The Evolution of End-of-Life Care with Barbara Karnes

In the 1970s, Elizabeth Kubler Ross and Dame Cicely Saunders revolutionized our approach to death. While Kubler Ross emphasized the neglect of the dying in America, Saunders proposed a novel philosophy with her Hospice program. The focus shifted from mere medical treatment to a holistic approach of embracing life during the dying process.

Our guest, Barbara Karnes,  a registered nurse, embarked on her hospice journey driven by Saunders' vision. Inspired by the idea of creating a space for living, Barbara started volunteering for hospice.  The original essence of hospice, existing outside the medical model, has been gradually absorbed, and Barbara sees the emergence of end-of-life doulas as a refreshing return to that independent, compassionate approach.

She envisions a future where end-of-life doulas integrate into the hospice model, providing the crucial gift of time that medical professionals often lack. Barbara emphasizes the importance of educating communities about the distinctive role of doulas, urging them to connect with churches, senior citizen communities, and nursing facilities.

The conversation delves into the societal perception of death as a medical emergency and the reluctance to let go. Barbara advocates for a shift in mindset, facilitated through community education and open dialogue about death. She believes that normalizing death will lead to a more balanced approach to living.

Reflecting on historical shifts in how death is handled, Barbara notes a cyclical pattern. From deaths at home to hospital settings and now a return to a preference for dying at home, education plays a crucial role in shaping societal attitudes. She encourages parents to discuss death openly with their children, contributing to a more informed and accepting future.

Barbara's philosophy underscores life as a continual learning process, emphasizing the importance of expressing love regularly. Drawing parallels between life's tightrope walk and our attempts to balance experiences, she stresses the significance of never leaving words unspoken

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Transcript

[00:00:00] Barbara Karnes: I realized that we lead with our heart and not our mind during intense times. And when someone you care about is dying, that's pretty intense. And it's our heart that often overrides what our mind knows. 

[00:00:18] Jill: Welcome back to Seeing Death Clearly. I'm your host, Jill McClennenn, a death doula and end-of-life coach.

[00:00:25] In this episode, I talk about the evolution of end-of-life care with Barbara Carnes, the godmother of modern-day hospice. Barbara takes us back to the 1970s, highlighting a shift towards a holistic approach to dying with hospice to the modern-day emergence of end of life doulas. She envisions death doulas integration into hospice and end-of-life care settings.

[00:00:48] Providing the gift of time that medical professionals often lack. Barbara emphasizes a necessary shift in societal perception of death and encourages open dialogue, aiming to normalize death for a more informed and accepting future. Thank you for joining us for this conversation. Welcome to the podcast, Barbara.

[00:01:07] I am so excited about this. For anybody that doesn't know who Barbara Carnes is, Barbara is basically like the godmother of hospice. She's kind of super famous in our world. And when I was saying to my nine year old daughter that I was interviewing you today, she was like, okay, I don't know who that is.

[00:01:24] And I was like, imagine your favorite YouTuber. If you were getting to interview your favorite YouTuber, that's how mommy feels right now. And she was like, Oh, that is a big deal. So thank you. I'm really, really happy to have you on the podcast today. 

[00:01:39] Barbara Karnes: I'm glad that you invited me and I look forward to a really interesting, stimulating conversation.

[00:01:44] I should tell you that my voice is a little hoarse. What I've learned being a widow. Is that other than talking to the cat, I'm not talking, you know, you get up and when you've got a partner, you talk to them and it's interesting. So I sound a little funny to myself and I think it's because I haven't been talking this morning.

[00:02:07] Jill: Interesting. Yeah, that's one of the things that you don't really think about. I'm so surrounded by my kids and my husband pretty much all the time. So I've been talking all morning already. Because that's just how it goes. That's a big part of your shift in your daily life. If you become a widow or widower.

[00:02:25] Can you just tell us a little background about yourselves? Anything that you want to share about? Who you are before you were the Barbara Karnes of Hospice Godmother. 

[00:02:35] Barbara Karnes: Okay, I am a registered nurse and I graduated from nursing school in 1962, long time ago. And I thought as soon as I graduated, I've made a horrible mistake.

