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 talk about dying. And we definitely had an amazing guest, Marine Kures, who has an End of Life Coach. And you know, this time of year is the time that end of life is just on the top of mind. We’re coming on the three-year anniversary of my dad’s passing. And so I thought this was a really appropriate time to just talk about that transition that happens. It’s not easy for any of us. But it’s part of life and being able to have these conversations make it easier. Not that it will ever be easy, but it make it easier for us to really know and understand what our loved ones want. Dying, it’s just an uncomfortable subject. Isn’t it?

Karen Weaver: 0:58

Absolutely. You know, like I also laugh about the fact that everyone wants to go to heaven, but nobody wants to die. And certainly I have found that, especially the generation, right before me, that it’s difficult to have the conversation about dying or even being ill. And for some reason there’s some, story behind if we talk about dying then were going to die, which we know is not true. I mean, we don’t know what’s going to happen to us from day to day, but, certainly not talking about it. It’s not something that’s going to prevent it from happening, but I thought Maureen was delightful and I thought everyone could use an End of Life Coach. So I think what she offers and contributes is definitely important. And I’m not, I’m not sure how much people really are embracing. That type of coaching, but I certainly can see the value in it.

Rayna Neises: 1:58

Well, I like the fact that she’s talking about, don’t wait until you’re there or don’t wait until you even think you’re close to being there, but start these conversations now. Start making sure that people know what you want and have the conversation regular and often, which we say that here as well. But I really liked how she just brought out the fact that at her age, she’s talking to her 20 something kids and just making sure they know what she wants. And from being a child who had. You know, a good feeling of what my dad wanted. It really did make such a big difference for us in our journey. I can’t imagine how much more helpful it would have been to have someone like Maureen helping to guide the conversation because her experience is just amazing, when you think about how many families she’s experienced as a nurse, in an ICU that are facing this journey. They had the crisis and now they might be getting better or they might not be getting better. And, you know, really seeing that from the trenches, which was her heart of why she decided to take this next career path of going into, End of Life Coaching.

Karen Weaver: 3:13

Yeah. And also, you know, I really thought it was one of what, how she was able to have such specific. Conversations with her parents in terms of, you know, specifically what did they want and she gave scenarios and, and I think that helps make it real. I mean we’ve talked about all these conversations that need to have them the Power of Attorney or Health Directors or whatever the will. There’s so many things that need to be taken care of from a logistical standpoint, but the conversations are unique in themselves because things change over time. And of course, what a person sort of says, this is what I want. Now. It’s really important to understand that, five years from now that scenario may change for that person. And that person may have a different perspective on how they wish you would handle something like that. So I really appreciate how she said she it’s not a one-time thing. It is something, like you said, we need to have the conversations over and over again. Or as often as we need to have them. And I was curious, how did you navigate those conversations with your parents?

