Hospice Realities and End of Life Reflections with Patricia Ayers

Patricia Ayers is the Director of Clinical Services at Coras Wellness & Behavioral Health and she spent several years working for hospice and home care agencies. Eventually, she found herself teaching hospice at Stockton University for nine years, a role that she thoroughly enjoyed.

In this episode we talk about how people misunderstand hospice, thinking it's a place to go rather than a program that comes to you wherever you are. Learning about hospice sparked her interest because it seemed like a program everyone should know about. She taught it as a general studies course, attracting students from nursing, physical therapy, mental health, psychology, and social work backgrounds. Over the years, the class gained popularity, and many students found it beneficial, particularly nursing students who faced a significant hospice component in their certifications.

A recurring frustration in her work was witnessing clients sent home on hospice without a clear understanding of what they were signing up for. This lack of communication often led to tense situations when the hospice team explained the program, and families were caught off guard. Sometimes, clients were discharged too late, almost actively dying, causing confusion and distress for families.

One crucial point often overlooked is the relationship between pain and survival. Pain can keep individuals alive due to anxiety, and providing pain control allows them to relax, offering a chance for a peaceful passing. Unfortunately, families often misunderstood this, thinking the team had hastened the process.

The lack of clear communication about hospice and the reluctance to address death in our society bothered her. Patients and families were denied the opportunity to have important conversations and prepare for the inevitable. She designed an exercise for her students to simulate doctor-patient conversations about terminal diagnoses, highlighting the difficulty on both sides.

Patients often had questions about their treatment, side effects, and how it would affect their quality of life. However, discussions about timeframes and how to talk to their families remained challenging for both doctors and patients. Our society tends to avoid discussions about death, preferring to place individuals in nursing homes or hospitals rather than allowing the natural process to unfold at home.


This episode emphasizes the importance of acknowledging and accepting the natural progression of life.

https://coraswellness.org/

Transcript

[00:00:00] Patricia: People who are being robbed of the opportunity to have such needed conversations with their family, to address the elephant in the room, to be able to look death in the face and say, okay, you're here. I don't know how you got here, but you're here now. 

[00:00:16] Jill: Welcome back to Seeing Death Clearly. I'm your host, Jill McClennen, a death doula and end of life coach.

[00:00:22] Here on my show, I have conversations with guests that explore the topics of death, dying, grief, and life itself. My goal is to create a space where you can challenge the ideas you might already have about these subjects. I want to encourage you to open your mind and consider perspectives beyond what you may currently believe to be true.

[00:00:41] In this episode, my guest is Patricia Ayers. For nearly a decade, Patricia taught hospice at Stockton University in New Jersey, opening the eyes of students to the misconceptions surrounding this important program. She would even do exercises with her students to simulate tough conversations about terminal diagnoses.

[00:01:01] Exposing the challenges both doctors and patients face when talking about these topics. In this episode, we talk about the frustration of witnessing families sent home on hospice without understanding the program's nature. The lack of communication often led to tense situations and misunderstandings about pain management and the natural progression of life.

[00:01:22] Thank you for joining us for this conversation. Welcome Patricia. Thank you so much for being on the podcast today. I'm excited to have this conversation. 

[00:01:31] Patricia: Me too and thank you so much for having me. 

[00:01:33] Jill: Oh, you're welcome. It is honestly my pleasure. I love doing this. I love talking to people. So this is allowing me to talk about like one of my favorite things to talk about with all kinds of people.

[00:01:44] Patricia: So most people  don't want to talk about it.

[00:01:44] Jill: No, they really don't. They really don't. And that's partially why I do this. So that I can encourage people to have these conversations. Tell me a little bit about yourself. Maybe where you're from originally, what you do now, what maybe kind of led you to the work you do.

[00:02:01] Whatever you want to talk about. Okay. 

[00:02:03] Patricia: Well, I am originally from, uh, Wilmington, Delaware, and I moved away to South Jersey for 35 years and then recently moved back. And interestingly enough, I moved back. Because my mother was ill and I was going to help my family take care of her, but within four months of me moving back, my mother passed away.

[00:02:25] Oh, I'm sorry. Yeah. Yeah. And so that was difficult. That was really one of the big experiences with death that hit me personally. I've had other experiences and I'll get into that, but yeah, I lived in New Jersey. I work for a hospice agency. And eventually that led me to teaching hospice for Stockton University for nine years, which I really loved.

[00:02:54] Jill: That's amazing. That's such important work. It's, you know, similar to the work I do, but not the same hospice and death doulas are not the same, but really I got into this work because of hospice for my grandmother also in South Jersey, but maybe with some of your students. that came to help my grandmother, but it's the type of work that people don't understand the value in it until they need it.

[00:03:18] And then it's like I couldn't pay enough to have the help that hospice gave us. Right. 

