End-of-Life Conversation with Barbara Karnes, RN

In this episode, I welcome back Barbara Karnes to discuss the journey of transitioning from 'we' to 'me' after her husband Jack's death. 

Barbara shares heartfelt stories about her early days in hospice care, highlighting the value of understanding daily responsibilities and her experiences with end-of-life preparations, emphasizing the importance of discussing finances and duties early. 

We also discuss how death doulas play a role in modern hospice care, her thoughts on medical aid in dying, the creation of her widely beneficial booklets like 'Gone From My Sight,' and offers perspectives on educating families about the natural process of dying. 

This episode aims to open minds and demystify death, dying, and grief, encouraging listeners to prepare and embrace end-of-life conversations.

00:00 Introduction to End of Life Education

00:45 Guest Introduction: Barbara Carnes

01:35 Adjusting to Life After Loss

02:56 The Importance of Being Prepared

04:18 Challenges of Living Independently

07:10 Support Systems and Grief Counseling

08:54 End of Life Doulas and Hospice Care

13:31 Medical Aid in Dying: Perspectives and Ethics

00:00 Comparing Birth and Death

25:39 Contemplating Mortality and Legacy

27:12 Current Projects and Writing

28:07 The Importance of Food at End of Life

30:28 The Family Support Bundle

33:11 The Origin of 'Gone From My Sight'

36:11 Personal Stories and Impact

40:04 The Shift Back to Home Deaths

43:48 Resources and Contact Information

46:17 Final Thoughts and Farewell

https://bkbooks.com/products/approaching-death-support-kit

https://bkbooks.com/blogs/something-to-think-about

https://www.instagram.com/barbarakarnesrn/

https://www.linkedin.com/in/barbarakarnesrn/

Transcript

Barbara: [00:00:00] That's why end of life information and education is so important so that the watcher can understand that this is labor. Labor isn't necessarily pretty, and just like labor to get into this world. We go through labor to leave it. 

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. I want to encourage you to open your mind and consider perspectives beyond what you may currently believe to be true in this episode.

I welcome back Barbara Karnes as she shares the many adjustments she's faced since her husband Jack's death after 62 years of marriage. Barbara talks about her journey from we to me, and why being prepared for the end stages of life [00:01:00] matters so much. We talk about the importance of understanding what your partner handles.

Like finances and daily responsibilities, the value of widows and widowers, learning essential life skills, and the growing role of end of life doulas in modern hospice care. Barbara also share stories from her early hospice days, her thoughts on medical aid and dying, and the creation story of her invaluable booklets, including the famous Gone For My Site, also known as the Hospice Blue Book.

Thank you for joining us for this conversation. Welcome back to the podcast. Barbara, thank you so much for coming on again today. I know it's been almost exactly two years since we talked last time, and I also know last time we talked your husband Jack had recently passed away. How are you doing? I know that's been a adjustment for you.

Barbara: It has been adjustment. We were married 62 years, and so he has been a part of my life. [00:02:00] Period. He's been a part of my life. One of the biggest challenges has been to learn how to be a me instead of a we. I've always been a we from parents to nursing school to getting married two weeks after I graduated from nursing school.

So I've always been a week. I didn't even know what bank accounts we have. And so if I hadn't had my adult children, I don't know what I would've done. And of course now you're thinking, wait a minute, teach talk before so that you know everything. And I tried. I went in several times. Please, no book in the hand.

Please tell me what, oh, not right now, Barbara. After the third time, I thought, he's not gonna tell me. I just learned how [00:03:00] valuable and how very important it is to have your ducks in a row before death comes to know everything that you need to know to live independently. There's a lot of women my age, there's a lot of men.

My age that don't know how to be a me. It's one of those 

Jill: things where I talk about it all the time with people as well. You need to get everything in place. You need to know all your advanced directives, but you also need to know the bank accounts and all that. But you're right, if my husband, God forbid, if something were to happen to him today.

There's still a lot of things that I don't know about. You know, life is just busy and it's hard to have two people involved in every single aspect we've been saying for probably two months now. We really need to sit down together with the finances and just go through all of it, and then just trying to find a pocket of time with my daughter just got on softball.

I have never been to so much [00:04:00] softball in my life. It was all day long. On the weekends. It was every night. It's intense and so we just haven't done it yet. But I think a lot of people are like you where it's the, oh no, we don't need to talk about it now. But then when the time comes to talk about it, it's too late.