[00:02:51] I should have never been a nurse, should have been a social worker, but because of that, I never worked in the medical field. I got married, I had children, I raised them, and actually I was an interior decorator for a while, so I did all kinds of stuff, but not nursing. And in the 70s, Elizabeth Kubler Ross came forward.

[00:03:16] And said, we Americans are not treating our dying well. We're putting them in the hospital room at the end of the hall, and there they die. At that same time, Dame Cicely Saunders, in London, developed a program that she called Hospice. And her philosophy was, dying is different. Then getting well and let's treat our dying differently.

[00:03:46] We'll have a building and we'll serve cocktails in the afternoon and we'll concentrate on living. Well, that idea sparked my interest. I thought, yes, this is something I want to do. And so I thought I'll volunteer for a hospice and talk about divine order. I was at a class on world religions and you know how they have, you introduce yourself when you're in a class and say a little bit about yourself.

[00:04:19] One of the participants was the volunteer coordinator of a hospice. And when I said hospice was what I was interested in, we talked afterwards. He said, you got to come to work for us. And I said, I can't come to work for you because I don't have any experience. I had done a refresher course in nursing.

[00:04:43] And so he said, well, come talk to So I went in and the director said, how about We hire you as a part time backup for the nurse we have and that's how I got started. When I look back on my hospice adventure, my life adventure actually, I believe that my not having any medical background other than my nursing training was the gift that I brought because I didn't.

[00:05:18] treat or interact with people the way a nurse, and I put that in quotes, does. Because there wasn't any protocol for how to work with dying, they were off at the end of the hall. So I made it up as I went along. And my patience taught me end of life. It wasn't nursing school that taught me end of life. It was five years of daily contact with people who were dying.

[00:05:48] They were my teachers.

[00:05:49] Jill: And that's a beautiful way to learn because then you learn what they actually need, not what you were told or taught they need. And in some ways, I feel like that's kind of what All of the death doulas are doing right now is we're getting the training from different organizations.

[00:06:06] But then all of us are going out into these experiences and doing things a little bit differently. Some people will work with grief, some people only work with death, some people work with families, and we're figuring out what it is people need as we go through the process. And it's. difficult sometimes, because some days when people say to me, what do you do?

[00:06:26] I don't even know how to answer that. I'm still figuring it out. But it also allows me to not just say, well, this is what I was taught to do. And this is how I'm going to do it. It allows me to say, well, what do they need? How can I help them with whatever problem they're having, not just pulling this prescribed.

[00:06:46] remedy out of a teaching that I learned. So that's really amazing that that's the way you did it. And you really did set the stage for hospice to be what it is today. Anybody that you ever work with or talk to from hospice, everybody knows you, everybody knows your little books. I even have some of your regular books, not your little booklets upstairs that were some of the first books.

[00:07:08] That I read when I started getting into this work because I came from food service, I took care of my grandmother at the end of life, but I had no resources then. I didn't know who you were then. I didn't know about your booklets then, which I wish I would have, but so your books were definitely one of the first things I went to, to learn and read and understand what it was that people experience at the end of life and how I can best help my clients and their families.

[00:07:35] Barbara Karnes: Well, you mentioned end of life doulas and how they're outside of the medical model. Hospice started outside of the medical model. We were not part of the medical establishment. That is the gift that hospice brought. Hospice now, over the years, has slowly been absorbed into the medical model. And it's changed.

[00:08:02] It's not what it started out to be. And what I see is end of life doulas are outside of the medical model. They are bringing a new, fresh approach to end of life. And end of life. Doulas are a gift. And in my heart I feel I'm an end of life doula because I started like your starting and I learned by being outside of the medical model and you will also learn and bring fresh ideas to end of life, and that's really exciting to me.

[00:08:41] Jill: It's exciting to me to and networking in person, especially now I'm trying to get out into my community, meet people that are working for different hospice companies and elder care lawyers and just anybody that works kind of in this realm. And there's definitely a little bit of. I'm finding from hospice.

[00:09:00] There's a lot of like, well, we already do what you do. And I'm like, well, yes, but also no, we're kind of filling some of the holes in what you do. But it's difficult because I am also finding a lot of people saying, well, I could get hospice for free. Why would I pay you to do? Kind of what I'm already getting through hospice.