[00:03:25] Patricia: I didn't know what hospice was. Unfortunately, a lot of people think that hospice is a place you go. They don't realize that hospice goes to wherever you are, then it's a program. So, that was interesting.

[00:03:39] Then learning about that, I knew nothing about it. So, when I learned everything I could about it, I really got interested in it because I thought, wow, this is a program that everyone should be on. 

[00:03:52] Jill:. Everybody should understand the realities of hospice and there's so much misinformation and so much fear about hospice.

[00:04:03] That unfortunately people don't utilize hospice early like they should to its full benefit. There's a lot of different things that hospice helps with. It's not just a nurse that comes out. There were so many things that they really can help with that people just don't understand. So glad you're here to talk about it with me.

[00:04:21] Awesome. Awesome. Yeah, so tell me a little bit, because this is actually something that I don't know. Like what type of things are taught, was it nurses that you were teaching? 

[00:04:31] Patricia: Actually, it was offered as a general studies course. And the types of students that I had were nursing students. Physical therapy students, people in mental health, psychology, social workers, and eventually it got to be a popular class or got around.

[00:04:50] And I don't know if it's because they thought it was an easy way, but where it got around and I had all kinds of students in the class. And mostly nursing students. They were the ones who I feel benefited the most from it because when they take their nursing certification, there's a huge portion of it on hospice.

[00:05:10] Jill: Was it a mandatory class for nurses? 

[00:05:13] Patricia: No, but they chose to, and I think we're got around over the years that it'll help you on that portion of the text. Because I had students come back to me, they would see me in the college and be like, I am so glad I took your reports because I knew everything there was to know about hospice.

[00:05:28] Jill: And I found that some of the nurses that I've come in contact with as a death doula, they don't always have a great understanding of what the end of life is going to be like. And unfortunately, that leads to stress and anxiety. On them when they feel like their job is to save somebody and then when the person can't be saved, they feel like it's a failure and they're overwhelmed.

[00:05:55] It's really unfortunate. 

[00:05:58] Patricia: I'm really glad you brought that up because that was the thing I struggled with the most in working as a hospice social worker and even working in the hospital on the palliative care floor. I guess what frustrated me the most was clients were sent home on hospice. But didn't actually understand exactly what they were signing up for.

[00:06:19] So I don't know if you experienced that or not, but when I got home with them and I explained exactly what hospice is and that it's a program and what means that the doctors are pretty certain that within the next six months that your health is going to decline to the point where you will die. And a lot of times the whole team got thrown out.

[00:06:42] thrown out of the hands. How can you say that? You know, you're this, you know, I'm not ready. And I felt like it was mostly the onus was on that. The doctors who ordered hospice and not enough discussion with the patient or with the family, right. Or the patient doesn't realize what it is. The family knows because they explained it maybe to the family.

[00:07:07] But nobody explained it to the patient. And so that was the biggest frustration, I think, amongst the team, where they would discharge them way late, way late when they were almost actively dying. And they would be home and the family didn't understand what's going on. They were fine in the hospital. Why are, why is this happening?

[00:07:28] Jill: Yeah, that seems to be what I observe. People are being put on hospice when it's Late and then their families are kind of thinking I've had so many people say to me that hospice has killed Their family member like no, I I promise you promise you I've never met a hospice nurse or anybody related to hospice first of all, why would anybody risk their career killing somebody. I'm like, if anything, it's that everybody's waiting too long. So by the time that hospice comes in, your loved one only has a day or two left to live. When really hospice could have come in months ago, but instead we're waiting too long. So by the time hospice shows up, they help get your person comfortable and then they die.

[00:08:17] Well, that's not that hospice killed them. It's just that they were there. only at the end when really they could come in earlier. And I even had somebody once say something like almost an accusatory type of like, well, they came in and started giving them all this morphine and then they lived a really long time.

[00:08:37] Okay. Well, first of all, I don't understand why you're upset about this, but also like. . People don't understand what morphine actually does for somebody at the end of life. It's not like they're being drugged up to just like, well, let's just get this person really high. It's that the morphine actually does things to help extend their life a little bit.

[00:08:58] Right? It's like the breathing I know is one thing, right? It doesn't help breathing.

[00:09:03] Patricia:  It relaxes the smooth muscles. 

[00:09:05] Jill: And okay, so it relaxes the muscles in the chest, which allows them to breathe easier. 

[00:09:11] Patricia: Right. But the thing is, what people don't realize when it comes to pain is pain will keep you alive.

[00:09:18] If you're in that much pain, you're going to stay alive because you're just anxious because pain and anxiety are married, you know, and when you're anxious, you can't relax, right? And I think what they don't realize is when they give. Pain control, the client now has the first opportunity to relax. And when they relax, then unfortunately they're relaxed enough to be able to pass because they're just so anxious and in so much pain.

[00:09:49] And we tried to explain to a lot of the families that, no, this was a good thing. We didn't overdose them. Unfortunately, they died because they were relaxed and calm for the first time in a lot of their illness. 