Rayna Neises: 4:30

So with my mom, I was too young to be a part of those. And I’m not sure how she and my dad had those conversations. I really don’t know. And that I think was one of the things that stood out to me when we reached the end of her life, it was hard. It was so hard because it was not what we expected. And she was kind of going along just her average at home, and then suddenly had the psychotic break that just changed everything. And within six weeks she was gone and it was not something that we really. They couldn’t tell us what happened. They couldn’t stop the looping that she was a part that she was in. And so. It just was the end. I remember we spent a period of time in the hospital and talking to the doctors about what was happening and they just could not stop this loop. And he was said specifically, I think it’s time for us to shift and look at comfort care. This was really back when hospice was an option, but it was either hospice at home or nursing home. And so there wasn’t an option of having both. And so we made the choice that of having mom go to a facility where they could help to care for her physical needs. We were just really unprepared. I know I was, I don’t know exactly how everyone else felt, but it felt very surprising the kinds of decisions that we were having to make. Realizing when she got to the point that she couldn’t swallow medications, that that meant there weren’t a lot of choices at that point. That gave us one drug option. She had had so many different medications trying to stop that loop that she was in, that had all of that had to stop. Once she left the hospital and. We were doing just pain meds, which didn’t seem to have the same effect that the other things were. And eventually even the pain meds, she was on, she couldn’t swallow. And so we couldn’t give her those. So there was a liquid that they were giving, but it wasn’t as strong as what she had had before. It was odd as her daughter to see that she was thirsty, but not to be able to give her water. And just so many of those things that we really struggled, I struggled a lot with. Understanding what was happening and how to help her. I think, you know, with my dad’s passing definitely more information. I was older. I did the research. I had the conversations, I understood a little bit more. What was happening as systems were shutting down and things like that, but the conversations never happened with me around with my mom. Now, with my dad and his diagnosis, we had some conversations and we knew paperwork was in order and those types of things. But I think each situation it’s just tricky, when they go in to have a regular procedure, it’s like, do we have, do we, my sister asked, you know, we had, he had cancer. removed and we knew, he didn’t diagnose at that point, but he was doing pretty well. It was like, Do I sign a DNR? Do I not fund a DNR? You know, because he really could come out and be just as good as he was. And I’m like, well, no, we want him to come out and be just as good as he was. You know what I mean? I think each situation can be tricky. And I did appreciate her examples because for my experience, that was the hardest part was, are we there? Are we at the point where we let go? Are we not there? How do we know? You know, it’s just, it’s tricky.

Karen Weaver: 7:52

Yeah. Yeah, no, I can. So relate to what you’re saying. I remember when my mom became ill. She, she fainted. So that was the first event. And then they said she needed a pacemaker. And from there everything just started snowballing cause she actually had vomited in the emergency room and fluid had gotten into her lungs and they were so focused on the pacemaker. They didn’t even realize it. And the conversation eventually got to the point where she was on a ventilator and we totally we’re unprepared because we had not had any of those conversations previously. Fortunately, they did have some paperwork in order, but it was more or less my husband and I had our paperwork together and we would go to them and we would say, this is what we’ve done. You may want to consider doing this, so they did have some paperwork together. And then with my dad. He was never able to really have any conversations. And then of course, when he had his memory loss issues it became more of a challenge at that point to even have conversations. But one thing I didn’t know about both my parents, no matter what. They would prefer to be living than not living. So it was like, whatever it takes to keep us here, that’s what they wanted to do. So I did understand that part of it, but, but certainly it’s, it’s wonderful. If you can really have the conversation and people don’t feel discomfort and having a conversation because it’s talking about death and transition and You don’t things that people would rather not think about?

Rayna Neises: 9:38

I think it’s important to have the conversations and to get over the discomfort. But I do think it’s difficult in that. Making one statements. Does that really work?

Karen Weaver: 9:52

No.

Rayna Neises: 9:54

You know, when your health is declining, it’s so complicated. It’s not as simple. Yes or No. You know, neither of my parents were ever needing to be on a ventilator at the stage where we’d have to say, no, we’re not doing that. But yet each of them had reached a point where someone could say, yeah, put them on a ventilator and keep them alive. I think with a terminal illness, like what they had, we knew that the only goal we could reach was will they be as good as they were before? Because we weren’t going to get anything better. We weren’t going to cure this. So my dad ended up passing away after having a blood clot. And we had surgery. We, and, you know, we talked to the doctor and said, what’s our options here. And the reason why he had surgery was the pain was excruciating. She’s like, there’s not really an option not to take that clot out. And so he went through surgery. He handled surgery very well, and his initial recovery really seemed pretty good, but eventually his heart and everything else was just not strong enough to give him the full recovery to get, even back to where he was before the clot happened. It was surprising because it wasn’t something that we saw coming. You know, he had heart failure, which he had an atrial valve leak. It shouldn’t have been surprising, but it was that we were in that place having to look at that decision. But I remember at that point, so the cancer surgery was five years before that. So the blood clot surgery, my sister and I had the conversation. Do we have a DNR now? And I’m like, yes, this is now’s the time when we say, if they lose him on the table, they lose him on the table. So it was easier then I expected it to be, to see the difference in those two things. But I think that’s part of what, when you’re having conversations with your family, you don’t have the specific situation right there to talk about. So I love the scenarios that Marine offered.

