Rayna Neises: 0:08

Welcome to A Season of Caring Podcast where there’s hope for living, loving, and caring with no regrets. This is Rayna Neises, your host and Karen Weaver, your cohost. And today we’re going to take the opportunity to talk a little bit more about my caregiving journey.

Karen Weaver: 0:22

Yes, Rayna. Thank you for the opportunity. I think our listeners are really going to enjoy hearing a little bit more about your story. And I know you shared with us before that you were young when your mom was diagnosed with Alzheimer’s, but tell us a little bit more about what that was like, how old you were and what were the emotions that were going on inside of you at that time?

Rayna Neises: 0:45

You know when I think of it now, I think of the fact that my mom I’m almost the same age she was when she was diagnosed. I cannot imagine what it was like for her, but I was just 16 years old and my sister had gone off to college the year before. My dad being the breadwinner, my mom being a stay-at-home mom. And honestly, I was in trouble more that year than I’d ever been in trouble. And it was things from mom forgetting that I had told her where I was going, what I was doing, or she was supposed to pick me up from ball practice. And she would say, I never told her, you know, we, we struggled. We struggled a lot and I didn’t know why. I also remember. I had a great aunt that made some comments to me, I don’t even remember what they were, but I remember they weren’t true that I had done something or I had said something and she had said, my mom had told her and I can just remember being so frustrated, confused. I just didn’t know why my mom was lying about me. That’s how I felt, because I knew I was telling her things and she was saying, I wasn’t. So she was lying. You know, that was all that I can make sense of it. So I don’t really remember exactly what happened, but my dad told me that I expressed concern to him that mom was forgetting things. And that was why he scheduled an evaluation for her. And so she went and had the testing done. The day of the test always stands out in my mind I love to play volleyball, but one of the things you had to do was you had to run a mile under a certain time in order to even be considered for varsity. And I had trained all summer long. I was struggling to get under the time and the day my mom went downtown to have testing done. We had tryouts in the morning and then we had a long break. And so I came home for lunch and that wasn’t normal. I was cooling off and hanging out, waiting to go back to try outs again. And my aunt called and she asked for my mom and I was like, mom’s not home she met dad for tests. And she said, no, I’ve already talked to your dad. Your mom should be home. Well, immediately we all panicked because mom didn’t go downtown very often. And we were so afraid she was lost somewhere or something had happened to her. And this is well before cell phones. Right.

Karen Weaver: 3:25

Right. right.

Rayna Neises: 3:27

I stayed home and missed the second half of my tryouts. Because my mom was nowhere to be found. And my dad started driving from his work back towards the house, trying to see if she’d broken down somewhere or something. And my aunt started coming from where she was to the house. And my mom walked in with bags in her hand. She’d been to the store. Okay. So we all overreacted and that’s, you know, I think that is a prime example of what happens when memory is as a concern. People always go to the worst and sadly, it was the worst, you know, she was diagnosed, she was 53 years old and it was the beginning of a difficult journey, but it was one of those things that even at my age, they never told me, I heard the diagnosis back on the phone, in the house. When you had multiple

Karen Weaver: 4:21

Right, right.

