Seeing Death Clearly

Stories from End-of-Life Care with Helen Bauer Part 1

May 05, 2024 Jill McClennen Episode 63
Stories from End-of-Life Care with Helen Bauer Part 1
Seeing Death Clearly
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Seeing Death Clearly
Stories from End-of-Life Care with Helen Bauer Part 1
May 05, 2024 Episode 63
Jill McClennen

In this week's episode, I talk with Helen Bower, host of the Heart of Hospice podcast. This is part 1 of a two-part interview. The following is a link to my guest episode of The Heart of Hospice Podcast. https://www.theheartofhospice.com/podcast/episode/23f1c2af/death-doulas-are-expert-guides-at-end-of-life

As a nurse with 34 years of practice, Helen introduces her unique bond with Sonny, a 74-pound golden doodle, with whom she volunteers in hospice, offering solace to patients and families.


Helen embarked on her hospice journey unexpectedly after transitioning from being a stay-at-home mom. Her transformative experience on her first day in hospice care solidified her commitment to this field. She vividly recounts a poignant moment when she witnessed an LVN providing exceptional care and support to a dying patient and their family, challenging nursing stereotypes and emphasizing the importance of every role in hospice care.


Reflecting on her observations, Helen discusses the subtle changes she's witnessed in patients as they approach the end of life, emphasizing the shifts in communication and consciousness before the body begins its final shutdown. She shares touching anecdotes of patients experiencing visions and connecting with loved ones before passing.

In a world where death has become medicalized and distant, Helen's insights offer a refreshing perspective, encouraging a deeper understanding of the dying process.

To connect with Helen, reach out via email at helen@theheartofhospice.com or visit https://www.theheartofhospice.com/.


The Heart of Hospice Podcast


Hospice Navigation Services


The Heart of Hospice on IG


The Heart of Hospice on FaceBook


@TheHeartHospice on Twitter


The Heart of Hospice on LinkedIn



Support the Show.

Support the show financially by doing a paid monthly subscription, any amount large or small help to keep the podcast advertisement free. https://www.buzzsprout.com/2092749/support

Subscribe to Seeing Death Clearly and leave a 5-star review if you are enjoying the podcast.

I appreciate the support and it helps get the word out to more people that could benefit from hearing the podcast.

Don’t forget to check out my free workbook Living a Better Life.


You can connect with me on my website, as well as all major social media platforms.

Website www.endoflifeclarity.com
Instagram
Facebook
Facebook group End of Life Clarity Circle
LinkedIn
TikTok


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Show Notes Transcript

In this week's episode, I talk with Helen Bower, host of the Heart of Hospice podcast. This is part 1 of a two-part interview. The following is a link to my guest episode of The Heart of Hospice Podcast. https://www.theheartofhospice.com/podcast/episode/23f1c2af/death-doulas-are-expert-guides-at-end-of-life

As a nurse with 34 years of practice, Helen introduces her unique bond with Sonny, a 74-pound golden doodle, with whom she volunteers in hospice, offering solace to patients and families.


Helen embarked on her hospice journey unexpectedly after transitioning from being a stay-at-home mom. Her transformative experience on her first day in hospice care solidified her commitment to this field. She vividly recounts a poignant moment when she witnessed an LVN providing exceptional care and support to a dying patient and their family, challenging nursing stereotypes and emphasizing the importance of every role in hospice care.


Reflecting on her observations, Helen discusses the subtle changes she's witnessed in patients as they approach the end of life, emphasizing the shifts in communication and consciousness before the body begins its final shutdown. She shares touching anecdotes of patients experiencing visions and connecting with loved ones before passing.

In a world where death has become medicalized and distant, Helen's insights offer a refreshing perspective, encouraging a deeper understanding of the dying process.

To connect with Helen, reach out via email at helen@theheartofhospice.com or visit https://www.theheartofhospice.com/.


The Heart of Hospice Podcast


Hospice Navigation Services


The Heart of Hospice on IG


The Heart of Hospice on FaceBook


@TheHeartHospice on Twitter


The Heart of Hospice on LinkedIn



Support the Show.

Support the show financially by doing a paid monthly subscription, any amount large or small help to keep the podcast advertisement free. https://www.buzzsprout.com/2092749/support

Subscribe to Seeing Death Clearly and leave a 5-star review if you are enjoying the podcast.

