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Barbara Karnes on What She’s Learned in the ‘School of Grief’

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Barbara Karnes, RN, is considered by many to be the “godmother” of hospice, having written the popular and accessible hospice education book for families, “Gone From My Sight” back in 1985. The little blue book has sold more than 35 million copies worldwide and continues to be a resource for understanding the dying process. After writing dozens of other similar books, Karnes is now an internationally respected speaker, educator, author, and thought leader on matters of end-of-life and a renowned authority on the dying process.

But Karnes experienced her own loss in September of 2023 with the death of her husband of 63 years, Jack Karnes, who was 89. He had been diagnosed with lung cancer in May and was gone by September. She talked with us from her home in Vancouver, Washington, to share her experience because, as she says, “I figure even with all my end-of-life knowledge, if I’m experiencing this, then so is everyone else. And everyone else might not know that this is normal and that this is part of living. So I want to give people permission by just looking at my example. This is all sorting out life.”

Tulip: You’ve described grief as school. What have you been learning?

BK: “I think all of life is school, that it is all about learning and that’s the experiences that come forward. Intellectually, I thought and taught grief. I knew grief — until I started grieving. Grieving for a husband was different than grieving for parents. I didn’t know that either until I started walking in those shoes. The key that I think I learned is that there’s a component beyond the intellectual, a component beyond the emotional. You have to learn how to be a “me” instead of a “we,” and I never thought about that before. I went from parents to nursing school with a really tough House Mother to being married two weeks after I got out of school. I never was a “me” I was always a “we.” And then Jack died (and yes, I have children, but it’s not the same), I had to learn how to think about myself and ‘what do I want?’ not ‘what do we want?’ I didn’t know how much money was in the bank, I didn’t know how to pay the bills, because for more than 60 years, he did it and that’s a long time.”

Tulip: What did you already know about grief and dying that helped you through this process?

BK: “I knew how to be the conductor of this experience. I knew all the right things, but emotionally, I didn’t want to see the decline. I didn’t want to see what I knew. When I thought he had months, despite all my knowledge, he really in hindsight had only weeks. And when I thought he had weeks, he had only days. And at just hours, my awareness finally kicked in, and I knew what was happening. But I didn’t want to see, I wanted him to make it to Christmas and in my head, that was the goal, and in my mind, (I thought), ‘If he’d just eat, he’d make it to Christmas,’ which is what every caregiver thinks. It gave me a wider view of end of life from just the intellectual ‘this is what’s going to happen.’ When it is personal, you can’t necessarily be objective. When it’s personal, all of our baggage, all of our stuff, clouds the objectivity. That’s normal, it happens.” 

Tulip: How did your experience change your relationship with hospice?

BK: “When I called hospice in, I thought he had months. Hospice comes in and gets started and while the primary care nurse didn’t say so, I can look back and realize she knew he only had a week or so. And she knew when Jack only had days left before I could see it, because I didn’t want to see it. And when you don’t want to see something, you don’t. So, she was the support and guide, which is what hospice does for everyone. That’s the job, to guide and educate and support families and I was on the receiving end. I understand better now how family caregivers don’t want to see what’s really in front of them.”

Barbara and Jack

Were there times like holidays, anniversaries or birthdays that were particularly difficult?

BK: “Yesterday was Jack’s birthday. We as a family talked about him. But it wasn’t heavy, heavy. In these past six or seven months, we’ve adapted to life without him. One of the things I talk about in discussing grief is that grief is like a big wound and it can be big and gaping, but gradually, that wound will heal and a scar will form over it. But I’ve got an actual scar on my leg that I got when I was 12, and when I touch that scar, it feels different than the rest of my body. That’s what grief is. Right now, my wound is healing over. I will always have something that touches the scar, the wound, but it isn’t open and gaping like it was at first. Yes, his birthday touched the scar and we talked about it. At Christmas, we gave a toast to him and talked about him at the dinner table. We included him in our holidays. He’s in our hearts and we’re not afraid to talk about him. Grief does have a process to it.”

Tulip: What advice do you have for preparing for the end of life, especially as a couple?

BK: “An Advanced Directive and a Durable Power of Attorney are two forms that we all need to have, particularly the elderly, but from the age of 18 on because if you don’t have an Advanced Directive and a Durable Power of Attorney, you will die the way someone else wants you to. This is your voice when you cannot speak for yourself. We’ve had these forms for years, but after his diagnosis, I took my yellow legal pad and went into the office and sat down and said, ‘We’ve got to talk. I want you to tell me what bank accounts we have. What do I need to know business-wise, finance-wise, when you are not here? And his answer was, ‘Oh Barbara, not now. I can’t do it now.’ … I do believe a lot of us who have been married a long time, we divide up jobs and don’t necessarily teach the other one our job.” Karnes says she tried twice to approach Jack to get this information and eventually realized he would never be able to do it. Thankfully, her son was able to help her. Karnes says she didn’t know anything about taxes, insurance, car documents or passwords. She encourages everyone to have these conversations early.

Tulip: Can you share with us how you grappled with negative memories?

“The minute someone dies, they are elevated to sainthood, and suddenly they are just perfect. Other people are only going to talk to you about the positive. When Jack died, all I could think about was the challenges we had. All I could think about was the negative I had felt about him. And then I felt guilty and ashamed. I was not going to tell anyone that what I was remembering about Jack and playing over in my mind was all this negative stuff. I’m open about this because I don’t think I’m the only one that experiences this, so by sharing, I want others to see that it is OK and it is normal.

Months later, I realized I was ‘cleaning house,’ so to speak. I was processing all the challenges so that now, I can remember and talk about the fun times, the good times. But I was being unconsciously realistic. I wasn’t playing the game of ‘he was this perfect, marvelous husband and man.’ Life isn’t perfect, personalities aren’t perfect and relationships are not perfect. I think it’s healthy to be able to look at and think of the downside and challenges of a relationship, and the challenges in a personality, and recognize it in our own space and find a place for it. It’s kind of like cleaning house so that you can then see all the good stuff.”

What’s next on the horizon for Barbara Karnes?

“I wrote a new booklet called ‘Always Offer, Never Force’ and it’s about food and it will be coming out soon. When Jack was dying, I had a big issue with food, and I know better. And yet, if my husband didn’t eat, (I felt) he was going to die. And so, I did what every caregiver does, which is try to push food, and I knew better, but I didn’t want to see it. 

I’ve been doing a lot of Zoom meetings and I’m learning how to entertain myself with things like ‘Pajama Sunday’ and ‘Paint-by-Numbers Sunday’ (in which friends come over and paint and eat together). I watch the TV shows that I want to watch. As a couple, the two of us would pick what we were going to watch. Now, I can decide I want to watch ‘Miss Scarlett’, and I want to watch it now. It’s really been an interesting life course. I look at life as school and I took the “course” of being in a relationship. My new course is learning how to be a ‘me’ and that’s exciting. I really am excited about that. This is a new life adventure.”

Karnes shared that she’s also been enjoying caring for her 10-year-old cat, Baxter, and that she can’t imagine where she’d be today without her supportive family and friends. You can learn more about Karnes and her work on her website.