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, today, we’re going to take an opportunity to visit a little bit about my book, No Regrets: Hope for Your Caregiving Season. So Karen, I know you’ve had a chance to read through it. So where do you think we should start in sharing with our audience about the book?

Karen Weaver: 0:30

Okay. Well I think we should start just talking about the decision. When your family decided to keep your dad at home. I’m really curious. And I think it would be helpful to our listeners of how did you get to that conclusion? And what do you think are important steps to making a good decision as a family?

Rayna Neises: 0:50

I think it can be so tricky. Family and dynamics are tricky. Aren’t they? So starting off, I think one of the most important things is just really exploring all your options. So many times, I think we just get on a path and that’s where we go. And we never really even think about other choices. I know that’s kind of where we were. We knew dad had asked us to stay at home as long as possible, but once his sister needed to leave the home, it just seemed like the only choice was to put him somewhere else. And that’s where we started we were looking at places available. But I wasn’t comfortable with that. I don’t know. We just really were kind of struggling with what are we going to do? So one of the things we did was we made an appointment with the Alzheimer’s Association and we went in and had a conversation with one of their counselors. I didn’t think it helped me tremendously because I really felt like they were more saying placement was kind of the best choice and. I didn’t feel that way, but that seemed to be what the counselor was feeling. Looking back, I think she was probably concerned for my aunt because my aunt was in this situation right now. And my aunt was feeling very burnt out. And I think she was feeling like we weren’t hearing her, but we were, we were just trying to figure it out, you know, but I did feel like having the conversation helped me see a little bit more where my sister was. It also honestly helped me realize. I don’t really like this choice and, talking about it, it made me go, this isn’t what I want to do. I still didn’t know what we were going to do, but I at least felt like, yeah, this really isn’t what I feel like I need to do. I got more resolute in, in the feeling that there had to be another choice. The other thing that was really helpful with that was they gave us resources. So there was list of in-home care companies. There was a list of days stay companies, and then there’s a list of residential options. So that let us see what was available in our area. We were able to then go and look at choices that had specialized care for Alzheimer’s patients. And that helped us to see even more, what was going to be a good fit for us.

Karen Weaver: 3:02

all right. Well, we’ll talk, we’ll talk a little bit more about that. Talk a little bit more about, you know, when you went to that, the memory care unit, when you heard that door.. And when you really thought about your dad and who your dad was as a person and what would those, the emotions that came up for you and you know, and, and even, you know, how your husband responded in the midst of all this? I think that was, definitely worth sharing as well.

