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In this episode, Nancie Wiseman Attwater discusses her husband Bill’s struggle with idiopathic pulmonary fibrosis. Despite the doctor’s advice to change his diet, Nancie realized that it was probably too late for that to make a difference. Instead, she focuses on making him comfortable in his remaining days and encourages other caregivers to do the same. Tune in to hear more about Nancie’s journey as a caregiver and the importance of taking care of yourself while taking care of a loved one.

Nancie Wiseman Attwater is the author of A Caregiver’s Love Story.

She shares her story and discusses her KevinMD article, “The slow progression of aging: Let compassion reign.”

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Transcript

Kevin Pho: Hi, and welcome to the show. Rate and review at KevinMD.com/rate. Subscribe at KevinMD.com/podcast. Today we welcome back on the show Nancie Wiseman Attwater. She’s the author of A Caregiver’s Love Story. Today’s KevinMD article that we’re going to talk about is titled “The slow progression of aging: Let compassion reign.” Nancie, welcome back to the show.

Nancie Wiseman Attwater: Hi, thank you.

Kevin Pho: Now, for those who didn’t get a chance to listen to our first few episodes together, just briefly share your story and journey to where you are today.

Nancie Wiseman Attwater: My husband was ill for about five years with several chronic lung illnesses, and he passed away in August. But I wrote this book about caring for him before he passed away. He was sick for about five years, so what I was trying to do was use this as stress reduction for myself, a way of grieving on paper. I found that it was very therapeutic for me to write; I do a lot of it. And what I was trying to do was help other caregivers not only care for their loved one, but also take care of themselves.

I was a registered nurse for almost all my life, and I worked in intensive care and renal dialysis, so I had a lot of experience with long-term illness in people. I always felt like we didn’t take care of the family as well as we should have or could have, maybe because we were always so busy taking care of the patient.

Kevin Pho: Now that your book has been out for a little while, maybe talk about some of the response and feedback that you’ve received.

Nancie Wiseman Attwater: I’ve gotten some really good responses. I just visited a friend yesterday who had a stroke and just got out of rehab, and she gave the book to her neighbor. The neighbor wrote me this lovely letter about how the book helped her. Her husband has Lewy body dementia, and she felt that my writing about taking care of your loved one, but more importantly watching out for yourself, was very helpful for her. I think she has a long road to go. She just wanted to talk to me and ask me some questions about how things happened and what it was like to become part of hospice care. I find that hospice is something that is greatly misunderstood by a lot of people. So we sat and had a cup of coffee and a cookie and just kind of talked about my husband and her husband.

And my friend that had the stroke was doing great, amazingly great. She wasn’t even supposed to survive this stroke. So it was really uplifting, sad but uplifting, to talk to the lady. The lady’s name was Kathy. And I think for me, that’s what the book has done for people. It’s like talking to you in your living room and trying to help you get through these very difficult diagnoses, medication regimens, oxygen, surgeries, and trips to the ER, and the fact that the caregiver is often the last person to get cared for.

Kevin Pho: All right. Your latest article is titled “The slow progression of aging: Let compassion reign.” Now tell me, how did this article come together?

Nancie Wiseman Attwater: Before Bill was in hospice, he spoke with a palliative care doctor. The doctor went through all of Bill’s history, and then there was a social worker who was on the Zoom call with us. Bill was 83 at this time; he died at 84. The doctor wanted him to go on a plant-based diet, stop taking a medication that he had been started on because he had had a TIA, and make all these changes that were clearly too late for Bill. It makes sense to not eat bacon and to exercise and do all that, but Bill could barely walk. I found that it was a speech that he probably gave to everybody without really knowing anything about what the patient was capable of.

Bill loved bacon. I was not going to take bacon away in the last six months of his life. To me, that was all sensible advice, and I have tried to follow a lot of it, but there wasn’t a lot of compassion for the situation. He talked about health span, and it all makes sense when you’re 40. You’re 84 and already have a terminal illness. So I wanted people to understand that even though the palliative care doctor was very informative and had great ideas, they were not appropriate for us, and that’s where I felt this kind of fell apart. I think it’s because he never met Bill; he only read his chart. But that’s how it works.

Then the social worker got on the call and said, “Have you two considered assisted living?” Well, yes, we have, but there are a lot of ramifications with assisted living too, and we weren’t sure Bill would even survive a move. I felt that it was good advice, but there was no compassion for Bill and his needs.

Kevin Pho: Now, was it the first time that you met this particular palliative care physician and social worker?

Nancie Wiseman Attwater: It was the first and only time we talked to him, because two months later Bill went into hospice, so we didn’t talk to him again. But it was during COVID, so you couldn’t go into an office and that kind of thing.

Kevin Pho: Now, did Bill have any long-term clinicians who were taking care of him, whether it was a primary care physician or some type of specialist?

Nancie Wiseman Attwater: Yes, we had several specialists. We had his primary care physician, who was wonderful. In fact, she sent me a lovely sympathy note. And he had a pulmonologist, because he had idiopathic pulmonary fibrosis, and Bill really liked him. When we went into the office to see him, Bill really felt that he was giving him a more realistic idea: “Let’s start this medication. We’re going to start you on oxygen. We’re going to try all these things.” But it didn’t take Bill’s bacon away. We decided that, more than anything, my job, as I looked at it, was to keep Bill comfortable, even though, yes, the bacon was bad. He didn’t like eating plant-based diets because he’d never done it. It needed to be started when he was younger, but it just didn’t happen, because back then we didn’t know as much about plant-based diets.

