Rayna Neises: 0:07

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 Aly Nieses, your cohost and today we’re going to discuss further the topic of Advanced Directives, that our guest Kira Reginaldo. brought to us last podcast. Aly, this feels really alien. I know how important it is and I understand why we need to have these conversations, but it feels like there’s so many different titles, terminology and concepts, and I’m kind of a black and white thinker. And so it just feels big and kind of scary to be completely honest. So let’s just try to kind of break it down a little bit more. I think Kira did a great job of really simplifying things, but as I got into looking at all the different pieces involved, it wasn’t quite as simple as I thought it was. So, let’s just start with talking a little bit more about what is an Advanced Directive or a Living Will, how are they the same? Are they the same? Let’s start there.

Aly Neises: 1:11

Okay. So I think you’re hitting the nail on the head. There’s a lot of jargon. There’s a lot of words, big words out there that are kind of scary. Plus they get very confusing. So Advanced Directive or Living Will are the same thing. What they are documents that are going to lay out what you would like to happen to you in the case of end of life, or you’re not able to make those decisions for yourself. So it’s your wishes. And then it can be everything from the who you want to make those decisions for you, whether or not you want CPR performed, but even they can dictate, what kind of funeral you’d like? Would you like to be buried? Do you want to be cremated? Those kinds of things can also be part of that. So let’s just giant document, that kind of just outlines what you need, what you want, what your wishes are, and it’s going to help other people execute those wishes for you and be as a reference is probably the best way to put it. But it’s also a legal binding document. Somebody couldn’t say, well, that’s not really what mom would want and you can be like, but that is what she wants. This is what she said. That being said, these documents need to be updated if things change. So you cannot say something in a Living Well, and then, you know, say something to one of your children, let’s say, that that’s not what the Living Will says. Well, legally they have to do with the Living Will would say, I mean, things can get complicated and messy otherwise.

Rayna Neises: 2:59

So it’s definitely important then to make sure that you think about it as you go through different phases of life. I’ve been a relatively healthy person. I’ve had one major event that came from one surgery in my life and that major event, ended up being, easily taken care of in perspective. But if things were to change in my health, then I definitely would have a different re erence. How much help I wanted to continue to live. So that’s a really important part I know Kira mentioned that as well, that you just tear it up and do another one. But I think that sometimes these questions feel like they’re so big and you don’t know what the future holds. And so it’s good to take that off the table and say, I don’t have to worry about anything changing, just right now, if something were to happen to me, this is what I would want them to do.

Aly Neises: 3:47

Yeah, I think you’re exactly right your Advanced Directive shouldn’t look the same that they would from like a 30 year old compared to an 95 year old. Just things have changed you might usually done some life during those times and you’ve experienced things and that’s going to influence what kinds of things you want done. So these are living documents, so they should be updated frequently. Just so your wishes are executed the way you want them to do.

Rayna Neises: 4:20

That leads a little bit to what Kira had talked about with that health care agent, or we use the word with my dad, the DPOA, the person who is making those decisions for you when you’re not capable of making them. Obviously, with dad, he could still talk and walk and do a lot of those things, but having the ability to process all the information about what the doctor was saying to him was not there. And so someone else needed to be able to grasp those concepts and make those decisions for him based off of what he had told us through his documents before he lost his ability to understand. I thought it was a really important statement that she made about understanding who it is that’s going to make those decisions for you.

Aly Neises: 5:08

A hundred percent. I love how she talked to her mom and her mom’s like, Oh honey, I can’t do that for you. Like, I love you too much. I want everything done. And she just assumed that her mom’s a nurse and she knows about healthcare and that was going to be easy for her and her mom’s like, Oh no, no, no, you’re going to have to pick somebody else. And I think that’s something that happens a lot is that we don’t actually think about who is going to make those decisions for us in those times. Durable Power of Attorneys or Healthcare Agents they’re the people that are going to make the decisions for us or execute our wishes for us when we can no longer do so. Now, that may be that we don’t have the cognition to, like, in the example of your dad, you know, otherwise very healthy, but couldn’t comprehend those decisions? Or the treatments or even what the doctor was saying sometimes, but they also can mean if you’re in a coma or you can not communicate for some reason. There are ways that somebody would be your voice, be your advocate, be the person that’s going to execute those wishes for you that you’ve already lined out. So some things that you’re gonna want to look at and have a conversation with your loved ones. I liked that she talked to her mom about it. Cause if she would have just assumed, I think, you know, something would have happened to Kira. God forbid, you know, her mom would be like, what do you mean DPOA way? Like, okay, well I want Kira to be ventilated and to have a feeding tube and I want you to do everything, but maybe that’s not what Kira had wanted. So, I think you just need to have a honest conversation with whoever you’re considering and kind of feel out and see that initial reaction. Could they make the decisions in a crisis? Could they execute your wishes without floundering or double guessing? Could they ask questions and be your advocate to your doctors? Can they reassure and talk to your other family members? Are they good at communication? You know, they may know you really well and be really calm in a crisis, but they can’t communicate with the darn. That’s not going to be a very good healthcare agent for you then. So think about some of those things as well. I know. With your dad, you had to make a lot of decisions, but you also kind of knew him. You knew him, you knew his likes, his dislikes, what kinds of things he would have wanted. And I know his disease in the beginning, you might have asked for things a lot differently than you would at the end. Do you want to kind of elaborate on that with our listeners, so they understand why things did change?

