Rayna’s Caregiving Wisdom: No Regrets and Cherished Memories

In this episode we are joined by Rayna Neises for an enlightening conversation about her extensive caregiving journey. 

Rayna is a dedicated Caregiving Coach, author, and advocate for family caregivers. With a heart deeply rooted in faith, Rayna has transformed her caregiving experiences into a mission to support others navigating the challenging path of caregiving.

She was introduced to caregiving as a teenager, caring first for her mom who was diagnosed with Alzheimer's, and later for her dad, who, after a cancer diagnosis and a MRSA infection, also had Alzheimer's disease.  

Rayna delves into the emotional and practical challenges she faced and details how she and her sister managed to honor their father's wish to live at home. 

Rayna discusses the importance of self-care for caregivers, her approach to documenting and learning from caregiving experiences, and the inspirations behind writing her book, 'No Regrets: Hope for Your Caregiving Season.' Additionally, we touch on Rayna's coaching work and her podcast, 'A Season of Caring,' which is an insightful resource that offers practical advice and spiritual encouragement to those caring for aging loved ones.

The episode concludes with advice for caregivers to cherish and capture moments - emphasizing the importance of maintaining personal joy and creativity.

Rayna is married to a farmer and lives on a farm in Kansas.  Her life is a beautiful blend of faith, family, and farming. She is a stepmother to four and a grandmother to 8. Her close relationship with her sister, with whom she shared her caregiving journey, adds a profound depth to her understanding of family dynamics in times of need.

You can learn more about Rayna and her resources at www.ASeasonofCaring.com or on her podcast A Season of Caring.

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Transcript

Thank you for tuning in to the Island Treasures Podcast.

We value the insights shared by our guests and hosts, but it's important to note that their personal experiences are intended to inform and encourage, and not to replace professional, legal, or medical advice.

With that, we are ready for today's exciting episode.

Welcome to Island Treasures, a place for caregivers to hear encouragement from other caregivers, who by sharing their experiences offer helpful information and resources for your caregiving journey.

I am your host and caregiver consultant, Alison van Schie from beautiful Vancouver Island in British Columbia, Canada.

And before we dive in to today's episode, I want to let you know that Island Treasures is set up to receive fan mail, so you can text the podcast directly through the link at the bottom of the show notes.

The caregiving story you are about to hear spans 26 years as my guest was caregiver for both of her parents who battled Alzheimer's disease. Despite their similar diagnoses, my guest tailored her approach to their specific needs.

With a heart deeply rooted in faith, she transformed her experiences into a mission to support others navigating the challenging path of caregiving. She is now an author, a coach, a caregiver advocate and a podcast host living on a farm in Kansas.

She describes her life as a beautiful blend of faith, family and farming. Let's learn more as I welcome Rayna Neises to the podcast. So, welcome Rayna.

I am thrilled to have you joining us today on the Island Treasures Podcast.

Thank you. I'm so glad to be here today.

Well, I am relieved that I get to interview you and not the reverse because that's how we met.

I still can't believe you said no, but okay.

I didn't say no. And then I said, would you like to be a guest on mine? And you jumped at it.

Sure, I love this.

That's the attitude I should embrace, but I didn't.

It's okay.

I forgave you.

Thank you. So you're joining me today to share your caregiving story and then we'll talk more about all the things that you're involved with as well, including your podcast.

It sounds great. Well, I have a caregiving story that started really, really early and honestly, until later in life, I didn't even think about it. But I was only 16 when my mom was diagnosed with Alzheimer's disease.

So my older sister was off to college. So it was just mom and I with dad at home and he was working. And there were just concerns that I had.

But in that really authoritative kind of family structure, I didn't really know what to say because my mom wouldn't remember what I would tell her where I was going or what I was doing. So I found myself in trouble and I shouldn't have been.

And so she had a diagnosis. She was just 53 years old when she was diagnosed with Alzheimer's. And so she stayed home.

My dad was her primary caregiver. And for that 12 years, I went home as often as I could, tried to make him go and do other things and take care of her.

So I was feeding and taking her to the restroom and showering all of those things at a very young, you know, young 20s. And then seven years after her passing, my dad was diagnosed with Alzheimer's.

And so he lived 14 years with the disease, and his request was to be home as long as possible.

And so for us, that translated to, we're going to try to do this, we're going to do the best we can, and we were able to keep him at home all the way through.

So help me with the math there. That's a total of 26 years.

Yeah.

That's an incredibly long time. And both your parents.

Right. And it looks so different with both of them. Even, you know, with my mom, it was one of those things that she needed me, and you just stepped in and took care of her.

I really didn't think of it as caregiving at all.

Of course, then in the period of time of my dad being okay and being able to take care of his daily living tasks, then when he got to a point that he couldn't, it was like, oh my gosh, I might have to bathe him.

I might have to take him to the restroom and wipe him. Those things that I had done so easily for my mom, really without a lot of thought, became really uncomfortable whenever I started to think about that. My dad was doing really well.

He was very physically active. He loved sports. That was his number one thing.

