenching because we couldn’t see her and we couldn’t help her recover. Right. And she had had both strokes. So we had a little bit of brain injury going on at the same time, just for understanding. Right. And what the doctor was saying to her and what we needed to hear. We couldn’t always guarantee that those were the same. And then we had COVID so we couldn’t go be there. We couldn’t be a part of it. And so in the process of that, we sold their house in Kerrville. We packed her and my stepdad moved them to Abalene into an assisted living community in the same town for my little brother live in 45 minutes from my new location. So now here we are ready and then it became finding that care team.

Rayna Neises: 

Yeah, so challenging.

Stacy Johnston: 

They wanted to be independent, right? They didn’t want to live in a nursing home and they weren’t ready for that. So it’s that care team who takes care of them during the day, who sees to getting them dressed and personal needs. And then you have insurance, right? Insurance will only pay when they get to this certain level but we don’t want to be at this level of disability because we want to function. So where’s that middle ground. And how do you meet it and its challenges you never think about. Right, when mom comes to visit or you go home and hang out for a little while that’s one thing. But to see to the needs, they’ve seen to for their own their selves, their whole lives. And now they’re asking you to do that, or you have an expectation to do that. It’s you find yourself in a place of I need to learn. And if you don’t humble yourself and recognize that one day, that could be you and my mother would care for me. You make it harder, right? The longer you fight it and the longer you struggle with it, because it’s painful sometimes because you see things and to remember things and you’ve lived on that strength, right, you stood on those shoulders.

Rayna Neises: 

It is so hard to make that change. I think one of the most challenging parts of caregiving is really emotionally. Physically we can step in and we can do what needs to be done, or we can find others to help us. But emotionally it’s just hard to watch them age. It just is. And it feels like, but this isn’t my mom or this isn’t my dad, or they wouldn’t do that. Or they would be able to do this on their own. And I know I think of that, but I also spend a lot of time thinking of how hard it had to be for my dad too. Because, like you said, they’ve been independent they want to do it all themselves too. They don’t want to have to ask you for help. They don’t want to have to depend on other people. So it is such a humbling season.

Stacy Johnston: 

It’s so humbling and it’s humbling for them as it is for us. Right. Because my mother doesn’t want to live that life, she’s convinced she’s going to wake up one day and her left side is going to be back to normal and she can cook again. And, and she’s very functional. I mean, they still live in a house. They’re both mobile. Right. But in the process of my mom, recovering from that broken pelvis and getting them moved, she had two more little strokes and my super healthy stepdad on his 89th birthday as he’s walking his exercise routine had his own stroke. And he was, he was taking care of my mom. Right. That’s him. She was depended on was my step-dad. Well, then he had a stroke fell down the stairs. So now we have two stroke patients that still want to live independent. Right. So we have two care teams because the insurance won’t let you just have one ride. They all have their own prescription. So how do you balance those people in and out? And, and it it’s a struggle, but it’s probably harder for me to watch her be sad and, she gets so angry because she can’t do things. So we spend a lot of time talking about, well, let’s talk about what you can do Mom,

Rayna Neises: 

right.

Stacy Johnston: 

right. Four strokes in a broken pelvis. And you’re still telling me what to do. You can do some stuff.

Rayna Neises: 

I think as a coach, that’s probably really helpful for you to be able to ask those questions and help her shift that mindset. So tell us a little bit about what is Enlighten Up and what do you do.

Stacy Johnston: 