[00:10:02] Jill: Yeah, and that is a interesting point too that when you're in pain and you're anxious and you're tense, you're going to be more afraid of something where probably from what I have heard that as people near the end of life and they kind of maybe go like one foot in one foot out, like as you're kind of really nearing that edge, if you can lose that pain and that fear, then I could see a lot of people being like, you know, actually I think I'm ready.

[00:10:30] Like it's. It's time for me, like I'm ready for this now that I'm not in pain and afraid anymore. So maybe on some end of conscious level, the person actually is like, Oh, I can do this. This isn't scary. I'm ready. And then they move on. They transition. Yeah. 

[00:10:48] Patricia: And you know what? Honestly, no one can think clearly.

[00:10:52] When the pain is always in their mind, when they're constantly at a point where they're over a 10, how can they actually think clearly enough to be able to relax? Think about, like you said, maybe this isn't so bad. Maybe they'll be okay. Or they can actually work through things in their head, which brings up another point.

[00:11:12] It's why I would get so upset. The whole hospice team, really, that these people are  people who are being robbed of the opportunity to have such needed conversations with their family, to address the elephant in the room, to be able to look death in the face and say, okay, you're here. I don't know how you got here, but you're here now.

[00:11:34] That's one of the things that bothered me the most. That the family was caught off guard, the patient was caught off guard

[00:11:38] Jill:. That's a really good way of describing that, of robbing somebody of an opportunity. And you will see it even in the medical field of, the doctors know in some cases that these things that they're, Recommending somebody go through is not really going to extend their life.

[00:11:59] It's just this treatment that may help. It may not, but most likely it's just going to make them really sick. It's not going to extend their life. People don't understand that they think, okay, I'm going to go through this treatment and things are going to be better. I'm going to get better. I'm going to heal when really it's just meaning that, yeah, maybe you get an extra six months or a year.

[00:12:21] But that six months to a year is going to be hell. You're going to be sick. You're going to be in pain. You're going to be afraid. You're not going to be having the experiences and the conversations with your family because you're going to be exhausted. Like it's not a quality of life. And if we could just have these conversations, and maybe there'll be some people that'll say, you know what, but it's still worth the risk.

[00:12:42] Again, I'm 44. Maybe it would be worth the risk to have an extra six months with my kids. Of course, I would totally consider it. I'm not saying people shouldn't, but when you start talking about somebody that's 89 and you're saying, do these treatments and we're going to try this, we're going to try that.

[00:13:00] Is that really how somebody wants to live the last year or two of their life? When we can just manage the pain, keep them comfortable, but they can still have conversations with their loved ones. They can talk about the memories. They can get closure if they want to. There are so many things they could do, but we're just not good at having that.

[00:13:18] We haven't had an honest conversation yet. The doctors aren't, the families aren't, they're afraid. I could see why doctors also don't want to bring up the conversation because again, you get a lot of this like, no, that's not me. It's not time. I'm not having this conversation. So the doctors are like, well, I'll just tell you what I could do and we'll go from there.

[00:13:38] So we need to change this a little bit, the dynamics and the dialogues and the. way that we face death in our culture because it's not working the way that we're doing it. 

[00:13:49] Patricia: I agree with you 100%. I had my students do an exercise in the class in which they would take turns. One would be the doctor and one would be the patient.

[00:14:00] And I had them actually practice the doctor giving the bad news to the patient and then the patient actually hearing the bad news and asking the appropriate questions. And the thing about it was both sides had a very, very difficult time, very difficult time. Especially. The doctors, because it's hard to look somebody in the face and say you have six months or less and I'm putting you on hospice.

[00:14:29] So that was, that was difficult. 

[00:14:30] Jill: What are some of the questions that a person should maybe ask if they are diagnosed with an illness so that they can at least get an understanding, a realistic understanding maybe of what might happen. 

[00:14:44] Patricia: If they are like opting for treatment, what kind of treatment is it?

[00:14:49] What are the side effects? How will it affect my quality of life? A lot of times if they ask how much time, then it isn't always answered that question, because doctors don't want to put an actual time limit on it. Are there other treatments available? Um, trying to think off the top of my head. Yeah. Some of the other questions.

[00:15:08] Oh, how do I have these discussions with my family? I'm not so sure that the doctor would be able to answer that one either.

[00:15:14] Jill: Yeah, I mean, that's part of what death rule is here for is to help people have these conversations with their families. We're here to support people because it is something that I know hospice has chaplains and they have social workers.

[00:15:29] I'm assuming that's something that is like for me, my experience with hospice with my grandmother. She was already, like, basically non verbal. She was going in and out of consciousness. When she was verbal, it was a lot of nonsense most of the time. So, like, I wasn't talking with her and them. I was talking to them.