[00:09:22] So now I'm trying to work my way into maybe talking with some hospices about bringing me on as a like contracted employee. But then I don't know if I as a doula want to get involved in the medical model of hospice, even though I still would not be providing the medical care. I fall in this weird place where I'm trying to figure out where doulas fit and how we could work with hospice.

[00:09:49] But also not necessarily be part of hospice. I still want to stay separate. So I'm not sure how that's going to happen, but I'm trying. 

[00:09:57] Barbara Karnes: Well, it's interesting because in my vision, what I would like to see is that end of life doulas were a part of the hospice model. And that is because going out on a limb here.

[00:10:13] Medicare has super regulated hospices. And because of that, the staff doesn't have the time to spend with patients and families. And the problem with that is, time is the gift we give them. And doulas bring the time. You're not regulated, and you can be there at the moment of death. That was my goal, was to be with the family at the moment of death.

[00:10:45] Because death is our goal. Everything we do before the death leads up to it. Everything we do in bereavement support gradually eases us out of the picture. But the goal Is to create a sacred moment for the family and all those presents and they will carry that moment with them forever. And so that's why the moment of death and the support in the days to hours before and the hours after that are so vital.

[00:11:23] in end of life work. Hospice doesn't do that anymore, so end of life doulas do. That's part of what you're trained and your focus is that moment of death, and so I would like to see hospice bring you in for that. I'm not confident that that's going to happen.

[00:11:44] Jill: And that's kind of where I'm at, where I'm not confident that that's going to happen.

[00:11:49] But I'm also confident that end of life doulas, we will find our place in how we can fit into the care that is already being provided. And I know I volunteer at a hospital. And a lot of times when I work with the hospice team there, it's because They'll call me in because they have so many patients.

[00:12:11] They don't have the time to go and sit. And so if they know that I'm there that day, they'll call me and they'll say, can you please just sit with this person so they're not by themselves. And so I will sit with people that are actively dying for as long as I can. I sat with a man that had no family. He had no friends.

[00:12:28] He had been living in a home his entire adulthood. And so when he was dying at the hospital. He had nobody, the staff kind of like dropped him off and they were like, we can't stay. And I just really sat with him. I didn't know anything about him. So I just talked about, I don't know, life and anything that I could think of that was pleasant to talk about.

[00:12:48] But I would love to be able to be that person locally for the hospice. I'm just not sure how to make that happen. So, and again, we might not get there and I have to also be okay with that too. 

[00:13:00] Barbara Karnes: I'm going to use the word marketing, but how doulas. market themselves to the community. You want to make the community see and understand how you're different and your gifts and the support, the time that you can give.

[00:13:19] So that means talking to every church group that you can find, every senior citizen community that you can find. We have to educate so that people want us. And notice I use the word us because in my heart, I'm a doula. 

[00:13:36] Jill: I am finding it's hard for me sometimes because marketing is not my strong suit. It's not the work that I really want to be doing.

[00:13:44] And I'm trying to use social media and I am trying to go into the community. And I charge by the hour for my labor and so I try to say to people I'm almost like the Ritz Carlton of end of life care where it's not going to be for everybody and I understand it's not going to be for everybody but I will provide the Ritz Carlton level of service and that's partially because my husband used to work for the Ritz so all of our training that we used to do when we owned a bakery together is very Ritz Carlton based and so I do know Ritz Carlton level service and I feel confident saying that that's what I'll provide.

[00:14:20] But then I also want to be able to provide it to everybody who wants it and everybody who needs it. And I need to get to that place where I'm like, yes, but I need to bring in the money first to provide the service for free to the people that I want to as well. So there's finding that balance, but it is hard when you don't want to market.

[00:14:38] I just want to do the work. I don't want. to be a marketer and a salesperson. But nowadays, if you own a business, that's how you have to do it. You have to be everything until you could afford to pay somebody to do the other parts that you maybe don't like as much. When I did my doula training, because of course I did my training and I thought, well, I'm just going to sit with people who are dying and it's going to be this beautiful, peaceful moment.