We can't really talk about it. And so it is interesting too because you know, I'm sure you've met people over your years with working with hospice that you've seen them not be prepared. Has this at all shifted your perspective sometimes on other people when they're not prepared? I try not to judge other people.

There is times when you're just kind of a little bit like, all right, come on. You should know better, right? You should know better. You should have done these things. Whether we wanna think those things or not, in our head we do. Has it changed at all the way that you look at other people? 

Barbara: No, because I think part of it is just we are on our wheel every day [00:05:00] doing what we do and to step outside or off of that wheel.

To say, okay, not if, but when you need to know X, Y, Z. Nobody wants to have that talk. We keep putting it off and then when we really need the information, oftentimes is too late, and then we, the survivor have to. Put all the pieces together and figure out how to go on living with all the normal aspects that living involves.

So when there's two and you carry the load together, you really are doing each other a disservice by not sharing what you do. 

Jill: That's a good point that sometimes we think we're helping the other person. By being like, I'll just take care of this part. Don't worry about [00:06:00] it. But eventually they may have to worry about it.

Starting from scratch while you're also grieving is not always gonna be easy, and fortunately you had children that you could get help from, but not everybody does have that. That's 

Barbara: the really sad part, is that more people don't have the help than do. It's to struggle in finding a grip on how to live each day.

I remember sitting in the kitchen with a gentleman, his wife was upstairs dead, and we were waiting for the funeral home. He's crying appropriately. I've got my arm around him and he's saying, I just don't know how I'm gonna live without her. I don't know how I'm gonna live without her. I'm being very sympathetic.

And he goes. No, you don't understand. I don't know how to cook. [00:07:00] I don't know what bank accounts we have. I don't know how to wash my clothes. I don't know how I'm gonna live without her. This is why I would like to see in our bereavement support groups and grief counseling, that we have workshops on how to live as a me.

How do you go to the bank? How do you wash your clothes? We could be teaching. People how to be a me, and I don't know that we're really doing that in our grief support groups. That's a 

Jill: really interesting concept. I've never heard of any grief support groups doing that. It's more just supporting people through their emotions and their feelings, but not the logistical day-to-day.

What do you do if, especially [00:08:00] the older you are, if you lose your spouse, you know, learning how to cook, learning how to wash your clothes, learning how to do all of these things. I mean, that's not what I wanna be doing when I'm older. There's a lot of things that my husband does that I'm like, I don't feel like learning how to do these things.

I would if I had to, but there's other priorities in my life That's interesting. And maybe somebody listening will take that to heart and start up with some of these things. 

Barbara: I hope so too, 

Jill: and I know you're gonna be a guest speaker at end, well soon, right? In November. 

Barbara: Yes, I am. Awesome, Alma and Claire and I are going to have a really fun, interesting discussion.

On end of life. Yes. Looking forward to it. It's gonna be less than a month. We'll be off. Yeah. Here we come. 

Jill: Oh, it's so exciting and I love that you are pairing up For people that don't know, [00:09:00] l Arthur is another death ruler. She runs her own training. She has books. She's got a lot going on. I love that you're pairing up with a death doula because we're starting to get a little more traction.

Death doulas in. I don't wanna say popular culture, but it has to start with popular culture to get out into the masses. And I think we are starting to get more well known and people are starting to understand. The importance of working together with a death doula to help prepare for the end of life. I love that the two of you are gonna go together and talk about end of life.

If you can share any of it, like what are you gonna talk about? Are you gonna talk about how death doula is in hospice can work together? Or like what's kind of the main focus of your talk? 

Barbara: That's a big part of it. I am so open. It's kind of like ask me anything but. It will be how end of life doulas [00:10:00] can work with hospice, how they can work in the community.

I'd like to talk about the importance of being with the family. At the moment of death and hospice has left that in the background. Unfortunately, when that's the key moment, everything we do leads up to the moment of death, and then everything we do after the moment of death gradually decreases in our involvement.

But the moment of death, that sacred moment is now when most family members. And significant others are alone. And yet that's the most important moment. And yes, we can teach them before the moment. We can tell them what to do before the moment, but that's not the same as having [00:11:00] a conductor there at the hours, even days to the moment of death.

It's not the same. I. Want to see end of life doulas taking that position. When it comes to hospice, hospice can work out so that the families are not alone. Right now we have programs where no one dies alone, but the person dying doesn't really know they're alone, and it doesn't really. Make any difference that that person's alone.