[00:15:48] I was like, I don't know what's happening. Really confused. I don't understand her primary care doctor. I remember calling him once he wouldn't even come to the house and see her. I was so upset. The nurse shows up and I was like, I don't understand. And she was like, she's dying. He basically was like, nope, not my problem anymore.

[00:16:07] Right. I was so mad. I was so mad. Yeah. Yeah. And so my interaction with hospice, they were amazing. Again, just any question I had, everybody was willing to help. But if I am somebody that maybe finds out that I had a diagnosis. It's probably only six months and I am working with hospice. Is that something where a social worker or one of the chaplains can help me have conversations or would they just only help me have my own internal conversation?

[00:16:40] Like, how does that work? 

[00:16:41] Patricia: The chaplain really wouldn't deal with the spiritual part of it. Or any other kind of, you know, spiritual aspects of dying, the social worker would sit down, have the conversation with the patient or family patient for sure about what to expect physically, psychologically, emotionally, answer any questions they have about pretty much what you do as a doula, but what the physical part of it.

[00:17:08] We'll feel like we don't really help them have the conversation with the doctor, because at this point, once the doctors, you know, sent them home on hospice, the medical director takes over of the hospice. So, there are primaries out  of it

[00:17:21] Jill:. That makes sense. It's a really hard time in life. As comfortable as I am talking about it and working with people in this kind of space, it is a hard time in life, right?

[00:17:34] It's, we're all going to go through it. But it's still not something that is easy because it is emotional and no matter how much you think we're prepared for it, it's still us or our loved ones are not going to be with us anymore, right? It's a big change. And that's why there is hospice and doulas and teams of people to really kind of help just make it a little bit easier.

[00:17:57] Having these conversations earlier really would make a big difference. It would help us all. Feel more comfortable having the conversations with our family and when it is our time to have conversations with our doctors, feeling more comfortable again. I don't know. I like to think that I would be better prepared to have that conversation.

[00:18:22] But again, it's going to depend on my age, but 44, am I ever going to be okay at this age saying, yeah, you know what? I'm all right. I'm ready to die. Like, no, no, I'm not not ready to die. Right. But we also don't have a choice when we die. And so it could be sooner than later for me. I don't know. Well, 

[00:18:40] Patricia: I think the illness pretty much dictates that for you.

[00:18:44] If you've been living with the illness for a couple of years. I think it tires you out when you're ready, when you're at that point. Um, but then again, if you just get diagnosed, right, then you haven't had time to really process it. We'll talk to your family. I think that makes a big difference. And you're 44, you're not ready to go anywhere.

[00:19:06] Right. And the interesting thing too is, and I would have this discussion with my students a lot of times, a lot of the patient isn't always. On board with it, you know, as far as like accepting that they even have a terminal illness, right? Or they don't want to know things. They don't want to know, be updated on what the physical looks like.

[00:19:30] They don't want to talk to anyone at all. They just want to, okay. Just let me be. I'm sure you've run into those kinds of patients too, I'm not sure, but maybe it's denial. We would have a lot of patients who were really in denial that it would happen, or they put a lot of, a lot of faith in their religion thinking there's going to be a miracle. So if that's where they are, then I don't think we're going to make any headway with them. We just have to be where they are. And a lot of times that's frustrating when you go in there and you have your agenda, go in there and talk to them and make them understand that you don't have much time, but a lot of people, believe it or not, don't want to know how much time.

[00:20:12] Jill: Yeah, and that is it. We have to just meet them where they're at and allow them to go through their process, but supporting them along the way, which can be hard as a human. We sometimes, not that I, I think sometimes it is that we think we know better. I think sometimes we just know that if they could kind of.

[00:20:33] Come around a little bit and relax and understand it would actually help ease the suffering a little yeah We can't make people do anything. They're not ready to do. 

[00:20:45] Patricia: Yeah, that's frustrating That's our job. 

[00:20:47] Jill: It is frustrating really. I mean dealing with humans being a human is really frustrating.

[00:20:54] Sometimes there's no way of getting around that Yeah, especially on the topic that we don't want to face. It's really frustrating. Well, 

[00:21:02] Patricia: I mean, we're a death denying society. We don't wanna talk about death. We wanna put people in nursing homes and in hospitals and have them pass there. We don't want to bring people in our homes and watch it happen.

[00:21:15] Although it's the most, I mean, history dictates it's the most natural thing that's been done, a consistent thing that's been done in many different cultures. Throughout the world, way back, way back when, when a person knew they were dying, it was centuries and centuries ago. People would leave, they would leave their home because they knew they were dying.

[00:21:34] They would say goodbye to their families. In some cultures, I think this was the, I wouldn't say it's like a, um, Alaskan culture and they would just. Go leave, say goodbye, and the family never saw them again. And I thought that was pretty interesting as far as they knew within themselves, that it was their time.

