Hope for living, loving and caring with no regrets!

Being Prepared for End-of-Life

Episode 72

This week, Rayna Neises, your host, talks with Maureen Kures.  Maureen has been a registered nurse for over 35 years and helps families as an End-of-Life Coach.  Her passion is to assist them through facilitating decision-making, documentation, and discussions of end-of-life transitions. She draws from her vast experience from the bedside point of view, home care nurse, and family caregiver for her father.  She has a big heart for caregivers and shares the following:

      • Having the conversations ahead of time can help you avoid making decisions leading from pure emotion.
      • End-of-life conversations should happen annually. Think of it as a gift and have it sometime during your birthday month.  The biggest gift we can give is the gift of knowing.
      • There have been many improvements in comfort care. Stopping treatment does not mean stopping care.
      • Choose a health care agent who can honor your wishes no matter what.
      • Have the courage to start the conversations well before they are ever needed and bring everyone together as a family.
      • Everyone should take the time to have an end-of-life conversation with their physician letting them know their wishes and permitting them to follow them.
      • Visit startthetalknow.com to find “Speaking of Dying, Scare Ya to Death: Seven Prompts to Get the Conversation Started.

Transcript

*Transcript is an actual recount of the live conversation

Rayna Neises: 

Welcome to A Season of Caring Podcast where there’s hope for living loving and caring with no recurrence. This is Rayna Neises,your host. And today we have special guest Maureen Kures. After 35 years as a registered nurse, Maureenis no stranger to end of life issues. She’s seen firsthand the devastation that can occur when families don’t have potentially difficult discussions with their family members. Today, family’s hire Maureento protect and empower them through facilitated decision-making, documentation, and discussion of end of life transitions brings uncommon advocacy, provides safety, clarity, hope, and guidance to her clients. Welcome. I’m so excited to have you here today, Maureen.

Maureen Kures: 

Oh, thank you for having me Rayna. I’m very excited to be here.

Rayna Neises: 

I’d like to start with all of my guests a little bit about their caregiving season. Cause I know that you have your own a little different season, but share with us a little bit about your experience.

Maureen Kures: 

Well, I have been a nurse as you said for over 35 years now. And so I have the care giving perspective from the nurse, the bedside point of view, and I also have the caregiving perspective. I’ve done home care as a nurse, but I also did care with my father at the end of his life. And it’s much different when it’s your own relative. It’s someone that you’ve love and know in that way versus being the professional at the bedside. So I have a big heart for caregivers.

Rayna Neises: 

I love to hear you say that too, because I think oftentimes as caregivers, we feel that from people who are professional. That lack of connection to our loved one, maybe. But I like to hear it from you to say that that is true it is different. And I think it’s important that it’s different, probably because as a caregiver in a profession day in and day out, you can’t lead with your heart through the whole process, or you have nothing, but a crumbled heart left. Right?

Maureen Kures: 

I think you can lead with your heart to a certain extent, but our emotions are never the same. You know, as much as I loved my patients, I’m still 35 years later in touch with families of people that I took care of. And it’s not the same as my father lying there in that bed. It’s just that emotional connection is so different than someone that I intimately knew and loved at a different level than I could ever loved my patients that I loved. I love so many of my patients, but it’s just not the same.

Rayna Neises: 

Yeah. There’s benefits in that, that you have to make decisions as a professional that come from what needs to happen, protocols and those types of things. And as family members, that’s not where we’re making our decisions from. So it’s important to have both perspectives, but I think it’s also important to have an understanding that it is different. And if we’re expecting it to be the same, coming from same places, we’re going to be disappointed. So

Maureen Kures: 

absolutely. Absolutely.

Rayna Neises: 

So share with my audience a little bit about what motivated you to become an End of Life Coach.

Maureen Kures: 

Well, gosh, I never thought I would be doing this. I’ve been a powerful advocate for over 30 years of people getting their end of life documentation and especially Power of Attorney for Healthcare because I’ve been at that bedside when they haven’t had it done and they’d been kept alive when maybe they would not have wanted to, but also seeing the fractures of families because those candid conversations were never, never started. They had no idea what their loved one wanted. Two years ago, through a chance conversation, I’ve gone down this path, but it’s something that I just want every family to really have the transition of those conversations. The rich. Richness of this conversation so that you don’t end up at the bedside in an ICU wondering what the heck do you do? And leading from pure emotion instead of thinking what would mom have wanted?