I appreciate the support and it helps get the word out to more people that could benefit from hearing the podcast.

Don’t forget to check out my free workbook Living a Better Life.


You can connect with me on my website, as well as all major social media platforms.

Website www.endoflifeclarity.com
Instagram
Facebook
Facebook group End of Life Clarity Circle
LinkedIn
TikTok


[00:00:00] Helen: I have seen so many patients, I call it turning inward because their socialization changes. The way they communicate, the way they interact with loved ones and friends, that does change a lot, I think. And that does start way before the body actually begins to physically turn itself off, because our bodies know how to do this.

[00:00:21] It's natural processes. 

[00:00:22] Jill: Welcome back to Seeing Death Clearly. I'm your host, Jill McClennen, a death doula and end of life coach. 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.

[00:00:41] I want to encourage you to open your mind and consider perspectives beyond what you may currently believe to be true. In this week's episode, I talk with Helen Bower, host of the Heart of Hospice podcast. This episode is being split over two weeks. As I was editing the episode, I didn't want to cut out any of what we talked about and keeping it all in one would have made it over an hour long.

[00:01:04] I love talking with Helen. I was on her podcast a few months ago, and I'm going to put a link in the show notes so you can listen to our episode on her podcast. And the day that we recorded for my podcast, we ended up staying on the Zoom for almost two hours chatting. We just had so many different things that we wanted to talk about.

[00:01:21] In this episode, Helen shares her 34 year journey as a nurse, focusing on her 15 years of experience in end of life care. We talk about her therapy dog, Sunny, and their work as a hospice volunteer team. Helen tells us about her first day in hospice care and how she knew right away that it was where she was supposed to be.

[00:01:40] We also discuss the importance of honoring patients beliefs and identities without imposing personal agendas. She reflects on the profound stillness of death and rituals that she developed to ensure families felt connected and supported during the dying process. Helen's story offers insights into empathy, dignity, and the profound impact of human connection in end of life care.

[00:02:04] Thank you for joining us for this conversation and be sure to catch the next week's episode to finish it up. Welcome to the podcast, Helen. Thank you so much for coming on. I know you have your own podcast, which we'll definitely talk about, but I really actually would just love to hear a little bit more about you, where you come from originally, anything that you want to share to just kind of tell us about who you are.

[00:02:26] Well, 

[00:02:26] Helen: it's so great to talk to you. I'm from a really small town in Texas, which is sort of boring. Texas is a big place. A lot of us in Texas are from small towns in the country. Still live in Texas. I've been practicing nursing here for the last, I'm sad to say this, 34 years. 34 years, which sounds like a really long time.

[00:02:47] And I've been working in end of life care for the last almost 15 years. So quite a while there. Something special about me, I think, is I have a four year old, 74 pound golden doodle named Sunny, and he and I are a therapy animal team together. I am his handler, and he is my partner, and he is a love. Yeah, 

[00:03:09] Jill: he's wonderful.

[00:03:11] Do you do, like, nursing homes? Like, what kind of therapy dog do you do? sessions. What do you even call them? Visits, I 

[00:03:16] Helen: guess? Visits. Visits. We are actually a hospice volunteer team. We just started because when I got him, he went through a lot of obedience training. But when everything shut down for the pandemic, we couldn't take him out in public to practice.

[00:03:31] So it was a long time coming. He and I haven't been a therapy team past our evaluation for even a year yet. So we started volunteering, I don't know, about three months ago, maybe four months ago, and we volunteer for one of the local hospices. Right now we only have one friend that we go to see. This particular person lives in a memory care unit.

[00:03:53] So Sonny and I go in there every other week and we have a visit and it's interesting. We are both learning, he and I both. 

[00:04:01] Jill: Oh, I love it so much. A couple times when I worked at a non profit and we had a couple of deaths, like three in one week, our boss brought in a therapy dog because she was like, we need something positive.

[00:04:16] Yes. And this dog was amazing. It really is something that when we're near animals. It does make us feel better. This dog went all around. We have kitchens, right? This dog was all over the place. They went all through the buildings and the kitchens and everybody was loving on the dog and the dog was loving on us and it did make us all feel better.

