Love Conquers Alz

RAYNA NEISES: The Story Nobody Wants - The Loss Both Parents to Alzheimer's 20 Years Apart

July 31, 2022 Rayna Neises, Susie Singer Carter and Don Priess Season 4 Episode 58
Love Conquers Alz
RAYNA NEISES: The Story Nobody Wants - The Loss Both Parents to Alzheimer's 20 Years Apart
Show Notes Transcript

Our guest, Rayna Neises, has the story no one wants to have. Rayna  lost both of her parents to Alzheimer's disease 20 years apart.  Her mom was diagnosed when she was just 16, living 12 years with the disease.  Her dad lived 14 years with the disease being diagnosed just 6 years after her passing. But even still, Rayna feels blessed to be able to share her family’s story of journeying through Alzheimer’s Disease in her book No Regrets: Hope for Your Caregiving Season.

Rayna understands the joys and challenges that come from a season of caring. She helped care for both of her parents during their separate battles with Alzheimer’s over a thirty-year span.  And she is able to look back on those days now with no regrets – and she wishes the same for everyone caring for aging parents.

No Regrets: Hope for Your Caregiving Season, is a book filled with her own heart-warming stories and practical suggestions for journeying through a caregiving season.

Rayna is an ICF Associate Certified Coach with certifications in both Life and Leadership Coaching from the Professional Christian Coaching Institute.  She is the host of “A Season of Caring Podcast” and a passion speaker.

Rayna lives on a farm in southeast Kansas with her husband, Ron, and small pack of adorable dogs. She is the baby of her family, but most would never guess that. She is a former teacher and enjoys crafts of all kinds and spending time with her grandkids most of all.  


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Don Priess:

Alzheimer's sucks. It's an equal opportunity disease that chips away at everything we hold dear. And to date, there's no cure. So until there is we continue to fight with the most powerful tool in our arsenal. Love. This is Love Conquers Az is a real and really positive podcast that takes a deep dive into everything. Alzheimer's, The Good, the Bad, and everything in between. And now here are your hosts Susie Singer, Carter, and me, Don Priess.

Susie Singer Carter:

Happy Mother's Day. This is Susie Singer Carter,

Don Priess:

And I'm Don Priess and this is Love Conquers Alz. Hello, Susan.

Susie Singer Carter:

Hi, Donald. Happy Mother's Day. How are you? You're kind of a Mother!

Don Priess:

Thank you, happy Mother's Day to you. At times, I do I feel the stress of motherhood all the time.

Susie Singer Carter:

You really do and you stepped into

Don Priess:

without any of the benefits.

Susie Singer Carter:

Don is the mother to my dogs. He's never had dogs in his life. And somehow he's my dogs have adopted him. And he's the go to person for everything. And, and he he's and he loves them. He does tries to pretend like he doesn't, but he does.

Don Priess:

I do, but what will I get for Mother's Day tomorrow from them? I'll tell you nothing.

Susie Singer Carter:

I'll tell you what they'll do. And nice couple spots on your carpet and

Don Priess:

That's true. They do give and give every day. They give a lot. Daily.

Susie Singer Carter:

They like to share, they like to share with Don. Yeah. You know, but yeah, by tomorrow, actually, if you're listening to this now, tomorrow is Sunday. It's going to be Mother's Day. And I'm celebrating

Don Priess:

a unique Mother's Day tomorrow.

Susie Singer Carter:

Yes. My mother is still with us (spit-spit) knock wood. And hopefully she'll be here for tomorrow. And it's going to be four generations of of chicks. And we're going to celebrate the best we can. And we're going to be very very grateful that my mom is still with us. And she's going to party we're going to make her party. She doesn't know it yet but we're gonna party!

Don Priess:

The romm will be jumping tomorrow.

Susie Singer Carter:

No, it's gonna bump we're bumping the bed tomorrow. Yeah, bumping the bed. And it's going to be good. And yeah, if I can get a smile out of her and a laugh. Yeah, I'll do anything.I'll strip for... I will do a striptease, whatever it takes. I will make her smile...

Don Priess:

Which you do often.

Susie Singer Carter:

I do.I do.

Don Priess:

I can tell you how many times I've walked into that room and just butt naked.

Susie Singer Carter:

You know what mind your business, just mind your business.

Don Priess:

Is it wrong?

Susie Singer Carter:

It's not wrong. We do what we have to do.

Don Priess:

It's not wrong. Absolutely, whatever it takes to get through this caregiving journey.

Susie Singer Carter:

I'm telling you. Last week, my mom was in the hospital again. And she was sharing a room with somebody and there's a curtain and I was you know, trying my best to keep her uppy puppy and happy and and we put on music and I put on a broad like a Broadway thing on my Amazon. You know, that does a medley. And and so I started dancing to Chicago. You know, I was selling it. I was selling it. I was bringing it home.

Don Priess:

A lot of razzmatazz?

Susie Singer Carter:

A lot of razzmatazz, left to right. And don't you know, the nurses came in and started. We were everybody was in there and we had a great time. Things are getting knocked over. Like catheter. It was a mess. But everybody was having fun. So I highly recommend that. You know?

Don Priess:

Right out of a Nancy Meyers movie.

Susie Singer Carter:

Yeah, totally. My life is a Nancy Meyers movie. With tears, I'm doing this.

Don Priess:

It takes a lot.

Susie Singer Carter:

Yeah. I'm shuffling up to Buffalo out the door with tears because, you know, I don't like to cry in front of my mom because I don't want to make her feel bad. So anywho but we have another we've great guest... Maybe you should ask how are you? How are you, Don? You, Don. That's you,

Don Priess:

Whatever you say? No, I mean, I'm fine.

Susie Singer Carter:

I'm so powerful!

Don Priess:

I just react. Yeah, I just react to whatever's going on. And You know it's been a it's been a very interesting time I don't know if interesting is the word challenging and

Susie Singer Carter:

He's talking about about my caregiving is what he's talking about because your journey journey, everyone should have a BFF like I do, but don't - but you can't have him. Cuz he's already taken.

