This podcast is personal, and I thank Barbara Karnes for her candid sharing of what the first year has been like after the death of her long-time husband, Jack. She reflects on her experience of caregiving and talks openly about what she has learned through this year of grieving. What I see is that Barbara lives her truth: “Because I work in the end of life, I’ve learned this: do and say what you want to do and say today. Because you never know what tomorrow’s going to bring.”

www.bkbooks.com

Transcript:

Diane Hullet: Hi, I’m Diane Hullett, and you’re listening to the Best Life, Best Death podcast. And today I’m talking again with Barbara Karnes, a real pioneer in the end of life field and an educator for many years, hospice nurse. Welcome, Barbara. 

Barbara Karnes: Well, thank you for having me again, it’s always good to get back together and the two of us talk.

So, you know, 

Diane Hullet: it’s so fun because I feel like you and I had a podcast maybe two years ago now, two and a half years ago, even, and since then, podcasts have kind of exploded in this field and I think you’ve done a lot more. But we were kind of early on saying, well, how do we do this podcast thing together?

It was really a great, great experience. It was. 

Barbara Karnes: I enjoyed it and learned a lot. We both learned a lot. 

Diane Hullet: Yeah. Yeah. Constantly with this work. Well, I thought it would be interesting. I’m talking to Barbara here in September of 2024. And the last year has been huge for Barbara and her beloved husband, partner Jack died a year ago.

And I’ve been so moved by everything, Barbara, that you’ve written about that and put out in other podcasts and videos about how different the actual experience was given all your knowledge and all your information. There was still so much to learn and be confronted with in your own experience of the loss of a longtime partner.

So I’d love to just kind of open that up for your reflections on what this year has been like. 

Barbara Karnes: I’m game. Let’s do it. We’ll we’ll cover that territory, which has been kind of virgin territory for me. One of the things You know, I intellectually felt and had studied and observed grief, but I had not emotionally had to deal with the emotional grief of a partner.

You know, it’s different For the grief of a parent, the grief of a child, the grief of a partner. And I didn’t really realize that each one had its own uniqueness to it. So that was a big 

Diane Hullet: lesson. Big lesson, big lesson, and I know you said even as Jack was nearing the end of his life, you kind of looked back on it and thought, how did I, how did I miss the signs?

How did I miss food being a thing that you knew not to push food and yet you found yourself loving him by offering food and wanting, you know, wanting to see him eat. 

Barbara Karnes: Well, one, I think the key change moment for me, turning point, was I had four, since his diagnosis, I was pushing food because I knew that’s how to keep him alive.

This is probably two to three weeks before he died. We had this big confrontation. He’s in bed. I brought in the food. He’s not eating. He’s getting mad because I’m, and I’m getting frustrated. And he raises his hand and he points to the door. And it’s like, get out. And I walked out of the room, and I’m standing in the hall crying.

And I thought, I am trying to keep this man alive by the food. And his body is trying to die. By the food and that was the the aha moment when I offered but didn’t force and I realized the significant and the power that’s in that. And the. The hurdle for a caregiver. 

Diane Hullet: Oh, I’m so moved by you phrasing it like that.

The hurdle for the caregiver, because it’s like, you had to understand that differentiation that you had kind of two different agendas, your mind and heart and his body had two different agendas and he was trying to not, not consciously, but his body was saying, this is the end. And you were pushing against that.

And I think. Saying that that’s a hurdle for the caregivers is such a huge understatement. It’s just, it’s the biggest thing to make that shift to saying we’re in a different place now. Oh, well, 

Barbara Karnes: that realization is what led to once Jack died and I was back in the work routine, writing my newest book lit always offer, never forced because I realized how significant and how important understanding eating and not eating at end of life is and it took me to walk in those shoes to really appreciate the significance of what the caregiver is dealing with.

Diane Hullet: Say a little bit more about that. What, what did you find was the significance and I’m, and I’m thrilled that there’s a booklet about this and we’ll get into that. But just to say for listeners, Barbara’s got a marvelous series of small educational books and we’ll tell you how to find them at the end. So you’re, tell me your question again.

Well, say more a little about the significance for the caregiver. 

