A caregiver’s love story [PODCAST]

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“Dying and introspection happening at the same time were a dual reality that I found impossible to ignore when Bill was not doing well. As Bill’s poor prognosis and impending death began to reflect on our life, it was getting harder to respond to the living as we had in the past. Bill seemed to be pulling away from everyone he knew, except for a handful of friends and me. As a dying person, he seemed to be concentrating on only one thing – dying. The truth is that nature is selfish and dying is just part of the natural transition as someone ages. You can’t avoid it, and sometimes it can even sneak up on you.”

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

She shares her story and discusses her KevinMD article, “Dying is a selfish business.”

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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. Rate and review the show at KevinMD.com/rate. Subscribe at KevinMD.com/follow. Today we have Nancie Wiseman Attwater. She’s the author of “A Caregiver’s Love Story”. There’s an excerpt from that book on KevinMD titled “Dying is a selfish business.” Nancie, welcome to the show.

Nancie Wiseman Attwater: Hi, thank you for inviting me. My background is that I was a critical care nurse for 25 years and worked in an open-heart intensive care unit. I met my husband and married, and then I retired as a nurse and started writing books. This is my 14th book. My other books are quite different, a little bit more on crafts and that kind of thing.

This book came about because I have been taking care of Bill for a little over five years now. He has several illnesses, terminal illnesses. He’s been on oxygen for over three years, and I wanted to share with people what happened when we went to the ER and were sent home with oxygen, what that all meant, and how to take care of the oxygen, because they don’t really tell you much. They just bring you the machine, plug it in, and say, “Go for it.”

OK, so in a lot of the chapters in this book, we will talk about the incident, and then I will talk about how I coped with it, what I did, who I called in for help, that kind of thing. I found that there’s not a lot of support once you go home. The doctors are good at prescribing medications and making suggestions, but nobody helps you. Because I was a nurse, I believe they told me even less, because I just assumed I couldn’t know everything, and in most cases I did. But what I wasn’t getting was the support for myself.

A lot of my book writing starts out as more of a journal for myself, just talking about what happened, getting it off my head so it doesn’t bother me all day and all night. Then I look at it and say, “Well, you know, there might be other people interested in this.” So I started doing some research on what I called anticipatory grief, and I believe it’s called that in the literature as well, and how it’s sort of unacceptable to talk about the impending death. It’s hard to get therapy, families don’t want to talk about it, and “I don’t want to see the patient when he’s really sick; I want to remember him the way he was.” But there’s a lot of closure involved when you talk about what is happening before it happens. I always feel like we’re waiting for the other shoe to drop, that kind of thing, and what will happen and when it will happen.

As far as the chapter “When a good cry is in order,” there are actually very good tears that once clean your eyes out. I found in my research that just a great big sob and a good cry often makes you feel better, because you’re releasing those endorphins and you’re getting that out of your system so you can kind of move on with your day.

We were in the emergency room last night. We got home at 4 a.m., and I’m not sure what’s going to happen today. That’s what I wanted to offer people with this book: OK, we went to the doctor, and I’m not exactly sure. I don’t want it to sound like a medical book or a medical journal. I try to approach it from the person home alone trying to cope with, “Well, they sent me home with all these medications. I don’t know what to do.”

That was my purpose, and a lot of it was to help myself. I often wonder if I’m doing the right thing. Am I handling this correctly? I bit somebody’s head off in the emergency room last night because it was three o’clock in the morning and they were telling me to get out of the hallway. Leave me alone, you know? This is hard, and I want people to know that that’s OK.

Kevin Pho: So your book is titled “A Caregiver’s Love Story”. Now let’s talk about one of the examples that you had mentioned, which is very, very common: coming home in the middle of the night from an emergency department visit with a bunch of medications. It could be oxygen, as you mentioned. So there are plenty of people across the country in that similar position, and like you said, they may not know exactly what to do. So let’s take that particular example. What kind of advice do you have for people in that position?