[00:04:37] And not too long ago I was doing a grief group and they assisted living and they brought a therapy dog in and just the whole energy in the room changes. The dog came in and I think it actually was a golden retriever. And went up to me went up to all the people in the group was just like snuggling with our legs.

[00:04:56] It really changed the way that all of us felt. So that's amazing that you do that. I love it. Yeah, 

[00:05:03] Helen: he's wonderful. Wonderful. It's almost like they vibrate in a different Place vibrate on a different level the energy that he brings to connecting with somebody It's like a hug. It's warm. It's like liquid chocolates it's really hard to describe and I benefited from that for so long because During the pandemic, a lot of times it was just me and him and my husband here at home.

[00:05:29] So I benefited from this connection with him and even our training, it's interesting. So I registered he and I through an organization called Pet Partners. And they do animal assisted intervention training, which is what Sonny and I do, and they teach you that he's not my dog, it's not like an ownership, he's not my pet, he's my partner, and I am his handler, so basically what that means is when we make a visit, Sonny is making the connection and providing that intervention, right, whether it's A presence or leaning against someone or tucking his head against into someone's lap.

[00:06:11] My job is to support him the whole time he's doing that so that he never feels scared or overwhelmed. I mean, that's part of the evaluation. So he's the main show and I'm just sort of the chauffeur and the roadie, I guess. 

[00:06:25] Jill: Yeah, that makes sense, though, because I'm sure even for the dog, it probably could be very overwhelming to have people around and you need to be able to, I'm sure, observe his cues as to like, maybe this is a little much.

[00:06:39] We need to go home maybe now today. 

[00:06:41] Helen: Right, and that's exactly what we're supposed to do. The handler is in charge of Watching the dog's body language. Do the ears go up? Is he pulling back? Is he starting to pant? Or does he yawn? Because all of those behaviors can indicate sources of stress. And you really have to learn your own particular partner.

[00:07:01] You need to understand where your dog functions the best. Sonny does best one on one. Larger groups make him a little bit more nervous. All of that's part of the evaluation that you do to, to test, but is really more comfortable with just a couple of people. But my job is to watch that the whole time. And when he's tired or he's anxious, it's my job to say, you know what, Sonny needs a break.

[00:07:26] And I take him out of the situation. 

[00:07:28] Jill: And is that pretty common for. Hospices to have therapy dogs or even therapy animals. I mean I guess I've seen even like a bunny one place they have a bunny that was living there that the residents could take out and hold but I don't see it that often but it makes a lot of sense.

[00:07:46] Helen: Well, hospice agencies are required to have volunteers. So for me, it was kind of a natural fit because that kind of work is something I do all the time anyway. So it was really a natural extension of working in hospice to become a volunteer for hospice. And it's really hard for agencies to build a volunteer program.

[00:08:08] It's hard to find people, first of all, that want to be with patients in their living environment. I have to say that going into a memory care unit was a little bit of a stressor for us. Sunny really needed to adjust to the interaction with the people who live there. So when we first went into the memory care unit, I wasn't really sure what to expect from the patient, the person we were supposed to visit with.

[00:08:35] Um, Stage dementias or Alzheimer's can look a lot of different ways. I wasn't really sure how this particular person would interact with Sonny if the person would at all. So the first couple of visits Sonny was actually uncomfortable in the unit. So when I say a memory care unit, it's a secured unit.

[00:08:55] There's a passcode to get in to keep people from wandering out and getting into unsafe situations. But they also have patients that are unresponsive in social situations. So the lady that we see at first, She doesn't look at Sonny, and she wouldn't reach out for him like most people would. Which is a big part of Sonny's engagement with people.

[00:09:18] The more they engage, the more he likes it. And there was another resident that was pacing in the unit. And I think she didn't have a good view of Sunny. She doesn't want to interact with him. She frowns. I get signals from her that we don't want to approach her and Sunny doesn't try to approach her. I think it makes him uncomfortable too.

[00:09:38] So it took us probably three weeks before he would very openly go up to the patient that we're seeing and put his head in her lap. And she will now spontaneously reach out, she doesn't do it with an open hand, the way someone would pet and stroke him, but she'll put her fist and kind of scratch his head.