What does make a difference is supporting and guiding those that are present at the time of death to help them have a meaningful, not a frightening experience. So our work and end of life is not just about the patient. It is about the family, the [00:12:00] caregivers, the significant others, and we need them there at the moment of death, and that's where end of life doulas can bring their guidance, their knowledge, their support.

Jill: Have you seen any shifts or changes in the way that hospices are viewing doulas or working with doulas? 

Barbara: I know that there are hospices out there that have doulas on the payroll. I know they also have doulas that are volunteers. Mm-hmm. How they incorporate them. I don't know because there's so many, it's so new and there's so many different ways that agencies are different.

Even though they have certification and they've got guidelines, they're still different end of life. Doulas don't really have a place yet. I [00:13:00] wanna see a place, but it's not really there yet. 

Jill: Yeah. That's been my experience as well. I haven't found, at least locally any hospices that have been willing to find that place where a doula might fit in, but that's okay.

It might eventually happen. I don't know if I would even want to work for hospice. I'm not sure. You know, I kind of am still on that path of figuring out where I best fit in, in the world of end of life care, which actually makes me. Come to a question that I wanted to ask you about medical aid and dying is legal in New Jersey.

I have recently connected with a group of doulas here that support people through medical aid and dying. I know there's a wide range of opinions on whether ethically it even is something that should be allowed. I'm curious your thoughts on it because you've been. In the hospice [00:14:00] industry for so long now, I'm sure you've seen things changing over the years, and so I'm just curious, there's no right or wrong answer to this.

I just really am curious what your beliefs and thoughts are about it. 

Barbara: Well, interesting. I was at a conference last week and met two women that are. Actively involved in voluntarily stopping eating and drinking. We had long discussions, which were really interesting. My stand is. That it's a shame that people have to spend so much money to be in control of their life, and that's kind of where medical aid in dying is, is will.

Give you access to the medications, but money is involved with Vaid. If you decide, you know, this isn't [00:15:00] how I want my life to end, I, I wanna be in control. It's not gonna cost. It doesn't require anyone's permission. You just stop eating and drinking and there's a gentle, easy way to do that end of life.

Doulas can support you with that. So I'm more in favor of where you've got control, and I believe that we should have need to have. Is as a human being, our right to have control over our lives and our bodies. If we are mentally stable and don't have some mental pathologies, let's put it that way. I don't look down on or frown on anyone that says, Hey, I wanna skip this [00:16:00] part.

I'm gonna go straight to being dead. I also have to warn that no one else can be involved. You can't ask someone to help you because they can be legally responsible. It's really something we have to take on individually in order to get it done. 

Jill: I've talked to people, especially in the past, even before I got into this work.

Where they've said, you know, like, oh, if things got bad enough, like I would just want them to kill me, basically, is what they'll say. Like, just give me all the medication or do whatever it is. I don't think people understand that you can still be arrested for murder, even if it is your spouse and even if they told you to do it, you can't do that.

It is illegal and even with medical aid and dying. As a doula or anybody else that [00:17:00] would support you through that process. We cannot give you the medication. We can mix the medication for you do some of the steps leading up to it, but we can't give it to you because they will potentially come after you.

You have to really be careful in all 

Barbara: my years of working with people who are dying. I had people that said, I'm going to kill myself. I always said to them. That's your choice, but do not ask someone to help you because you're putting that person in harm's way, not only emotionally to live with the idea and the action that you help someone special to you die.

So there's that whole emotional component, but it is illegal as you pointed out, and it's hard. To end your life, it's [00:18:00] easier to talk about it. It's really hard to do it. I can count on one hand the number of people that actually did kill themselves. It seems to be in the months before death, you get a diagnosis of a life-threatening illness.

In those months, you may be frail, you may have. Symptoms, but you're not dying. Then in those months that most of us think about suicide as dying progresses, and our body changes, our mind changes then that desire to kill yourself. Just kind of goes by the wayside in the weeks before death. It's hard to do it yourself.

You really can't. Your body is shutting down. [00:19:00] So it's in the months before death, when our mind is working that we have those thoughts of, I just wanna skip this part. Have it over with. 

Jill: That's probably fear of what it's gonna be like. You know, I think about people that I've seen, there's a loss of.

Yourself. When I think of both of my grandmothers, this was before I got into this work, when I sat with them as they were dying, watching them, especially my one grandmother who always was perfectly groomed, her hair, makeup, jewelry, clothing, that was just the way that she always carried herself. So to see her in a hospital bed wearing her diapers and thrashing around and trying to pull them off and just, it wasn't her anymore at that point.