Don Priess:

Because I'll be with her. Yeah, no, I mean it is it's and you kind of and I've been I've been like, have a front row seat to what what Susie's and Norma her mom has been going through. And it's... uh, sometimes it's harrowing and horrifying. And but more more often it's beautiful. And, you know, what this person has done here. It's, it's remarkable and what she does every day because she you know, she does it every single day. And she

Susie Singer Carter:

I just put on my mascara...stop. is razzamatazzing. I have mascara that I've got some new stuff that doesn't run now. So because because I've turned into I've turned into my mom, I cry at the drop of a hat if you say anything nice to me. i Yeah. And if you if it's sad, blech..

Don Priess:

I keep telling you to stop wearing hats and you'll cry less.

Susie Singer Carter:

Why is that? Why is that?

Don Priess:

Because you keep dropping them you keep dropping them and then you're then you cry at

Susie Singer Carter:

the drop of the hat. Oh, I got it. But see, I'm tired. This is tired. It's very slow.

Don Priess:

These are the joke people. These are the jokes.

Susie Singer Carter:

I took you seriously because I'm so sensitive right now. What's wrong with my hat?

Don Priess:

No just stop dropping it because I'm tired of the tears. Well, it's all just just ties in beautifully with what we the person we have on today.

Susie Singer Carter:

We do! We have someone who's very simpatico with us with our philosophy, right? Just take whatever thing I've done and multiply it by two with our guest and still she smiles. And still she is happy and and and is gracious and generous with with what she's learned in her gifts. So introduce her, Don,

Don Priess:

I wil.l Rayna Neises understands the joys and challenges that come from a season of caring. She helped care for both of her parents during their separate battles with Alzheimer's over a 30 year span. To help others through the trials of caregiving. Renya became an ICF, associate certified coach with certifications of both life and leadership coaching. She's a host of a season of caring podcast and offers care coaching through her website, a season of caring.com. She has also written no regrets hope for your caregiving season, a book filled with their own heartwarming stories and practical suggestions for journeying through a caregiving season. Helping others is her passion and her insights are truly invaluable. And we are thrilled to have her here today to share that passion with us. So without further ado, let us say hello to Rayna Neises. Hello, Rayna.

Rayna Neises:

Hi, so good to be here with you guys.

Susie Singer Carter:

Hi Rayna. So happy to have you here. I am marveling at the fact that you went through this journey twice. And I want to hear all about it. I just want to say I love your frame of a season. And I love that I think it's beautiful and very poetic and very, very accurate. Each part of the of our journey is a season. And I love I liked looking at it like that. So thank you for that. That frame. I like it.

Rayna Neises:

Thank you, I think it's so important to look at it in that way. Because as you were talking about the journey can be so long, that sometimes we can forget that there's life after it as well. And so when we really frame it within a season, we understand there's seasons within the caregiving itself, but there's also seasons after it. So it's important to keep that in mind.

Susie Singer Carter:

Agreed. Agreed.

Rayna Neises:

So I was 16 When my mom was diagnosed and she was just 53. So and you know, diagnosis never happens right away. Right? So when I look back at my childhood, I can see things that were happening, but it was it was so hard. You know, I think we we knew even after the diagnosis that she wasn't okay. But that didn't mean that we realized how much she wasn't okay. And so being a teenager, I had an older sister and she went off to college and it was just me and there was a lot of that challenge. Mom not remembering you know where I was and me getting in trouble because of that. And so it was a difficult relationship. And I would say by the time I went off to college, I can never remember having a phone conversation with my mom once I was off to college. She lost her verbal skills so early. Now she could answer you know, do you want a hamburger or chicken? There was still a lot of processing going on but her ability to come up with a word was just gone so quickly. And so she lived 12 years with the disease and most of that was nonverbal. But she was such a joyful person. She loved music, and she sang along with it. She talked a lot of gibberish, but it was really, she was very easy to care for my dad was her primary caregiver and he kept her in the home. Seven years after she passed, my dad was concerned for his own memory. And he was diagnosed first with mild cognitive impairment, and then it went into Alzheimer's. And we had a 14 year journey with him and lost him in June of 18. So that was the obviously most recent journey and also because we were his primary caregiver, my sister and I, so that all of those decisions, you know, they're, it's different when you're taking care of them like that, than it was being that support to my dad.

Susie Singer Carter:

Absolutely. And, and also like, what a what a pivotal time in your development as a teenager because I lost my dad, when I was 16. And he in a plane crash, so he was pulled out of my life. And, and, you know, 16 is such a, it's such a, important age for woman, I think, you know? It really defines a big change in our lives, and how we think, and it molds us. That year is really powerful and having your mom, there's so much going on with us at sixteen, and for you to have to try and wrap your head around what's going on with her when you need the attention at that time and you need the understanding and you need someone to reach to you and hard it must have been for your mom, too, being frustrated and not being able to be the mom that she wanted to be for you. It's it's it's very tragic. Like I I try to look for, you know, Silver Linings all the time in my journey. And I say, well, look, thank God, I my mom's had it for 16 years, thank God I, I've been able to go visit her. And I don't have to visit her at the cemetery right now. So I count my blessings for that. And I count the blessings that I had her for as long as I did, because I know what it's like not to have a parent in my life for a long time. So I feel for you and I feel you know, how did you get through that? How did you you must have gone through it by compartmentalizing and then you have looking back on it. You had to really retrofit how you were going to process that. So what did you do?

Rayna Neises:

I think that's really wise. I think there was a definite compartmentalization that happened. There was also a relationship with the Lord that really it it just became most important to me in my life. So most, I think the things I would have talked to my mom about sitting on the bed at night I talked to the Lord about I just prayed. And so that relationship grew really deep. But there was definitely a piece of compartmentalizing that, I think as I got older, I realized, okay, I really haven't, you know, process that I don't have a mom. And it was one of those things that I think it's a that's part of grief is that reoccurring, and like you said, this weekend can be a really tough weekend because we can miss so much of what we didn't have. And for me so much of my life. I didn't have that mom. So I knew she was an amazing mom when I had her here with me. But there's so many things in life I would have liked to been able to share with her that I haven't. So it's a it's a journey, I think grief and processing all of those things. It's a journey.