[00:09:57] And they seem to have found their bond. And my job is to encourage him the whole time. So I tell him, you're doing a great job, buddy. This is awesome. And then afterwards, I take him out of the unit and he gets some self care. We talked to the staff. We can barely make it out of the building because there's so many people that we stop and talk to just to say hi.

[00:10:17] And he he loves it, absolutely loves it. 

[00:10:20] Jill: I wonder how Sunny is going to react over time as her condition progresses and then when she dies. I know that I've heard that when a dog's owner dies, they can go through a grieving process because they do realize. So I'm wondering for Sunny, even though this is kind of like a job for him, just like it's a job for us.

[00:10:41] When people say like, oh, don't you get attached to the people you work with? Aren't you going to be sad when they die? I'm like, well, of course I'm going to be sad when they die. But this is my job to work with people that are dying. Like I understand that this is the reality. So yeah, I wonder if Sunny is going to go through a grieving process when she dies.

[00:10:59] Helen: That's interesting. I guess some of that will depend on how much time we actually have to be able to spend with her and how much contact we'll have towards the end of her life. That's an interesting thought. So Sonny and I have experienced a death together. He wasn't with me at the death, but my father in law died on hospice in the middle of the pandemic, and I would take Sonny over there, but my father in law had end stage Alzheimer's, and his interaction with Sonny was a little bit agitated.

[00:11:30] So Sonny really supported the family more than he supported my father in law. My father in law had always had small dogs, like chihuahuas, little bitty dogs. And I think there was something about Sonny being so big that agitated him or made him fearful. He didn't really understand this huge thing was a dog, and so he didn't really interact with him.

[00:11:54] But my mother in law loves dogs. My husband would have sunny right next to him. And we did that so that for one thing to provide some support. Because Sonny's presence is really a big comfort, but also to acclimate Sonny to what that would feel like. And I think if my father in law had been more receptive, that Sonny would have engaged more.

[00:12:17] But yeah, it'll be interesting to see. One of the, the things we want to do, I say, I asked Sonny and he told me, but one of the things I want to do with Sonny as my partner is to be what they call an 11th hour volunteer. For hospice and for your listeners that have never heard that term, that's a volunteer that will sit with somebody who is actively dying and very close to the end of life, but maybe they don't have any family to sit with them, or maybe there's one family member, but they would like to have some support and some presence.

[00:12:49] from someone else. So I would really like to be able to do that. I haven't had that opportunity yet, but I'm hoping that comes up for us. 

[00:12:55] Jill: I can see how that would be really beneficial. And like you said, if I was there supporting somebody, especially a loved one that I'm starting to grieve, having a support dog during that time could be really helpful.

[00:13:08] Having a support person is definitely helpful, but there's just something special about a dog when they want to like cuddle with you. Really? It does make you feel different. 

[00:13:17] Helen: He never says anything, so he's never going to make a mistake and say something that's not helpful or therapeutic, right? His presence is everything that he brings, and it's really very powerful.

[00:13:29] Very powerful. Sonny is naturally gifted. I mean, he was chosen for this. We had somebody who was a therapy animal trainer choose him out of a litter of 10 puppies. 

[00:13:40] Jill: Oh, wow. Interesting. So I wonder what they looked for out of the puppies. I'm sure if that's what you do for your job, I'm sure you can see even from the beginning.

[00:13:50] Which dogs would be good and which wouldn't, but 

[00:13:53] Helen: she said they start testing them and evaluating their behaviors and their mentality when they're about six weeks old. One of the tests that they did was they will hold a puppy and turn it over on its back the way you would a baby and hold a baby. And if the dog struggles to get away.

[00:14:10] And to turn over and to jump down, that's a dog that maybe is not going to connect quite as well. So they want a dog that wants to be cradled and cuddled that way. And Sunny was one of those puppies that did that. When we went, my husband and I went, we had to travel several hours to look at this litter of puppies.

[00:14:28] And it was puppy heaven. All these puppies, golden retrievers, golden doodles, everywhere. And all of them destined, hopefully, to be support animals, therapy animals, some of them medical assistant animals, all these therapeutic, wonderful, just this incredible energy that comes off these dogs. And they do have some that, I see the postings where this particular dog isn't going to be suited.