But as a 20 something year old, seeing her like that, I was like, oh, that's not even her anymore. That to me, I think is the only part that frightens me [00:20:00] about death. It's not the death itself, but there's that loss of who we are. I don't think that even she knew what was going on at that point. But as somebody observing it, it just made me sad that she would've really been upset if she would've known that that's what was happening.

So that's probably why there's that point of like, you haven't quite tipped over to the, I don't care anymore. It's more the like, oh gosh, now I don't wanna go through this. 

Barbara: Well, and from what you talked about her, she was beyond the point of, I don't care anymore. And people don't die like they do in the movies.

Mm-hmm. And yet that's what we expect. We expect it to be nice and tidy and quiet, and the person's alert and says something special and then closes their eyes. And when that doesn't happen, we hold on to that memory [00:21:00] because that's ugly. In our mind. That's why end of life information and education is so important so that the watcher can understand that this is labor.

Labor isn't necessarily pretty and just like labor to get into this world. We go through labor to leave it. And just like coming into this world, it's not really pretty. There's sounds and sight and the mom is not in control. Her body is pushing to get that baby out. So it is, when we leave this world, it's not pretty.

And our body not. Who we are, it's our body that is working to get out, [00:22:00] to release, to let go. We tend to not understand that we associate all the movements and all the prettiness as part of that person and their personality and who they were when really. It's just the body's struggle to end. 

Jill: Yeah. And sometimes I do think back to when I had my child, both my children, but especially my first one, it doesn't feel like it was real sometimes because it was such a different experience than my everyday experience, the feelings.

And I remember the first time somebody told me that. When you have a baby, you're probably gonna poop. I was like, wait, what? Are you kidding? And she was like, no, I'm not. It was somebody I worked with when I was in college. She was older and she just had a baby and I was horrified. Yeah, when you're pushing that baby out, everything else [00:23:00] comes out too.

And it's okay. I know I've talked to people about the end of life and the same thing. A lot of times when somebody dies, their bowels will release, everything's gonna come out. And there's people that are totally horrified by that too. Like, well, I don't wanna poop myself after I die. I am like, why? At that point, why do you care?

You are gonna be dead and that's gonna be the least of your family's concerns. You know, like, so it's okay. It's just part of life and death. 

Barbara: Well, and that's where education is so important, because if we can. Understand dying and labor to me is the easiest way to understand what's happening. 'cause all of us know what it's like to have a baby to enter this world.

And so when you make the comparison, it's like, oh yeah, I get it. I see. And I mean, that's what life is. We are born, we experience and we die. [00:24:00] So how we leave is the opposite of how we come in and all these similarities. Think about food. When we have a baby, the first thing the baby gets is water and then milk.

They go to soft foods and then reach a point where they're eating everything. When we're leaving this world, it's reversed. First we stop eating regular food. Then gradually we're eating soft foods. Then we're just drinking Ensure Plus or Gatorade, and then it's water. Water is generally the last thing we take in, and then we're gone.

So many similarities between birth. And that's just reversed. Mm-hmm. 

Jill: There's a painting that I wish I actually remembered who even painted it that I always thought was interesting, where it shows a baby basically like crawling out of a [00:25:00] woman and it grows along this path, and then it like goes back in at the end, after it ages and then loops around and comes back out again.

I just always thought that was interesting as a visual of what life is like. And I think that's where even when people say they're afraid of what comes after death, I've heard somebody say before, I didn't know the difference before I was born, so I'm not gonna probably know the difference. Now. Why is it that we fear it so much?

I can't remember what was there before I was in this body. I don't know. And it doesn't bother me, so why does what comes afterwards bother me so much? 

Barbara: Yeah, I think we can't comprehend. Not being, we just can't comprehend it. For me, 

Jill: I wanna know what happens to my children, you know, like that's the biggest thing where I think to myself, one day I am gonna die and hopefully I will be much [00:26:00] older than I am today.

But I know I have no control over it. And I just wanna know what happens to my kids. I wanna know what their life is like. I wanna know if they get married, if they have children. You know, like the whole thing. I just wanna know. And I can see how that would be a really hard thing, especially if it's a younger person, if they have children.