Barbara Karnes: Well, I will say it’s not just revolving around food, you know, I realized how lost and left out how invisible caregivers are, that all the attention goes to the person that’s dying and all of the work. It’s on the caregiver and add to all that work is the emotional turmoil, the emotional hurt of knowing that, you know, this is the last act this, this is our last time together and as a caregiver.

I’m uptight, I’m nervous, I’m scared, I’m mad sometimes, I’m tired. And all of those emotions the caregiver carries. And I didn’t really realize that till they were on my shoulders. Yeah. 

Diane Hullet: And you, you and your husband were together a long time. Tell us a little about that. Well 

Barbara Karnes: 65 years, we had known each other.

We’ve been had. I still say we we were married 63 years and the background of that I smile when I think about it because I was a senior in high school, only he didn’t know it. I was in a dance hall. 18 years old, actually 17. I turned 18 two weeks after I met him. So I’m in a dance hall where they serve liquor and he comes in after selling a house, because he was in real estate.

He was 24 and He assumed, and I let him assume, that I was a nurse. Actually, I was a nurse’s aide and worked on weekends. So it was, we dated every Friday night, with him thinking I’m 24, for about five months. And I got my high school graduation ring, forgot to take it off, and we’re out to dinner and he says, Oh, what is that ring?

And I, Oh my God, I’m busted. And I said, well, it’s my high school ring. Ring and he said, well, let me see it. And then his eyes got really big and he said, 1959, that’s now, how old are you? By then he was hooked and the rest is, so, you know, we dated till I graduated from nursing school. But that’s how we got started.

Diane Hullet: What a great story. Just kind of a lot of chemistry right there in the dance hall. And you thought, age, that shouldn’t be a big factor. I’m not going to point it out. 

Barbara Karnes: No problem. We’ll just. 

Diane Hullet: Yeah, yeah, I love it. So a lot of years later, a lot of water under the bridge to then come to this final transition place together.

It’s just, I remember one thing you wrote about it at one point was kind of the surprise of the loneliness of it, of this past year, you know, that you just. You had 60 plus years of waking up and talking to somebody else, making breakfast together, sharing coffee, looking at the newspaper, talking about the news, going to bed at night and reflecting on the day.

And that’s just such a big, big change that I don’t know how much people talk about. 

Barbara Karnes: I certainly did not realize the significance of it. And, and I don’t think it’s talked about very much. Unless you’ve been in those shoes, and then you really realize, you know for 65 years, basically, we were a we. And then this last year I have become a me and I don’t know how to be a me i’ve had to learn what?

To do what I want to do because it was always we would consider each other 24 7 that’s just how it was for 65 years and I didn’t realize that in grief that probably the biggest challenge in my grieving has to learn how to be a me. And you know, I talk about advanced directives and I talk about learning the, the role that the other person plays.

And I tried to get information. But he would say, Oh, not now, Barbara. I, I don’t want to talk about the banks or I don’t want to, not now. So I tried twice and the and then I thought, no, he’s not going to do it. So I had to learn to do his jobs. Okay. Which I’ve never done. And that is, I didn’t even know what banks, what bank accounts we had, what charge, what credit cards he had. 

And so that was another whole Learning experience for me, which is huge, but the consistent daily ones right now I’m dealing with. What do I want for dinner? Because there’s a lot of difference between cooking for 2 or 1 and and that’s what I’m trying to figure out now is, you know, What do I want for dinner and you go to the store and you end up with more food than you want because I’m used to buying, you know, a certain amount.

Who knew one one night I was on a death call. This is years and years and years ago. Wife’s upstairs dead. We’re in the kitchen. And we’re waiting for the funeral home to come pick her up and I we’re sitting at the kitchen table and I’m beside him and he’s crying appropriately and he keeps saying, I don’t know how I’m going to live without her.

I don’t know as he’s crying and I’m I’ve got my arm around him and yeah, yeah, and he looks at me and he yells. You don’t understand. I don’t know how I’m going to live without her. I don’t know how to cook. I don’t know how to do my laundry. I don’t know how much money’s in the bank. And I remember that, obviously, but it didn’t make as big an impression on me as it does now.

Diane Hullet: What a story. I think it’s a reminder to all of us, these, these pieces, because I think often in relationships, we kind of divide and conquer. You know, I, I was joking around. I never thought I’d have such a traditional marriage. You know, my husband’s like, let me get the hammer and hang that picture. And I’m like, I’ll cook dinner tonight.