Even in his 80s, he was playing volleyball three times a week, going to the gym three times a week. He wasn't driving himself. We had paid someone to be able to get him there, but he had a cancer diagnosis, melanoma.

And so he had that skin cancer removed, and then sadly had MRSA in that wound. And we spent a really scary little over a week in the hospital with just crazy behavior and not sure how he was going to recover.

He did end up doing really well and getting a lot of those skills back, but not to the point that he had been before.

So that was the point in time when my sister and I had to really make some decisions and step in and say, okay, how do we take care of his daily living? How do we make sure that he's bathing and take care of those things?

So that was kind of a big deciding point. And when we were talking about that, I was like, oh my, I don't know how I can do this.

So one of the things we chose to do is bring in, you know, in home care and have professionals come in and do the bathing. So every morning, someone else woke him up and showered him every day.

And then I took over, my sister took over, we did day stay. So lots of different people and places that came into place there. But the last four and a half years of his life, we were those primary caregivers hands on taking care of him.

And you were able to honor what his wishes were and keep him at home.

Yeah, yeah.

With a lot of help.

So thankful for that.

I'm so thankful. My husband said to me, because my sister was looking at memory care units, and I was looking, because we were having the conversation, what are we going to do? I was 220 miles from my dad.

She was about three. And so, but she had school age kids. Mine, my youngest was in high school.

And so it was like, what are we going to do? And my husband was with me visiting, and I had gone to a facility, and I left just in tears like I did every time. And he was like, you know, Rayna, what's going on?

I'm like, I just can't imagine. I can't imagine my dad living there. And he's like, then don't.

And I'm like, what do you mean? And he said, then don't put in there. He said, if you need to come here and live with him and take care of him, then that's what you need to do.

And that was kind of permission for me to say, okay, it doesn't have to be A or B. What does it look like? What can it look like?

And so that let me put together a plan that worked for our family.

So where did he stay in his home? And then you moved in with him?

Yes. So we brought all caregivers to him. So I was one of those caregivers.

I went up on Thursday evenings and stayed through Sunday, came home. I was teaching part time initially. I had grandkids during that four and a half years.

Lots of things changed, but I went up and stayed with him. And then we had caregivers that came in and took care of him. And when I wasn't there, my sister spent the night a couple of nights a week.

His sister spent the night a couple of nights a week. It changed and morphed over that four and a half year period as our families had different needs, but we were able to bring that team together to keep him in his home.

Talk about problem solving, hey?

It was a full time, all the time situation. And my sister loves spreadsheets and all of that kind of stuff. So she really enjoyed all that planning and organizing.

I think for me, I was more active with him. We played ping pong. We went to the gym together.

We did a lot of those kind of activities. And so I did a lot of problem solving in the situation of the Alzheimer's changing because that dementia changes what one day looks like compared to another.

So simple things like getting your loved one out of bed can be really challenging, but we did some problem solving on how to change the environment.

So we learned that as we kept it cooler at night and had a weighted blanket for him that he slept better. And then in the morning, we'd bring that space heater in and we'd heat him up.

And he'd be ready to get out of those covers and ready to get out of bed and, you know, make sure that the restroom, the bathroom, the shower was really warm and that it was a warm environment.

So we did a lot of unusual things as a family trying to problem solve and find things to support him. But it was always fun to try new things, I think, to find what would work.

Well, those are really good tips, though, like making the environment uncomfortable for him or comfortable for him. So throw off the covers and get out of bed, dad.

Yeah, because if I took the covers off, he got mad because it was cold. And so we, you know, when he took them off, because it was warm and too warm, then he started his day differently.

So yeah, just trying to find those things that would just encourage him to do what we needed him to do without having to, Tipa Snow always talks about, if you're pushing your agenda, they're going to push back because they feel that, even if it's not

a big deal. So learning how to create that desire for them to do what you need them to do is definitely the best way to handle it. Not always easy, but you can find lots of things.

Another thing that we found for my dad, he played professional baseball when he was young. So he always wore a baseball cap. And when he put that cap on, he was going.

And so at one time, we had left the ball cap upstairs on the back of the couch. He would put the ball cap on and he'd be ready to leave. So people talk about sundowning and that kind of thing.

It was more of that mentality. He'd find that ball cap and put it on. You weren't going to stop him without making him very angry.

Put the cap away, it's so hard.

If it's that easy.

But really making sure that when he came home, we took the baseball cap, we put it on a certain hook right by the door, which was downstairs out of sight from our regular daily routine until we were ready to leave.

And if there was a time that we needed to leave and he didn't want to leave, you could get the jacket and the ball cap and he was ready to go.

So just looking for those triggers became really easy ways to help bring something that could be challenging into a place that was easy.

Yeah, that's really interesting. And to be able to detect that and to know that that was the trigger. Everybody needs that.

If it was that simple. But it wasn't simple, of course, when you were going through it. But when you made that link and that connection, the ball cap means we're going out.

Oh, he wants to go out. It's not a good time for him to go out. Let's hide the ball cap or place it somewhere else.