Rayna Neises: 8:05

So 14 years is a long time and obviously the first, I would say six of them, he was driving, he was doing things himself. He was still paying his bills. a lot of those things were still going well for him. He just knew he was forgetful. He knew that he didn’t always, remember or wasn’t processing, wasn’t quite as sharp as he once was. I look at his heart was strong. He was healthy. And in fact, even at the time when I started to care for him full time, he still played volleyball three times a week and went to the gym three times a week. He was extremely physically fit and he had a good quality of life. He loved life and loved being around people. And so I would have wanted to do more for him at that point. Then four and a half years later when he had given up, it was obvious that he was done fighting. And so it didn’t make sense for us to fight for him. So I think it made it easier than I expected to make those decisions. Because we saw how he handled it, he was having difficulty with his heart rate, being consistent. He was not as strong. He was 85 years old. His body was tired and worn out. And so it seems like it was easy to make those decisions on his behalf at that point, I’m just thankful we didn’t have to make the decisions earlier because I think that would have been difficult for me to say, he’s done and letting him go when I didn’t feel that way. So I think that as we think through letting those changes happen and realizing, just being aware of the changes, then that also helps the person who’s having to make those decisions.

Aly Neises: 9:44

I agree. something to really think about and have conversations about are, and they don’t have to be cold and hard and black and white, like when you first start having this conversation. I think that’s a common thing that happens. it’s all or nothing, but it doesn’t have to be. You can also dictate when you want things to be stopped. Like let’s say you want to be mechanically ventilated. So that means that they’re going to intubate you or put a tube in your throat to help you breathe. So that may look differently if they think that they can do that for a week and then you’re better versus you have to have that to survive. So those are things that you want to look at too. Are there things that for sure you want done, you know, do you, for sure want us to perform CPR on you no matter what? Do you want us to intubate you? Do you want to be mechanically vented, no matter what, or are there times that it’s okay for your agent to say, we don’t have to do this anymore? Now think about those kinds of things as well, but also look at your state mandates for those kinds of things, because that’s going to help dictate how those things have to be worded. Or what you can and cannot put in your advanced directives. That varies. So just something to think about, something else to think about I run into this all the time, when I’m taking care of people and it’s been long before I even worked hospice, but a DNR does not mean that if you’re having a heart attack, we’re not going to try to help you, be comfortable or help treat the heart attack or anything like that. What the DNR means is that your heart has stopped and we’re not going to try to restart it. So you would have to not have a heartbeat and have a DNR in place for us not to try to restart your heart. So that’s what a DNR does. There’s also, in some states you can have a DNI, which is a do not intubate. So what that means is that we could perform chest compressions on you or push on your chest to try to restart your heart, sometimes we can give medications to try to restart your heart, but we’re not going to put a tube in your throat. Like I talked about before to make you breathe. So sometimes you have to have. It’d be instructive for both of those things. It depends state to state as well, but kind of look at those kinds of questions. And again, do you want to be, and did they did no matter what do you want that intubation to stop? Do you want antibiotics? No matter what do you want artificial feedings, so a tube feeding for a short time or no matter what, or you never want it? I know we’re talking about a lot of overwhelming things, especially when I’m adding this on top of it. Like now you have to think about all the ifs and whats you might want, but I think just slowly kind of work at it. And so we kind of process it and try to of think of what you may want. And it’s okay to be like, Oh no, I want it all right now. Like, no matter what, give it to me to try to save my life, do whatever you have to do. That’s fine. But that’s completely fine. But just think, cause I think once we experienced things more or see other people experience things more then we’re able to go, Oh, maybe I don’t want to be vented. Like maybe I don’t want to have antibiotics for sure every single time, no matter what. Maybe I don’t really want a feeding tube placed if it means I have to be with a feeding tube for the rest of my life. I think once you come up with an initial plan. And like we talked about go ahead and change it. It’s okay to change it. That’s fine. As Kira also mentioned, you can put addendums in your Advanced Directives. So this would be examples of you don’t want to be intubated, but in the example that she gave, which is very pertinent, you know, we are living in a pandemic, is like, COVID. Maybe there’s something that’s very specific to if you would get coronavirus, what you would like your family to do in those situations. It may look a little different than if you had cancer or, in a car accident. It’s a little bit different. So there are addendums look at your state regulations on those addendums and kind of familiarize yourself with those, as well. And become more comfortable with that. You know what, that’s a specific situation that’s going to be occurring to you during your health journey. And so in that situation, you could direct exactly what you want. So think about those kinds of things as well.