Rayna Neises: 4:22

a different, I picked up a line to make a call and I overheard him talking to his sister and I heard the word Alzheimer’s. And so I did some research. In fact, my formal research paper in high school, I did on Alzheimer’s and learns everything that I knew from that. My mom being so young, she fell in the age group category of Early Onset. And so I expected her to live four to six years and that would’ve put me and at the most 22, and she lived 12 years, she passed away when I was 28 years old. But the disease that impacted her brain in a completely different way than it did my dad’s. Her visual processing was significantly impacted. She struggled, her brain did not interpret things. Her eyes were fine, but she would bump into doorways. She would try to sit in a chair and miss because she wasn’t seeing things correctly. I remember a time where she was in the corner of her bedroom crying because she was stuck in the corner and couldn’t process how to get out. And we had a little poodle and he came and he barked at me. And I followed him and she was very, very upset and couldn’t figure out how to get out of the corner of the bedroom. So that was impactful and really remember how much that affected her. She shuffled a lot when she walked, but if you held her hand, she would just walk with confidence. So she was shuffling because she couldn’t tell if there was going to be a step there or there was going to be something for her to trip over. But when she held your hand, she would just follow you, right wherever you went. So we walked in public, all over together, just holding her hand. And I remember that being young, you know, being odd to have to hold her hand to leader around. She also lost her verbal skills very, very early on, I would say three years maybe for after her diagnosis. So I was off to college. There was never a phone call with my mom. It wasn’t, Hey, Reyna how’s things going or anything like that. I never had those conversations. When I would come home. We could, would you like chicken or hamburger? She could kind of answer like that for a period of time. But for those he 12 years that she was alive, at least eight of them, she was non-verbal so jibberish. Happy, happy person. Sweet, sweet lady. Beautiful smile and just loved music and really was so content at home. The last three years of her life, she didn’t leave the house. Just really content to fold laundry, dry dishes with you, sit on the couch, talk with the dog and talk to things that weren’t there. She was a very happy person, so it made caring for her very easy. We fed her in bathed her, probably those eight years of her life, but she was never incontinent. And so that was very different, but we just took her to the bathroom kind of on a routine. And she slept really well. So we were really blessed with that. It was different, I think I was so young that my caregiving for her was just very natural. She couldn’t do it for herself, so I never thought twice about it. Because I had never known her as a capable adult, myself being an adult. Obviously she was a wonderful mom. And as an adult, she did amazing things for me as a child. But as I became an adult, she was the one with all the needs. And so I just stepped in and helped with as needs. So we never had an adult to adult relationship, but at the same time, I never looked at myself as being her parent. I just helped her. I just did what she needed to do. My dad had some caregiving help during the day. But overall he did not let very many people bathe her. He learned to cook. Two years after her diagnosis, he retired. He took early retirement from his job as the Chief Financial Officer at Folgers Coffee in the Kansas City plant. And so he was, we were a very traditional family. He was the breadwinner mom was the housekeeper. So he had to take on those roles and after some kitchen fires and some scares and things like that, he made the decision to go ahead and retire early. Hoping for them to be able to travel and do some of the things they’d always dreamed of. They did some but not as much as he had hoped or planned. I think so. Dad encouraged me. It was definitely difficult for me as I was considering colleges. There was one college that was just 45 minutes from home. And the one that I really wanted to go to was almost three hours from home. And I remember having a conversation with my dad about the fact that he knew that I would rather go to Southwest Baptist University instead of William Jewel. And said, don’t, you dare choose because of your mom. I’m here. I will take care of her. You go and live your life and be happy. I was thankful for that conversation. I needed that. I needed permission to make the decision for myself. So I did, I went off to college and that was hard. I missed quite a few years on a regular basis with her. I married right out of college and actually moved for him to attend seminary for a period of time. And that was very, very hard to be away from home. Eventually we came back home to Kansas City and we’re able to be there with her and with my dad the last few years of her life. A bigger help and support to him at that time. So losing her was very difficult. It was psychotic break that she had and she cycled through a hallucination just over and over and over again. So it was a very difficult ending to her life. And that was hard at such a young age to process through. But our time together, my dad and I became very close at that point. And really just my sister was involved, but not, we weren’t involved at the same time kind of thing I would come in or she would go and do something kind of things. So we just didn’t team as well with my mom for my dad, as we did, when my dad made that journey himself. So that was kind of how it started was early in my life and lots of things to try to figure out, understand, and just do the best we could with.

Karen Weaver: 10:41

Yeah, well, it sounds like you did an amazing job and I just can’t even imagine being so young and realizing that your mom is no longer able to be your mom, as you remember her and for your dad. You know, I think he’s pretty amazing too, just to be able to make that, that transition and to make a decision I’m going to retire. I mean, because. That’s putting some of his dreams on hold too I’m sure. With your mom being in the condition she found herself. So I know that, you said your mom was ill for about 12 years, but how long after your mom’s transition, did you have concerns about your dad?