Like, I just didn’t expect those kind of typical gender roles, but. That’s what we have, you know, in a 35 year marriage, and I don’t see it changing. So, there’s something about how do you share ahead of time some of what’s in your territory, so that the other person kind of knows. And I remember when our second daughter arrived, I remember making a list for him of all the things I did.

And I said, you know, in case I’m gone, FYI, this is the kind of thing I do around a birthday party when the kids have to go to someone else’s party. You gotta get a gift and you gotta make a card and you can have it wrapped at the store. I mean, that sounds like a funny detail, but I remember writing almost like a job description for myself.

Like, this is what I do for the two kids. So if I’m hit by the donkey cart, you’ve got a place to start of, you know, the person you’re going to have to find to replace me. And You know, it was, it was lighthearted, but it was also somewhat serious kind of in the vein of what you’re saying. Like we don’t always know all the things our partner does.

And some years ago, we decided to write down all of our banks, various, whatever miscellaneous accounts with their phone number and the account number and put that in a safe place because we thought, well, if something happens to both of us, nobody would know. And so then we told my brother where to find that.

You know, so I’m still not sure that’s enough people. Now all my listeners know that information is out there. But like, how do you share that so that it isn’t a giant scavenger hunt and not the fun kind when somebody dies? 

Barbara Karnes: Oh, absolutely. And when life is going well with no I don’t want to say problems because life is problems, but when all is going smoothly is the time to do it to make and to make those lists and get all the information because when you need it, you’re too sensitive.

You’re too vulnerable. You hurt too much. And so it’s like, ah, no, I, I can’t do that now. And so when you don’t need to do it is the time, have it, then put it away and tell someone else where it is. I think 

Diane Hullet: so. I think so too. It makes me, reminds me also my mother in law was very organized and she always had in her purse what medications she and her husband took.

And when I first thought, saw that, I thought, well, that’s kind of, you know, that seems a little over the top, But I tell you what, a couple of times they would go into the hospital for one reason or another, and we had that list of medications right at our fingertips. Very helpful. Nobody had to remember or go back to the house.

We just knew. And you know, with the medical system is convoluted as it is, you can’t always count on your Doctor having transferred that information to the hospital you show up in. So those are just a few things. Well, I, I just think, you know, people talk about that first year of losing someone being so, so difficult.

And I don’t know, Barbara, what, what did you find as you sit here at the precipice of year two? 

Barbara Karnes: I will say the things that surprised me that I didn’t expect. One was that in my grieving in the early months, and I’m saying months, I kept, what kept surfacing was not the good times. It was the challenging times that it was like I had to process through cleaning house, so to speak.

And to do that, I had to get rid of the dirt. And at first I thought, oh, Barbara. You’re a bad person. All you can think about is the negative stuff. But after a few months, literally months, I realized what was happening and that I’m not a bad person that I’m a normal person. And because most of us When someone dies, we immediately elevate that person to sainthood.

And all of a sudden we don’t even think about the negatives, the challenges, it’s they were wonderful. And so when I wasn’t thinking that, I was thinking something’s wrong with me. But I realize from writing a blog about that and getting all these responses of oh my gosh i’m so glad you said this because i thought i was a bad person too that by cleaning the house so to speak allowed me no helped me see all the good stuff because i cleaned out the challenging stuff and that was a new aspect of grieving for me 

Diane Hullet: That’s huge.

That’s, that is really different than what we think. Like you said, we sometimes think, oh, put them on a pedestal. But I think when you’ve lived with someone a long time, maybe the pedestal is already kind of, you know, cracked a bit, if you will, right? 

Barbara Karnes: Being in a relationship is hard work. I mean, it’s, You can love someone with everything you’ve got, but you’ve got two different personalities.

And so living together is a challenge and you both have to give and take. That’s relationships. So there is no perfect relationship. There is no everything was wonderful, but when someone dies, We think, oh, you know, I shouldn’t think about the hard times or the challenging or the times I was so mad at him I didn’t speak to him for two days.

You know, we don’t want to look at that. 

