What it’s like to write about COVID-19 while it’s killing your mom [PODCAST]

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“My mom was beyond vulnerable to the virus. May of 2020 marked two years since she’d become a nursing home resident—receiving care for several chronic illnesses. She died of failure to thrive due to Coronavirus 2019 on June 1, 2020, at the age of 75.

As her oldest child, her health care proxy, and a health care writer for more than 15 years, I knew that a positive result in a long-term care facility was statistically almost sure to end one way. She’d already been showing signs of global decline for months, and had a DNR order in place.

Professionally, I’d been immersed in COVID almost from the time it began. I was writing articles about physicians’ liability exposure during the crisis and how clinicians could seek resources for help coping with trauma related to the pandemic.

Personally, I was connecting with my mom the best I could (asynchronous videos, cards in the mail). I was defending her final wishes. And I was preparing mentally to say goodbye, even if it couldn’t be in person.”

Debra A. Shute is a journalist.

She shares her story and discusses her KevinMD article, “What it’s like to write about COVID-19 while it’s killing your mom.”

This episode is sponsored by The Nuance Dragon Ambient eXperience (DAX). The Nuance DAX solution makes it possible to forget the tech-toggling and reduces documentation burdens no matter how or where care is being provided. (www.kevinmd.com/nuancedax)

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Hosted by Kevin Pho, MD, The Podcast by KevinMD shares the stories of the many who intersect with our health care system but are rarely heard from.

Transcript

Kevin Pho: Hi, and welcome to the show, where we share the stories of the many who intersect with our health care system but are rarely heard from. My name is Kevin Pho, founder and editor of KevinMD. Today on the show, we have Debra Shute. She’s a writer, and she wrote a pair of KevinMD articles: the first, “What it’s like to write about COVID-19 while it’s killing your mom,” and second, “Writing tips for physicians from a health care editor.” Debra, welcome to the show.

Debra A. Shute: Thank you, Kevin. It’s really nice to talk to you after viewing you as a source for so long. I didn’t expect to be on this end of the interview.

Kevin Pho: Well, we’re happy to have you here, and we’ll get into your articles in a little bit. But first off, can you share your story and your journey to where you are today?

Debra A. Shute: Sure. If we want to begin in the beginning of my career, in the late ’90s I began college as a nursing major for a lot of well-intentioned reasons. I was not aware at the time that I was suffering from an anxiety disorder. Once the first clinical rotation came around, it made it very difficult. I was afraid of my own shadow in those weeks, and I ultimately changed my major to English at the end of my sophomore year, which didn’t make my parents quite as comfortable as the nursing degree would have, but it turned out to be the right move.

Kevin Pho: Now, as a freelance health care writer, are there a lot of opportunities to write that are currently available?

Debra A. Shute: Everything has kind of shifted to COVID right now. I think I’m in a place where, especially after my mother died, I was just so deep in the grief process. As a freelancer, having the option to not have to accept every assignment that came my way, with everything, I did kind of have the luxury and the ability to step away and heal and help my family heal.

The first one that I wrote, about saying goodbye to my mom when she was suffering with COVID, started out as just a very candid Facebook post to my closer friends and family, and it resonated like nothing I had ever written for publication or anything else. Their response was just so deep and so direct and profound, and I thought to myself, “I have to do something with this. I don’t know what, but this is special for some reason.” This is a story that people don’t understand, I think, especially with the disease and people’s age, and people are talking about, “Oh, well, just protect the older people, and the rest of us should be fine,” and not understanding the nuances of how older people need help even if they’re still in their own home.

Kevin Pho: Share a little bit more about that story for those who may not have read that article.

Debra A. Shute: Sure. I think that the language was more direct than I would probably use. I think I was in kind of a hard and very raw place at the time. But I talked about how I, for the most part, understood that we didn’t have a lot of time left, and that it just didn’t look good in that setting. I live very close to the Holyoke Soldiers’ Home, so that national horror story was in my backyard. That news came out slightly before they had started reporting positive test results in my mom’s nursing home.

I think when you have a parent in a nursing home, getting them there is very hard, coming to terms with that. But at least once they’re there, I think you don’t expect a very dramatic end. I think I kind of pictured that it would be a gradual process, and we would kind of know what was happening and be prepared and be able to be with her and surround her, and everybody would have a chance to say goodbye. From the time I was young and my grandparents passed, that was something we could take for granted.

When I found us in this situation, when I knew she had just a lot of vulnerabilities, just every high-risk category, unfortunately, we were already there. So in terms of saying goodbye, I wanted to talk about how it is, one, to try to communicate with someone who’s only semi-lucid, and to not be able to have that expected closure. At the time she got sick, I think it was March, March-ish, public information was still all over the place: Wear a mask, don’t wear a mask.

Kevin Pho: So what’s something that you’ve learned from that experience that you could share with some of the other families who may be going through similar experiences?

Debra A. Shute: Find someone in your corner. I had a very good mentor, a director of nursing who had introduced me to the building the first day I brought my mom to the home, and he remained kind of my main guy. We had our inside jokes. He’d talk about her health in terms of how much she yelled at them that day, kind of, by the end. That was extremely helpful.

Aging parents is very difficult to begin with. It’s not like this started with COVID. It started eight years prior, when she suffered a stroke and had some comebacks that really surprised us. We thought she’d be a lot more disabled than she was, and she got up and she went back to work. But then things got hard again, and we had to coax away some of her independence, which was very hard on everybody.