That would be really difficult to just think to myself, like I'm just never gonna know for sure. So I guess that's why some people like the idea of. You know, we'll be rec connected to the people that have died before us or that we can look down on them from somewhere else. And again, I don't know what I believe, for sure.

Sometimes I believe anything is possible. So maybe, maybe I can hang out and watch what goes on. Or maybe it's just gonna be like what I remember from before this life, which is nothing. So maybe it will be nothing. I don't know. 

Barbara: I don't either. 

Jill: You know, we'll find out exactly. We [00:27:00] will all find out one day, and I think it's okay to not know.

I like not knowing things for sure, because then it leaves me open to thinking about a lot of possibilities, which I like. I enjoy thinking about them. So what's going on with you other than end well, are you writing new books? I'm on your email list, so I see like your blogs. I see your email. I think I see things like that.

But what's going on in your world? Anything new and exciting? 

Barbara: Well, my latest booklet was I wrote After Jack died, which is always offer never force, which is about eating. I am thinking about maybe a course question mark thinking I have worked on and still working on a book, so all you know, kinds of things.

But really day-to-day. It's writing the blogs, doing podcasts and [00:28:00] zoom meetings. That's the routine I've got at this point. All the Zoom meetings, 

Jill: I know how that is. And you were saying your newest one is always offer never force. That's about the end of life where people are not going to want to eat. And there is this idea in our culture that feeding people means we're caring for them.

This change in their wanting to eat can be so stressful to people because there's this desire to feed them to care for them. Not only are they not wanting their body knows that they don't need it anymore, so I'm glad you wrote another little booklet on that one. 

Barbara: Well, and what I think is interesting is that.

In gone from my side, I address food and the whole process said everything I think I had to say about food until Jack was dying. Food [00:29:00] was a huge issue. He wasn't eating as much as I thought he should. In the months before death, I followed my protocol, which is in Gone from my site is, is you know, offering getting every couple hours, insure plus and concentrating, and.

It was an argument and a battle every time. Hmm. One day he yelled at me, raised and pointed and said, get out, get out. And I'm in the hall and I'm crying. And I thought, I always offer never force, and it was just, it woke me up. To, even with all the knowledge that I have when it came to food that innately, if he doesn't [00:30:00] eat, he's going to die, was such a motivator.

So I thought I need to help caregivers and families understand. This to worry about and push food. I thought this is a whole thing that needs to really have attention brought to it. Mm-hmm. So that's why I wrote always offer never force. And how many booklets do you have out now? I'm gonna go with maybe 13.

The family support bundle is seven booklets that I put together. To address all end of life issues that a family and caregivers are dealing with, and that is gone from my sight, which says, here's what's, what's it looks like. Here's what's gonna happen. 11th hour [00:31:00] says, here's what you do. While all of this is happening, then there's pain at end of life.

Not everyone has pain. Disease causes pain. Dying isn't painful. It's the disease that causes pain and not everyone has pain at end of life. So that's a really important booklet. Always offer never force on the food and dementia. At end of life, dementia is more and more. Prevalent today, and it doesn't play by any rules, particularly ones that come at end of life.

There's only one clear indicator that death is going to be soon, and that involves food. If you don't eat, you can't live. And so there's a booklet for that, and [00:32:00] then the grief booklet. My friend I care, which addresses our grieving, not everything about grief, but it gets you started to understand what you're feeling and what to do about it.

So that's the family support bundle. I keep thinking, I've forgotten one oh a Time to live might be in it, and that is for the person. It has a life-threatening illness. It only works in the months from diagnosis of, I can't fix you. Death is going to happen at that point. A time to live large print, 14 pages, gentle, but it's how do you live?

Basically until you're not, so it's, that's for the patient. I would love it if doctor's offices would hand that out when they [00:33:00] say, I can't fix you. Some do not. As many as I would like. 

Jill: Well, maybe with time that will change. 'cause I know at this point now your book gone from my site. When did you write that one?

How many years has it been since that? 

Barbara: I wrote that in the early eighties, probably 80. 4 85. Let me tell you a story. I was the hospice nurse and I was on call three o'clock in the morning. I'm sitting with the family they had called, they were scared. What I learned is I, you get called at two o'clock in the morning, even if it's not a serious problem, if you as a doula or a hospice nurse.

Don't get out of bed and go to that house. You're gonna wake up in the morning and they will be in the emergency room because the family's scared. [00:34:00] And that's gonna happen. Mom was fine. She really was. I'm sitting in the living room with the family and I'm teaching them what to look for. Here's what mom's gonna do.