Yeah, great, great ideas. I'd like to take you back to your mom.

When you were a teenager, and her having dementia and not knowing that you were going out, and you could tell her until you were blue in the face and she wouldn't remember, that must have been really frustrating for everybody.

It was really hard and honestly, it was back in 86. And so there was so little information out there. That though we had a diagnosis, my dad knew, he didn't know.

He didn't translate that to daily activities. So I was in trouble a lot. And when my sister was at home, then we could kind of team up and say, I know you told her, I was there when you told her.

But I learned to write things on the calendar. And so if I was in trouble, I could go back to the, we had a desk calendar in our kitchen, and I'd be able to go back and say, see mom, I was at ball practice.

Or, you know, but it was really hard because I can remember my aunt saying something about something I had done, and it wasn't true. And I can just remember thinking, why is my mom lying about me?

But obviously, I can look back now and realize that she just didn't know, she didn't remember, or she just got it wrong. So it was really challenging. My faith has always been a really important part of my life.

And I can remember in that season of life, a lot of nights just crying myself to sleep and just talking to the Lord about it. Because nobody else understood. I didn't have any friends who got it.

My sister was off to college. My dad didn't really understand either because mom was just trying to do whatever she could for him. And so it was just she was a stay-at-home mom.

She was the one that I went to for all of those things. So it was really difficult. I think looking back, I see how hard it was at that time.

Going through it, I just really remembered the impact of realizing that my mom had a terminal illness and I didn't really know what that looked like, but I knew what we were living through.

You were thrown into it. Early onset, like she was very, very young.

Yeah, very young.

And it was still, like you said, back in the 80s, it was still relatively not well known about dementia period and then early onset. That's even more rare at that point.

Well, and I had done research for my high school English paper on Alzheimer's, and at that point, they were telling me four to six years is all we could expect her to live.

So even as I was making decisions about going off to college, and I'm thinking my mom might not be alive when I graduate.

So my dad was very wise and realized that those things were influencing my decision, and then he said to me, you know, Rayna, I've got her. You go and live your life and be happy and do what you want to do because your mom and I will be okay.

So I was really thankful for that.

He sounds remarkable.

Yeah.

He does. So your mom had told her sister what you were doing according to your mom's mind, your mom's reality, and that was completely, no, I didn't do that.

It wasn't true at all. Yeah, I can't even remember when it was, but I know it wasn't true. I remember just thinking, why is she lying about me?

Another thing that really stood out when my sister was still home, we had been at softball practice together. She was a senior, I was a freshman, and we had come home after softball practice and she was getting on to us. I didn't know where you were.

I was worried sick and I'm like, I know we told you and I can remember her saying to me, actually to both of us, she's just said, why are you trying to make me think I'm crazy?

And I look back on that now, understanding the disease so much more and it breaks my heart of what she was going through. I couldn't even imagine what she was going through. My mom was nonverbal probably four years into her diagnosis.

So I'm off to college and I come home and she couldn't talk on the phone. She couldn't initiate a conversation. She might be able to tell me, yes, she wanted a hamburger versus chicken.

Those simple types of things, but a real conversation was not had.

I can remember being 20 years old and engaged and planning my wedding and taking my mom shopping and putting the dresses on her and pointing to the mirror so she could see herself and I bought her the dress that she smiled the biggest at when she saw

herself in it. So it was not a normal mother-daughter relationship at all because she lost that ability to communicate so early on.

But it had been. You had had a normal mother-daughter relationship.

Yeah. She was an amazing mom. Yeah.

That's even more difficult to hear.

Difficult for you to go through.

Yeah.

But yeah, I just, I had to take you back to that. Sorry, it might be cruel of me, but I just thought, you know, how responsible of you as a teenager to say, this is what I'm doing. And then it's in thin air.

It's gone.

Yeah. Yeah, I was really a good teenager. I don't think I always felt that way.

Just with the situation that we were in, but I'm thankful that my dad, looking back, we had a conversation later in years, later that he said, you know, you were the one who said to me something's wrong.

And he said, that's what made me talk her into going and getting tested.

Wow.

So he was listening, I just didn't feel like it at the time.

Oh, he was listening, he could listen.

Yeah.

Oh, that sounds like a very interesting upbringing that you had. And yeah, you were definitely insightful to notice what worked and what didn't work and to offer solutions. I think you've got such a great wealth of things to share with people.

So from your caregiving, you have moved on, they've both passed. So tell me how you use your experiences now to help folks.

So the first thing, one of the first things I did after my dad's passing was I wrote a book, and I am definitely not an author. It's still uncomfortable for me to be called an author, mainly because actually I just never really enjoyed writing.

So I really felt called because I had multiple people tell me, in fact, at my dad's funeral, the director of the day stay that he went and stayed at came with another worker and she gave us a big hug, and she just said to me, you girls need to write

a book. And I was like, really, why would we do that? And she said, the way that you honored your dad, she said it just was amazing to me to see. And I knew she had years of experience and it just stuck out.

I thought, wow. And I had other friends say to me, Rayna, you know, what you did and how you did it, you need to tell people. People need to know that there's different way than what most people are doing.