Diane Hullet: Speaking of speaking, I mean, this is a vulnerable question, but do you feel like you said everything you wanted to say? 

Barbara Karnes: Yes, I think so. Because. I work in the end of life. I’ve learned from this to do and say what you want to do and say. today because you never know what tomorrow’s going to bring.

And I think in our relationship there was that currentness. I’m not happy with this or I am. I love this. I also, because of the pre, how fragile and precarious life is, not only with Jack, but with My children and grandchildren, I never let them leave without saying goodbye and I love you. Saying I love you is so important and, and you need to do that all the time.

Not just as end of life approaches. So cause you never know when they leave the house. So you want to say, I love you. 

Diane Hullet: This piece about staying current. That’s such a good way to put it. Stay, stay current with your friendships. Stay current with your partner so that things are on the table. Things are said.

And so there isn’t regret if something sudden happens, that’s huge. I’ve also been reading more recently, you know, some people say that the second year is really hard. The second year of grief in a different way, you know, I think the first year has the anniversaries, the first birthday, the first holiday that’s important without them, the first anniversary of their birth, your relationship, their death, all those things.

And then the second year, I think has a different quality. And one thing I read recently from a widow said. I didn’t want to know how difficult the second year would be, because the first year was so unbearable. I thought, how could the second year possibly be worse? I, I can’t even get through this. What, what’s your thought on first year, second year?

I mean, these are kind of arbitrary, but interesting. 

Barbara Karnes: The first year, everyone is responsive to you. They’re looking at you, they’re supporting you. The first Christmas, the first everything. You have all the support of the special people around you. The second year, Most of that support you’ve had have gone on with their lives.

They’ve gotten back to their normal routine, and you don’t have the support that you had for the first year. You still got the feelings, you’re still learning how to be a me. You know, you’re still missing your person, but most people around you, it’s like, yeah, yeah, you know you’re overreacting or you’re, you know, it’s almost a guilt feeling that comes on the griever because everyone else It’s moving on.

It’s like, well, they expect me to, and I can’t. 

Diane Hullet: Right. Interesting. I also wonder, it’s, it’s like, I, I’ve heard people describe grief as being like a wave that just knocks you down. And sometimes you see it coming and you know, something is going to have that charge and wipe you off your feet. And other times you just don’t even know you catch a, a sign of something or somebody says something, or you read something somewhere and, and you’re overcome.

And so I wonder if there’s kind of almost this expectation that we’ve set up for ourselves that somehow in the second year that shouldn’t still be true. And yet it is. 

Barbara Karnes: Oh, and it will always be there. I like your description of a wave because at first in our grieving, our special person is in our mind, All the time, and then, oh, in a couple of months, or, you know, a while you go out to lunch with a friend and you come home and you say, oh, I didn’t think about him the whole afternoon.

And that space between thinking and feeling your special person over time stretches and stretches and stretches. 20 years later, You can be in the grocery store and stand in front of the oatmeal and burst into tears because he ate oatmeal every single morning. Something touched the scar that grief is.

At first, grief is an open, gaping wound, and then gradually it heals over. But the scar is always there. And I’ve got a scar on my leg that I got when I was like 12. And if I touch that scar today, it feels different than the rest of me. It will never go back to feeling like it did when I was 11. And that’s grief.

Grief is like that too. You, heals over but the scar will always be there and something will touch it and you’ll feel the pain and you’ll cry or you’ll whatever you do when you feel. 

Diane Hullet: Oh, I just, I appreciate talking to you so much, Barbara, and here, you know, very close to the one year anniversary of, of losing the person most important, most dear to your heart.

I appreciate these reflections and your honesty about what this experience has been like for you. Thanks so much for talking today. 

Barbara Karnes: Oh, well, you’re welcome. And you know, my premise is my belief is that I’m no different than anyone else. And if I feel these things and don’t understand them, then so does a lot of other people.

So by my sharing, we can see how normal and natural grieving is. 

Diane Hullet: So true. You can find out all about Barbara and order her wonderful, wonderful, very informative books, booklets, I like that you call them that. They’re slim volumes, they’re very accessible in a time of grief or a time of needing education about end of life.

You can find out everything at bkbooks.com. BK books.com and as always, you can find out about the work I do at Best Life. Best death.com. Thanks for listening.