Don Priess:

At that age, was it a source of embarrassment, you know, within your friends? Or were you able to kind of whether you're able to lean on them, or was it kind of something you you put in the closet and then pretend it didn't wasn't there when you were not when you were with your friends?

Rayna Neises:

Yeah, I think they just didn't get it. And so I didn't really explain it. And really, you know, the diagnosis doesn't change anything you wish that there was like, oh, there's this stake in the ground. And from here on out, we know what's coming, we understand what's happening. And we didn't and we definitely weren't a family that talked about it. I you know, back in the day, we had more than one line, telephone line in the house and I picked up a phone line. That was the same line as my dad was on talking to someone else. And that's how I found out she had been diagnosed with Alzheimer's. So there wasn't a big conversation. There wasn't a lot that went on. My senior year, I did my research paper in English on Alzheimer's disease. That's how I learned about what was happening and what was coming. And you know, with her age group, she should have only lived four to six years. And so that was a point in which I was then like, Okay, do I go away to college because I'm gonna she's gonna die while I'm in college. You know, when I'm looking at that timeline, so it was difficult. I think for me, I just grew up really fast. I became very independent. I think I already had that streak. But I say oftentimes people don't I'm the baby of the family and most people would never guess it and I think that's because of just at such a young age having to process, you know that that mom wasn't there, my dad was great, but he had his own stuff to deal with. And honestly, I think he softened a lot. And over the years, we became very close and taking care of her. But my mom was a stay at home mom, she was the one who ran everything. And so he really relied on her a lot with that. And that didn't really change until kitchen fires and, you know, getting lost and not being able to find the car and all of those things that happened once I was off to college.

Don Priess:

Tha's part of those Silver Linings that you found, which was the changed relationship with your father, that never probably would have happened?

Rayna Neises:

Definitely.

Don Priess:

That's, that's one of those silver linings we talk about, you know, that you can take, at least as you know, as some positivity.

Susie Singer Carter:

As a kid. Yeah, of course. Yeah. There's always something that comes out of it has to be otherwise you're you're missing, you're missing out if you don't look. Right? So you how many siblings are there in your family?

Rayna Neises:

One older sister,

Susie Singer Carter:

One older sister. And so she is how many years older? I'm asking for a reason? Because I just,

Rayna Neises:

yeah, she's two and a half years older. So she was off to college, right when mom was diagnosed.

Susie Singer Carter:

Got it. And did you, do you think that she? She processed your mom's disease? Did... Did she take it easier? Or was it harder for her because she had more time with her? I'm always curious about that.

Rayna Neises:

Yeah, she really struggled, because they kind of had a butting head relationship before she went off. And that's when, again, when we think about how many long the symptoms are there before action is taken. Typically, it's a pretty long time. And so I think she and Robin had a lot of struggles with that. Where were you you weren't where you were supposed to be just a lot of those things. I can remember. My sister was a senior when I was a freshman, and we played softball on the school team. And we had gone out to get coax with the girls after practice. And we had told Mom, we were doing that. We came home and she was so angry. She didn't know where he were, she was really worried. And I can remember her saying to us, you're just trying to make me think I'm crazy,

Susie Singer Carter:

Right.

Rayna Neises:

So when I look at it from her experience, she didn't remember it wasn't like, she was trying to make things difficult. So I think Robin and mom just struggled a lot longer with that than I did before there was an understanding.

Susie Singer Carter:

Totally!

Rayna Neises:

It was just challenging.

Susie Singer Carter:

No, I get that. Because if you don't know what's happening, because I remember looking back at and, you know, I'm the younger one too, and always been closer to I think closer more intimately with my mom than my brother, you know, and we just have had a good understanding. But I saw the change well, before it happened because I saw her prickly she was getting prickly which that wasn't my mom. And, and, and primarily to me, because I think that she could feel safe to be more prickly with me. And it was hard. It was hard because I couldn't understand. And but then when I realized when she got diagnosed, I was like, okay, I get it now. She's fighting tooth and nail, right. She's fighting to keep her sanity. And so yeah, well, because I got the same kind of response from my mom...'Oh, stop it. You're trying. You're crazy. I'm not crazy.' You know?

Don Priess:

Yeah, your brother denied it, too. He denied that when you know, he just like, Oh, you're you don't know what you're talking about?

Susie Singer Carter:

Yeah, stop it.

Don Priess:

Because he didn't have that relationship he didn't even see either didn't see it or chose not to or a combination thereof.

Susie Singer Carter:

Right. Right. And it wasn't in our, in our experience. Anyway, none of us. We hadn't experienced anybody with Alzheimer's. We didn't know what it was. So, but I certainly knew my mom was there was something wrong. So yeah, but it is interesting how different siblings, you know, respond and and process it and, you know, get to that acceptance and either lean in or, or or run for the hills. Right?

Rayna Neises:

Definitely.

Susie Singer Carter:

Yeah, yeah. And then your dad, oh, your poor dad because God bless him because he knew what was coming.

Rayna Neises:

I think that was the most crushing thing for our family. I'll never forget my dad and I were in business together. He lived four hours from where we owned a Sylvan Learning Center. And one day I was in the office and he called me and he just said, you know, hey, Rayna, I think something's going on with me. And I'm like, what, you know, tell me what's going on? And he said, I think something's wrong with my memory. I was like, Oh, Dad, I'm sure you're just we're just sensitive. I mean, we're just worried about that kind of stuff. I said, I'm sure there's nothing to worry about. I because we were born later in my parents life, actually, all of my grandparents had passed before we were even born so we don't have a long line. You know, to say even what normal aging looks like and So I said, we don't even know what normal looks like he was in his early 70s. And I said, you know, Dad, I don't think there's anything wrong, but go to the doctor, just go and ask, it won't hurt anything. So mild cognitive impairment was that diagnosis after that conversation. And, you know, we were, as a family, we had taken my mom to a research center. And that's where the doctor had seen her, they tracked her the whole time, we were able to donate her brain when she passed away. And so when we started with my dad, we went to the same place and, you know, already had a relationship with that doctor, and that doctor hated us off to someone else. And about three years in, we were walking down the hall from a doctor's appointment, and she started talking Alzheimer's. And Robin and I just looked at each other, like, wait a minute, what did you just say? Because he had crossed over from the mild cognitive to the Alzheimer's, but they hadn't told us, you know, it's amazing to me, how few people actually get the diagnosis. They actually the Alzheimer's Association has done research that 50% of the people who have it in their charts have never been told why I think the doctors are helpless. And they don't want to give that kind of news without saying, Here's a fix, or let's work on doing something to help you. The medications. Sadly, my mom was taking the same meds my dad was taking, right? That far apart. You know, it's crazy.