I noticed that one of the daughters was taking notes. I thought, oh, she shouldn't have to be taking notes that weekend. And this is before computers, you know. I sat with the legal pad, yellow legal pad on my sofa, and I wrote what I wanted families to know, and then I typed it up and I thought, this is so cold and impersonal handing this sheet of paper.

So I wrote, gone from my site, and I purposely made it gentle and large, print and short. I took it to my director and said, I'm so excited. I wrote this and I [00:35:00] want you to make this into a booklet and we'll give it to our patients. He read it and he said, no, I'm not gonna do that. And I said, well, I'll do it.

And he said, you can do anything you want to. I want nothing to do with it. I said, little red hand. Okay, I'll do it myself. I printed it and I handed it out and probably six months later I came home from work and my husband says, you're not gonna believe what happened. A hospice in Minnesota. Sent the order form at the back of Gone from my site and they want 50 copies.

And the same day a hospice from California did the same thing. Now how they got the booklets, I have no idea. But that's the start. 

Jill: And now almost every hospice, I think, gives that booklet [00:36:00] out, what 

Barbara: 30 million copies or something have been out there and. Everyone in end of life knows gone from my side.

Jill: Yeah, it is a great book. In January, I had a friend who, we went to a meditation center together in Philadelphia. He knew he was nearing the end of life. He had been a nurse, so he was like, I know they already told me as well. I'm on hospice. We got together a group of people to help him 'cause he was alone.

He had nobody to help him. At the end, I checked in on him every day. Towards the end, it got to the point where every day I was checking in on him. And finally the one day I checked in, he was just not doing well. I was like, do you want me to come spend the night? And he was like, I think I do. Like, I think it's time and.

Again, even being in this work, there was still part of me that was like, oh my gosh, I'm gonna go spend the night at his apartment. He might die. I don't know what I'm walking into. And I walked in and he had told me he [00:37:00] had had the door unlocked. He didn't respond. He was in his room. I knocked on his door.

He didn't respond, so I made sure he was still alive, but he was deep asleep. I thought, okay, I'm just gonna get myself settled for the night. I start putting all my stuff out and I see all his paperwork and right on top of it was your book from his hospice company. They'd left it there. I sat down and I read the book again, and even knowing the information, there was something about reading that book that.

Just made me calm and slow down and be in the moment, and we got him through a period of about two weeks that were a little rough. He lived for a couple more months and died recently. His neighbor put together a stack of books for me that she thought I might like. In that stack of books was your book.

She made sure that I had it. So now I have David's copy of your book, which is special to me. I love it. Seeing that your book is just. Everywhere now with [00:38:00] families and so many people that I've talked to have said that book was so helpful to me when my dad was dying or when somebody else was dying. It's amazing how you have really changed the culture of dying in America, at least probably elsewhere.

'cause I'm sure there's other countries that people still read your book and so that's beautiful. It's just so amazing. You've had such an impact on making it a little easier for us. To go through somebody's death. 

Barbara: Knowledge reduces fear, and we're all gonna be afraid. We're gonna be afraid when it comes time to die, and we're going to be afraid when someone close to us is going to die and knowledge reduces.

Not all of it, but some of the fear. 

Jill: Because I don't think it ever is often as bad as we fear it's going to be. 'cause our minds can get real creative, right? We start thinking through scenarios. We can get [00:39:00] really creative with things and a lot of times it is weird with death though. 'cause like you said, it's not like it is in movies, which I think is what of a lot of us picture also, we tend to picture it as being worse than it actually.

Can be in a lot of cases. You know, my friend David, when he died, I was not there. His neighbor was there and during the couple of weeks when I was there with her a lot visiting David, she would come in all the time. We just talked a lot about what was gonna happen, what was going on. When she texted me and she was like, I think it's time.

And I was like, well, do you need me to come? And she was like, no, I think I'm okay. Afterwards. She said it really did help her. Feel prepared because we talked so much about it leading up to it, that education really eased the fears so that she was able to be there and sit with 'em. And like you said, he probably at that point didn't [00:40:00] know the difference.

We also don't want anybody to die alone if it's possible. 

Barbara: Grandma used to live at home and she died in the upstairs bedroom. And we were there and it was not a medical event. It was natural, and we were there. Our society shifted to the point where hospitals became a big deal. You went to the hospital and you died in the room at the end of the hall, and no one was there.