And I really fought it for quite a while. And I felt like the Lord was like, you know, I, yeah, this is what the path is that I have for you. And I was like, okay, Lord, we're going to write this book, huh?

And I'm really thankful I found some coaches that helped me and we were able to really, for me, the number one thing was this is just how my brain works. So I'm problem-solving all the time. This just seemed logical to me.

This seemed easy to me. And so it didn't seem like a big deal, but other people were looking at things saying, oh my gosh, I would never have thought of that.

And so that's how the things that I put in my book were the things that I felt like other people said, no, that's not normal.

So being able to just offer a different perspective, a little bit more insight into other choices besides just the typical black and white that most people do.

I think one of the things that comes out is just looking at the person, not just their care needs, not just those daily living activities which they need help with, but their core needs. Who are they? My mom was a stay-at-home mom.

She loved to fold laundry. She loved to listen to music. She loved to be at home.

My dad was an outgoing, athletic, let's go and do kind of person. If I had put either one of them in the opposite place and I treated them the same, we would have had a really, really difficult struggle.

And that's part of the reason why placing my dad in a memory care unit didn't make any sense. I went in there and they're thinking exercise is chair yoga and I'm going, he bench presses 100 pounds.

It just didn't make any sense to try to put him into this square or round hole when he was square, whichever way you want to look at it.

So those are the kinds of things that I brought out in my book is how do you look at who the person is and what they love and modify that. Some of my favorite memories, we found ping pong again.

My dad and I played ping pong when we were young, when I was young. And we were looking for activities that weren't outside in the hundred degree weather in Missouri. And I bought just a little net to go on the kitchen table.

And we played for two and a half hours the first time we played. And within a month, we had a ping pong table off of Craigslist. And we played three weeks before he passed away.

So just some of those ideas of how do you find what they love and give them what they can still do. How do we modify it? How do we make it best for them?

So my book is No Regrets, Hope for Your Caregiving Season. And I just offer 10 chapters of kind of how I cared for them in different ways.

And then the last six chapters are how to take care of yourself, because I think that's just as important as caring for them. We are daughters, we are wives, we are mothers where there's so many different roles.

And when we allow caregiving to overcome all of it, we bury them with regrets, we develop anger and bitterness, and all of those things that are ugly and we don't want.

So it's important to find how do you stay true to who you are as well, and honor that even in your caregiving season.

I think that's really wise and really important. And you said, you know, caregivers get lost in the caregiving. And who are you?

Who were you? And you still are. So you don't want to be a were.

You want to be a, I'm still Rayna. I still am living right now to the fullest. I happen to be looking after my dad or my dad and my mom, but right now I'm still me.

So that's wise. Yeah.

And that doesn't happen without being intentional. So you really have to go about it in an intentional way in order to be able to maintain your identity. The other thing that I think is important is realizing you can't do everything.

And in different seasons of life, you might have enjoyed that before, but it's time to let it go for a little while. It'll be there when your caregiving's over.

You can come back to those things that you loved, or you might find new things like I have with with writing a book and speaking and coaching and all the other things that I enjoy now that were not a part of my life before caregiving.

But I can also go back to those things that I loved while I was caregiving as well.

So practically, writing a book, you are a teacher, so you do have some English skills. How much of a stretch was it to actually write a book?

So again, I'm just so thankful because the Lord is so good. The coaches that he brought to me helped me put together that outline, helped me to weed through what was important and what wasn't important. And then it was an interview process.

So I got to talk. And then we transcribed what I talked and we took that and turned it into the book. So I didn't have the challenge of sitting and looking at the white paper.

I didn't have the challenge of worrying about my grammar because I had an editor to do that.

And so I had the best way of all in writing a book, partially probably why I feel like I'm not really an author today, but that opportunity of using my strengths instead of those weaknesses of writing and worrying about writing it right and all of

those things. I love to talk. So I got to talk through the concepts and the ideas, and then we were able to take that content and turn that into the book.

Whose idea was it to do an interview style?

I actually, the Lord just brought me to a friend who had done a book that way. He referred me to his coaches and the door was just open. So I was so thankful that I met them, and that was their process.

Oh, I love that.

That's new to me. That's new to me. Like, I've seen people speak in an interview format, but never write a book that way.

Interesting.

Hmm.

Glad I asked that question. Good. So you're also a coach.

Yes.

So let's talk about that.

Yeah.

I started my coach training before I was caring for my dad. I was teaching part-time. I have a reading specialist degree, so I was doing that part-time, kind of looking at what was coming next and found coaching.

So I started my coach training before I was caring for my dad.

And while I was caregiving for my dad, I finished my coaching training and actually was able to coach while dad liked to go to bed early, so put him down about 730, and I would still have time to have clients in the evening or when I was at home on

the farm. So I love coaching. Coaching is such a beneficial activity for a person that has a lot going on in their life.