Rayna Neises: 

That’s a difficult season, I think even when we’ve had the conversations, I know from my experience, that emotional response is just to hold on as tight as possible. And so making sure you have the conversation. So at least your instinct to hold on as tight as possible, has that other little voice in their head of hearing your loved one, say, I don’t want to live that way.

Maureen Kures: 

Right. You know, I think that by having the conversations, not a one and done conversation, either it having the conversation annually. Every few years, depending on age. At my age, I’m in my late fifties. So, every few years we’re having these conversations with our sons who are in their twenties. Now my mom who’s in her mid eighties. I’m having this conversation annually with her, I’m her healthcare agent. And I want to make sure that I can honor her wishes because you’re right. When that moment comes, it is pure emotion, but the biggest gift we can give is the gift of knowing. Yeah.

Rayna Neises: 

I completely agree that gift of knowing gives you that grounding, that you need to know that honestly, it’s not my decision because they’ve already made the decision. So it’s just about executing what they wanted. It’s not about me deciding is this the right thing or not the right thing. And I know for us as a family, when we lost my mom was our first experience with that. I was very young and really honestly, our whole family. I just don’t think we were prepared in understanding, do we want to be on a ventilator? No. Do we want to, you know, some of those things are big, but some of the smaller things that actually fall into end of life were surprising. So one of the challenges we ran into is medication limitations at that point in time, which was a long time ago. There were only certain medications that if you weren’t doing an IV or you lost the ability to swallow, we were really limited in what was available to help my mom through that end of life process. And that was one thing that was really difficult for me was. Realizing that we just saying we’re not doing some things meant we were also giving up some options.

Maureen Kures: 

Right. And you know, it is much different now. It’s much different now I’m saying you’re not doing anything. That means you’re not treating that doesn’t mean you’re not. Going for comfort. And now with comfort care, they’ve come so far with liquid morphine, with patches, pain-relieving patches, things that you can do for the people that are no longer able to swallow. That’s what happened to my dad? You know, my mom was still trying to feed him and giving him his little morphine pill when he couldn’t swallow. I live out of town, but when I, I had left on a Wednesday, came back on a Friday afternoon and I said, mom, he can’t do that anymore. So I was making up little slurries, I would’ve called hospice. My mom was really opposed to hospice. She had a really hard time even bringing them in, despite the fact that I had been a hospice nurse. So I knew what to do, but my whole family didn’t know what to do, and it was struggling. But now even 12 years later, there’s medication changes that can help with that. I really love people to realize that stopping treatment doesn’t mean stopping care. There’s comfort care is always the avenue to take, when that time comes.

Rayna Neises: 

Ideally, you’re really wanting to help. Families before they even get there.

Maureen Kures: 

Oh, I want to help them, right now. When it’s so far off in the future. I want them to start having these conversations, talking about things, talking about who wants the lamp in the corner, because that divides families too. You know, so like me, like I said, I’m in my late fifties and we started having these conversations with our kids a number of years ago, they were all adults by the time. But I just knew. I, I saw too many people that were my age or younger and up, you know, having a crisis. And then the family panics doesn’t know what to do and they become fractured. So to have it while we’re all healthy and active and to say, this is what I want now. And if I have a life-limiting illness diagnosed with something like cancer, then we’ll have another conversation, but we’re going to have these conversations every few years. So that. When that time comes like, I’ll give you an example. My uncle, I was his health care agent. He was the most active 87 year old you’ve ever seen. He had just driven up from Palm Desert to Seattle two weeks before he died. And we had another conversation because he knew his daughter would be too emotional. So he had asked me years before to be his healthcare agent, but we had had so many conversations over the years about what would be quality of life for him, what would be a good day and what would be acceptable and what would not. So when the time came, he didn’t wake up one morning, but he wasn’t dead. He had to bleed into his head. Five times I had to tell the neurosurgeon no to surgery.

Rayna Neises: 

wow.

Maureen Kures: 

me and I kept saying, will he be able to live alone and be active? Well, no, but maybe we can get him to speak again. I said, well, he’d be able to golf because my uncle had been a, the golf season kickoff luncheon the day before he ended up not waking up and he was so excited about the season. Will he be able to, well, no, but you know, we might be able to get him some movement back. And I said, that’s not good enough. And the reason I could say that, and that’s why I know you’ve already spoken to people about choosing your healthcare agent, but just to choose someone that can can honor your wishes no matter what, because it was hard to say no to that surgeon. And it was hard that my beloved uncle that we thought he had lived actively into his well into his nineties, you know, was there and it was emotional, but he had given me the gift of knowing. I could say without a doubt, no, because I knew he would not want on to live for that way. He’d made it very clear to me, time and time again.