[00:15:01] And there's just so many other places that we need to work together. Leading up to that moment. And so I'm hoping that we'll figure out those places where doulas can best help because I think hospice is amazing. They do an amazing job. It's really why I got into this was because of my grandmother's experience on hospice and the hospice staff was so supportive and so wonderful.

[00:15:26] And it just Really touched me how they worked with my grandmother and with me and I just loved them and I really wanted to do this work, but not do the nursing stuff. I really admire hospice nurses, but I'm not a nurse and I don't want to be a nurse. I want to do the other parts of support for people.

[00:15:48] Barbara Karnes: Dying is not a medical event. Dying is a social, communal event. You don't need doctors and nurses when you're dying. You need someone who can bring the family and the significant others together, that has the ears to listen. Yes, doctors and nurses, there is a medical component, but It's not the main focus, the focus is the actual dying and the support that comes from that.

[00:16:24] And I've got to say, our medical model, hospitals, nursing facilities, nursing schools, medical schools, the medical model addresses diseases that people have, where end of life work addresses people that happen to have diseases. And so the focus is on all the tools that are needed to support a person in this life experience that we're all going to go through.

[00:16:59] And so the blend of course would be hospice and doulas because hospice has become more absorbed into the medical model and that's not where end of life Is or should be will say should. 

[00:17:17] Jill: We have this idea that yes, death is a medical emergency and we have this idea of that. We can't let people go. And I understand when you love somebody, it's really difficult to watch the end of their life and to say it's okay for me to let them go.

[00:17:36] But also it seems like sometimes people are just put through unnecessary pain and suffering by loved ones that mean well. And even nurses and doctors that mean well, again, I was really surprised in the hospital, some of the doctors that are really not okay with somebody dying. I was like, but you're a doctor.

[00:17:53] I thought you'd be fine with it. Part of why I started a podcast and going out into the communities and talking, I'm hoping that that will shift a little bit and that people can accept death as a natural part of a human existence and a natural part of life and be able to not feel like. It's a bad thing when mom is at the end of life and she's not eating.

[00:18:16] That's a natural part of dying. Our body knows what to do. It's not going to want to take in food anymore, but we don't know that because we don't talk about death and dying and we don't see the realities of it. So I'm hopeful that that's shifting or will shift with time. 

[00:18:32] Barbara Karnes: The thing is, what we, we as a society have lost track of, everybody dies.

[00:18:39] We are born, we experience, and then we die. It's the name of the game. And yet we have come to believe that everyone can be fixed. And so we have to reach a point where we can support and guide these Families that are experiencing the death of a loved one and it isn't sufficient to put the person at the end of the hall and have not even call the family so that they're there.

[00:19:13] We've come a long way. I just don't want us to backslide into how we're treating end of life.  

[00:19:21] Jill: Yes, because I think as humans, we do that. We go forward a couple steps, but then we go back a couple steps, and hopefully we're moving in the right direction. And I, as a parent, have been trying to encourage other parents to just talk more openly and honestly with children about death.

[00:19:41] But it's really hard when these parents won't even talk about death. They won't talk to each other about what they want. You know, and I'm like, all right, we may be mid 40s. It might not happen soon, but it might. We don't know for sure. So we need to talk about it. We need to get a plan in place, but we're so afraid to because I think it is that we've always pushed death into this little box and we don't see it.

[00:20:07] We don't experience it. And so then when it's time for us to talk about it, it can be really difficult. 

[00:20:12] Barbara Karnes: Before the 60s, I'm going to say. Grandma died at home. She died in the upstairs bedroom. We were there. We laid her out body in the dining room and family and friends came. Death was considered natural that it happens and here's what we do.

[00:20:33] And then in the sixties, hospitals became more of a place and people died in the hospital. And there they were at the end of the hall. Then, from hospitals, we evolved to moving our dying to nursing facilities. And there again, unfortunately, they died at the end of the hall. I think we're coming full circle now, and people are more aware that everybody wants to die in their bedroom, in their own bed, with the cat on the bed, and that's through education.

[00:21:12] And if we bring death back as a normal, natural part of life, Rather than something that we can fix, then I think we will actually have a much more balanced approach to living. 