And it's difficult with caregiving because there are so many things that are popping out at you all the time, but I think the key with coaching is it's just creating space for you to really hear your heart and to really think through things in maybe

a different way. So as a coach, one of the things I love to do is just ask questions that help you change perspective or see a little different mindset.

And then if, you know, if the situation's correct, then give you maybe some ideas of things that worked for us. But mainly it's really having a space to slow down your own thought process, think through what's important to me.

Now, how do I accomplish that? I kind of learned to coach myself every week on my way home by asking myself questions. One of my first questions was, how am I?

I don't think we ask ourselves that often enough. I'm tired, I'm sad, I'm frustrated, I'm thankful, I'm happy, whatever the feelings were at that time. What do I need?

Everything depended. Sometimes some weekends had been rough, I needed more rest. Sometimes I needed more time to be creative.

I had a friend that I would call my funny friends and I'd be like, I need time with her because I just need to laugh. What do I need? And then I would ask myself questions about my dad.

How is dad? How does he seem? How is he emotionally, not just physically?

What does he need? What do I need to put into place to help meet those needs? I'm not always the answer to his need, but I can help problem solve his need.

And so I learned to ask myself those questions, but I also had coaches that I was working with through training and after, that can help me to explore more.

And I think that's part of why I was able to stay healthy emotionally and maintain relationships and keep my identity through my caregiving, was because I was really intentional about it. Because I understand what coaching can do for you.

Well, and that's self-care. So that's your six chapters in your book. Yep.

Very much so.

You say it's intentional and it does take effort.

It does.

Yep.

And it takes discipline. Because I know for myself even to quiet my mind, it's hard to ask myself questions. I don't do that.

Right.

Because I don't know if I want to hear the answers.

Sometimes it's easy to avoid them when we're relying on ourselves to do it.

That's where a coach can come in handy because they're going to ask them whether you want to or not.

They're going to push, aren't they? You're going to push. See, that's why I didn't want to be interviewed by you.

Like it could be a therapy session that I don't want to be part of.

The good news is you make the choices of what your next steps are. So you can either change with the new information or you can stay the same. That's your choice.

Yeah.

I always said as a social worker, the person I'm talking to is the expert. I am not the expert. I just help them to discover what's already there.

And it sounds to me like that's exactly what you do.

Exactly what coaching is. Exactly.

Yeah. And I did it not knowing that back in the day.

Yeah.

Back in the day. I know that now, but back in the day. Yeah.

So coaching, written a book, and podcasting.

Yes.

So let's talk about your podcast now. Yeah.

So my podcast is A Season of Caring, and it is five years old now. So it's been a lot of fun, met amazing, amazing caregivers. I started doing a little different formats, but today I just love to share caregiving stories.

So I call it Stories of Hope. And I asked caregivers to show us where God is in the middle of their caregiving season. It is such a difficult season of life for so many reasons.

There's so much grief involved in it. A lot of those things that we talk about with our own emotions, that reminder that God's right there in the middle of it, can make such a big difference or it did for me. So I love to share those stories.

Sounds like you walked arm in arm with God through yours.

Yeah.

I don't know how I would have made it without it. So thankfully at that early stage, that's the very early season of my life. That was where I turned.

And so it's always been a part of how I make it through the good and the bad that we call in life, right?

And now you just highlight that for folks. No, I'm glad you have that podcast. And I think you'd be a great host, because I really do enjoy talking to you.

And you've said a couple of times now how much you enjoy speaking and talking. So putting all your gifts together in one amazing podcast is a great thing. So what else would you like to share with the listeners today?

The one thing that we've hit a lot of the things that I think are really important, but it's really just in caregiving is realizing how important it is for yourself to be able to care for others.

I think sometimes we think that it's not important, but your role is so important.

And as you walk them all the way home, when you look back, you're going to cherish those, even the hard times, all of those times that you had with a person that you're caring for.

So don't underrate what you're doing now and how you're spending your time now. I would also encourage you to go ahead and take pictures, because as I look back, it's a funny thing to mention, but as I look back, I wish I had more pictures.

And your phone has that camera right there in there. Just use it. Take pictures with you and the person that you love, not just of the person that you love.

My mom was our family picture taker, and out of thousands of pictures, I have very few pictures of me with my mom.

Because she was always behind the camera.

She was the one behind the camera. And with my dad, I did a little better because I had that phone so I could take pictures, and I took selfies of us together in different times. But you're gonna want them.

So I would just encourage you to do that. Make memories, be intentional about those experiences. Staying in the moment is one of the most important things you can do as a caregiver.

Not borrowing trouble from the future, or not feeling guilty about the past, but staying right there in the moment with them. But intentionally making memories with them in moments that they can enjoy.

That simple go and have an ice cream cone and take a picture of them joyfully eating that ice cream cone will be something that you will really cherish.

So I just like to encourage people to think about how they can capture those, how they can make those moments and capture those moments because they're gone before you know it. And you're gonna miss them. So cherish them while you have them.

So that leads into the title of your book, No Regrets.

So you really do embody that. That's yours. You own that.

So you found ways to not have regrets through your caregiving. And you want that message to be shared with others.