Rayna Neises: 3:34

We went to a couple of different places and, you know, honestly, they were as nice as a hotel. Most of them were kind of laid out in that way. And the room was about the size of a hotel room and a lot of people were sitting around there. Wasn’t a lot of activity which immediately made me go, oh, I don’t know. You have to keep in mind. My dad though, he was 81, he was physically fit. He was still playing volleyball three times a week. He was still going to the gym three times a week, swimming, lifting weights. He just was very physically fit. So for me to look around and see these other people who were in a wheelchair, just sitting napping, that kind of thing. At this point in his life, he wasn’t doing those things. And so, you know, one of the last places I visited as I was leaving, I just heard that door slam behind me and that lock click. And I just tears immediately came to my eye and I just thought, I just don’t see him there. I cannot imagine him. Being locked in that small of a space and having to stay there. And again, it wasn’t that it wasn’t nice and, they seem to have courtyards or he might be able to go out and get some air. But at this point he was still raking the yard and he just so loved to be outside and active that I just couldn’t see it fitting. So as I came home after that visit, it was around Christmas and my husband had been in town with me and came back to my dad’s house and I just broke down crying. And I just said to him, I just, I just don’t see him there. Farmer just said to me, then don’t do it. Don’t do what you know, he said, then don’t put him there. He said, Rayna if you need to move here and take care of your dad, then that’s what you need to do. And it was just like, oh, that was so freeing to hear. It wasn’t that simple. Don’t get me wrong. I four half days a week. At that point, you know, we had a farm, we had a high school age kid at home. There was a lot on my plate, so it wasn’t just that simple. Oh, okay. I’ll just move here and take care of him. But it gave me permission to say, what else could this look like? It doesn’t have to look like that. So, what could it look like? I think most of the time as caregivers, we think immediately they need to move in with us. We need to make them with them. I mean, this big, huge change that needs to happen. And sometimes it does, but sometimes it doesn’t look like that. Sometimes it looks a third way or a fourth way. And I think with the resources from the Alzheimer’s Association, then I was able to. Look at the list of in-home care and start making phone calls and asking questions. Do you do 24 seven care? What happens? How do you do that? The thought of having someone live in a home without a permanent other person living with them. It just was like, how do you get groceries? How do we pay bills? How do we know? There’s so many pieces involved in it that it was like, all of these questions started coming, but I got ahold of a person that was just really helpful and answered those questions. And we talked money and I sat down and looked what it looked like. And I thought, you know, I think I can leave after teaching on Thursdays and I can stay with Dad through Sunday and I can hire 24 seven care for the rest of the time. And I thought, I’m just going to ask my sister what she thinks. And so I just called and said, Hey, this is how I’m feeling. When I went there, I just couldn’t see dad there. I knew people who were really nice. The place was real. I just couldn’t see him living there. I said, what would happen if, what. What do you think? Is there any way I’ve already talked to them? They could do this. This is what they would do for us. This is how much it would cost. If I came and stayed this much time at dad’s house, is that something you would be willing to let me do? And she’s like, well, I can stay overnight. And I’m like, okay. Cause she had elementary age kids, I was like, She said, you know, I need to be able to be home in time to get them on the bus, but I could come after they go to sleep and go back home wake them up and get them ready for the day. And I was like, okay, if you did that, that would save us this much money, you know, because we’re paying sleep there. And so I was like, okay, that’s two nights. And then as I talked to my dad’s sister about the option what, if I were to do this and. Robin can do this. Well, I would love to have time with your dad. I just can’t live with him anymore. What does that look like for you? And she’s like, well, I think if I came over at four o’clock in the afternoon, we could cook dinner together and we can, we’ll take the dog for a walk together and then I could get him to bed at night and spend the night here. And I think I could do that two nights a week and oh, okay. Well, that cut back even more of what we’d have to hire. And so that’s kind of how the conversation started was. What if, you know what, let’s give it a And I remember saying to my sister, let’s just try it for six months. I’m not sure what I thought was going to happen after six months, but let’s just give it a try. So that’s, that’s where we started was just looking at resources that were available and talking about it. What would it looked like if we tried it this way?

Karen Weaver: 8:46

Well, I think that’s great. I mean, everybody, certainly doesn’t have family relationships that work quite that well, but I think, you know, some of the things that you’re saying is, you really just have to first just ask, I mean, you have to be willing to ask people for support.

Rayna Neises: 9:03

You really do we forget that? I think we assume we know the answer. I mean, my aunt was maxed out and she was moving out. So that means she was done, right? Well, no, that’s not what it meant. What it meant was she couldn’t keep doing what she was doing. And so I think sometimes just. Like you said, you just have to ask if all they can do is say no,

Karen Weaver: 9:23

Right. That’s all they do.

Rayna Neises: 9:25

I couldn’t yes.

Karen Weaver: 9:27

That’s true. They could say yes. And in your case, you found that people were willing to say yes and sign up to what they were comfortable with, which I think made a huge difference for sure.

Rayna Neises: 9:38

And a lot of people talk about, well, my sister doesn’t do everything I do, or they don’t do as much as I do. And I’m like, Robin and I did not do the same things. We were at different seasons in our life. She had elementary aged kids, it was important for her to be there, to put them to bed and to get them up and on the bus in the morning and take them to school and things like that. So we each found what worked in our life in that time.

Karen Weaver: 10:02

Yeah, and I think that’s great. So let’s, let’s change up a little bit. Let’s talk a little bit about working with the medical professionals. It can be a little challenging at times. So what suggestions do you have to offer?