Susie Singer Carter:

It is crazy. My mom's first diagnosis was mild cognitive impairment. I think that's the, you know, the nice way of saying I mean, it's, I don't think anyone just gets

Don Priess:

Early stages.

Susie Singer Carter:

Yeah, early stages. That's my, that was my understanding of it.

Rayna Neises:

Well, 50, they say 50% of the people with mild cognitive impairment go on to a form of dementia. So that leaves what 50% that don't or maybe pass away before they get a chance to? I don't know. But it's not a guarantee. At least that's how they described it to my dad. But it definitely, that's where we ended up. And so it's tough.

Susie Singer Carter:

It is very tough and go on, Don.

Don Priess:

Oh, no, it's gonna say going through having already gone through with your mother and then knowing kind of like, what the journey was going to be with your father. What were the I mean, obviously, you the horror of it, is there. But also, with the knowledge Did you feel like okay, I'm, I'm equipped now I can deal with this, or I was just kind of like, No, I'm, I can't go through this.

Rayna Neises:

Yeah, no, I don't think that was an initial reaction. At this point. My dad and his sister were living in my dad's home. So they were, you know, sharing a lot of the TAs doing things together. So it was helpful that we knew we had her at that point. But it definitely, it caused us to have conversations with my dad earlier on, than we would have if, if we hadn't known. You know, I looked even at the point, when we were planning my dad's funeral, we hadn't talked about what his funeral was gonna look like. I think that's one of the hardest things with dementia. And Alzheimer's is, you don't know the last time your parents gonna say your name, you have no idea the last time, you're going to be able to have that conversation that you really need to have. And so as we looked at, you know, how to format my dad's funeral, we looked at what he did for my mom. So I know, we didn't have some of the conversations that we should have had probably, but at the same time, we did have conversations about what was important to him, and, you know, requests of him to have certain things. And so I think that helped us to do that, knowing that we, what we were looking at,

Susie Singer Carter:

Right. Wow, I think about that scenario, obviously, because of my mom, I think about what would happen if I were diagnosed? And how would I? Once I got over the shock of it, what would I, how would I embrace it? And what would I do? And I would I would I, I you know, I think based on who I am, I would I would stand up and do whatever I could, you know, not to fight it. And because there's nothing you can do to fight it, but to make the most of it. And, and to, you know, at least whatever time that you have to make that time meaningful. Did your father do that? Or do you feel like he possibly lived a little bit in denial or...

Rayna Neises:

My dad was very physically fit and very active. And that was his passions. And so I think he lived out the best life he could live all the way through. And that was something that was so important for me to do is to continue to maintain his lifestyle as long as possible. And so he did, he traveled my dad played with this. When he was young, he played. It was a Brooklyn Dodger. And so as he aged, he played senior softball, and he traveled, they went to World Championships, and he had a wonderful time with that as long as he could. And we found ourselves in a place that when the doctor said it's time to stop driving, my dad was still playing volleyball. Three times a week and going to the gym three times a week now. And so for us, it was like, okay, the challenge is how do we maintain that for him. And we actually were able to do that until probably 18 months before he passed away before he stopped going to the gym and doing those things that he loves. So we really set him up to do that by bringing caregivers in to drive whatever it took. So I would say he, you know, really tried to make the most of life. And as things started to change for him, like financially, when he had started struggling with finances, he was quick to say, "Hey, Robin, I'm ready for you to take over the checkbook." So very thankful for the way he let those things go. But also, I felt like it was because we knew how to set the groundwork and really keep him involved in the things that he loved.

Don Priess:

So it was a very different experience between your mother and your father, like completely just as if it was almost two different diseases.

Rayna Neises:

Exactly. And that's one of the things when I think about why they're having so much trouble finding a cure for it is I think that it is so different in every person. Personality was very different. My mom was a homebody, she was a stay at home mom. So that was the thing she loved. She didn't leave the house. Three, four years before her passing. She just became very anxious outside of the house. And so we just were able to keep her at home. Dad, on the other hand, you know, we played ping pong, we went to the gym, he loved to be able to go visit his sister, you know, we got out and kept him busy. The busier he was physically, the happier. So yeah, all of our caregivers were expected to go and do right. Right. Very different.

Don Priess:

I get that literally wasn't lamenting, he was not lamenting it, he was living it, he was saying, I'm going to make every moment because what's the alternative? Right, either be down and depressed and just go into that dark hole, or live every moment as long as you can, which is by far not only easier on them, it's easier on the caregiver. By far, I mean, you know, because that you get into those things where you know, you, you feel guilty about living your life, because they can't live theirs. But if he's living his that's not there. And that's huge.

Rayna Neises:

And that's part of where I think the no regrets come from for me is that I did make sure my sister and I working together made sure that my dad was able to continue living life. And when I was looking at colleges and trying to make that decision, my dad said to me, I know what you're doing. Because I was looking at a college about 45 minutes away, or one that was about three hours away. He said, "You need to go where you need to go." And he said, "I got your mom, you don't worry about it." And so those words were so important to me that I was able to balance supporting and caring, the best that I could, and college life and married life soon after that, you know, all of those things. So that encouraged me that inspired me to find that balance for myself now. So when I made the decision to drive 220 miles one way to care for my dad, the last four and a half years of his life, that was with my husband's encouragement to do that. But literally, for the first two and a half years, I was there every Thursday through Sunday. And then we got to a point where I felt it on my cell, my body, everything was just getting really tired. And so I said, "Hey, I need more help." And we brought helping on the weekends. And so I was able to do every other weekend unless something was going on with him physically. So I was really thankful for him teaching me that life goes on. And that this is about both of us living and I often encourage people that I'm coaching, you are your parents legacy, they don't want you to stop living life, they want you to love them and honor them and support them. But they want you to live your life and to be happy and fulfilled as well. And that's not an easy place to find. But it's doable. And that's where the hope is in really being able to find a way to do both of those things.