[00:14:55] He doesn't like it, it makes him anxious. He's going to be a great pet for someone, but not a therapy animal. Sonny's just, Sonny's just gifted, I think. We were very lucky. Yeah. 

[00:15:05] Jill: Well, the people that you are going to work with are also very lucky. I'm glad that you took that on, and it makes sense if you come from the world of hospice to have that be where you focus your attentions together.

[00:15:18] Yeah. It seemed very natural. How did you get into hospice? Because it sounds like you were a nurse first for a while before you transitioned into hospice work. 

[00:15:27] Helen: Yes, for about 15 years, a little over 15 years. And it was weird for me. I am a spiritual person, but I'm not Florence Nightingale. I never considered it my calling to work with people who were dying.

[00:15:40] I had been a stay at home mom, just working part time, and my kids had outgrown that need, and I was ready to go back to work full time, and I had a friend that said, Hey, I work with this fantastic team and there's an opening if you're interested. And I really had just this intense, incredible experience on my first day in the field at this hospice job.

[00:16:02] And I realized I wanted to do this for the rest of my career. It was really a strange experience and I talk about it a lot because it was a defining moment for me in my career. I went on my first ride along visit. I had done the books and the films and stuff that they make you do when you hire on brand new.

[00:16:21] But I rode out with another nurse to see a patient. And it was an LVN. She was going to see a patient that had been on the service for a while. And the family had called and said the patient was having a bad day. Well, when we got there, it turned out the patient was actively dying. And I watched this LVN, incredibly gifted.

[00:16:39] So skilled, support this family member that was there, a woman, probably in her mid fifties, and guide her through what was happening and explain everything, support her, grief support, and assessing anything that the patient might need to be comfortable. It was actually a very peaceful death. The woman had end stage Alzheimer's and she was dying from complications related to that.

[00:17:04] And the family member got into the bed with the patient. And for people that, if you've ever seen somebody in a hospital bed, they're not cushy beds. They're crackly. And anybody who's been significantly ill, they usually have catheters and tubes and oxygen and maybe they don't smell that great. And they may have plastic, chucks, those waterproof pads underneath them that are also crackly and plastic.

[00:17:31] And so I watched this family member climb into bed with this woman and wrap herself around the patient and whisper in her ear. And what she told us was that when the patient was aware enough to talk about her end of life, she had told her family the only thing she was scared of was dying alone. So this family member is, you know, Cradling her, whispering in her ear the whole time.

[00:17:55] I'm here with you. You don't have to be scared. We love you. We're gonna be great. You've given us everything you needed to. We have everything we need. And the patient took her last breath like this. It was on your first day in the field. It was like my third day at my new job. And I'm like, I don't know what the hell you guys do every day.

[00:18:16] This is insane. Insane. And there's a great deal of professional arrogance in nursing. There's a pecking order. And RNs have a tendency to think that LVNs don't have the same skills, right? That they're not as valuable. And I'm here to tell you that I watched this LVN take this family from an actively dying stage of this patient.

[00:18:39] All the way through the funeral home, removing her body from the home and just incredible gifts, incredible gifts. And I had another lesson that day because my boss came to train me on what an RN's role is in the state of Texas when there's a death in the home because the LVN, she wasn't qualified because of her credentialing to train me in that.

[00:18:59] So my boss and sports family teaches everything that I needed to know. And then when we were leaving, she told me to go home for the rest of the day. Which is very unusual, and what she was telling me was we take care of the patients, and then we take care of ourselves. You go home, you decompress, you reflect on this, and you take care of yourself.

[00:19:18] It was my very first lesson in self care. I, I don't know what other business could I work in that would actually give me that. It was, it was simply amazing. 

[00:19:26] Jill: That sounds amazing. And for it to be your first real experience out there, I'm wondering, because I don't work hospice, I never have, I assume you get your schedule for the day, right?

[00:19:38] And at like 11 o'clock you go to visit. person A and at 12 o'clock you visit person A. So what happens if you get there and person A is in this type of situation where they're dying? You're not going to say to the family member, I'm sorry, I need to go to my next appointment. Yeah, right, 

[00:19:54] Helen: right. 

[00:19:54] Jill: How do you handle 

[00:19:56] Helen: that?