Kevin Pho: Ideally, a lot of these conversations should be with someone who knows Bill and you on a longer-term basis, like a primary care physician, who certainly would understand some of the context and know who Bill was, versus someone who would literally only meet you one time. So I guess the question is, did Bill’s long-term physicians approach some of these issues with both of you?

Nancie Wiseman Attwater: No. Once Bill had the test for dementia and did not do very well, she pretty much talked to me about what to do for Bill, because Bill was not always able to track a conversation. But as soon as we went on hospice, he no longer saw his physicians. We only saw the hospice doctor and the hospice nurse. The hospice doctor came to the house a couple of times, and he looked very young. Bill said, “You look like you’re 16. What are you doing trying to take care of me at the end of my life?” Of course, the doctor took it very well, because he’s probably heard it a lot, and he tried to explain to Bill why he was interested in end-of-life care and that kind of thing. But for me, it was a little bit of an issue that this doctor, who had done nothing but read Bill’s chart, was telling us how to handle his end-of-life situation.

Whereas Bill loved his primary care physician. She was an ex-Army doctor, and Bill was ex-Army, and he loved talking to her. I think if she’d said, “Go to the plant-based guy and cut out the bacon,” he might have listened just a little harder. He wouldn’t have done it, but he might have listened to her. It was because we kept dealing with new doctors when he had a doctor that he loved. And I know it’s kind of the system. You keep getting referred to specialists. He loved this pulmonary doctor, and he felt he could talk to him and say, “Dr. Dylan, I’m not tolerating this oxygen at this dose. What can I do?” He felt like he could have a conversation with him. My husband was an attorney, so he could talk a lot.

But I did feel that toward the end, when we were only seeing hospice nurses, there was no more comfort other than the morphine, the lorazepam, and the Ativan that they wanted me to give him. And that’s not what Bill wanted. He wanted somebody to talk to him.

Kevin Pho: Now, this is, like you said, not an uncommon situation, where we physicians have to meet patients and their families for the first time, sometimes under very difficult situations. So speaking from your perspective and from the experience that you just went through, tell us what kind of advice you can give us to help make those conversations go a little smoother.

Nancie Wiseman Attwater: Well, I think it was my responsibility as Bill’s caregiver to know everything about his medications, because I’m the one that dispensed them. I’m the one that took his blood pressure. The medical assistant would take his blood pressure when he went to the office, and they’d get one reading and say, “Oh, your blood pressure.” But no, wait a minute. Bill’s also under stress and had to walk in here, and Bill could barely walk.

So I was a little pushy sometimes, and I said, “No, let’s back up. Let’s talk about the average day for Bill, that he sleeps 18 hours a day, that getting him to the doctor’s office is very difficult. You can’t just see this one five-minute visit and make every assumption on his care and help.” And I would prolong the visit sometimes and say, “No, no, Bill, you tell them what’s going on,” and make him talk.

I know that doctors don’t have a lot of time, because everybody’s sick right now too; you can’t even see a doctor. But I just felt that once Bill went to hospice, he was no longer a living patient with a heart and feelings. And he would talk to the doctors and try to chitchat with them, because he loved that. Like with his primary care physician, he loved talking Army with her.

But I was taught in nursing school that the patient is not the diagnosis. I got in trouble one time for saying, “Oh, the diagnosis is the same; the only thing that changed was the patient’s name,” and my head nurse jumped all over me for saying that. But it just becomes the only way we can treat patients anymore, because I think getting emotionally attached to patients is extremely difficult for a doctor. You see so many, and you have to deal with family members who don’t understand the disease process and that kind of thing.

I spoke to a neighbor, I guess it was her cousin, the other day. He was on dialysis and had absolutely no clue whatsoever why he was on dialysis, and I didn’t think it was my place to explain. But it’s not the doctor’s fault; it could be his comprehension of the whole thing. But Bill understood, and if he had questions, they didn’t always get answered unless I stepped in and said, “Listen, we’re really unsure of this. You need to really take some more time, or we’ll make another appointment and we’ll come back,” as difficult as it was for Bill to get in.

Kevin Pho: We’re talking to Nancie Wiseman Attwater. She’s the author of the book A Caregiver’s Love Story. Her KevinMD article is titled “The slow progression of aging: Let compassion reign.” Nancie, what are some of the take-home messages that you want to leave with the KevinMD audience?

Nancie Wiseman Attwater: Have compassion for yourself as well as your loved one that you are caring for. I think we need to have a little more compassion for our doctors as well. I think the medical field has had a really rough time of it, and doctors are getting sick and quitting their jobs. Although it’s not our job to take care of them, I think we need to be a little more understanding of what their day is like, as well as the patient. I think if we had the discussion where you could say, “How are you doing today, doctor?” and he could say, “I’m incredibly busy; we’ve got to make this quick,” I’d probably be more understanding of that than the bum’s rush I often felt like we got, because we like to talk a lot. My takeaway would be more compassion for everybody.

Kevin Pho: Nancie, thank you so much for sharing your story, time, and insight. Thanks again for coming back on the show.

Nancie Wiseman Attwater: Thanks.