Enlightened Up The basis for my business probably comes from my experience as a dancer. Because that, wasn’t just a thing that I did. It really was a way of life for us. My mother was a dancer. I grew up in the world of the art. And so there’s this understanding about life and about your appreciation for life that comes with the arts. That’s very different. And so when I got ready to teach, I dance professionally for a while and then I began to teach dance and I loved teaching. I have a great time teaching. I love the children because I love to watch them recognize that they can do it, light bulb, that level I did it. Right. And they all feel like a princess. Right on stage. And it doesn’t matter. They’re the most beautiful thing in the whole world. And so I love to teach and dancing and tap was my favorite. And when we taught tap, one of the things that you’re going to be a good tap dancer, and you got to be a good tap teacher, you have to teach the children that and you can’t dance to the music because the music changes. But underneath the music, there was this little guy and he keeps, he keeps the band on time. He keeps the rhythm going and he has to be your dance partner. So you have to find him. So as my kids grew up in we walked through the trials that we had with our own families and, and growing up in the good days and the bad days, I began to recognize how much that was about your life. Who are you underneath your music, because it’s easy to sing a song, right. And I can sing over here with these people, and I can sing over here with these people, but who’s this for me. Because this decides how I like my eggs and how I vote and my faith and my strength and my integrity. And my character is this guy. And if I try to live my life here, I can’t do both. Right. But this is where your story is. And this is where your legacy lies is underneath your music. So at Enlighten Up that’s what we really focused on is, is helping you find your dance partner. Right? What’s your story. Because the grand overall design looked down one day and decided the world needed one of you. How come? Right? If you have this story to write and you have this song to sing, that’s different from anyone else’s. And if we’re not careful, we let our life, our parents, our caregiving, our children, our job, our social media status, write our story for us. And we just get up in the morning and dress in the character with which they’ve laid out for us today. And then one day, you look up and you go, wait a minute, this is my story. Right? And you pick up the pen and you write your story because that’s your legacy. How do you want it to read? What do you want people to say about you? What’s the message that we will live in the light they have? And until you live that path for yourself and enlighten your own wisdom to see that you’re amazing, then you’re going to be the very best version of you and the world deserves the best version of you.

Rayna Neises: 

So many times in our caring season, I find people who lose themselves in the role, which is exactly what you were saying, is that they get up every day and they do the to-dos and they just lose their own joy, their own passion, their own identity. And it might be maybe they didn’t lose it maybe they never had it to start off with, because I think oftentimes as caregivers, we just have a heart of service and we can easily lose ourselves in serving others and not truly know who our dance partner is and know how it is that our serving is it really a outflow of who we are or is it an expectation of what other people want us to do? And when we really find our dance partner find our purpose, then it’s an outflowing of who we are. They might be the same actions every day, but it comes from within, it comes from that heart of passion and of love and of service.

Stacy Johnston: 

Absolutely. And you can’t give from an empty cup if you never feed yourself and you never grow who you are and become bigger and more on the inside, then how do you continue to feed? How do you continue to serve? You have to learn that it’s important to put yourself on your calendar. So many times, especially in that role as caregivers, I’m a parent, I’m a caregiver, I’m an employee, I’m a mom, I have to wear 14 hats in a day, right? Who are you without any of those hats on? Because that person is important. That person has a story to write, right? And we gravitate toward light. We look over here for this person’s energy and we find this light and we feed on that and we go over there and we hover in that light and then it fades. And then we get disillusioned. And we think, Oh, well I was depending on that light, I needed that. And so we just seek out another one and we get tired seeking out that energy. And one day you recognize the light you need is right here inside you. And once you believe it’s there, then you can turn it on. And then, like you said, these things that you need, what’s next steps. They just come to you like fish to a light. Have you ever been night fishing. You’re watching anybody night fish?

Rayna Neises: 

No, I’m not a fishermen.

Stacy Johnston: 

So I’m really not either kind, but I was at the Lake with my children one weekend and the boys were all like, we’re going night fishing. So they got on their jet skis and they took these little balls with them and they put batteries in them and turn them on and throw them in the lake and they glowed bright green. And from where we were on the bank within 10 minutes, you could see the fish just suck to these lights.

Rayna Neises: 

Wow.

Stacy Johnston: 

Right. It was, it was a cool experience. Great for fishermen, right? But that’s the same thing that we do we gravitate that same way. And if you turn that light on that you have inside you, that gift that you got, the moment the world decided who should be here. Then those things that you need to fulfill you in to fill you up and to fill your cup and to help you serve, they’ll come to you, but you got to trust the light.