[00:19:57] You write your schedule. I used to journal it, right? That's how I kept track of my mileage of my time and notes on patients. You set your schedule out. And then at the end of the day, it doesn't look anything like that. You've scratched everything out and it's all changed and it's different. You learn to be very flexible.

[00:20:13] You learn to be very flexible because we are providing care for people whose conditions and circumstances and symptoms turn on a dime. Even death is unexpected inside hospice. Sometimes people's symptoms change. Their caregivers change. Caregivers burn out and they get frightened and it can be a chaotic.

[00:20:36] But that's why we have an interdisciplinary team and when you have good hospice mentors and supervisors, it can work really well and you learn to tell people I'm going to be late to your visit today. Somebody else needs me for a crisis. And I appreciate your patience and flexibility. 

[00:20:53] Jill: I can imagine it probably happens more often that your schedule has to change, just because, again, you don't always know what you're walking into.

[00:21:01] And I know even when my grandmother was on hospice, she was on home hospice, and then she got an infection where she had been getting radiation. So we sent her to the only hospice unit that she could go to just to give her a couple days to try to get the infection cleared up to give me a break. I had a baby, I was taking care of grandma, like the whole thing.

[00:21:23] And I remember visiting her there and I had the baby. And one of the hospice nurses said, Well, who's been taking care of her infection? And I said, Oh, well, I have. And she said, you've got to be really careful because you have this baby and like, she has a pretty serious infection. So I just want to make sure.

[00:21:40] And I was like, yeah, no, I'm good. I wash my hands a lot. I'm a cook, like I know how to wash my hands, so I'm really good about it. And then we went home and the nurse, I said to her, I really want to be here when my grandma dies. And she said, we usually know within a few hours because they start to show certain signs.

[00:21:57] Signs. So I'll give you a call as soon as we see any of those. And I was like, that's fine. I don't care what time it is. My husband will stay with the baby. It's no problem. And she called a couple hours later and she was like, I went in and I checked on her. Everything was normal. I went back an hour later and she was gone.

[00:22:12] There was none of the normal signs. It just happened that quickly. And my mom right away said, she heard that nurse saying to you that what you were doing was potentially putting the baby at risk. And she was like, nope. We're not doing this anymore. And she made up her mind. And she heard you say that you wanted to be there.

[00:22:31] And she was like, absolutely not. She is not getting up in the middle of the night to come sit with me. And so she ended up dying at like 11 o'clock at night by herself, completely. I mean, the nurse was just like, I'm honestly really. Yeah. Surprise like we just we didn't expect it. It definitely was interesting to me to have her so confident where she was like, we usually see these signs and then it was like nothing.

[00:22:54] She was fine one moment or fine, you know, dying, but still fine one moment and an hour later gone. Just that was it. I do believe that she probably did hear it. And knowing her being her. She was like, absolutely not. Is she getting out of bed? And absolutely not. Is she going to get this baby sick? So like, It's time for me to go.

[00:23:13] Helen: Yeah, she was protecting you. There's a lot of anecdotal information about that kind of thing, about people deciding they wait for their person to leave the room. I have seen it with adult men whose mothers were their caregivers and they wait until mom leaves. They won't do that in front of them. I've seen that several times.

[00:23:33] People wait for milestones like birthdays or anniversaries or somebody to come into town to make that last visit, that last grandchild. I've seen all of them but this last one. And then patient begins to actively die, the process gets set in motion. And you have to wonder how much of that is actually the human spirit, the human will making that decision.

[00:23:55] Jill: Yeah. I mean, 

[00:23:55] Helen: you can't quantify that. I think that's it's probably impossible to measure that kind of stuff. But 

[00:24:00] Jill: yeah, because it's not like you could talk to them afterwards and be like, so did you consciously choose to die when your person 

[00:24:06] Helen: left the room? Yeah, we'd like you to answer a few questions.

[00:24:10] Yeah. I mean, the unknown is a huge thing when it comes to death and dying. And we see that. So maybe your grandmother was thinking. That's horribly inconvenient for my family, and I care about them, and so I'm going to let this go ahead and happen. I'm just going to relax and let it move the way it needs to move.

[00:24:27] I don't know. I don't know either. 