Karen Weaver: 12:00

Yes. Yes. And that, and I appreciate that as well, because I think this scenarios also helped the conversation. When you talk about as sort of in terms of a story, or you relate to something that happened to a family member and, help them to make some tangible connection. I think it’s easier to have the conversation with them so that they can kind of visualize, what you’re saying and what it really means. But certainly it’s not an easy course to navigate. So. That’s why I said everyone could use an End the Life Coach. Most people don’t know what they don’t know and they don’t know what they don’t need. So I think that that’s probably the, the challenging piece of that is because it’s hard for people to really understand how important it is. But if you really look at death as really being a part of life, instead of something that, separate and something that’s going to take us away from what we know. I think it makes a difference. I think it’s a little easier if you are navigating as a person of faith, but certainly I’ve met plenty of persons who are people of faith who still struggle with having the conversation about death and dying?

Rayna Neises: 13:27

Yeah, I think we just, we know what here is like. And what, you know is always more comfortable than what you don’t know. And so I think it’s difficult to look at what we don’t know and, and embrace it, but it does help definitely to have a different perspective and to realize that. Nobody gets out of here alive. That’s just the way it is. And so

Karen Weaver: 13:50

Yes, it did.

Rayna Neises: 13:54

I did like free offer that she had given to us. The conversation starters, she had seven conversations starters. And one of the things that I thought was interesting is who to have the conversation with. Because sometimes I think we’re pretty narrow and she was commenting, when I interviewed her to talk to your doctor about it and I thought. I don’t know that my doctor even knows me much less. He would remember, but I think it does help to have those conversations because that person, even if he’s not treating you, he could be talking to your family members as well. So being able to give that information, or when she said she had to stand up to the surgeon five different times to refuse the surgery. That was amazing, but I can totally see that happening. So doctor was one of them. She talks about parents. I don’t have parents left, but I think for my husband, if something happened to him, I’m the one making the decisions. His mom needs to know what his desires are so that she’s not questioning me. So we can have that common ground to be able to support each other in it and not find that fracture in the family. Obviously a spouse, adult children also. You know, many times we’re thinking about wanting to know what our parents want, our aging parents, but again, do our kids know what we want. Do our kids understand so that when a spouse is having to make that decision, they can feel supportive Extended family. You know, you have people you’re very close to aunts and uncles maybe, or even other family members or people who are like family to you. Just making sure that everybody’s on the same page. I can see where that can be really helpful. So, listeners, remember that you can access Maureen’s free resource at startthetalknow.com. That’s startthetalknow.Com. It’s just a simple little guide to give you some ideas of how to start those conversations with those different people in your life. Whether it be for you personally, or for the person you’re caring for. I think it can be really helpful So you can download that free resource and that would be really helpful to you. I think listeners. But we also want to kind of stop and think, I don’t know what, what would we have done differently? You’ve lost your mom. It sounds like it was really difficult to get anybody to talk about what was happening to her. So what, what would you have done differently?

Karen Weaver: 16:25

Well, I think I’ve learned so much, you know, over the journey. I think maybe just the way I would have approached having the conversation. So, maybe, getting help getting some support so that I could be more prepared to have the conversation. I mean, I tell clients all the time that. When you prepare for a conversation, it’s always going to be a better conversation than one that you just have. And so I would say that. Prep would be one of the things I would think about, and then maybe have a conversation with someone else who could give me some guidance or tips about how to best have the conversation, when have the conversation, those types of things. And to maybe also have a conversation about thinking through, what do I anticipate will be some of the objections or pushback from my parents that maybe I can help to think through ahead of time so that they can make it, a better conversation. The other thing that, I’ve. I’ve done is I’ve tried to model for my children, so trying to have conversations with them. And, you know, I’m learning from my experiences with my parents, how to better support my children as well. But certainly I would say preparation would probably be the, but one factor. What about you?