Definitely. Sometimes people push back and say, well, Rayna, how can you say you have no regrets? I think part of that comes down with how you define regrets.

But to me, I think I have a growth mindset. So I have a way of looking at things that I'm not failing. I'm just finding what didn't work.

Right?

And so caregiving is full of that.

There's all kinds of things that you can look at and go, oh, I wish I hadn't done that. But you can also look at it and say, well, that didn't work. What will work?

What could I try that will make this better? This isn't working for me. This isn't working for them.

This isn't working for my siblings. Whoever it is, what will work? How can I make it different?

So that I can look back and say, not that I was perfect, but that I don't regret any of it. Going wholeheartedly into it and doing the very best that I could with what I knew at the time.

That's really interesting. And where do you think you got that insight from?

One of the things that as I look back about my mom and who she was, I realized when I was learning about coaching, about a fixed mindset and a growth mindset, a fixed mindset is failure, is struggle, is I can't, I never have been able to, I never

will be able to, that kind of mindset. When I was young, I did not learn to read. And by the end of first grade, I was behind. I actually tested to be in learning disabilities class in second grade.

And when I got to thinking about a growth mindset, it's actually my mom's voice. And I hear it all the time, you can do it, Rayna, just try again. And I spent the number of hours we spent at the kitchen table working on my spelling words.

I hated spelling, and my mom would drill me and drill me and drill me. And she always was like, you can do it, Rayna, just try again. And so that's the growth mindset that I have.

The voice of my growth mindset is my mom. And so I love that that's what I remember most about her, is just always encouraging me to never give up.

I love that. Thank you for sharing that. And I just sense that you hear her voice even now, just encouraging you on as you move forward.

And I love that.

Do I know things, more things now than I knew when I was caregiving? I do. I've gone back and gotten training from Tipa Snow.

I'm a trainer. I go out and help other people understand dementia better, how to work with people in a way that helps everyone involved. Did I know more taking care of my dad than I knew taking care of my mom?

Oh, a whole lot more. I was older. I'd experienced a lot more in life, but there was more about dementia available as well.

So there are a lot of things I could look back and say, gosh, I wish it was different. But that's not what it's about. It's about being able to look at it in the moment and say, what can make it better?

And I believe that every step of the way, I made his life better. I made my life better. I made my relationship with my sister better.

I have so many things to be thankful for that I don't regret. I don't regret taking the time to spend with him and investing in our relationship, even when my dad wasn't the same dad that I had always known.

I don't regret the time that I spent away from my dad, that I missed things with my own husband and my kids. I have memories that I will never be able to make with my dad.

I wouldn't be able to make those memories today, and I still have those other people in my life.

So, I think a lot of it is a mindset, but it is really challenging yourself to say, you know, what will you regret later, and what could you do different in order to not regret it?

Again, you're thinking and you're asking those questions.

Yeah.

So, you're planning. Yep. And going back to when you said about mistakes, or not calling them mistakes, or not calling them regrets, but if you hadn't done something one way that didn't work, you wouldn't have found the way that did work.

That's right.

So, it is a win.

It may take a few missteps to get there, but it is a win.

Yeah.

And you're learning things that really helped you, that can really help others.

Exactly. Yeah.

And you're a teacher, so you can teach. Yes.

And I love to teach, so.

And I think, you know, you've got the Tipa Snow Training, but to have the lived experience combined with that training is so meaningful and powerful.

It's powerful to be able to say, this is what we found. And for me to even be able to look back and say, oh, I wish I'd known why he did that. And a lot of it, you do experience it, so you figure it out of why they respond in a certain way.

But, you know, I think if we can educate ourselves, then we don't have to make quite so many missteps. But the same thing doesn't work for everyone for sure either. So having different opportunities.

You also said before, if it worked one day, it might not work the next.

It might be different the next day.

Yeah, the disease progresses, the brain changes, and things that always worked before don't. So you just have to stay flexible and keep trying.

I was going to say, yeah, you have to be very adaptable. Flexible is a very good word. And I'm glad you chose it, Rayna.

Yeah, it's so funny, because one of my very first job evaluations said I was rigid.

That's what I think. Because I do like routine. So it's exactly learning as a caregiver.

There are things you just have to do differently. No matter how you think you're wired, you'd be surprised how you can adjust and make things the way they need to be.

But you're motivated by love as well for your folks.

Yeah, definitely. And I was blessed to have a good relationship with my family. And I hear that from other people that, well, but Rayna, you got along with them.

You wouldn't believe how terrible my parents were. You wouldn't believe what our relationship is like. And I think that's hard.

I can't imagine having somebody who was unkind all the time.

But I also found that when the unkind words came, there was a way to see through that and understand that it came from frustration and it came from the confusion that they were experiencing and how can I make that better for them. So it still hurts.

My dad had unkind words. My dad hit me at times. I learned from those things and tried not to do those again and tried to find ways to reach and help to calm that confusion and that fear.

And so I think it's difficult when you have a history of difficult relationship to look past that relationship and look to the person, but that's always my encouragement is how can you find forgiveness for the past and be right here in the moment?