Susie Singer Carter:

Right.

Don Priess:

Yeah. Because if they realize that you are there, you're in grief and darkness because of them that would make them feel horrible.

Rayna Neises:

Horrible.

Don Priess:

You know, as opposed to you are thriving and loving like you said, still caring and honoring them but thriving and being happy that that's all they would want.

Susie Singer Carter:

If they're...in most in most situations.

Rayna Neises:

Healthy people. Yeah, healthy relationships, healthy people. Definitely.

Susie Singer Carter:

Exactly. Yeah. Because I've had that, you know, I've talked we've talked to people that you know, don't have our haven't had a healthy relationship. And and it is hard. That's a whole nother conversation. Just to acknowledge those out if you're listening there, you know, definitely don't we, I totally we all do acknowledge that, you know, that's a that's a another box that you have to look into, because that that brings its own set of problems and and its own set of gifts. Because sometimes people that, when they have dementia, well, most times their filters go away. So you really get a sense of who they are in their core. And so if your relationship has been bad, it either gets worse, or it can get better, because whatever was, you know, whatever masks they were wearing are gone. And you get to see the real person. And that's, that's, that can be great. So, you know, but yeah, I do, I agree that, that if it's, if it's a good relationship, then you have they, like, my mom was like, You need to get, you need to put me in a home and live your life.

Rayna Neises:

So, um, you know, my dad asked to stay at home as long as possible. And so that was really marching orders for me. But I also had to say, that doesn't mean that he wanted me to stop living. That means that's what he wanted for him. And financially, he had insurance that had things that made that possible. And so that's what we did. We brought 24/7 Care to him. And I chose to be one of the hands on caregivers, my sister did a lot of the management, finances all of that stuff. So she was an integral part of it all. But she didn't spend the hours with him doing the physical things I did. So we both did what worked for us. She had young kids at home at that time, mine was in high school. So it was just different. We were in different seasons of life.

Susie Singer Carter:

And what prompted you to write the book, No Regret,

Rayna Neises:

I'm standing at my dad's funeral. Dad went to a de state program. And so we're really blessed to have a great program. He loved it. We never thought that he would, but he loved going to the club as what we call it. And the director came to the funeral. And she just wrapped me in a hug and she said, Raina, you you need to write a book, you and Robin need to write a book. And I'm like, oh, yeah, sure, whatever. But I literally asked as I talk to people about what we did and how we did it. That just came out more and more, you need to share this, we need to know how you did this. And through that, I just really felt called to do it. And it took me a period of time, it was kind of struggling on my own. But then I found some coaches that really helps me get the message really clear and allowed me to be able to do that. And it's been such a blessing to be able to share it. Many people say they feel like they're just sitting at the coffee table reading, you know, talking to me. And that was my goal was really just to share what we were doing all the things that we learned, of course, you can't share it all, but share the things that we learned. And so the first 10 chapters are a lot of those how to manage doctors, medicine, caregivers, I mean, you become a manager whenever you're caring for someone like that. And it's I think my small business ownership helped in that too. But then the last six chapters is that caregiving for yourself, how do you maintain life? How do you make decisions? How do you not get resentful? How do you not look back and say, I wish I hadn't done that, or I wish I had done this. And I think the key for me was a lot of self reflection throughout the season checking in and saying how am I doing? Is this working? How is dad doing? What does he need that he's not getting? Those kinds of questions, so I can make the changes rather than regret it, I could stop in the moment and say we need to do something different.

Susie Singer Carter:

Gotcha. That's important.

Don Priess:

And then that one, yeah. And then that I mean, you obviously you know, as you were going through school, you're not going to be a caregiving coach. That wasn't your that wasn't your major. Yeah. So what was the decision to then that that is now your life's work, it seems you obviously get something amazing from it is as you give, but what was that decision? And what was the process to lead to where you are today.

Rayna Neises:

So I've been doing coaching, I've gone through school, actually, while I was still taking care of dad while I was traveling and caring for him. And it actually works so great, because it's a job you can do anywhere you do it on the phone. And so I could put dad to bed at eight o'clock and have clients later in the evening or have clients on the days that I was home at the farm. And so I was doing coaching, but then once I lost him, the grief was honestly surprising. I know I grieved throughout the process, I grieved with my mom through the process. I grieved afterwards. But the grief was overwhelming once he passed away, and at that point, there was just a lot of self reflection about what we had been through. And like I said it was getting that feedback from other people that they needed to hear how we did that. And and so as I started looking at the book, I started thinking, you know, this is really something that I can help people through. And so using my training to be able to do that is just it is like you said it's my passion to be able to help people see and really listen to their hearts and then move where they need to move to be true to themselves. And I think that's the whole process of coaching is really having the space to clear yourself and clear your mind and hear your own heart and be able to then move towards it and reach goals,

Susie Singer Carter:

Right. We hear a lot about, you know, holding space for other people, but we need to hold space for ourselves. Right? And I tried to do that instinctively, like I say to myself, you know, I, because I'm a I'm a, you know, independent filmmaker, and it takes a lot of time, you're always sale, you're, you're creating and selling, creating and selling. And it takes a lot of time. And I've made the decision, since my mom is at the end of her season, that it's important to me, this just me, Susie, someone else had to have a different, you know, requirement. But for me, I made the decision that I am going to, you know, if, if my career or my or whatever projects I'm working on are suffer a little bit, that's okay for me, because this is important for me to just spend as much time with my mom and be her advocate and, and just, you know, just love on her until I can't. And and I because I don't want to regret I don't want to have regrets. I don't want to miss out on her. Because she's she's my BFF next to you, Don.