Rayna Neises: 17:59

I think for me, it would be talking about it more often. I think it’s interesting with a degenerative disease like my dad’s, everything seems fine until it’s not right?

Karen Weaver: 18:14

Yes.

Rayna Neises: 18:15

I don’t really remember. You know the point in which my dad forgot my mom. I don’t really remember the+ last day my dad said my name until the very last week of his life. So those things creep up on you. And I had people say to us after his passing, oh, I’m sure you have everything in order. And you know exactly what he wants. Like, no, no, we didn’t. We had things in order, but we didn’t have, who do you want to do your funeral? Well, I couldn’t ask him that because by the time we were even thinking about his funeral, he couldn’t talk about it, you know? And so we were able to model for him what he did for my mom. And that was something that I think gave us comfort. But we knew that he, one thing that came up for us that. Really made us stop and scratch our heads a little bit was my dad had talked multiple times about moving where my mom was buried. My dad had a family cemetery in a small town where his family was all buried and he and my mom had purchased plots in town, near where they lived. And of course, my mom was buried there. She had been gone 20 years by the time my dad passed away. So she’d been there for a really long time, but he had literally, when he was still able to have conversations about moving her and wanting to be buried in Dawn, Missouri. So when it came down to it, that was something I struggled with a little bit. And finally, as my sister and I talked through it and we talked with my aunt about it. We both came to the conclusion well, if he had really wanted to do that, he could have done that. And he didn’t. So let’s go ahead and leave it. Like it is the headstone. Was there, all of those things and let’s go ahead and bury him, there by mom, and that’s where they are. But it was one of those things that. We didn’t really know how serious he was. He had brought it up multiple times and when I brought it up to my sister, she’s like, oh yeah, he did mention that to me and my aunts. No. Yeah. We definitely had a conversation about that. So we all had talked about it with him at different times, but he had never done anything about it. So it made me kind of step back and think. Did he really want to, or was it just an idea that he had, you know, it just kind of left some questions that I wish I had thought about it again when he could still talk to me about it, but I really hadn’t thought about it. And the next thing you know, we’re, talking about his funeral and then it’s like, oh

Karen Weaver: 20:44

Yeah, yeah.

Rayna Neises: 20:46

Also we were able to donate her brain to research for Alzheimer’s and we weren’t able to do that with my dad because of the timing of him passing much quicker than we expected him to. But I know that he really was involved in research and that was something he would have liked if we could have made it happen. I don’t think he was disappointed that we didn’t make it happen, but, I think things like that are great conversations for family members as well, to really understand. How important that is to them. And to know that you have the context in place, we had talked about it and we had thought about it. Years before we actually were at that point. So when we reached that point, then it was like, oh, we don’t even have a phone number to call real quickly. And again, you know, he was on hospice on Friday and gone by early Monday morning. So there just wasn’t a lot of opportunity there. We already had things arranged for my mom because of the period of time that we had that we knew we were losing her. So I think those are some things I would do differently is just talk more and Maybe ask more questions about some of the things when things are mentioned. Know that that mentioned then could bring a question later, so make sure you tie that up.

Karen Weaver: 21:57

Absolutely. Yeah. Yeah. Good points. Good points for sure.

Rayna Neises: 22:02

So listeners, I hope that our conversation on dying today has been one that gets you thinking. I think that’s the key is just to be able to spend some time in the discomfort and really think about the things you might not know and make sure that you find the answers to those things, both for yourself and for your loved ones. I think Maureen said it’s a gift to be able to give people the understanding of the knowledge that they need to make the best decisions for you. And so we want to make sure that we challenge you to do that so thank you Karen, for a good conversation today.

Karen Weaver: 22:38

Thank you.

Rayna Neises: 22:39

Listeners just a reminder A Season of Caring Podcast is created for the encouragement of family caregivers. If you have legal, financial, or medical questions, please consult your local professionals and take heart in your season of caring.