Rayna Neises: 

So powerful, perfect example, because he gave you really specific things of what was important to him. And if we could get back there, then we’re going, and if we can’t, we’re not.

Maureen Kures: 

And he, he would not want to have lived like that. It’s always going to be emotional, we’re never not going to be emotional when someone we love is dying or needs caregiving, but it was such a gift. I could stand with confidence in those moments with the surgeon, because let’s face it doctors they’re trained to save. They’re trained to, you know, treat and to heal and to try to save. And they don’t like the situation any more than we do.

Rayna Neises: 

That’s a good point. And I think so hard to do, again, we’ve talked about other podcasts, but I love that it’s come out in this podcast. That just because you’re the daughter or son or the spouse does not mean you are the best Medical Power of Attorney and that it really needs to be somebody who can stand their ground and fulfill your wishes. And that’s the job. But it has to be someone who can really do that. And honestly, the closer to the situation probably means you’re not quite the best person to be there.

Maureen Kures: 

Right. You know I have a friend who, she’s a nurse, she’s highly emotional. She’s a friend of mine and her mom told them. Okay. This is my Healthcare Agent and my friend was like, I should be, I’m the medical person. So she was upset when we were talking, but I said, you know, your mom put you in the role that she needs you in. She knows you’re emotional. She knows you’re going to love on her. You’re going to be there for her. And she knows your sister can compartmentalize where you can’t and she needs someone that can compartmentalize in that moment. And I said, so your job is to just love on her, rubber feet, you know, be there in any way she needs. And I was just like, oh, I could see that. But you know, it was so hard for her in the moment.

Rayna Neises: 

Ummhmm definitely. And even, your medical expertise can still be a great benefit to your team, knowing what questions to ask, knowing what information, but that ultimate hard, hard decision. Isn’t going to be yours and that’s, that’s a gift too. I think so. That’s great. So tell me a little bit, you’ve mentioned more than once those conflicts that come up with families, what are some ways that people can get their wishes known and heard and have the families unite and honoring those wishes?

Maureen Kures: 

I think that the most important thing is just having the courage to start the conversations and, and there’s always going to be not always, I shouldn’t say always, but there’s going to be more often than not someone that’s resistant to these conversations because let’s face it. They’re not easy. There’s so many different ways to approach it. Either gather everyone together or go to them one-on-one and give them copies of the Health Care Directives and say, I want you to know so that you never have to guess. You never have to wonder, did you do the right thing? I want to talk to you about this. And, you know, they can talk each individually and then bring everyone together as family. I think that that for me is the most important thing is to bring everyone together. So everyone that is part of that loving unit, those that matter most to the person that they’ll all here together, they can hear separately, but together. The, the main thing I try to stress with my clients is you don’t have to get them to agree with you. The it’s just that they know your wishes so that they can honor them and it might take time. That’s why it’s so important to start these conversations well before they’re ever needed. So that over time you can build up that knowing that knowledge, that mom wanted this. You know, mom. Okay. Even though I don’t want her to go this route, I know she, this is how she wanted to go. So but it takes time.

Rayna Neises: 

That’s a good point. This is not about having a meeting to get everybody to vote on it. Right? This is about sharing your wishes and saying, this is my decision, and this is what’s important to me. And I think that’s such a good point because so many times we think of family meetings being that we’re going to bring everybody together and we’re all going to decide. We’re all going to agree. And this really isn’t about that.

Maureen Kures: 

No. And you know, to let people know why, let, let those that matter most to, you know why you want this and that it’s going to change over time. I know 10 years from now, I might have different wishes. Then I have now, or if I’m diagnosed with a life-limiting illness, such as cancer or severe heart disease, but that my wishes will change. So I want them to know as things change that just because I said, I might want CPR when I was 55 at 75, I’d really want to readdress that, so many different things to talk about.