[00:21:53] Jill: That is interesting. Yeah, because I don't know if I would be able to do that, go off and face it. Alone, but I also don't know if I would, if I had a choice to really kind of be able to do that, like just kind of pick up and go and save my family from potentially having to experience something. Yeah. Maybe I would do it.

[00:22:15] I don't know. I'd never really thought about that. And I'd never really heard about it, but it's also not that surprising either. Right. 

[00:22:22] Patricia: Right. Well, that wasn't always feared. It wasn't always feared. State government got into, and religion got into death. It was a natural thing. Everybody just understood it would happen.

[00:22:36] Then unfortunately people heard of an afterlife. Yeah. Yeah. And they started to fear the devil and religion came on board and people got afraid and they started worrying about, did I live a good life? Did I sin? And am I going to heaven? So that became a big deal as far as. when people died. So, yeah, and here we are now. Still worrying. 

[00:22:59] Jill: Yes, and we're getting a little better. It is getting better, but we're not quite there yet. Right. Did you actually teach any, like, spirituality or anything in your hospice classes? Or was it more like just the medical side of things? 

[00:23:15] Patricia: I actually did teach a few courses on the spiritual side of it.

[00:23:20] Uh, I mean, a few, um, classes. During the course, we would talk about what everyone's beliefs were, and it was interesting. A lot of the students, you know, a lot younger, they identified as atheists or agnostics, which I thought was pretty interesting. And they didn't really believe in an afterlife, that our life on earth, when we, when we're here, we have to be good while we're here on earth to others.

[00:23:46] And I found that really interesting. You know, 

[00:23:49] Jill: I guess there are more people that are identifying as not religious, but So I actually just did a little educational piece on honoring alternative spiritual beliefs at the end of life, because it can be very hard if you're somebody that maybe does identify as atheist.

[00:24:12] And then you're trying to support people at the end of life that are very religious and religion plays a big role in their life, or you are very religious. And somebody has a very different religious belief than you have, or they have none at all, and you're thinking, well, they're going to go to hell because they don't believe in, you know, Jesus.

[00:24:35] And we need to not push our beliefs and our agenda onto other people, especially at the end of life when it can be such a vulnerable time for people. And so it's an interesting space to kind of check our own beliefs and support other people in their beliefs, whatever they are. 

[00:24:55] Patricia: Oh, I agree. I agree. They used to tell a few stories when I was out in the field, um, about supporting people spiritually.

[00:25:02] I mean, we did have the hospice chaplain and he and I used to work close together and go out there. But a lot of the discussions that I had, it led me to believe that clients who really Spiritually, we're still suffering, had a more difficult end of life experience. I think given the opportunity to be able to talk about it to someone, maybe they're deep, dark secrets, or maybe things that they were struggling with, with somebody unbiased and supportive and listening, I think it made all the difference in the world to them because.

[00:25:39] I think, like I said, it, their death was more difficult when they were holding on to something than were struggling with even spiritual beliefs in, you know, is there a God? Is there an afterlife? If they could somehow, if they had a spiritual belief, I think they'd found it a lot easier to be able to have discussions with me or the chaplain and to be able to.

[00:26:03] come up with something in their mind, something that they could hold on to. I think it just made the dying process so much easier.

[00:26:10] Jill: Did you ever see anybody that maybe changed their religious beliefs at the end of life? Or I don't know. I had heard a story once. It was actually in Yoga Journal. I was reading Yoga Journal many years ago and it was a story that somebody was saying they were in an airplane and the plane almost crashed.

[00:26:31] Like it wasn't just turbulence, like it, it was a serious situation and they were very surprised that they started saying Hail Marys because they hadn't been Catholic. Since they were a child, they, you know, were very into the yoga community. They identified with a lot of other religious beliefs, but when it came to the moment when they actually thought they were going to die, they turned back to their Christian roots.

[00:26:58] And so I, that always stuck with me because I was Catholic growing up. And I wonder about that. Like, I wonder if at the end of life, if I'm going to want to go back to my old Catholic childhood religious roots. And I don't know, like, I don't know if I will, but I did interview somebody else on the podcast that a friend of theirs found Jesus at the end of his life.

[00:27:24] So Jesus actually came and talked to him. So I don't know, I find that really fascinating. And what is that? Like, is that because we genuinely turn back to those religious beliefs? Or is it almost like grasping because we're so scared? 

[00:27:39] Patricia: I think it's more the latter. That they need something to grab on to, okay?

[00:27:44] Because the fear is just so great. I've tried many times to put myself in their shoes. Then to actually sit there and think, what if I was given that six months or less? And the time was ticking away. And as it got closer, I'm sure I would be more anxious. And as my disease progressed, I would know that I don't have a lot of time.

[00:28:06] I would struggle with where, I mean, I want more, I want more out of this life. So if I can believe in an afterlife now, that's a little bit, that's more. Right? Because it's so unknown. It's just so unknown. And we would go into the different religions in the course. If you believed in reincarnation, well, okay.