Rayna Neises:

And that season is right now. What I think that's one of the most important things about that season is knowing that right now you have to let things go because she is the priority. But it doesn't mean they're gone forever. It means they can come back once she's not here.

Susie Singer Carter:

Exactly. Exactly. And you know, I come you know, listen, that it takes it takes. It takes the time it takes to figure those, figure out those those lessons. Right. And, and you have for me, it, it's to where my heart is, and my hear, and I lead with my heart. So my heart is telling me what to do. And I would you know, I'm getting the most I can have of her. And you know, there's she she's has there's, you know, speech just left a couple I want to say like, like she said, I love you to me about three weeks ago, out of the blue. Came out

Don Priess:

She hadn't spoken for months before. Well, a couple months before that.

Susie Singer Carter:

Yeah. And I was like, oh my god, I just got the gift of the century, like, and Don was in the room.

Don Priess:

she said, yeah, it's the last thing she said. I said

Susie Singer Carter:

to her, I was like, Oh, my God, thank you. That was so hard for you. I know it was hard for her. Because even now when I go there, which I go every day, like I can see her thinking and the words are forming that she looks over here to like, get them and I can I can if I could, if I was an animator, I could animate what's going on because I can see it. It's almost it's almost palpable, what's going on, and then they just don't come. They can't come out. And I know they're there. And I know it's frustrating for her. And it's sad. And so it's so heartbreaking. But then I think, Okay, what it tells me the good part is that she's there.

Rayna Neises:

She is.

Susie Singer Carter:

She's there. And so my showing up is important not only to me, but to her.

Rayna Neises:

So important. It really is. I don't know, my dad probably stopped I don't know when he called me by name last. But three days before he passed away, I had been standing there talking to him, and I kind of moved out of his vision. And he said, "Where's Rayna?" And I was like, you know, I knew because we were there we were at that point. With my mom. Her passing was very different. She had a psychotic break. And so she was her normal self, not normal, but her normal self. And suddenly, she started cycling through this loop that didn't stop. And so it lasted for six weeks, and it was a lot of gibberish and then she would yell and then she'd sit quiet for a moment and then start again. And so we didn't have a lot of last with her because this psychotic piece of it was a piece of that. With my dad, you know we did and and so that was such a precious thing. And like you said, you can only have those gifts if you're there. And so that presence is so important.

Susie Singer Carter:

Totally.

Don Priess:

It doesn't and it doesn't reflect on like, Oh, I love him more than her anything the grieving process was different. But the grieving process was different because of the relationship you kept all the way to the end. You know you had still that not just an emotional bond but you had an actual bond that you could relate to. Whereas you know you didn't have that with your mother but the the so the grieving process for your father how long did it last? I mean when I say it's always there Yeah, it's it's never goes away. But to the point where it was it debilitating where where you couldn't do anything else or was it just kind of just always just hurt and just hurt that you needed to? You needed to heal.

Rayna Neises:

I call it I call it grief brain and grief brain was very heavy for people like four or five months. And what I mean, when I say that is, it probably took me twice as long to do tasks that I usually could do really simply, I was able to continue to coach because I can stay in the present moment with them. But the emotions do, I think they just come like waves come and go really quickly. I think one of the most beautiful pictures of grief that I've heard described as, like you're in a box, and there's a bubble inside, that's the grief. And sometimes the bubble is really large. And so it bumps against the side of the box a lot. And you feel it more and the bubble starts to shrink a little bit, so it bumps less, because there's more space that it can be in there without bumping the side. And I would say probably a good six months. And then once I really embraced, okay, I'm going caregiving coaching, and started a season of caring, then that really started moving me into processing that grief more and being able to feel like I had a purpose to move forward with the loss that I had had. So it was pretty intense. I don't know that I would say I wasn't in bed with it or anything like that. But for me personally, it was I'm a type A I'm a go getter, I do it all the time. The other thing that was surprising to me with the grief was just how tired I was. And I heard I had some great counsel in that I've just rest Rayna, you've been under a lot of stress for a long time. And your body's just telling you, it just needs to rest. So I did not more I did sleep more. But really, you know, aware of whether or not it crossed over into depression, I didn't feel like I got depressed. I just felt like it was this is the grief, this is where I need to be.

Susie Singer Carter:

I so I'm so feeling you right now. Because I feel like I'm you know, I, I am going through that I'm in, I've been in grief for 16 years, let's face it, but But you know, now that that's coming close, and I've already I've grieved her loss, losing her so many times, and and I'm, I'm just, you know, dog paddling, this, this, this, you know, final stint and being as strong as I can for her because I knew she would do that for me. You know, but also trying to honor myself by you know, if I want to go have a boo hoo hoo, I'm going to let myself have a boo hoo hoo. And I also notice, if you're going through this like me right now, I am so I'm a type I'm beyond a type, like, I don't even I let I don't sit down like Don's my best friend, We're roommates now and and he will just go you know, people do sit.

Don Priess:

And if they don't always have their laptop on them, you know, they sometimes they just stop.

Susie Singer Carter:

Or five other projects as well. Right? But yeah, but I'm just gonna just say I just, I will bring now I bring like all my stuff like, like to like, you know, like, we're gonna watch a film or something and I bring all my stuff like my computer and then a like a project that I'm working on. And then maybe I'm gonna do my nails because I haven't done my nails in two years. And normally I would I'm done, I would do it all. But it just sits next to me because I'm like, so tired. And I'm really noticing that I'm so tired.

Don Priess:

And, and that's when I constantly say, you know, it's okay, I do say that it's okay to stop for a moment. It's okay. And without, you know, but you feel like you got to do you know, because you also feel like you've fallen behind on certain things. And but so I have a question. And this is kind of selfish. But but maybe not. Because what happens is friends and family, become the caregiver for the caregiver. And sometimes, and this is, you know, not even now but let's say after, you know, when when the grief is really going to set in after the time. We don't know what to say, we don't know what to do is do we just listen? Do we say something? Do we offer advice? Do we you know, what, is there a right or wrong? What's you know, and I'm sure I'm sure that's personal. But maybe there's some guidelines for the people who are caregiving, the caregiver.