Rayna Neises: 10:16

I think again, a lot of my mantra throughout the book is team team team. And I feel like we talked about how the family became a part of our team. We talked about how professional caregivers were proud of our team and medical professionals we’re proud of our team as well. And we definitely experienced medical professionals that were not participating in being a part of our team at different times. We hit a season where my dad was. Having a lot of trouble, a lot of anger, a lot of struggles, and we are calling the doctor’s office and we’re telling them what’s happening and we’re not getting phone calls back. We’re not hearing anything back from them. And we were getting ready to go on summer vacation. My sister was going to be out of town and then I was going to be out of town. And this is a big deal for us. We’re like, we need to know this is taken care of, even though one of us would be there. We just knew that this needed to be dealt with. And we did the other person didn’t want to not know what was going to happen. I’ll never forget they wouldn’t return our phone call, but they called in a prescription for a medication to help him with the anxiety. My sister told me what it was and I said, isn’t that the commercial that says do not give to the elderly or people with dementia can cause sudden death. Well, I’ll be doggone it is. Right on the medication instead, not to be used with people with dementia. And we’re like without a phone call, without a conversation, they just call in a prescription and expect us to give him this medication. And we didn’t do it. I wouldn’t. I was like, no, we’re not doing that. Right. We’re going to have a conversation at the least before we do that. And eventually I got to a point where I was like, I’m not working with these people anymore. They’re not talking to us. They’re not listening to us. They’re not the right, I just got on the, on the internet and started searching. What can we find? Where can we find other people that will specialize in this that will listen to us. And, you know, we tried another psychologist. It worked for a little while, but long-term, it did not work. They just continue to put my dad on more and more medications. At one point he was on 14 different prescription medications. It was just crazy. And so finally I found a doctor who was a concierge doctor, who was willing to sit down with my sister and I look at that med list and talk about what our goals were for my dad, how he was doing, what struggles we were having, and really listen and help problem solve with us and help us get him off of some of the medications. And so we really found that when we found the right people for our team, it totally changed everything. And I think it can be hard because you don’t want to do, I was never disrespectful to the medical profession, but at the same time, I just didn’t feel like they listened to me. And so that was the big piece for me is you have to hear our concern. You have to understand. My dad, after he had the cancer surgery, he developed MRSA. And it just seemed like from that point on, we had this underlying infection issue that would rear its head and would cause problems. And it was so hard to get somebody to really listen to us about the struggles with that, because he wouldn’t have typical symptoms. Like he wouldn’t run a fever, but yet he’d be crazy. And. Our caregivers probably know when, UTI or different types of infections to can really impact the brain. And so his behaviors were obviously something was wrong, but they wouldn’t, they wouldn’t take that. They wanted to have, a urine sample. Well, that’s easier said than done when you’re talking to somebody with Alzheimer’s, you know, I don’t know how many of you have tried to get a urine sample, but man, that can be a tough trick. Sometimes we tried hiding the hat in the toilet and he’d take it out. It just, it could be a quite a drama. So really finding the people that listened and understood the struggle was so important for us.

Karen Weaver: 14:12

yeah,

Rayna Neises: 14:13

But I think also tracking the medications tracking the side effects, tracking the changes, and I have available on www.noregrets-book.com at the very bottom are free resources. And I have our sample chart, which is also in the book of how we kept track of the medication. And my sister did an amazing job of every time a change was made documenting that so that we could go back in the history. The number of times she would catch something, the doctor would say, well, let’s increase this. And she’d be able to look at our little spreadsheet and say, we tried that two years ago. And these were the, this is what happens. You know, this why it didn’t work. So because that history was so important, having it right there on that spreadsheet is really helpful. So I have that resource for free that you can download copy of that spreadsheet for yourself to be able to track and just see all the things because med lists are, you know, for me, there were simple, Okay. this is what I’m taking, how much I’m taking, but this includes who prescribed it. What it looks like even like the color and the shape of the pill so that when you drop that pill box or when the doctor stop giving that medication, you know exactly what that looks like. Even if the pill bottles empty. She had amazing tricks and so that’s a free resource that’s available.

Karen Weaver: 15:30

Yeah. And I think people will appreciate definitely hearing the, the tricks and the tools used, because that is not easy. Just medication in itself is a huge issue. Managing the little pill boxes and all the little tricks, but changes are the tricky piece too, because sometimes the doctors don’t remember themselves, you know, why a change was made. So we know that everyone says the caregiving is a season. And, and certainly, when you’re in the midst of the caregiving season you don’t necessarily think about always the end because you’re too busy trying to keep up with it just the day-to-day of it all. But, but you do talk about the fact that the season will end. So And you say that often. So how, how did you prepare for the end of your, your caring season? What did that look like? Did you, were you able to prepare or not really until after it was over with it. Talk a little bit about that.