[00:28:27] Then you believe that you're going to come back in another life. Maybe not exactly the same person, but I think that they would grasp for sure into something. Now, do I know of anyone's ever did a whole 180 on their, on their beliefs? Perhaps, perhaps, because the chaplain did some amazing work, and so I don't think he pushed his agenda, but I think he also helped them reconcile some doubts that they may have had or misconceptions about religion or having further education discussion about it, maybe helped.

[00:29:01] Jill: I like that idea of reconciliation, because When I think of why I left my religion of my childhood, it's because of the pain and the suffering that I actually found in religion. I didn't find the hope and the joy and the love. I found the shame and the guilt and the hypocrites and the people that would say one thing and then be the nastiest people I'd ever met.

[00:29:32] behind closed doors. It just all of that was what made me be like, Nope, I don't think I want to participate in this anymore. And so I wonder if at the end of life, if it would be not so much that I ever really lost the parts of my faith. That I did like, or if I just was so in my human form right now. So just note that I can't, I can't put myself through those experiences anymore.

[00:30:04] Just being hurt over and over and over again. Right. At the end of life. If I had somebody that comes in, like a chaplain or anybody that comes in and talks to me and helps me kind of reconcile the negative parts of my childhood faith, if then the parts of it, because I do remember when I was really little, I loved going to church.

[00:30:25] I mean, we sang and I was with my grandma and like, we just, it was a beautiful experience. But as I got older, I was like, no, nothing of this feels good anymore. It just doesn't. And so, yeah, I, I, that's interesting. The reconciling maybe of some of the human parts of church and religion. 

[00:30:46] Patricia: I had a very similar experience as you and I turned, I turned away from religion.

[00:30:51] I'm like, this is, this can't be it, especially the hypocrisy. I just said, no, this isn't for me, but it's interesting doing the work. And I tell a story all the time. And if we have time, I'll tell my story about, okay, about my decision to believe that there is a higher power. I don't think that the higher power is what I saw growing up in our experience.

[00:31:16] Because humans are humans, but I got a call from the hospice nurse and I get chills every time I tell this story. 

[00:31:23] Jill: Ooh, I'm excited.

[00:31:23] Patricia: And so we had a mutual client. It was around the corner from where I lived and she said, okay, he passed. And so our job was to go out and help prepare the body, talk to the family, call them to the funeral room.

[00:31:36] And at this time we were using big devices like this to do our recording. And I had forgotten my charger. It was in the car. So, but let me digress. I walked in to the house and sitting at the kitchen table was a 13, 14 year old. She might've been a little older, but she was all goth, you know, black nails and just sitting there and she was angry.

[00:32:02] She had a scowl on her face and I said, hi, and she didn't acknowledge. I walked in, her mom was standing at the sink doing the dishes. And her grandmother was with our patient who had died. It was the grandfather. And so I went in there and I helped the nurse with everything. And I realized that my phone was getting ready to die.

[00:32:22] So I had to go back out to the car. So I walked out to the car and I got the charger. And on my way in, out of the cement was a four leaf clover. All by itself, just sticking right out of the ground. And I was like, wow. I mean, I'm good at finding four leaf clovers. I'm not going to say I'm not, but this one was glaring.

[00:32:39] And I was like, all right, well, let me just grab it. I don't know what told me just to grab it. So I picked it and I walked in and I handed it right to this young lady. And her whole face changed. She, she looked at me like, what? And mom says, is that a four leaf clover? And I'm like, yeah. She said, well, you don't understand.

[00:32:59] She says that the was the one thing that my grandfather and I used to enjoy doing all of the time was to find four leaf clippers. We had a contest and I just thought, wow, I didn't even think I was on autopilot. Yeah. But I did that. And after that, she opened up to me, she actually was able to breathe. I said, cause she was so upset.

[00:33:23] They had raised, almost raised her as well. And she actually sat at the table and she wrote a poem. And before the funeral home came, we all gathered around and she recited her poem and she needed that. And it helped her to get over this little bit of a home. And, you know, I'm thinking, well. What else could it have been?

[00:33:45] It wasn't just me being a nice person. I mean, I felt like something had to be working through me at this point. And I tell that story only because what if it was, what if it was some higher power basically saying, Hey, this is for, you know, the struggling young, young teenager. 

[00:34:03] Jill: So. I love that. That is such a great story.

[00:34:06] I have nothing quite like that, but I have had experiences where there's just like, Something that is out of the ordinary for me, where like, I'll see something and yeah, like you pick it up or like you say something to somebody, you'll be like, I don't know why I even just said that, like, and it's not thoughtless.

[00:34:26] It's not negative. It's just something that afterwards I'm like, well, that was not, it was just weird. It was just different. And I do wonder. Many times in our life, we interact with people, and it's like something is just guiding us to be that person, to say that thing, to like, do the thing. And I think sometimes positive and negative, though, because now that I really think about it, there's definitely been times when even negatively, I've reacted very, like, strange towards somebody, and I've thought, that's weird, like, why am I reacting this way?