[00:21:30] Jill: Yes, it will definitely change the way that we live. And as you're saying that about how people used to die at home, I think, unfortunately, right now, the way that our society is set up.

[00:21:40] set up. It's really difficult on people. There's a client that I had been working with recently that they're in a nursing facility right now. They really don't want to die there. And they're probably nearing death soon. And ideally they want to go to one of their children's houses. But then when I talk to the children, they're like, I don't know if I could do this.

[00:22:02] And it's not even that I don't want to. I work, I have children. I don't know how I would be able to have my parent in my living room dying and be able to still function in my day to day life. I was thinking about it and I don't know the answer to that. Because unfortunately, it's not like you could say it to your job anymore.

[00:22:25] Like, Hey, my parents dying. I need a few days, maybe a few weeks time to really be there and support them. That's not possible. Our jobs don't allow that. And even with the kids, so many of us now are. Still having children that are young enough that we need to really be there and care for them and get them to school and run them to soccer practice.

[00:22:47] And there's the 18 things that we're running around doing while also trying to work. And then to add to that, the idea of bringing our parent or our grandparent into our home, as much as I think a lot of people would love to do it. It's not really possible with the way that society is set up anymore.

[00:23:06] And that's really unfortunate because it would be better and probably less expensive overall if we were to bring people into our houses to care for them, but we don't really have the ability to do it the way that we're set up.

[00:23:19] Barbara Karnes: Well, and as you point out. It's hard work and not physically. It's hard work.

[00:23:26] Not only that, you've got the emotional burden that you're carrying in that mom's going to die and she's going to die here. Not an eight to five job taking care of someone who's dying. It's hard. And so add that to a job, family, and as you said, it just doesn't always work. I know that when my mother was dying, I literally quit my job.

[00:23:58] How blessed and fortunate I was. I figured I can always go back to work, but I won't always have a mother. And moved her from out of town in my home. And she lived with, with us, my kids, husband, for five months. And I will say to you, that those five months, we developed the best relationship we had ever had.

[00:24:25] Ever. We became closer. I learned so much. But I also was given so much. So the point I'm making is sometimes it's worth the sacrifice that we make in order to have our special person at home with us and giving them the gift of dying in a home with loved ones around. Not everyone can do that, but some people can think about it and do it.

[00:24:56] Jill: And it can be a really beautiful time. I'm so grateful that I was able to do it for my grandmother. I was running my own business along with my husband, so he was able to take more time there so I could be at the house where we had already been living with her. But the closer she got to death, the more she couldn't be left alone.

[00:25:15] And there is this misconception when grandma got sent home on hospice. I thought, Oh, okay. Well, there's probably going to be somebody there with her. And it's like, well, no, we show up for an hour to clean her up a little bit, take care of some medical stuff. We have somebody that'll come in and help her bathe.

[00:25:29] But I was there with her. I was up with her at night. And I am so grateful that I had that opportunity. I wouldn't trade it, even though there was times when it was hard, but it was mainly hard because I didn't know what was going on. I was confused. I was overwhelmed because I was confused. And now I look back on that time and I wouldn't trade it.

[00:25:50] And I want to be able to help other people. Be able to do that for their loved ones without the fear and the confusion and the overwhelm because I was able to connect with her and we had some really interesting conversations. And I really love that I had that experience, but it is a very time consuming job.

[00:26:11] It's also part of our human experience and it feels like a gift. to be able to give that to a loved one and to be able to have that experience with them. So I hope more people can figure out how to do it. Of course, with support, people like death doulas, but even hospice, most people don't call hospice until it's later.

[00:26:31] Right. I didn't know about hospice for my grandmother, and she was sick for a long time. For four years, she had cancer. For four years, we were going through these treatments. She could have been on hospice much earlier than she was, and we could have been controlling her pain better. And a lot of things that were going on with her, she really was only on hospice for about three weeks, where I wish I would have known.

[00:26:59] Barbara Karnes: Well, and I think that we give people more time than they have. I have been an end of life for umpteen years, many, many, many. My husband just died. I gave him more time than he had. In my mind, he had months to live when really he had weeks. In my mind, he had weeks to live when really he had days to live.