[00:24:29] Jill: I really wanted to be there, though, with her. And I think some of it was, it's before I got into this work. It's really the inspiration for me getting into this work. And I think some of it was almost out of curiosity. I just wanted to see if something changed when she died.

[00:24:45] Obviously her body's going to change, but like, I don't know. I just wanted to see what was going to happen at that time because I was really curious. That transition from her being who she was had already started a couple weeks earlier where I was like, this is not the same woman. There's something is already gone.

[00:25:05] Part of her soul or whatever it is that made her, her definitely changed and shifted. So. Interesting. I 

[00:25:12] Helen: have seen so many patients, I call it turning inward because their socialization changes the way they communicate, the way they interact with loved ones and friends. That does change a lot. And that does start.

[00:25:26] Way before the body actually begins to physically turn itself off because our bodies know how to do this. It's natural processes. The circulation begins to change. I have seen this so many times where the mind and the spirit begin to move. Forward into a different place, the way I try to describe it in my experience, they're less interactive with other people.

[00:25:49] They communicate less. A lot of times they might be more reflective about things. And then you have people that see loved ones, visioning, we call it. visioning where they will see someone who has gone on before or they picture themselves in an environment from their lifetime history. I had a patient once tell me that his sister was with him and the family told me that his sister had died 20 years ago and he was describing being with his sister and playing on swings outside in the backyard when it turned out it was from a family farm when he was a child.

[00:26:24] So I really think mind and spirit do their own thing and begin moving to wherever they're going to move way before the body does. The body is a very intricate thing and it just takes time to shut itself down. And of course it's influenced by whatever disease process is going on. But I'm like you, I think there's a natural curiosity for a lot of people because we have been separated.

[00:26:49] From dying because we've medicalized it. People are in the hospital instead of dying at home. People go to a funeral home instead of being laid out and having a visitation at home. We've been separated from death quite a bit, so I think for a lot of people there's a natural curiosity. 

[00:27:05] Jill: My curiosity, it's not like I was happy my grandmother was dying.

[00:27:09] The reality was she was dying. So I was just trying to experience as much of it as I could because I was practically raised by my grandmother. She was so close to me that I wanted to be there to be that person for her, right? To give back to her what she did for when I was a child. And when I was First interacting with her when she had switched to hospice and the nurses were coming in and I was very, again, like she, a lot of her personality changed literally overnight when they said to her, there's nothing else we could do.

[00:27:45] We're going to send you home on hospice. And her favorite nun came in and talked to her and sister Tarsissia told me days later, your grandmother said to me, I'm ready to die. It's okay. I'm ready. And it's like once she made up her mind, she was ready, part of her, I think just kind of started to go was like, okay, cool, we're gonna start this transition, but the body definitely hung on a couple weeks longer, but I was just very confused at first and very overwhelmed, because nobody prepares you for that.

[00:28:13] They just said here, we're going to send grandma home on hospice, and And There you go. There's not a manual. There's not 

[00:28:19] Helen: an instruction manual that comes with it. 

[00:28:22] Jill: No, there was nothing. And thank God for the hospice nurses. They were amazing and so helpful. And so once I started to relax and I accepted the reality of it, then there was just a curiosity and an interest.

[00:28:35] I've always been spiritual, even though I was never even, when I was a child, religious, even though I was raised Catholic. But I think I've always been really curious. What is the soul, and where does the soul go, and how does it, how does it end up here, right, in this body? And then, does it, does it, Just disappear when we 

[00:28:54] Helen: die?

[00:28:55] What does, what does that look like? 

[00:28:57] Jill: Yeah. 

[00:28:57] Helen: What does that look like? In my experience, being with people as they were actively laboring, because it's physical work to die as these body systems shut down, but then to see the actual death at last breath, it's so still. So still, I remember so many times being acutely aware of the sacredness of it, and not in a religious way, definitely in a spiritual way.

[00:29:26] And there's so much emptiness to that physical body. There's definitely something missing. It's hard to describe it. But there's a, I don't know, an energy that's gone. It seems unnatural to be with a body. Because it's still a person, but this is the person's body that's remaining, is the way I see it. And to know that things are incredibly still.