[00:35:01] And that's where I don't know if it's almost like a karma thing in some cases where the person needs to have an experience, positive or negative. And we just are playing a part in their experience. But in this case with the four leaf clover, what a beautiful way for somebody to get the sign that they needed that grandpop was okay.

[00:35:25] And that. He was also still there and that she wasn't alone to kind of help her on her journey to just kind of process at least a little bit what had happened when you lose your grandparent or your parents or people that raised you, really were such an, you know, big part of your life. Yeah. 

[00:35:46] Patricia: Yeah.

[00:35:46] And she obviously wasn't handling it well. So yeah, I agree. And there's been other experiences too, where I've walked out of the house and I've been like, wow, how I didn't, how'd I know that? That was the right thing to say, obviously. And they felt better. You could see that they felt better, you know, trusting ourselves too.

[00:36:08] Jill: Sometimes when we have this thought in our head like, Well, that's weird. Why would I say that? Sometimes trusting that thought and being like, you know, I'm going to say it. It could be exactly the thought or the words that somebody needed to hear. 

[00:36:24] Patricia: Yeah, no, I agree. And like you said, either good or bad sometimes.

[00:36:29] It was very scary going in there and to look a 30 some year old in the eye and say to them, yeah, yeah, you are going to die. Yeah. But, and confirm that and they didn't want to hear it. And it was heartbreaking. It was just heartbreaking. 

[00:36:44] Jill: Yeah. Yeah. I mean, cause there is always that part of us that feels like.

[00:36:50] Young people are not supposed to die. They're just not supposed to. You're not supposed to die until you're really old and lived a life. But again, what's the average life expectancy now? Probably late 80s? Yeah. Yeah. Where we were at the cemetery yesterday, a cemetery up in North Jersey, and there was a lot of graves from the 1800s, early 1900s.

[00:37:13] And there was one that was like a guy and then it said, and his wives. And there was, I think like two or three underneath all, all the wives look like they died in like their twenties or thirties. Like they were not old when they died. And my daughter, we were kind of talking about it. I said, well, in the past people, if they lived to be 40, something that was doing pretty good.

[00:37:35] You know, if you were especially a woman and you were birthing children and you lived to be 44, that is doing good. Where now, for me, I'm like, 44? No way, I have another 50 years. Like, I'm dying anytime soon. Our reality of when life is supposed to end changes with time, and thankfully, or I guess in some people's cases, maybe they don't think thankfully that we live long lives.

[00:37:59] And we definitely tend to live longer now. And so yeah, so hopefully most of us will be in our 80s or 90s and not told in our 30s or 40s. But it might be one of us. We don't know. 

[00:38:13] Patricia:It'd be, you know, kids weren't named. Until they were two years old, way back when, because a lot of them didn't make it for whatever reason.

[00:38:21] So I thought that was interesting. And to go along with it, even if you're 89 and you get a terminal illness and are told that it, I think it's still a shock. It's still the, the sense of, I don't want to die. I don't want to leave the people. I love the, you know, it's still a scary thing. 

[00:38:40] Jill: So yeah, I talked to an 89 year old that, and I mean, and he was being completely honest and he said, I really just didn't believe I was going to die.

[00:38:49] Like they're telling me now that I'm dying and I just didn't believe it. And like part of you kind of says, well, that's really weird. Like, how could you not believe it? But I think there is a difference. Even for me to say it like, yes, I'm going to die one day. I know I'm going to die one day. I believe that 100 percent in my core.

[00:39:08] But do I really believe it? Like I'll believe it when I'm told I'm dying, right? That's a different thing. That's a totally different thing. So much different. 

[00:39:17] Patricia: Yeah. 

[00:39:18] Jill: Hopefully I'll be older when it happens and hopefully I'll be prepared when it happens and thankfully there'll be hospice and other death doulas that'll come after me that hopefully will take care of me and I'll have the best experience I could have.

[00:39:35] Hopefully. Or I'll die in a car accident tomorrow. And I don't know. 

[00:39:38] Patricia: We don't know. So are you familiar with Ira Byock? Yeah, he, a big proponent of the hospice and a lot of the things that I taught, you know, were just articles by Ira Byock. I'm pretty sure with this. 

[00:39:53] Jill: Yeah, actually, I think I do know, but I don't think I ever knew how to say the name because I've only just ever read it.

[00:40:00] Oh, okay. 

[00:40:00] Patricia: Probably. Yeah. He's written a lot. He's written a whole lot. Him and David Kessler. 

[00:40:04] Jill: Yes. I'm definitely a part of David Kessler. 

[00:40:07] Patricia: Yeah. But Ira Byock said one of the most important things we can do to prepare ourselves. Is to get a family if we don't, if we're alone and we don't have a family to get a family to have advanced directives.