Rayna Neises: 11:29

So actually after her passing, then I lived with my dad for a period of time, as my marriage came to an end. And he and I bought a business together that was about four hours from where he lived. And so I moved away and ran the business hands-on and dad was the partner with the money and the accounting background and all of those things. And so that was a big step again, to make that move and, to leave home and to go out on my own and run this business by myself. One day I was in my office and my dad called and he said, Rayna, I’m kind of worried. And I said, what’s going on dad? And he said, I don’t think I’m remembering things the way that I should. And I said, Oh dad, you know, we don’t even know what normal aging looks like. And to be honest with you, my mom and dad were married at 17 and 18 and my sister and I came along later in life they had their first child at 36. And by the time I was born, all of my grandparents had passed away. So we didn’t grow up with older people. And my parents’ parents died young. I mean, my oldest grandpa was 65 when he passed away. So when I say we don’t know what it looks like to get old, we didn’t know what it looks like to get old. And so my dad was in his early seventies at that point. And it was seven years after my mom passed away and I said, Oh dad, we don’t even know what old looks like, just go to the doctor and I’m sure everything’s fine. But go, just get, don’t be worried about it. Just go to the doctor and ask for some evaluations he did and it wasn’t okay. He ended up with his first diagnosis as Mild Cognitive Impairment. And that was something that 50% of the people with Mild Cognitive Impairment go on to develop Alzheimer’s. So we were holding out hope that he would be the 50% that didn’t and he was being monitored and we were going to regular checkups with the doctor at that point my dad’s sister had ended up moving into his home and they were kind of sharing just, they were two peas in a pod had always been. So they were just enjoying life together, doing some traveling, doing things for each other, enjoying having the company and being there. But we were going to doctor’s appointments and I think it was about three years in that the doctor sent to us. It was a different doctor and she said Alzheimer’s and my sister and my aunt and I, we all just looked at each other and I just remember tears just welled up in my eyes. And I said, what did you just say? Well, she didn’t know our history. And so she didn’t know we had, we don’t know exactly when they changed the diagnosis into the Alzheimer’s, but it had changed over. So dad knew, I think dad knew because so many people associate Alzheimer’s with memory loss, but my dad struggled with problem-solving

Karen Weaver: 14:33

Right.

Rayna Neises: 14:34

and I would say he was above average problem solver so I think that’s why he sensed it. I think that’s why he was concerned because he knew things that used to be easy for him weren’t anymore.

Karen Weaver: 14:45

Right.

Rayna Neises: 14:45

that’s where I saw some of those things earlier in his progression wasn’t the side.

Karen Weaver: 14:51

So what did the car keys and checkbook conversation look like?

Rayna Neises: 14:58

You know, our family was so blessed. I’m so thankful for that. I don’t know if it was because he was there for my mom in that transition and change, but he was graceful with it. Now, I was adamant I was coming in from out of town cause I was living and running the business four hours away. When it came time, when the doctor said I need you to take the car keys before our next appointment was what she told us. I was, I was on a mission. We were not taking the car keys. And leaving him at home with nobody to take him anywhere. And at the same time, we weren’t going to put that on my aunt either and say she had to take him everywhere because she had her own life and she was doing her own thing. She was already helping to cook and they were teaming in so many different things. But the driving side of things did not need to be her, have to go everywhere. He went, boy, it was hard to find somebody who would drive him. Now I love Uber today. When I think of how easy it would have been to find an Uber driver who would have been consistent for him and happy to get the money. But you have to keep in mind at this point, when we were taking the car keys away, my dad was still playing softball three times a week. He was playing volleyball in the winter three times a week. He took himself to the gym and swam and lifted weights and did a lot of these activities. He loved to be physically active. And I knew that none of this was going to work. If we just expected him to stay home. It wouldn’t have happened. So we had to call and call to find an organization that would allow us to hire somebody, to take him to these types of things. They would all say, Oh yeah, we’ll take him to the doctor’s appointments or we’ll take him to therapy or whatever, but not to volleyball. And it’s like, no, no, no, no, you don’t understand. We have to figure out a way to make this happen. So we finally found an organization who would drive. So actually it was very smooth. Now, what was so ironic was probably two years since he had driven one night, he was sundowning and he got in the car and he drove away and he was gone for almost three hours Terrifying. And my brother-in-law happened to find him in the neighborhood, just driving around and he pulled up next to him and Hey Bob, and hi, he said, are you done doing your errands? He said, yeah. And he goes, would you like to follow me home? And dad said, sure. And he just followed him home. So overall that was really a lot easier than most people have it in the way that we handled that. And the checkbook as well, he asked my sister for help. When he knew he was getting to a place that he wasn’t balancing the checkbook and those kinds of things, well, he asked for help with that. And eventually we did run into trouble with charities taking advantage of him. Hundreds of dollars every month, he was donating to charities. And we knew, cause my sister was monitoring the checkbook and he wanted to give, he had a very compassionate heart. So it was hard for us to negotiate how to handle that. And I actually went in and recovered 28 different charities information. And I wrote a letter to them and explaining that he had Alzheimer’s and that they were taking advantage of him and please remove him from their list. I don’t think any of them did.