Rayna Neises: 16:36

I think that can be one of the trickiest things, because there can be so much guilt in feeling like you’ve put your life on hold for this unknown period of time. And when we’re out of the season, we’re going to get to have more time in these other things that we kind of are looking forward to, and that makes us feel kind of guilty. It can be really tricky because obviously nobody knows how long the season’s going to last. And most of the time, I think it lasts longer than we imagined. I mentioned earlier, I said to my sisters let’s do this for six months. I don’t, again, I don’t think I expected him to be gone in six months. I mean, I knew that we would just need to reevaluate, but I don’t, I certainly didn’t expect to do it for four and a half years when we walked into it. It wasn’t like I was thinking of this as the rest of his life. And I do think it’s difficult, I don’t know that. I prepared for it. I thought I was prepared for it, but it definitely was a surprise. And I think probably for most people, it is a surprise. You know, you’re taking care of someone who has a terminal illness who has heart failure. But you live with that. And like you said, you’re surviving, you live with it every day. You look at the symptom or the behavior, or whatever’s happening right here, and Right now, and you deal with it and you overcome it and you move to the next thing. The one thing I did do for the last year of my dad’s life, because of my personality and knowing myself well, I’m a fighter and you don’t really want to get in the way. So I knew that and I was fighting for him. I was fighting the medical profession for him. I was fighting with employees at times with, for him. I was fighting. That was a lot of what my role was to be his advocate and to be dogmatic about that. But on the same side, I knew in my heart that I ran the risk of fighting beyond his fight. And so my prayer became Lord, help me to know when it’s time to stop fighting, helped me to be his advocate and to be his voice, but it has to be his, and don’t let me get lost in it’s just fighting for the fight. And so I really did pray very consistently that the Lord would help me to know when it was time to let go, because I knew my nature was not to do that. I knew my nature was not to let go. And so it was something I was very aware of. And the last week of his life, he had had a blood clot. He had survived surgery, really did very well with surgery and rehab. He had to go to a rehab facility for three weeks. So we had 24 hour care with him there at the rehab facility and he was walking again and really seem to be doing pretty well. I mean, we weren’t back to where we were, but we had made progress going forward. And so we had done some things in the basement and moved him into the basement of the house. So he, he left rehab and came home and we really thought this is where we were. And we had in-home care coming. We had PT coming, we had all of these things that were helping us to progress towards healing and he was, he was doing Well, but each morning my prayer was Lord, make sure that I’m ready to let go when it’s time to let go. Thursday morning, I was sitting by his bedside and talking to him and praying, and I said, you know, Lord, help me to let go when it’s time to let go. And in my heart, I heard it’s time. I was kinda like, huh, I don’t, you must not have understood what I said the Lord is, are you serious? Is it really time? And I looked at my dad. And just that day, there was just a peace that had settled over him that wasn’t there the day before and the struggle to sit up in bed and the struggle to, get to the ends of the bed and do those things. It wasn’t there that day. There was a peace and the Lord told me that was the day, it was time to stop fighting. And that was the beginning of me letting go. We ended up enrolling him in hospice the next day. And he was actually gone two days later. It was very quick and it was really difficult for my sister because she wasn’t it was hard for her because she, I had always been the fighter. So it was like, what are you doing? You stop fighting. No, why didn’t stop fighting? And it was like, I just knew, I knew that it was time. But I don’t know that you always get that chance to know that, but it was definitely something that helped me to be able to let go when I needed to, but we fought hard all the way up until that point. So I think it can be a real surprise. And the one thing I would encourage to understand is that’s though, there’s a lot of grief. And though there’s a lot, especially in a terminal illness with someone that is at that point in their life don’t be surprised that it will be harder than you think. So I think it’s. Grief is a hard thing. And I’m thankful for the grief that I experienced throughout his decline. But after losing him was a whole different ball game.

Karen Weaver: 22:03

Well, certainly it’s also a testimony to your faith and how big faith played a part in you being able to navigate the whole process, but certainly being able to navigate the end, which is a surprise, but not a surprise. You know, all that, this thing in time is probably the best way to put it, because I think that death does come as a surprise, but then it’s not a surprise when you look at what’s really happening to the person. Yeah.

Rayna Neises: 22:37

In the thick of it. I think it does feel like a surprise, but looking back, like you said, it’s not a surprise.

Karen Weaver: 22:43

Right, right, Absolutely. Well, thank you so much for all that, that sharing the richness of it. Is there anything else you want to pass on to listeners before we close?

Rayna Neises: 22:58

I think just a reminder again, that No Regrets is available at all major retailers. You can also visit www.noregrets-book.com to find those extra resources as well as I will be walking through No Regrets in a community-based setting here in June and July. So you can learn more about that as well. The opportunity for us to talk through chapters, actually get on zoom together and have some Q and A time, and just really have an opportunity to walk through the book with me as well. And I would love to invite anyone to join me in that. There’s no fee for that. Just buy the book and sign up and I love to be able to talk with you more about the experiences I had.

Karen Weaver: 23:38

Well, that sounds great. So listeners if you are a caregiver, this is an opportunity for you to have some one on group time with Rayna talking about her experiences and how that can support you on your journey. Thanks again.

Rayna Neises: 23:53

Just to remind A Season of Caring Podcast is created for the encouragement of family caregivers. If you have medical, financial, or legal questions. Please consult your local professionals and take heart in your season of caring.