[00:29:51] You know, you put your hand on the chest and you can't feel a vibration of a heartbeat. You don't feel the chest rising up and down. And that became my way of saying goodbye, in a way. When you're a hospice nurse, a lot of times you get called out to people's homes. To help manage a death for someone that you've never met before that belonged to some other nurse, right?

[00:30:17] It's complete strangers. The flip side of that is we deal with this every day and it seems normal to us. We can do this, but the family, none of that is normal. They've never lost a mother, never lost a sibling, never lost a child before, hopefully not a child. So you're walking in to this situation where you know what's supposed to happen as a hospice professional, but the family, of course, is grieving and they have their own dynamics.

[00:30:43] It may be 10 people, each of them doing their own individual style of grief. And then your job is to go in there and help take care of the patient or the body, whatever stage they happen to be in, and then to care for the family as well. And one of the rituals I developed for myself was, when you do a pronouncement here in Texas, You're listening to breaths, you're listening for heartbeats, you're looking at eye responses, pupils, things like that.

[00:31:13] There's a little protocol that we follow. And one of the things that I always wanted to make sure of was that family didn't think of this as a clinical procedure. This was still a person, this was their loved one. And so when I assess the patient, I would put my hand on the shoulder while I had my stethoscope on the chest.

[00:31:34] It was a way of saying this physical connection is still there. It's still okay to have it. You don't have to be scared to touch your person, your beloved that's lying in the bed. And sometimes I would put my hand up on the forehead just as a way of staying connected. And I think for me, for patients that I knew, it was a way of saying goodbye.

[00:31:55] It was sort of a benediction to the time that I had spent with them. And for the family, it was a way of saying, they're still connected here. You can feel comfortable to touch. And I am honoring this physical body. Just because the death has occurred doesn't mean this person ceases to be. The history, the legacy, their connection with you, all of that's still very real and will continue to be as long as you have memory in your own life.

[00:32:20] So that ritual of touching and staying physically connected was very important. But it is such a stillness. It's the only way I can think of to describe it. 

[00:32:30] Jill: I wanted to put a little extra info at the end of this episode because I often get asked about being a death doula and what we do and how we do it.

[00:32:40] And I just wanted to remind everybody that if you are navigating the end of life for yourself or a loved one, it can feel sad and frightening and confusing, but there is definitely help out there. And Support from death doulas during the time of death, we address various aspects of the dying process.

[00:32:59] There's the emotional, the mental, the physical, and the spiritual. But what is a death doula? We are non medical people trained to care for somebody holistically, taking into account the whole person's needs at the end of life. Death doulas recognize death as a natural, accepted, and honored part of life that can be celebrated and not feared.

[00:33:21] We embrace the unique life journey each person is on with no judgment or ideas of what a good or bad death looks like for you. Doulas can bring comfort, empowerment, and a deeper sense of meaning to both the person approaching death and their loved ones. Death doulas can help dying individuals, in person or virtually, by helping them work through some of the natural fears and anxieties that often accompany thoughts of death, whether it's your own or that or a loved one.

[00:33:50] Helping people contemplate their life journey and recognizing important relationships and cherished moments, death doulas can guide people in finding closure in relationships. The weeks and months leading up to death can be an opportunity for connecting with loved ones and with some guidance you can work to create a time of connection and love rather than fear and overwhelm.

[00:34:11] Part of this can be done by designing rituals and ceremonies that resonate with a person's values and beliefs. These practices can be done during the final hours and days leading up to death. As a death doula, I empower individuals by providing a safe space to express their wishes and needs, and then I assist them in communicating their wishes and needs to their medical team, to their loved ones, whoever needs to know.

[00:34:36] Death doulas not only support the emotional well being of the dying person, but also help to make it a smoother, heartfelt death by supporting the dying person's loved ones and caregivers through the emotional process. Working with a death doula at the end of life offers invaluable companionship and guidance to both the person nearing the end of life and those closest to them.

[00:34:58] So thank you for listening to today's episode of Seeing Death Clearly, and don't forget that next week's episode will be the second part of my conversation with Helen and you really don't want to miss it. If you enjoyed this episode, please share it with a friend or family member who might find it interesting.

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[00:35:51] Thank you and I look forward to seeing you in next week's episode of Seeing Death Clearly.