Susie Singer Carter:

Good question, Don.

Rayna Neises:

Grace, Grace, Grace, Grace, I think it's like you said, it's very individual, each person is very individual. I do think you have to you just have to be present, what can I do for you? And if they say nothing, you let it be nothing but you stay. When they want to cry and ugly cry and don't want you there, then you leave, you know. So I think there's a lot of sensitivity that's involved in allowing someone to grieve. And it's allowing them to be them. They don't even know what their grief is going to look like. I had no idea what my grief was going to look like. But being asked to do things, you know, not being left out. But having the choice to choose to do something or just say no, it's too much for me right now was a blessing. So I think again, just allowing that grace for that person to do what they need to do. I would also say be really cognizant of whether or not they're crossing into depression, because we know that that can happen, too. And it's not okay to go to bed and stay in bed for days, you know, we really have to make sure you pay close attention because you don't want it to move into a depression that can cause more problems in the future.

Don Priess:

And what do you do that does? What do you do with that, you know, as somebody you know, you can't make them do anything.

Rayna Neises:

No, you can't.

Don Priess:

What do you do if you if you notice those tendencies,

Rayna Neises:

So I feel like you use everything you can, whether it be grandkids, or kids or your relationship, and you say, I need you to go because I need you. And I'm worried. I feel like you're moving to a place that it's so dark for you. You're it's hard for me to watch that. And I need you here. Come with me. Let's go and do it together.

Susie Singer Carter:

You're important to me. You're important to us. Right? Yeah, I think that's...

Rayna Neises:

And all of those little people are so important. I know, you talked about your great granddaughter, and I mean, that was something my grandkids, it was a constant in my life, they were a light that kept drawing me back, no matter how hard how stressful things were, they kept drawing me back to the present into the future that those little people have. And I want to be a part of that. So continue to keep them engaged, don't let them isolate. Don't let them isolate

Susie Singer Carter:

I love that. You're right, because those little people need them. And that and they deserve you, they deserve you, like you deserved your loved one that you've lost. And so it is the cycle of life, and that we need to be strong for the ones that are coming after us because they love us and they want to be a part of our life. And we need to model healthy, a healthy way to to go through life, right? Because otherwise everyone would just be like, curled up in a fetal position. nothing would get done. So you know, and I, I'm so grateful for my my family that, you know, we've created and my friends that I love, and they're it's precious to me, and I know it's precious to everyone else that you know, and you don't want to lose that and you that you know you're going through your grief. But you also have to recognize that that the people that love you are grieving with you. Because they love you.

Don Priess:

Yeah, and I'm a true believer in fake it till you make it. I'm a true believer is just do it even if you don't want to and and throw it you know, once in a while, throw a smile on because I think it changes the brain chemistry. Definitely. When it tricks it.

Susie Singer Carter:

You know what else tricks it?

Don Priess:

What's that?

Susie Singer Carter:

Shopping, shopping.

Don Priess:

And that's for real, that's not faking it.

Rayna Neises:

But I think that's what my three year old grandson did for me was he adored me. He was excited to see me every time I saw him. And so that joy that he brought brought me joy. And I think so many times as people, we want to have one emotion only and that's not reality. We have more than one emotion and they can coexist. Yeah, it's okay to be sad at the same time as to be happy. You don't have to choose.

Susie Singer Carter:

Oh, that's beautiful. I love that. I've not I've not I've not heard that. But I mean, I've felt it, but I've not said it. That's beautiful. Very, very cool. Absolutely.

Don Priess:

And also, yeah, and everyone grieves so differently. I remember when my dad passed. I mean, I was, I was devastated. But I grieved differently than I thought I would. And I and I kind of just kind of was living in in the memory that I had of him and tried to, and I really tried to keep it not tried to keep it I was just trying to keep it in this positive memory of him that so I didn't dive into this deep depression or anything. And I felt guilty about it. I felt guilty that I wasn't just like, crushed and devastating and crying constantly. But we realized that we do you know, and I don't know if it's a survival mode thing or whatever. But everyone does it differently. And I, you know, we shouldn't judge people on how they grieve.

Rayna Neises:

Or ourselves what you just said,

Don Priess:

I did I judged myself, I was like, Wait, why aren't I on the ground right now, in a fetal position?

Rayna Neises:

You should have shoulds all those shoulds in the way I should be feeling this way I should be doing this. I should be doing that. Anytime you feel yourself in a should zone, you're in the wrong place. Right? Because that's not truth. That's just your idea of what you're telling yourself and we really have to get rid of the shoulds but I agree I think it it is very different. I think some people can't grieve initially. I think also the type of loss is different. I mean, Susie what you're experiencing this very slow fade, is sometimes hard to pull up the happy memories from long ago. Because the difficulty and I think that was part of what was difficult for me with my mom to have her scream for six weeks before she died. There wasn't a lot of happy memories fresh. It was very hard. But it was almost a relief that she was gone because this wasn't continuing on with my dad, it was kind of sudden, you know, we were playing ping pong one day, and then he had a pain in his leg ended up being a blood clot. He survived surgery. He did really well in rehab. We brought him home from rehab, and he just kind of took a deep breath and was like, I think I'm tired. Not that he said it. But that's what happened. He just was like, I think I'm tired. And he was literally home 11 days and gone. And we had no idea.

Don Priess:

Yeah, it's just, that's, you know, because there wasn't suffering. I mean, that horrible, long suffering. And there is like a time, you know, there's some, like, you know, it's better for them to go, and, you know, it's hard to release them. But it's, you know, we finally told him my dad, I said, We'd said Dad, it's okay, because we thought we he was not, he was basically not there. But we have little moments, tiny moments of cognizance, but it was, and we just said, Dad, it's okay. It's okay. And then next day, that was it. He said, Okay.

Susie Singer Carter:

But with my mom, I we said it's okay. like a lot of times because we thought it was

Don Priess:

She's just stubborn.

Rayna Neises:

Yeah.

Don Priess:

She's just wildly stuborn.