Rayna Neises: 

You have to realize when you’re empty. I think sometimes we don’t even realize we’re empty that we need to turn it on, that we need to find those things to fill our cups. It’s so important in this season to just not wear the one hat, but to realize that you can serve in that role again, you can honor, you can love well, you can do all of those things, but they can’t define you.

Stacy Johnston: 

Yeah, that’s exactly right. You can have a family with four or five siblings and there’s four or five different levels of care are kinds of care that are involved in that. Right. Cause they just, they just bring their lens to the picture. And so the expectation that my little brother and I are my sister and I are going to care for my parents the same way is unrealistic on my part. Right. And why am I going to fight with my little brother over how he fixes dinner for them? Right. But you find yourself getting to that place. Go, no, wait a minute. I do dinner, right? Yeah.

Rayna Neises: 

Okay. And that’s where I think, even in understanding your care team, you have those professionals that you pay to be a part of it, but you have those family members that are a part of it as well. And really taking time to look at who has a passion for doing these things? How can we just all work together? It’s not about one person doing it all and everybody else stepping aside, but it’s also not about one person taking over. Sometimes we wanted our way and we don’t acknowledge the gifts that other people bring into the picture. So that’s important point.

Stacy Johnston: 

Exactly right. And I think another thing sometimes that we don’t take into consideration is how our parents feel in it.

Rayna Neises: 

Definitely.

Stacy Johnston: 

worry about how we feel. Right. Do I get along with these people? Did I like that lady? Right? It shouldn’t be that it’s more important on how my mom and my stepdad, how do they get along with these people? Do they feel safe? Do they trust them? Do they enjoy them? And so at the beginning, I know when we very first started I caught myself going a lot into like her energy in my mother would go well, I think she was cute. Right? It’s so right when we had the learn okay, she’s going to be hanging out with you, not me. You tell me who you like, right? Who makes you feel safe and stepping back and given them permission to still own their life?

Rayna Neises: 

So important. We all want control, especially over our immediate life. I think one of the hardest parts about aging, why it’s so hard to age gracefully is because it is a process of letting go of control as it’s required. And you know, your mom and her stroke, boy, she lost a lot of independence. She lost a lot of passionate things that she loved to do. So how do we let her do what she can do and still honor that for her, it’s beautiful. Such a growing process, caregiving and figuring out how to have those relationships to support and love everyone around as well. But I love how you talk about the light. Cause I do think that’s important. We have to realize where we are and and really find what fills us up so that we can continue to shine. So I know another one of your projects that you are really enjoying is the Everyday Heroes. So tell us a little bit about that.

Stacy Johnston: 

Well, you know, we’re having the most wonderful time. The guy I co-host with Boyd Hamlin. He’s a wonderful man. He called one day, and said, Hey, at least people I work with wanted me to do a podcast and there’s no possibility I can do that by myself. Will you help me? And I’m like, sure, let’s do it. My grandmother always said I could be on the radio, let’s go for it. And so we just did, we had a guy that the, our third partner and his sponsor name is Christian DeBryce from Arizona, runs a program called the Athlete of Significance and Boyd wrote a program called the Hero Builder. And the Hero Builder is a character and integrity growth program for children, ages two to grownups, because included in the program has lessons for teachers, lessons for parents on how to model character and integrity. So when we started the podcast, we started the podcast as The Hero Builder. We really ran it by the premise of this program that he ran, the first 36 words that we did in our Wisdom Word for Wednesday were the 36 words out of the Hero Builder Program, those attributes of character and integrity that we want to teach our children. How do you make character verb in your life? And so that’s where it all started. And then The Hero Builder kind of kept growing it kept becoming this life. And so we, in January, we rebranded and we let The Hero Builder come over here and have a life all its own. And we became Everyday Heroes because we’ve had the most wonderful time meeting the most fabulous people from all over the world. I’ve been to Jerusalem, Australia, Perth. Going to the Netherlands. And I don’t ever have to leave my living room. Having the most wonderful time, but there are the most beautiful people all around the world that do the most beautiful things to serve other people and bring hope. If they never get a chance to talk about how do we know, right. But those people are also inspired by someone. So there is a hero out there for somebody this person is this everyday person that came into their life and did something extraordinary for them. And so we want to give them a chance to honor those people. We want to know what you want to share with the world. We want to know what your t-shirt says, right? What’s your one-liner? And so we I’m having the greatest time. That’s what we do. So I take care of my mom and I hang out on Everyday Heroes and talked to fabulous people from all over the world. And so let me tell you a quick story. One of the gentlemen that we interviewed on our podcast was a chef. He runs a program called Dairy Dairy, right, out of Germany. My mother was a cook. She was a fabulous. And she had a thing called the date for eight and she, and these group of eight couples, they cook for each other and good gourmet food and they did it for years. And when she had her stroke, she wasn’t able to be in the kitchen cause she couldn’t use that hand and she misses cooking. So this program that these fabulous people run from this program, we got to have a virtual birthday party for my mom, 84 years old the other day. We invited three of her friends that she cooked with as she hadn’t seen since she fell in over a year, on a zoom call with a chef and he walked us through beginning to end, preparing her birthday dinner until we plated it. It was the coolest birthday for her because she got to cook and not cook. Right. She got to cook with her friends. I prepared the food. She got to visit with her friends and be there. We all ate the same dinner. Yeah. I’m sorry.