[00:27:26] And I realized that with all my knowledge, I was giving him more time, and that most of us do. Whether you've got end of life knowledge or not, we just can't really bring ourselves to, Dad's gonna die, and he's gonna die in a few days. We add more time, unconsciously, and then that's one of the major reasons we need guidance, and that's where we need hospice.

[00:27:59] And I think that because we give people more time than they really have is one of the reasons we call in hospice so late because we don't really realize we're talking days or weeks. 

[00:28:14] Jill: And I am sorry about your husband. How long were you married? A really long time it sounds like. 

[00:28:20] Barbara Karnes: We had known each other for 65 years and we were married 61 years.

[00:28:26] You know what? 

[00:28:27] Jill: Yeah. I think that's amazing. It's beautiful that you were together for so long. I've been married, I don't know, 2005. So it's at almost 20 years now. We're getting close to 20 years. I knew my husband for a couple of years before that. And in my head, I really like to imagine us. It's making it to 60 something years.

[00:28:48] What a gift that is, but I'm sure anytime your life partner dies, it's going to be difficult no matter what, because that's your person that you spent so much time with and you loved so much. And I like to think that I'm going to be more prepared for it because I do think about it. I understand the reality that one day one of us is going to die before the other.

[00:29:12] And I like to think that I'm going to be better at it than I would have been in the past. But I don't know if that's really the case. I mean, like you said, even for you, you've been doing this way longer than me. And you've Still had this idea that there was going to be more time that there's that idea again of like, we don't want to ever let go of our loved ones.

[00:29:33] And I think that's okay, too. I don't think that there's anything wrong with that feeling, as long as we can be realistic in that we will all die one day. It doesn't mean that we're okay with it, but It is the reality that we will die one day, including people that we love, or we're going to die before them.

[00:29:51] And I don't want that to happen either. I don't want to die now and leave my husband and my children, but also I don't have control. I don't have a choice when that's going to happen. 

[00:29:59] Barbara Karnes: I  realize that we lead. With our heart and not our mind during intense times and when someone you care about is dying, that's pretty intense and it's our heart that often overrides what our mind knows and I found that on a regular basis.

[00:30:21] Jill: Thank you for sharing that with us, because I was really curious, even observing on social media, you did share on your social media that your husband was dying, and then you did share when he died. And that was my first thought was, I wonder if Barbara is better at this than the rest of us, because of all of her experience.

[00:30:39] But the reality is, I don't think we can ever be fully prepared. for somebody that we love to die. My grandmother, I think, was 60 when she became a widow, and she lived to be 94. So she lived a full lifetime, practically, without my grandfather. And I can't control when and if it's gonna happen sooner than later, but I can just really be Fully present now with my loved ones, knowing that it could end at any point.

[00:31:11] And we actually did just have a local father in our community, um, 48 years old, had a heart attack, left two kids that are the exact same age as my kids. It easily could have been me. It easily can be me. Like, there's no controlling it. So I just try to really be fully present and appreciate every moment that I have.

[00:31:33] Because yeah, Steven and I have known each other. I was 21. And it's at a point already where I have known him longer than I didn't know him in my lifetime. And I hope that we can get to 60 something years. But I also know there's no guarantees. 

[00:31:48] Barbara Karnes: One of the things I realized is that, and my husband was seven years older than I am, and I went from having, being raised by parents, then I went to nursing school and was in a dorm and house mothers, and two weeks after I graduated, I got married.

[00:32:09] I have never lived Alone ever and then I also realized he raised me I grew into the person that I am because of my Relationship with him and I don't know that we always think about marriage and partnerships in that way I didn't until it was gone and then I started thinking about it Wow. 

[00:32:34] Jill: Yeah, you're right.

[00:32:35] And I don't really think about it that way either, where when I met my husband, I was still very young and I have grown and changed so much with him, along with him, with his support and his love and his guidance through different phases in my life. And of course, becoming parents is like a whole other thing.

[00:32:55] I mean, that just completely changes your relationship with your spouse and how you do things together. And We parent a little bit differently and trying to kind of navigate all of that. And yeah, I mean, we do kind of grow up with our partners if we have been with them for a long time. And my grandmother was similar in that she moved from a farm right into my grandfather's house.