[00:40:21] That's really very important. And just to have those conversations with our family while we can.

[00:40:28] Jill: Yes. And you're right about getting a family. A lot of times people think that our family are the people that we're born with. And that's not always going to be the case. I mean, we, and if you think about it, sometimes when you say your chosen family, people are like, well, that's weird.

[00:40:45] I mean, I chose my husband, like my husband is my chosen family, but why not have other people just surround yourself with people that are your chosen family. They don't have to be your blood family. If your blood family is not. Working for you. Maybe you have different beliefs, maybe they're abusive, whatever it is, just find the people that you love and that love you.

[00:41:08] And yes, have your advanced directives, like just get that stuff together. It's so important to have your advanced directives done. 

[00:41:15] Patricia: Yeah. You don't want to put people in the position to have to make decisions for you. That's so uncomfortable.

[00:41:20] Jill: No, it's, it's suffering that they don't need to go through. Great.

[00:41:25] Awesome. Well, are there any last things you want to leave us with? Any last thoughts, any last stories, any, anything? 

[00:41:34] Patricia: Just be kind to each other. That's the bottom line. Live the kind of life that you want to live. Make life on your own terms. But also try to be kind to one another because you don't know like we talked about earlier what you're going to need from other people when trying to love your family, try to live a good life because what matters really about life is the in between we have, they say it, but it sounds like a cliche, but it really is you have your, your date of birth and your date of death. It's that time in between. If you don't live your life while you're here, time goes by so quickly. You want to make sure that you're living life to the fullest because regrets are horrible. And that happens at the end of life. 

[00:42:21] Jill: It really does. People. all of a sudden, feels like all of a sudden, have no more time left.

[00:42:27] And then they're like, but I didn't do these things. And I didn't have these conversations. And I didn't, and I didn't, and I didn't. Well, then what the hell did you do? What'd you do all this time then? Right. But that's part of our society. We just get so caught up in things that are not important. Yes, we have to work jobs because we have to make money.

[00:42:46] But do we really have to make as much money as some of us make? By working and working and working and not spending time with our families and not spending time with our friends. Like, is the money really worth it? It's not. It's not. 

[00:42:59] Patricia: Because we're always chasing something that maybe will never happen. I mean, it's great to have dreams, but at one point you have to realize that you can't keep working.

[00:43:11] You have to enjoy that, the life, the little things in life.

[00:43:14] Jill: It's true. And that's what I'm going to do now. I'm going to teach my daughter how to cross stitch because that's what I enjoy doing. And she asked about learning it. And yes, I have work I could do after this, but you know what? She's not going to be little forever.

[00:43:29] And one day, hopefully if she picks it up and she likes it. She'll remember the day that I taught her how to cross stitch. What I won't remember are the emails that I answered and the things that I had to do that were so important. So I'm working on it. It's still a practice for me, working on just letting go of what I think I have to do and allowing myself to do the things that are important.

[00:43:54] Patricia: Yay, happy to hear it.Me too. My son called while we were talking, so I'll give him a call back.

[00:43:58] Jill: Perfect. Well, thank you so much for coming on, Patricia. I really appreciate you taking the time. I enjoyed the conversation. I always love learning more about anything that I just don't know as much as I want to know about.

[00:44:10] So I appreciate it. Thank you. 

[00:44:12] Patricia: Well,thank you for having me. It was, it was a lot of fun. 

[00:44:14] Jill: You're so welcome. Thank you for listening to this episode and for being with me for my first year of hosting Seeing Death Clearly. My guest next week is going to be my husband, Stephen Wilson. I started this podcast in January of 2023 with Steven as my first guest.

[00:44:32] Our episode next week hasn't been recorded yet, so I can't tell you what we will talk about, but I know we will reflect on the first year of my podcast and all of the amazing guests I've had. I am taking a break for the rest of the year to focus on being with my family, but we'll be back in January 2024 with new episodes.

[00:44:50] I've already recorded the interview with the one guest that I was telling myself. When I get Barbara Karnes on the podcast, then I know I'm doing it right. So I'm really excited to share that interview with you when I come back from my break. If you enjoyed this episode, please share it with a friend or family member who might find it interesting.

[00:45:06] Your support in spreading the podcast is greatly appreciated. Please consider subscribing on your favorite podcast platform and leaving a five star review. Your positive feedback helps recommend the podcast to others. The podcast also offers a paid subscription feature that allows you to financially support the show.

[00:45:23] Your contribution will help keep the podcast advertisement free. Whether your donation is large or small, every amount is valuable. I sincerely appreciate all of you for listening to the show and supporting me in any way you can. You can find a link in the show notes to subscribe to the paid monthly subscription, as well as a link to my Venmo if you prefer to make a one time contribution.

[00:45:43] Thank you and I look forward to seeing you in next week's episode of Seeing Death Clearly.