Susie Singer Carter:

My mom, and all of a sudden, like, we literally literally my mother, and like said, she's not going and not not that I wanted to, but it's just like, for me to give her to say, go, go. And then I looked at her and I'm like, wait a minute now. She's completely good?. What's goes on with you? And she laughs I'm like, Oh, my God, you are a pistol. And I'm gonna be dead before you. That's it.

Rayna Neises:

It is hard. There's that's a very conflicting feeling that I'm ready for you to go. I know it'd be best for you to go. But oh, man, I don't want you to that's, it's a hard place.

Susie Singer Carter:

So hard. And plus, when someone has dementia and they can't communicate. They can't tell you, "I'm ready".

Don Priess:

I'm ready. Ready? Yeah.

Susie Singer Carter:

I look in her eyes. I'm like, I'm like radar out every time I see her. I just look. Is she going to tell me something? Every day I see her. I say what words do you have for me today? Tell me. You got something to say? Say it. I'm listening. And I've got all day. Well, not all day. Just hurry up. But she, you know, and I because I want to, you know, I want to see where she's at. I want to see, does she want to go? And then I feel like I know my mom well enough to know. But then I think well, maybe maybe I'm just fooling myself because the disease's is, is stronger than me. It's, it's more wildly than me. And so I have to acquiesce that the disease is it, you know, is going to mask what I think you know, that I used to have with her. And so I try not to live in in that delusion either. But I honestly do feel like there's there's non-commun..., you know, nonverbal communication that you can receive and give. You know, and just one last thing with my my, my granddaughter who's two years old, my mom turned 89 on April 1, and we didn't even think she'd make that birthday. And this so our baby Eden was born right in the heart of of COVID. So she didn't spend a lot of bonding time other than on zoom with my mom and zoom on Alzheimer's. Not a great mix, you know? So when she got to go to her birthday at you know, my mom's back in the home, and she just climbed right up on to bed. And, you know, no, no words went between them....

Video Voice:

"What in the world.?!"

Susie Singer Carter:

And she's patting her and patting her and getting in and loving on her and looking at her and then laying on her and looking at her. And my mom is smiling and they're both kissing. And I went well, they're speaking a language that we don't speak.

Rayna Neises:

Yes. It's so beautiful.

Susie Singer Carter:

It is gorgeous. So you know, there are ways to communicate. And wow, is there anything we we didn't say that you'd like to share with us that we didn't ask you because well, we could talk a long time.

Don Priess:

I mean, yeah, because we've we've not really gotten a you have a you have a website, you've got podcast, you're obviously you know, you're coaching people. I don't know if you have more people that you're coaching while they're going through it or after Um, you know,

Rayna Neises:

More through than while. Because I think grief is there's specialists in grief. And I'm not that I've been there. But you know, definitely processing is as we go is something that we work on. But yeah, I love to be able to just hear people's stories and help them where they're stuck, you know. And so it that's just my heart in any way possible. So I'd love to do speaking events so I can get out there and meet

new people. No Regrets:

Hope For Your Caregiving Season is definitely a passion project that I think can really help people through their season.

Susie Singer Carter:

Love it.

Rayna Neises:

And once the opportunity I have free support groups, those types of things. So

Susie Singer Carter:

Where can people find you If they're not watching this, and they're listening? Where can they find you?

Rayna Neises:

The best place is aseasonofcaring.com. And I just want to throw in I added training with Teepa. I love Teepa Snow. And so I'm now an independent certified trainer with the PAC (Positive Approach to Care) program. And so anybody who, who is going through this, I would so encourage you to go through normal aging versus not normal aging, with Teepa as content because I learned a lot of it by discovery. But teaching it I'm like holy cow, when you actually see what's happening to the brain, it totally changes how you interact with them. So many times people feel like aggression is normal in Alzheimer's. I don't I didn't experience that with either of my parents now. Did they get upset? Were they frustrated at times? 100%? Did I frustrate them 100%. You know, so realizing what I'm doing that triggers that reaction is, you know, a lot of what I discovered but learning about what's happening in their brain is life changing. So I encourage people with that as well. So

Susie Singer Carter:

Can I just say, Teepa Snow, and if you don't know who she's talking about, and she is kind of the godmother of a lot of you know, the communication with with dementia, people with dementia and understanding what is actually going on, like you just said, and she has created so many different programs like that, where you know, she's actually can mimic the like what you know, someone with, with dementia with Alzheimer's so that she can respond to you in a way that your loved one might because she she has an understanding of what's going on. It's It's remarkable. So yes, so you're teaching that, as well, now.

Rayna Neises:

Yes, I'm trained to be a trainer. And so I'm doing some of that online. And then any facilities that you know, are looking to have training with their staff is also something I'm able to do. So that's been a new thing I've added because I just once I found her and all of the things that she's doing, I just couldn't not be a part of it. So

Susie Singer Carter:

Beautiful. Well, I think that's awesome. And I guess I got more work to do now now I feel like, I feel like I'm not doing enough, Don!.

Don Priess:

Oh, great!

Rayna Neises:

Sorry, not what I'm trying to do ya.

Susie Singer Carter:

I'm teasing, I God bless, no, I think what you're doing is so wonderful. And I am that you're putting all your energies into this. And you know, and that's what we need everybody that has their story, like I'm a storyteller. So that's what I do. And that's where I can best be... serve, right? And you are obviously a you know, like a born coach and you have such a heart. your heart's huge, you know, you can I can feel it. It's It's giant and, and that's what we need. When we're going through this. We need information and we need compassion. And I think you know, you you represent that. So thank you. Thank you so much. Because this whole journey is about love. And that's why, you know, we always say things like, what Don?

Don Priess:

We always say that Love is Powerful. Love is Contagious. And Love Conquers Alz. And we thank you for joining us today. Like share, subscribe, do all those good things and definitely go check out aseasonofcaring.com. Rayna Neises, we are so thrilled to have you today and and hopefully we'll do it again.

Susie Singer Carter:

Happy Mother's Day everybody. We love you. We love to all the mommies that are in heaven and all the mommies who are here. Have a good one. Bye