[00:33:19] Like she had never lived alone. She didn't know how to pay her own bills. She didn't know how to do anything when he died. Yeah. And it's an adjustment. I mean, It's certainly doable to learn it, right? But we don't want to. That's part of it too. It's like we don't want to have to learn those things. But she learned it and she did it then for 30 something years afterwards without him.

[00:33:41] And for you living alone now for the first time, that's just really, that's a big Adjustment. Is there anything that as a new widow that you have found has really been able to help you with the small day to day adjustments that we don't really think of when our person that we've been with for so long is now no longer with us?

[00:34:04] Barbara Karnes: I am really blessed in that Barbara Karn's books office is part of our home and so I have three, often five people, Monday through Friday, nine to who knows what time, in here every day. The weekends is when there's no one. And I was thinking this weekend, for the majority of people, when their loved one dies, in my age group, are alone.

[00:34:38] They don't have the kids coming in several times a day and poking in and are you eating lunch and let's eat lunch together. I've got someone. Monday through Friday, but the majority of people don't, and that aloneness, that not talking, that what am I going to do now? It's 7. 30 in the morning and I've got the house clean.

[00:35:03] What do I do now? I never thought of that in all the bereavement and grief work and workshops that I've led. That didn't really register. Until I'm walking in those shoes, 

[00:35:18] Jill: I think there's a lot of things that until we're walking in the shoes, we can't know the reality of it and it will change. That is one thing that I know about grief from my personal experience.

[00:35:31] And with talking to a lot of widows, people that have had children die and some really traumatic deaths. It changes over time. It doesn't necessarily go away, but the day to day things, the triggers for the grief and the things that you don't even realize that you're going to miss about somebody, those things, they're going to change over time.

[00:35:54] And I think that's almost in some ways, one of the beautiful things about grief is that It will change, it doesn't go away, but it will change, and the way that you'll navigate through it changes. And I love actually that life is about change, as much as sometimes I still want to control things and kind of keep things in these neat little boxes, I also do understand that part of what I love so much about life is change, even when sometimes it's not.

[00:36:24] A positive quote unquote positive change. It's still just part of the experience. One of the tattoos that I have is a poem that my grandmother wrote that I found right after she died and I took it and I had it tattooed right over my heart. And it says life is a journey and love is your fuel. And when I saw that, it was the last line of this long poem that she wrote.

[00:36:45] And I saw that line and I thought, that's, that is her. Like, that was always what she tried to instill in me. When I would be upset about things, she would be like, Jill, it's gonna get better. This too will end. And it's the truth that if everything went Easy and well in life, we would be bored because we're humans and so part of the beauty of life is the changes and as long as we keep that love as kind of the thing that fuels us through, I feel like we can face anything, even some of the things that are sad and hard.

[00:37:19] Barbara Karnes: Part of my philosophy is that life is a school, we're here to learn, and every experience that comes across our path is to learn from, whether it's an experience, whether it's people, it's all about learning. Life is school. 

[00:37:36] Jill: Yes, and I like that idea as well. And I don't know what I believe necessarily about like our souls and what happens to us in between or after this life.

[00:37:47] But I know that some of the theories that I've read is that like, literally coming to earth is like school for our souls that we can choose what life we want to be born into what experiences we want to have. And We will learn or not learn what we need to. And if we don't learn it, we'll keep repeating the same lessons.

[00:38:09] And again, I don't know if I believe that 100%, but I also don't not believe it. I feel like there's so many theories and ideas that people just grasp onto and they're like, no, this is it. And this is how it is. And I'm like, are you sure though, because. There's so many other ideas that maybe seem a little bit out there, but honestly they only seem out there because we haven't grown up with them.

[00:38:35] If we grow up with these ideas and they were taught to us since we were children, then it would seem like, of course this is real, of course this is true. And I just love thinking about all of it. And The idea of life being a school, it allows us to openly embrace all of it and learn what we need to learn and learn what we can learn and experience it fully because we need to experience it fully, not numb ourselves like most of us have learned to do over time.

[00:39:02] This is beautiful. 