Rayna Neises: 

That’s beautiful. I love that.

Stacy Johnston: 

it was so cool. So there are beautiful people out there doing great stuff. And if Everyday Heroes can bring that out and bless a birthday, change a life, light a candle of hope for somebody. That’s what we want to do.

Rayna Neises: 

Even as caregivers, it’s those opportunities to find a way to modify and deal with what we’ve got right here and right now, and still bless each other. And that’s was such a blessing for her to be with those special people, but Oh, how amazing for you to be a part of that and to instigate that and bring them together in that special way. That’s just amazing.

Stacy Johnston: 

So fun. So yay. The podcast. I love it. We are having the most wonderful time.

Rayna Neises: 

Podcasts are a lot of fun. We get to meet amazing people. I love to be able to bring different stories, different caregivers to our listeners, so that they can realize that they’re not the only one in this season and that they can learn from different things, different people are doing. So thank you for being a light for our listeners and helping them to see some different ways of maybe engaging in their caregiving as well.

Stacy Johnston: 

Absolutely. It was such a joy, such a pleasure to be here. Thank you for your time and for what you do and for giving people permission to feel how they feel an to get to walk it a good way. So thank you.

Rayna Neises: 

Thank you. Thank you listeners for joining us today. And just a reminder, A Season of Caring Podcast is created for the encouragement of family caregivers. If you have legal, financial, or medical questions, be sure to contact your local professionals and take heart in your season of caring.

*Transcript is an actual recount of the live conversation

Resources

Stacy Johnston

Stacy Johnston

Daughter in a Season of Caring, Coach & Podcast Co-host

Stacey Johnston grew up in a dance studio family and has enjoyed the beautiful world of the arts all of her life.

She’s been married for 36 years to a wonderful man. She’s the mother of three and grandmother of four and a half -with one on the way. She owned and operated Applause Dance Studio for 30 years and spent 11 years in the adolescent and adult substance abuse and mental health profession as a family services specialist.

Stacy is currently operating Enlighten Up as an Internationally Certified Personal Development coach, consultant, speaker, and trainer. She feels blessed to spend days working with individuals, companies, and families to eliminate their journey from existence to significance, shining a light in their legacy.

Stacy’s new joy is co-hosting a podcast, the Hero Builder, where they focus on ordinary people that do extraordinary things in the lives of others and deeply diving into attributes of character and integrity.

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Meet Your Host

Rayna Neises, ACC

Your Host

Author of No Regrets: Hope for Your Caregiving Season, ICF Certified Coach, Podcast Host & Speaker, offering encouragement, support, and resources to those who are in a Season of Caring for Aging Parents.

Her passion is for those caring and their parents, that they might be seen, not forgotten & cared for, not neglected

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4 Things you need to know as you begin your season of caring

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