Rayna Neises: 

That is also another thing we like to be able to make a decision, put a bow on it and stick it on a shelf. And that really is not going to serve us. We have to have, as you said, not just the ongoing conversations for the sake of an ongoing conversation, but for the sake of understanding that as we age, as our medical conditions change, our wishes are going to change. And having that kind of built in to have that conversation is going to prompt you. I would imagine a lot of people’s conversations with COVID totally changed some of their initial desires because COVID was such a different type of disease that we hadn’t run into before.

Maureen Kures: 

You are absolutely right. You know, my mom, who I had mentioned who will not, she does not like to talk about end of life, but she was diagnosed with COVID she’s 84. She’s very active. And I’ve run into this with clients too, with their parents. In the beginning of COVID, all I heard was my parents won’t stay home. They’re seniors, they’rehigh risk so there was a lot of concern about both senior parents. So I’ll use my mother as an example. I had to call her and say, okay, mom, you were diagnosed last night. You’re you have a mild cough and cold symptoms now. And that could change, five hours from now you could be gasping for breath. We just don’t know. And so I’m going to give you three different scenarios. And I said, I don’t want you to make this decision right here on the spot. I’m going to call you back in one hour and then we’re going to discuss each scenario. Like if you were given a 50% chance of coming off the ventilator and living, would you want to go on a ventilator? Would that be good enough for you? Would it have to be 75%? Do you not want it at all? There were different scenarios. And at the end she said she would not want to be on a ventilator, but I faced that with many of my clients that have had that scenario with their parents and it’s tricky. One client, her mom didn’t survive COVID and at the end she said, because she was able to step in and have those difficult conversations, even though it was after the diagnosis of COVID. She was so grateful because instead of the emotional part of her and her family rushing her mom to the hospital, they brought in hospice. And they were all able to be with her, where if they had taken her to the hospital, they would not have been there. They wouldn’t have been able to love on her and, and share memories and what was important to them about their relationship with her. So, yeah, COVID brought a lot of stuff to the forefront.

Rayna Neises: 

So important to have those conversations and at the same time, I think we more, we talk about it, the more comfortable we get. So the less likely we are to avoid them. But I love your examples and that you’re giving very specific options and I know, even for myself, as I’ve talked to multiple guests about this topic, one of the things that I often think to myself, I don’t know that I say it out loud is like, gosh, I don’t know that I’m ready to say don’t ever do CPR but yet, oh, well, I don’t know that I’m ready to say I want you to break all my ribs and that’s some tough stuff to really.

Maureen Kures: 

Yeah, it’s tough stuff. And that’s why I tell my clients, it’s your birthday gift to yourself to review that every year. Do it sometime in your birthday month. Take a couple hours and say, okay, where am I at health wise? You know, at I’m 59, now I keep saying this, but 59 heck yeah try because I have no health issues that would prevent me from recovering. If I was 59 with stage four breast cancer. I might say no, you know, I want to live with quality as long as I can. So there’s all different scenarios. One of the things that I would like to bring up with these end of life conversations is that so many of us don’t realize we’re going to be caregivers to our family members. And that’s an important part of these conversations, especially when you bring the family together. I think that people don’t think of that, so they don’t talk about it, but that’s what we explore. What if, what if we need to be a caregiver for mom or for dad, or, gosh, what if something happened to me and how would I want you guys to take care of me if I’m either just sick where I can recover or if I’m sick and going down the last phase of my journey of life and how, how to support each other in the caregiving process, that’s a vital part of our conversations.

Rayna Neises: 

And I love that you keeping emphasizing it’s everyone having the conversation at the same time. I mean, we have to have individuals, like you said, but really coming together and getting to hear it together so that we can keep that family unit. They’re all in a caregiving role, even if they’re not the primary person, they’re all a part of it. And hearing that from mom’s voice or dad’s voice is going to be so important in that journey together. So that you’re all on the same page. I felt like we had marching orders. We knew what dad wanted, and we were able to do it long after he was able to communicate it. And that was such a blessing, like you said,

Maureen Kures: 

it’s such a gift. Isn’t such a gift?

Rayna Neises: 

It does. So the one thing that I also, you had said something about just having conversations with a healthcare provider and that’s really something I hadn’t thought a lot about. It just that healthcare providers. Why is that so important?