[00:39:04] Barbara Karnes: Good conversation. We're doing good.

[00:39:05] Jill: Yes. We actually are. just about coming up on time. So this is perfect. I'll just have you back on again sometime because I would love wonderful because really I am. I'm like, I can't wait to send my husband a screenshot and be like, look who I talked to today.

[00:39:20] He's actually in Chicago. And there's always that little part of me. That's like, I just hope he comes home. Just hope he comes home. I know I can't control it though either. So when he does come home, I'm going to be very happy to see him. And when he left, I made sure to say goodbye and I love you because I don't ever want to think to myself, I didn't take that time.

[00:39:42] And that was the last time I saw him. So I try, I make my best effort at least. I'm not perfect, but I'm trying. 

[00:39:49] Barbara Karnes: I learned working with end of life. Always say I love you when I'm talking on the phone, if my kids leave the house for any reason. I don't let them leave without my saying I love you. Because you don't know what any second holds.

[00:40:07] Life is a tightrope and we're trying to balance and so I don't let anyone in my heart without saying I love you because I don't want it to be the last time I talk to them. I didn't say it. 

[00:40:21] Jill: Yes. And I even now will sometimes People that I don't even know very well if they do something or they say something and I really appreciate it in the past I was a little bit more reserved about that I was afraid people were going to think I was weird or silly and some of that I actually learned from my daughter because From probably about the time she could talk whenever we would go out somewhere, she saw that somebody was wearing something she liked, or she liked their hair, whatever it was, she would tell people.

[00:40:51] And I've had people stop and say, that really changed my day. I was having a really bad day. And I'm so touched that she told me how much she liked my shirt. And so now, I will sometimes say to myself, well, what would Verbena do? If Rubino was this one, she would say it to somebody, even if they thought it was weird, because I feel like there's just not enough of that in the world.

[00:41:15] And there's no reason not to. And again, even if it's somebody I don't know well, I don't want to think to myself, well, I didn't say to them, thank you so much for whatever you did, because what if I never have the opportunity? And so I want to say all the things in case I don't have the opportunity, even if it makes me a little uncomfortable still sometimes, but there's nothing wrong with being uncomfortable sometimes.

[00:41:40] Barbara Karnes: No, that's life. It's not going to be smooth all the time. It just, it can make us stronger, can be upsetting, it can make us angry, all of that's life. That's what it's all about. All of these emotions, all these thoughts, part of the game. Yep. 

[00:42:01] Jill: The good, the bad, and everything in between. All the different things are what make life interesting.

[00:42:06] And so we need all of it. And I try to embrace all of it. I'm getting there. Me too. Is there any last things you want to leave us off with? I'm definitely going to put a link to your books and your website and really for anybody that doesn't know who Barbara is, check out her social media and read some of her books.

[00:42:27] So I will put all that in there. But is there any last stuff you want to leave anybody with or anything you have exciting coming up that you want to talk about? 

[00:42:33] Barbara Karnes: Not that I can think of. We covered some great Territory in our talk today, we said and shared stuff that I feel is very important to me. And if we hadn't, I would have brought it up now, but we did good work today.

[00:42:52] And so no, I can't think of anything special because so much of what we talked about is really special. And I want people to know and hear and thank you for that opportunity. We did. Let's do it again. 

[00:43:06] Jill: Yes, and really, thank you, Barbara. And I am genuinely flattered that you took the time today to have this conversation with me because I'm not exaggerating when I really feel like I'm like fangirling right now because I appreciate you.

[00:43:21] I appreciate all of your work. And I am really happy that you were here with me today. Wow. Thank you. Thank you for listening to this episode of seeing death clearly. In next week's episode, I talk with Brenda Pollack, who transitioned from a career in environmental lobbying to become a coach and wellbeing trainer, specializing in mental health, menopause, and stress management.

[00:43:44] She shares with us her experiences with grief, discussing navigating loss, and the tools she developed for resilience. If you enjoyed this episode, please share it with a friend or family member who might find it interesting. Your support in spreading the podcast is greatly appreciated. Please consider subscribing on your favorite podcast platform.

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. Thank you, and I look forward to seeing you in next week's episode of Seeing Death Clearly.