You were alone, but you were in a hospital. That's where you went to die, and then you went to nursing facilities, and again, you were at the end of the hall alone. We're coming full circle now in that we're coming back to people dying at home with their [00:41:00] family and loved ones surrounding them. Grandma always.

Wanted to be at home with the family. It's just that it's taken us years to evolve back to that point, and I'm so glad that we have, but. When grandma died at home, it was all natural. I mean, we didn't think anything pathological was happening. 'cause we saw it when Aunt Bertha died. We saw it, you know, we saw it and we took it for granted.

I guess this is how people died. But then we had this big space where we weren't there. We had the movies, we weren't there. And now we're coming back and we have to cancel and erase all the, it's supposed to be like in the movies. 

Jill: We have to [00:42:00] unlearn and relearn. You're right that in the past when people died at home, it, the children were there, like everybody was there.

And so it never got to that point when it was your turn to be the person caring for your parent or your spouse. You had already seen it a couple times and now it is just so foreign to people. I mean, I think of how many people have never been around a loved one when they've died. Possibly even after having a loved one die as an adult.

They just still weren't there. And so, yeah, I can see why that would be a little. Overwhelming, but that's why there is support. I mean, hospice is great for that. Death doulas, that's what we do, is help support you through it so that you don't have to go through it alone. But I feel that it's important. You know, I was with my aunt about a year and a half ago, and when she died.

It felt like a gift that I could give her to be with her in those last couple of [00:43:00] hours, even though she probably didn't know. But even earlier that day, I had been there and I think she knew that I was there. I know she knew I was there Then. She was by herself in a hospital and I just didn't want her to be by herself.

So I said to the hospital, please call me so that I can make sure I'm there. I was doing a podcast interview on somebody else's podcast when I got the call and I was like, oh, I gotta go. I'm sorry. Hate to interrupt, but I have to run. It helped me begin my grieving process of. Being with her in that moment.

I had to slow down. I had to be fully present. And while I was there, I was able to begin that process of, yeah, she's really gone now and life will keep going. But it's also sad 'cause I do still miss her because that's what happens when people die. We are getting close to our time to wrap it up. You mentioned you have your books, you have your bundles of the booklets.

Hospices do give out at least one of them. Some hospices probably do [00:44:00] give out more than just the one main one. If people wanted to purchase them, where can they find you? I know you're on Instagram as well. Do you use any other social media? I know you do send out emails, so where can people find you and more about you?

Barbara: LinkedIn. We're also on LinkedIn. Go to the website, bk books.com. It's comprehensive. It's got stuff about me. It's got all of my materials, it's got all the blogs that I've written so you can go to search and put in food and all the blogs that evolved around food will come forward or sleep or whatever it is that.

You are wondering about. So the website is a great place to go. I'll put links 

Jill: to all of that. And with all your blogs alone, you could probably write a whole book just out of taking all your blogs and putting them together into a book. And I'm [00:45:00] gonna keep an eye out for when you get your book done, is it like a memoir or just some hints of what it would be?

Barbara: It's stories about different deaths that I attended. And what I learned from them, I'm gonna call it Meet my teachers because my patients and their families taught me everything I know about end of life. There's a little bit about me, a little bit about Elizabeth Kubler Ross, but it's mainly about the patients that I served and cared for and what I learned from them.

I like that you used 

Jill: the word served because this is service and I come from food service originally, so service is a big part of my background. It feels like this work is in service to others. It's definitely not about me, it's not about my experience, [00:46:00] it's just about helping people have a better experience around the end of life as best as we can.

I don't think it has to be as bad and as scary as. We think it's going to be, it's in service to others. So I love that you used that word. That's a good word for it. Alright, well thank you so much again, Barbara. It is genuinely an honor to have you on 'cause I'm sure people listening know and. I don't remember if I told you last time when I got done the call, I had told my 11-year-old daughter now, she probably was like nine then, um, that I got to talk to you.

And I was like, so excited. And I was like, imagine talking to your favorite YouTuber. I was like, that's what I feel like. And then she was like, oh, okay. That is a big deal. So, so thank you. I really appreciate it. 

Barbara: Well, now we'll have to get back together again. A couple of years. We'll touch base again or sooner.

It's been a delight and it's good to see you again, and like I said, I [00:47:00] hope we see each other again. 

Jill: I would love that. Thank you. Bye. 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 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. 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. Thank you and I look forward to seeing you in next week's episode of Seeing Death Clearly.