Karen Weaver: 18:12

Oh, well

Rayna Neises: 18:13

So frustrating to me how they take advantage of seniors. So eventually we ended up having his mail forwarded to my sister’s house and then she would kind of put it into the mailbox. Just those things. He needed to try to stop the flow of the request because he would give to one charity. And two weeks later, we’d see another check to the same charity and they were just really taking advantage. And so that was a little more difficult of how to navigate that because he had the finances because he’d worked hard and we felt like he should choose how he wanted to spend it.

Karen Weaver: 18:42

Absolutely. Yeah.

Rayna Neises: 18:43

But we also wanted it not to be, you know, someone stealing it from him. So that was a little bit harder to dance, but overall, he ran out of checks and he asked my sister, I’m out of checks. Can you get me more checks? And she’s like, Oh yeah, we’ll do that. And she kind of put him off for a period of time and he stopped asking. So that was just kind of again, how he let go of it. So very blessed because I know those two things can be a real challenge for a lot of people.

Karen Weaver: 19:12

They definitely can be a challenge. So, so here your dad is now he’s sounds like he was still in the house and then. At some point you made a decision to sort of go back and forth. So tell us a little bit about that.

Rayna Neises: 19:26

So his sister had been living with him and overall, sundowning had gotten tougher for she struggles. They’d always been two peas in a pod, so it was hard for her to watch him struggle with things. And so she had a tendency to try to get him to relearn something or to correct him a little bit more. So there was a little more stress, there was more tension happening. And, then we found Melanoma and cancer on a spot on his shoulder. And so he went through surgery for that and the surgery seemed to go well, they had to take a large chunk of tissue up on his collar bone. And so they took a piece of skin to put that skin graph on there and everything was looking good. And about two weeks afterwards, all of a sudden the skin graph failed and come to find out he had MRSA, which is a very resistance infection. And so we ended up in the hospital on IV antibiotics for almost nine days, I believe, trying to fight that. And that was one of the toughest things, because the infection just made him crazy. He just didn’t understand anything that was happening. And so we were there with him the whole time. And once he was released from the hospital and recovering from the MRSA, he just couldn’t take care of his daily needs the same way he could before all of that happened. So bathing and shaving and all of those things, he’d been very independent with, he wasn’t anymore. And so my aunt just became very, very overwhelmed with trying to do that for him. We hired help, but it still was just too much for her. So she made the decision to get her own place and move out. And so my sister and I did what most families do we went on the lookout for memory care units to see what we could find. And, you know, I would tour the memory care units and they were beautiful. I mean, don’t get me wrong. They were nice. I just couldn’t see my dad there because even though he was struggling with some of his daily routine things, he was still playing volleyball. He’s still lifted weights. So as we made it through the physical recovery of that surgery, he was going back to those activities that he loved. So the thought of him being locked in a facility, it just, I couldn’t do it. I I’ll never forget just stepping through the door, hearing it slammed behind me in that click, you know, just locking behind me. I just thought I can’t see him living there and I got home. It was Christmas and my husband had been at my dad’s house with me. And so I came home from the tour and I was just crying and sad. And my husband’s like what, you know, what’s going on. I’m like, I just can’t seem living there. And he said, then don’t so don’t what he said, then don’t have him lived there. He said, if you need to come here and live with your dad to take care of him, that’s what you need to do. So that conversation put me in the position where I just started thinking, what could that look like? What are some options? And so I started building a plan to keep dad at home and bring the support in that we needed to keep him there. And I started off with a plan without anybody but me doing the caregiving side other than paid help, you know? And so I took it to my sister and said, okay, I know this is what we were looking at, but what if we were to do this? What if I was to come and stay Thursday through Sunday and take care of him? And we were to bring 24 hour help in the other days of the week. She’s like, well, do people even do that? Yeah, they do. I had made phone calls. I knew what different organizations that were available. We went to the Alzheimer’s Association, had a conversation with them about what might be feasible. And really, I just came back even more convinced that that was the right thing for us. And so my aunt and my sister both said, I can stay two nights a week. And so that covered the nights that I had three nights, they each had two nights. We found people to come in during the day we had the lady that was already taking him to volleyball. We had some resources in place. We found a day stay. That was amazing. And he actually loved to go. And so we put the plan together to start just keeping him in the home. And so when we did it, I asked my sister, can we do this for six months? And then see how, you know, see what we need to do from there. I don’t know what I thought was going to happen in six months, but you know, every six months or so, we’d have another conversation. Are we all good? Do we need to change anything? Is this, is this the right plan? Is this the right thing? And, and so four and a half years later, that’s what we were doing. Whenever dad had a blood clot and had surgery and didn’t recover well from that.