And right here in the moment, I didn't want to have to take my dad to the bathroom. I didn't want to have to see him in that way, but I wasn't going to leave him where he couldn't figure it out himself.

And so it became a lot easier than I ever imagined it would be to step into those needs and just help take care of the needs he couldn't take care of himself.

And how was your sister accepting those tasks as well?

So my sister and I, one of the things that I think many people say is we were raised by the same parents, we have the same parents in the same household, but we are not even close to the same person.

So it was funny because it was hard for her in different ways. She didn't spend a lot of time with my dad. She was the one who took him to the doctor.

She was the one who took care of a lot of the scheduling and the back-end things. Like I said, she had school-age kids, so that was more challenging to be available for them. But she would always say, I am the spitting image of my mother.

I was about five inches taller than my mom, but I look exactly like my mom. So she would always say, dad likes you better because he thinks you're mom.

And there could be some truth in that, but I think the way that I engaged and the way she engaged, it just wasn't the same. So she struggled to get him to do the things that she needed him to do.

Now my niece, his granddaughter, could get him to do anything. And so she found ways to kind of team them up in that way and be able to accomplish what needed to be accomplished. But she did struggle with trying to navigate what she needed him to do.

And mainly that she had to do so much, take him to the doctor and things like that. So that wasn't fun. And you're on a deadline.

And so I think she had a tendency to push that agenda. And I learned quickly that I couldn't do that. I'm very strong-willed, very A personality, very much like my dad.

And so if I was going to push, he was going to push back. So I had to learn how to navigate that a little differently. Robin's a little more easygoing, a little softer spoken.

And so he, I think he could just tell her no. So it was a challenge. And we definitely experienced it differently when she read through the book.

I said, you know, anything we need to change, anything I need to say. And she said, no. She said, I just think that was how you experienced it.

She said, my book wouldn't look the same as yours. And that's the truth. And I think, especially when we're looking at taking care of parents, we have siblings.

Everybody has different gifts and talents. And one of the things that I've done is I created a quiz called Caring Quiz. It's available at caringquiz.com.

And it lists at different personalities. And my dad benefited from having all different kinds of people around him. Some of his favorite caregivers drove me crazy.

They didn't do all the things. And my sister with her checklist, you know, she wanted everything documented to a point that I wouldn't have asked for it to be documented that way.

But when he was running a fever or when he wasn't eating well or when we could look back and see what the patterns were, and we were able to provide much more information to the doctors and get better care for my dad because we had everything

documented. So I was good at setting up systems. She was really good at all the details within the systems. We had people who were a lot of fun, that they laughed all the time.

And we had one caregiver, I could walk into the kitchen after he'd been there, and most of the doors were open on the cabinets. I was like, why would you not close the doors? But they had a great time together, and my dad really enjoyed him.

So when I was writing the book, when things that came to mind was, we can't do it all. And I used to say by the end of the third day, my dad was kind of like, when are you leaving? It's ready for different people and different exposures.

And so I think it's really important to consider that, that if you're doing it all, that you're robbing your loved one of the opportunity of having relationships with others, and that if you're a primary caregiver, that's a sibling, I hear it a lot

that, well, nobody else tries, nobody else helps, but you could also be controlling things to a point that other people feel like they can't, they can't do it right, they can't do it well enough. So you really have to stop and look at that for

yourself. But the caringquiz.com just lets you kind of see what your strengths are as a caregiver, and maybe then I also challenge you to explore your team and see if you're trying to accumulate people around you who are just like you, what things

Sounds like he had a really rich team.

We had, and over the four and a half years, it wasn't the same team for Darren Sherbert.

So we had a lot of different people involved in it, but definitely we are so thankful for those people that supported our family and helped us just keep him at home.

And you can easily close the cupboard doors after the caregiver left.

Yes.

And if you'd had a bad day, you could close them kind of hard.

Probably.

No, and I picked your sister, and the reason I'd asked that question was because I understood that you spent days with your dad and she also spent time with your dad.

And I just wondered how she managed the showering, because she is the administrative type. She is the one who is more list and task organized. That's her strength.

So that's why I asked.

So typically, because she had school-age kids, she spent the night and the caregivers relieved her and she went home and got her kids up ready and got them off to school. And so the caregiver got dad ready in the mornings.

So most mornings, neither of us had to be responsible for dad. It seemed like occasionally she might, but most often there was a caregiver that was able, had to be there because she needed to leave.

So it's a little different whenever I was living there. And I would go and try to sleep better, is what I would do once the caregivers got there.

But she mainly had those night shifts, and then like the day shift to be able to, the one day a week that he wasn't in day stay, she had a few hours.

But overall, she did a lot of the administration, and like I said, doctors and medications and all that fun stuff.

Sandwich Generation Caregiving.

Yes.

Totally.

We both did it in our own ways. My youngest was in high school. So, very independent.

My husband was able to, you know, and he was a great kid. So, we're very thankful for all the things he took care of on his own, but was at that point where he was busy doing a lot of his own things. So, not as difficult for me to be gone.