Rayna Neises: 15:12

And it’s helpful to realize, especially when you have something like coronavirus that has a tendency to show a specific progression or even you might find if you’re diagnosed with a certain kind of cancer, there would be certain things that, you know, that once you reached this point, you really wouldn’t want the rest of those things. Well, I think it is important to considering where you are, what season of life you’re in. I mean, you’re getting ready to be a new mom. You want everything because you want to be here with her. If again, you’re 80 years old and you’ve lived a long life and raised your children and watch your grandchildren go. And you’re reaching the end because you have cancer or you have emphysema, or you have some of those other things, it definitely is going to change. So helping us to get a handle on that. Just again my saying all the time, it’s the season. This is for this season. And when the season changes, we get something different. I do think it’s so important to really consider these things and to just wrestle with it. I think it is a wrestling process of what do I really want, and what’s important to me. And it’s not something you should wrestle through alone, but you should wrestle through with the people that are going to help make that decision. Whether it be your loved one, that you’re wanting them to be on the same page with you, but you aren’t confident they can make those tough decisions or the person that you’re actually asking to make the tough decisions. I think the more people who know and understand what your desires are, the easier the process is going to be. Because when you’re at this point, none of this is easy on, your loved ones. Because they can’t hear your voice. They can’t know what you really want. This paper’s the only thing that’s going to share that with them. So really making sure that. You have those conversations so they can hear your voice in their head and have confidence in the decisions that they’re making on your behalf. Like Kira said even making that video for your friends or your loved one, who’s making those decisions, can give them a whole different piece of confidence. That can be really helpful in that time, because there’s so much going on emotionally when you reach this place where you’re having to make these decisions.

Aly Neises: 17:20

No. I agree. I love that. She gave that suggestion, what a beautiful way to like validate and, encourage whoever is making those decisions. This is what I would want. I do want you to tell them no more, or I do want you to tell them yes do it all. Whatever that looks like for you. Just so they can play it as often as they need it, they always have it. I think if also, if we’re talking about other things, like it’s a memory, it’s some, it’s a little piece of you. But no, it’s not you laughing at a birthday or sitting at a graduation, you know, like those really fun memories, but it is going to be something that they’ll hold on to in the end too. So I love that option though. Beautiful.

Rayna Neises: 18:09

Even just when we had the conversation as a family of what my dad wanted. And he said to us, I want to be at home as long as possible that just played over and over in my head. That gave me direction and purpose of what to do for him and what was important to him. And I think these things can do that same thing for you. So. As we’ve taken a look at Advanced Directives. We just hope that listeners, again, these are topics that are not our favorite things to talk about because of the fact that we’re talking about the end of journey and that’s where we’re ultimately going, but not where we want to go and quickly. It can be hard, but I want to, just to again, give you an opportunity to wrestle through it and to have the hard conversations, as I always say, not one conversation, but a conversation after conversation after conversation, so that your loved one, and you have clarity around this topic and really can confidently say, I know this is what I want. I know for myself, that’s a challenge right now. I don’t know what I want clearly. And so I do have an Advanced Directive, but it probably isn’t as clear as it should be. I know it doesn’t have quite as many of the scenarios and things like that is what I’m seeing. So I encourage you to take advantage of those resources and wrestle through it, have the conversation for yourself, even if you’re the one who is in the season of caring, you need to take this on as well, but then it also can help you have those conversations with the person that you’re caring for. If they don’t have that paperwork in place, or if it hasn’t been modified lately, if you haven’t had a recent conversation, struggling through it together can really give you peace of mind when you reach the end of the road. So listeners, we have resources listed on the notes page. Definitely go visit that five wishes, just some other great resources for you to check out and to really, be able to do some research. There’s some great things to help you think of the questions and the scenarios that you’ll want to cover in your Advanced Directive. So be sure to take the time to do that, visit the website and the season of caring.com/podcast. And you’ll find the link to this podcast with the notes that have lots of links to different resources. So be sure to visit that and check it out, get your own paperwork in order and the person that you’re caring for. Thanks again for listening. And just a reminder, A Season of Caring Podcast is created for the encouragement of family caregivers. If you have medical, financial, or legal questions, please contact your local professionals and take heart in your season of caring.