Kevin Pho: And you mentioned that the response to your story was so powerful. Can you share some examples of some of the responses that you received?

Debra A. Shute: It was gratitude, particularly from people who had lost a parent, especially recently, I think especially a mother. There was so much I didn’t realize in that process, because I’ve lost close people before. I lost a brother, unfortunately, and a stepmother, and that cut very deeply. But when it’s a parent, it’s a part of you, and I really didn’t realize that there would be that big hole, and that we couldn’t communicate in the traditional way, where she was sometimes a little bit in the clouds or in a dreamlike state and sometimes right back to the person I knew, and trying to sort that all out in a difficult circumstance.

It’s frustrating to me to see the irresponsible behavior when it comes to the disease, and I’m certainly also very keen to this idea that older people, I think we have a lot of ageism problems in our society anyway, and I think that really highlighted it, that, “Oh, well, you know, she had all these diseases anyway.” Yes, that’s true, but had those gotten the best of her in a different time and place, we would have had a little bit more of what we pictured.

But what I wanted to get across in the article is that even though it wasn’t what we expected, we did do the best we can. The pandemic forced people, all kinds of business owners and individuals, to really be creative, to open their hearts and follow, and I went by my gut instinct and my moral compass and what felt right and wrong. I wasn’t going to have the experience of holding her hand to the end. I didn’t know if I’d get to see her at all. But we tried. I had someone who was willing to show her videos that I had posted.

We would try to schedule Facebook calls, and the first one of those was my first inkling that something was very wrong, because she wasn’t paying much attention to the camera and her grandchildren, which, since they came around, I’ve been chopped liver, and it’s all about them. So that was surprising, and said, “Oh, she’s just a little tired.” So then we switched to being able to do it asynchronously and send cards. I’d never lost a parent before. There’s no guidance for that.

I think because of what I do, because I have been interviewing physicians and health care administrators and receptionists and practice managers for so long, I think I have a little bit more sympathy and empathy for the health care system and those of you who work inside it than a lot of the public, including my own family members and close friends. I think especially around that time, nobody wanted any writing that didn’t have to do with COVID. So I was speaking to physicians who were in the thick of it, and reading on their faces, what they were seeing was traumatic. It was truly traumatic, and the last thing I wanted to do was give them any more of a hard time than they already were.

Kevin Pho: We’re talking to Debra Shute. She’s a writer, and she wrote the KevinMD article “What it’s like to write about COVID-19 while it’s killing your mom.” Debra, we have a lot of administrators who listen to this podcast, nursing home administrators perhaps. Now, do you have any messages for them on perhaps what they could do better, or any lessons that you’ve learned that you want to share with them?

Debra A. Shute: I think one of the biggest reliefs was being able to do the videos. My mom herself was having a lot of difficulty with technology toward the end, to the point of not being able to dial a telephone. She dialed everybody, and it’d be one digit off or two digits off, and she’d have nice chats with strangers but be very frustrated: “Oh, that operator told me I’m wrong again.” You have to be lighthearted, as one of your other guests talked about with caregiving for an Alzheimer’s patient. So communication was very nonverbal. It was very just spiritual at that point, because that’s what we had left.

Kevin Pho: And writing about this experience, how did it affect you?

Debra A. Shute: On the plus side, it kept me very aware. It kept me grounded in the science and up to date. I think it’s such a scary topic, especially for somebody prone to anxiety like me. I probably would have tried to hide from it had it not been for the sake of my job, that I need to understand these things. And I’d been writing about it for months before her diagnosis came back positive, and it was just such an emotional push and pull from many sides.

And I think end of life, there are so many taboos that I think it’s so misunderstood, because it’s not talked about enough, because it’s so excruciating. I was given a book early on in, well, my mom’s eight-year illness, at some point along those lines, about managing aging parents. It was very similar to What to Expect When You’re Expecting. It was too painful to read by the time I needed it. And I think when people suffer from dementia, from the people I’ve known, their intelligence doesn’t go away, and they get very creative at concealing their disabilities. That was a difficult point: OK, when do we really change roles?

Kevin Pho: And my final question, Debra, do you have a take-home message that you want to share with the KevinMD audience?

Debra A. Shute: Absolutely. It is “thank you,” and not just for what you do on the front lines and every day, but for being a voice, for allowing. I’m so lucky that I get to spend the amount of time I do talking to physicians and learning their different points of view. But I understand you have an insurmountable job in front of you right now, but we have to keep going.

And, you know, I had a pretty tough and difficult outcome from this pandemic, but I know you tried everything you could, and we did have a closure. We had a goodbye. It was not what you expect on paper. It was different, but there was so much humanity that I found in making sure that at least the end result was as close as we could have hoped for, that she did get to pass in a peaceful way, and I had a chance to tell her what I wanted her to hear, whether she understood it or not.

What you do every day, I was not cut out to be a medical professional, and I wouldn’t call it a calling per se, but I think it’s a happy accident that now I get to help be a voice for physicians and other health care providers and workers.

Kevin Pho: Debra, I’m so sorry for your loss. Thank you so much for sharing your story and insight, and thanks again for being on the show.

Debra A. Shute: Thank you, Kevin. Take care.

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