Maureen Kures: 

I think it’s so important like I said, with the surgeon, with my uncle doctors have as hard a time watching one of their patients die or stopping treatment as we as loved ones do. They, first of all, can form emotional attachments or they are there, like I said, to treat and to heal. So stop treatment is difficult for them. It’s emotional. And the more conversation we can have with our doctor, we give them the roadmap and permission to say, okay, I know Sally said, absolutely no CPR. So if this happens, I know we’re going to honor that. And that really can only be honored with it spelled out completely in Advanced Directives, because you never know if you’re going to have your doctor be the one there at your bedside making that decision, or if it’s going to be some doctor in the emergency room. But the more that we can really explicitly tell them what we would want and have the conversation. Doc, from your point of view, with where I am now, what would you recommend I do? If I have. If my cancer metastasizes, or if this treatment doesn’t work, what do you recommend? And then, listen to them so many times the doctors want to try another treatment, another treatment. Because we know our bodies, the best we know ourselves the best to know when to say enough is enough. I’d rather have quality over quantity. But I don’t know if people know that if you are 65 and over a on Medicare. Medicare, since 2016 has allowed you, might’ve learned this from other guests Advanced Care Planning Appointments that are covered under Medicare. When you have a 15, 20 minute appointment with your doctor, you barely get in time to talk about your health issue, and then to have, try to have this serious conversation about end of life. That is so far down in the future. I encourage everyone to have it, but if you’re 65 and over make that appointment, take advantage of that Medicare allowance and go and talk to your doctor about end of life, your end of life wishes. So that you can give them permission to follow them.

Rayna Neises: 

Caregivers really take note of that because of the person you’re caring for is over 65. It might not be a conversation you’d have to bring up if you can make that appointment and go with them to that doctor’s appointment. They can hear the doctor and he, you know, ask those questions that they have, that they don’t understand and really get a better understanding of what they want for their own end of life plan. It’ll be great to have someone besides you, probably facilitating that conversation. So caregivers, I think that’s amazing option that’s out there. Also resources like Maureen, being able to bring someone in who knows things you don’t know, not only about end of life, but about the medical side of maybe your family members medical issues of some things they might need to consider. Like we said, with COVID, the ventilator became a big issue, but with other diagnosises, there are definitely things to consider as well. So bringing his expertise can definitely be helpful to families and that now I know you have some free resources available. Tell us a little bit about your free resource for conversation starter.

Maureen Kures: 

Oh, it’s called to Speaking of Dying, Scare Ya to Death, Seven Prompts to Get the Conversation Started and we go over a conversation with your spouse, with your parents, with your siblings, with your children, with your doctor, there’s all different scenarios, with blended families. And so that’s something that I just love to, to support people in is having the voice to start the conversation. So that’s one of the things that I’ve made up to give people.

Rayna Neises: 

Where can we locate that Maureen?

Maureen Kures: 

I have a page called www.startthetalknow.com. And you could go on, sign up for my newsletter and get that free resource.

Rayna Neises: 

That is great. Thank you so much for joining us today and just sharing some of the things that we maybe haven’t thought about before, or maybe we thought about the last time we heard something on this podcast about end of life, but haven’t taken that step. So listeners today, I would like you to really mentally think of what is the next step you need to take on this subject. And it might just be hop on the website www.Startthetalknow.com and download those seven questions. It might be finding out if you’d like to work with maureen@radiantmorning.com or it might just be, actually getting your own affairs of orders. So I want you to stop and think about what your next step is and be proactive about this. The more we talk about it, I think the more comfortable we get so Maureen, thanks so much for joining us today.

Maureen Kures: 

Thank you Rayna, for having me.

Rayna Neises: 

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

*Transcript is an actual recount of the live conversation

Maureen Kures

Maureen Kures

End-of-Life Coach & RN

After 35 years as a registered nurse, Maureen Kures is no stranger to end-of-life issues. She has seen first-hand the devastation that can occur when families don’t have potentially difficult discussions with family members.

Today, families hire Maureen to protect and empower them through facilitated decision-making, documentation, and discussion for end-of-life transitions. Maureen’s uncommon advocacy provides safety, clarity, hope,
and guidance to her clients.

www.RadiantMourning.com

Resources

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Meet Your Host

Rayna Neises, ACC

Your Host

Author of No Regrets: Hope for Your Caregiving Season, ICF Certified Coach, Podcast Host & Speaker, offering encouragement, support, and resources to those who are in a Season of Caring for Aging Parents.

Her passion is for those caring and their parents, that they might be seen, not forgotten & cared for, not neglected

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4 Things you need to know as you begin your season of caring

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