Karen Weaver: 24:08

Well, I think, I think you did a great job. I mean, again, like a plan is just a plan, but I think just the insight of knowing that you could put the plan in place, but then we evaluate it and talk to those folks who are a part of the plan, just to make sure everybody’s still on the same page and that it’s still works. But at the same time you were able to really give your dad the kind of care that he needed 24 seven. And it wasn’t at the expense of you being there 24, seven, seven days a week. So I think that’s great. So when you, when you think about all that you been through with your mom and, and he, of course you would way more hands on with your dad and his experience. Tell us a little bit about, what was the one thing that made it worth changing your life to care for your dad?

Rayna Neises: 25:05

I think for me, it was just the time that I had with him, you know, as adults when was the last time you spent a large amount of time with your parents? We don’t, we’re busy with our own life. We have all of our things to do. We might go on vacation and we might spend a weekend visiting. I would, I was, I went up every month and spend a weekend with my dad before he was at this point that he needed help because I knew he wouldn’t be around forever. And so I planned it into my life and I spent that kind of time with him. But the three days, a week, week after week after week, we did so many things together we would never have done before. And so just the memories, the opportunities to enjoy him and have fun together are the things I’m most thankful for.

Karen Weaver: 25:53

I think that’s great. So still the big question of course for the day is so why write a book?

Rayna Neises: 26:00

I am the most reluctant author you will ever meet. I never imagined I would write a book, but I had people who watched what we did. The lady who was the manager of the days, day facility that dad attended all four and a half years at his funeral came to us and just said, you girls need to write a book. My sister and I, and I was like, Oh, whatever. And my sister, certainly wasn’t thinking anything about it, but just at different points in time, I had people say, you know, you did so many things differently than what I hear. Most people do that. I think you need to write a book. And so that’s where it came from was just hearing other people saying, we think you need to share your story and your perspective. And I do think that my perspective made a difference in how we all made it through the journey together and being intentional and reflective are two of the main things that I think I did well. And I just want to help others do that as well. You know, when I think about walking my dad all the way home and burying him with no regrets, that’s how I think of it. And I want that for everyone else too.

Karen Weaver: 27:08

Well, you’ve certainly. Than that. And, and we all know that, you know, sharing a story is something that everyone needs to do. Because what happens is we never know how our story will help someone. So, you can’t minimize any experiences because everyone’s experience is different and sure enough if you’ve been through it, somebody else will benefit from hearing how you get through it as well. So thank you so much for just taking the time to share that with us in I’m sure that after, you know, hearing their story, that people will want to go out and by the book. And so tell us a little bit about when the book is coming out and how we can get the book and look further, is it paid for back car back with, how can we get the book.

Rayna Neises: 28:02

Okay, well, thank you, Karen. So it is available right now on ebook, or Kindle edition at all major retailers, but the soft cover will be available in all major retailers, June 1 And so right now you can visit www.noregrets-book.com and you can find the retailers that are carrying it as well as also qualify for some pre-order bonuses. Because if you pre-order now it’ll be shipped out June 1, but you can also receive a signed copy from me if you fill out the form as well as some additional free resources. And so definitely some great pre-order bonuses available through May 31st. And then after June 1st, you can find it in all major bookstores.

Karen Weaver: 28:51

All right. Well, hopefully you got to go day and go get your coffee. Thanks again right now for it, but just taking the time to share.

Rayna Neises: 29:02

Well, thank you and listeners. I hope that it has been a blessing to hear a little bit more about my journey. As we were thinking about this podcast, I just thought, you know, people haven’t heard the whole story. You’ve heard bits and pieces. So hopefully this has been encouraging to you. I know that no one’s story looks the same and no process is the perfect fit for every family. And so I offer all of our experiences just as that as an experience and an opportunity for you to think what could my outside of the box solution look like? It doesn’t need to look just like mine. It needs to look like what works for you and your family. Just a reminder, a season of caring podcast is created for the encouragement of family caregivers. If you have financial medical or legal questions, please consult your local professionals and take heart in your season of caring.

*Transcript is an actual recount of the live conversation