But your sister was going home to let her kids go to school.

Yes.

Get them up and get them off to school every morning.

That's a lot.

And then heading over to sleep at dad's when they were in bed, you know.

Sure.

Her husband was a great, they were a great team together, but definitely four and a half years is a long time to take care of those kind of things.

No. Well, you've gained a lot of skills, you've gleaned a lot of insights, you've written a book, you now help people with your coaching, and you're sharing your story today. And I'm just so grateful.

You are a very good speaker. So it comes through very clearly. I love the idea of an interview book.

Yes, yeah.

It was definitely made it totally doable. And one of the number one comments I get is that when people read my book, is they feel like they can just sit out and have coffee with me and read through that we're just chatting.

And I always laugh because we are. Whenever I was writing the book, it was questions being asked of me and me being able to share stories. And don't get me wrong, it was planned and organized of what we were going to talk about.

But being able to just be conversational about it, I think that's always the way we learn. I learn best, so I like to teach in that way.

And I learn through stories, so that works hand in hand. It works very well. Yeah.

Well, let's share how folks can reach you. If they want to reach out to Rayna and perhaps engage in coaching or get a copy of your book, how can they reach you?

The easiest way would be at my website, aseasonofcaring.com. So aseasonofcaring.com. And I do have some great resources available there.

I have the Caring Quiz available at caringquiz.com. I also have up on my website right now, it's just checking in on your well-being. I think as a caregiver, that's something we have to really keep in mind.

So if you sign up for any of those kinds of resources, you can also be on my email list, but feel free to reach out. I'm on Facebook, Instagram, LinkedIn.

So any of those ways as well, I'd love to connect and just even have a conversation about how you're doing and any challenges that you're facing.

Oh, there's a lot of challenges coming your way. I can just sense it. They'd all be caregiving related.

So you've shared so much today. What is one tidbit, a personal tidbit that you wouldn't mind sharing with the listeners?

How? Keep doing what you love. Remember to find those things that you love and keep engaging in those things.

One of the things I found during my caregiving when I was feeling grumpy and not energetic, I started to realize that I'm really creative and I was not having a creative outlet.

And because of some of the things I had to drop off of my plate in order to add caregiving on to it, that was something I had let go of. And so I picked up my knitting or my crochet hook again, and I started crocheting things.

I also took an online art class. So find ways to feed what brings you joy, no matter where you are in your season of life.

And maybe even look back at some of the things you did when you're younger and see what can bring you joy that you haven't done in a while.

Great tip. Crochet, huh?

Yes, my mom taught me.

Oh, neat, neat. That means it's even more special.

Yes.

I could never learn how to crochet. I can do a chain. I can do the chain.

And apparently that's the basis of all crochet. But beyond that, I can't progress.

Do you lose count? Is that what happened?

I have no idea. I don't know how to go back into stitches and stuff. So I can make a really long chain.

You got to turn and go back the other way.

Yeah, that's where it gets scary.

I can see why you're a coach and a teacher. So this has been a lot of fun.

I think we've had some good moments of laughter, which is so important, like you shared before, that it's really important to have those people in your life that do bring you joy and do bring out the laughter because caregiving can be very serious.

Yes, so definitely.

I want to thank you.

Well, Alison, it's been wonderful. Thank you so much for letting me jump on your podcast and just have a conversation.

I love that you jumped on and you were welcome to stay.

Thanks.

Take care.

I hope like me, you appreciated hearing Rayna's story and her innovative problem-solving techniques, such as the simple solution of changing the environment to encourage her dad to get out of bed and learning that her dad associated his ball cap was

going out. Once she figured out that connection, it was easy to use the ball cap as a visual prompt when it was time to go out, or conversely, to put it out of sight when it wasn't. This was one example of knowing her dad so well.

Another was knowing that chair yoga just wouldn't cut it for her dad, who could bench press 100 pounds.

She knew her mom well too, and she used this intimate knowledge when addressing both their core needs in addition to their care needs related to activities of daily living. Rayna expressed no regrets regarding her caregiving experience.

She even titled her book, No Regrets Hope for Your Caregiving Season, and acknowledged that adopting a growth mindset allowed her to evaluate what worked, what didn't, and what could improve her caregiving experience.

Part of having no regrets included having a caregiving team. Rayna reminded us that we can't do it all ourselves.

You can check out the caringquiz.com that she developed to explore the different personalities and unique strengths and talents that contribute to a good caregiving team.

One more of her tips lending to no regrets is to take pictures and create memories. If you are in the midst of a caregiving journey and would like to reach out to Rayna to learn more amazing tips, her website is aseasonofcaring.com.

Or you can tap in to alongsidecaregiverconsulting.ca or alongside Caregiver Consulting's Facebook page or Instagram account. Thank you for tuning in today.

And to Rayna Neises, thank you for sharing your insights, your wisdom and your caregiving journey. If you enjoyed today's episode, be sure to tell your friends and other caregivers about it.

And if you don't want to miss future episodes, please subscribe to the Island Treasures Podcasts. See you next episode!