Nancie Wiseman Attwater: Well, you need to do your research. Unfortunately, when your oxygen is being delivered to your home, you may not have time to investigate it thoroughly until everything’s calmed down. We have an oxygen concentrator. We don’t have tanks, because he’s on it 24/7. I have a chapter in the book on education about oxygen and what PO2 means and FiO2, and that kind of thing, which are all ICU terms for people on ventilators.

But my advice would be to sort of step back and not go crazy with this equipment or this medicine. Read your labels. You can pull up the medication on your phone, or what the oxygen concentrator does, and that kind of thing. If they’ve sent you home, my theory is that it’s not that critical that you need to panic and start doing all these things right away. You can step back and maybe take a nap, because if you get home at four o’clock in the morning, you may not be in good shape to be making these decisions as to what medication to give and what the doctor told me.

The other thing that I’ve found in our health care system is that you can go online and read the notes, and you might get a better explanation of what the doctor was intending by giving you this medication or starting the oxygen. It is very scary. I mean, even with a medical background, when all this stuff started arriving at my house, it was very scary. I made a comment one time about the oxygen, about, “I don’t want to blow up the house,” and somebody bit my head off and said, “Well, you’re not going to blow up the house. It doesn’t do that.” Well, no, you don’t understand. You’re not walking around 50 feet of tubing with oxygen running through it all day long.

But my best advice is to try to step back, maybe get somebody else in the family to look up the information for you, and figure out exactly what the doctor intended. If you don’t understand it, then call somebody or email somebody and get an explanation before you possibly give the wrong dose or connect the oxygen incorrectly, that kind of thing.

Kevin Pho: So tell me about some of the major challenges that you face as a caregiver and how you overcame those challenges.

Nancie Wiseman Attwater: Well, one of the big challenges is that we’ve tried to hire help, and we have gone through so much help. They send untrained people who think that sitting on the couch and talking to Bill is what we’re looking for.

Kevin Pho: And what kind of help were you looking for?

Nancie Wiseman Attwater: Well, I was looking for someone that I felt confident leaving with him so that I could run my errands or go to the doctor myself, that kind of thing. Only three or four hours; I’m not talking about a weekend trip. We’ve had some great, great people. We had a gal for over a year and a half, and then her husband passed away, so we lost her.

But I’m finding the companies will just accept anybody into this caregiving job. We had an 18-year-old who didn’t have a clue. I don’t expect them to understand the medical terminology and that kind of thing, but when I explain to them that you need to empty the urinal, say, every time he uses it, they don’t want to do that. They have to get up and wash their hands and go do these things. Most of these gals, I believe, think caregiving is just babysitting and talking to the patient, and that’s not what we need.

So I’ve gone through so many companies. I mean, I’ve had to just fire companies because I couldn’t get anybody. Just recently, I had a company bill me for two days that I didn’t have a caregiver. So you’ve got to keep an eye on all that stuff along with everything else you’re doing, and make sure that you’re getting the best you can for your loved one.

I have found that for some, if I told them I was a nurse, they just panicked. They just thought I was going to be too tough or too strict. So a lot of times I didn’t say anything right away, and then it would kind of come up in conversation. But I had a list: This is what you need to do every day. I thought it was pretty easy, but maybe.

Kevin Pho: Now, there’s a phenomenon known as caregiver fatigue that sometimes is underreported. Can you comment on that, and is that something that you yourself have experienced?

Nancie Wiseman Attwater: Yes, and I experience it. I am exhausted. I take care of Bill. I do all the driving. Bill used to do all the cooking and the shopping. I never learned to cook, so I’m sort of trying to make my way through that, plus do everything else, the laundry and the beds, and try to keep my own sanity a little bit. I do live in an area where we have a gym, and I try to walk to the gym three or four times a week to try and exercise out some of this anxiety I have.

There is also a chapter in the book that’s entitled “I can’t do this anymore,” and that comes to my mind quite frequently. I have a friend in Utah that I text all the time, and a lot of times I’ll say, “Oh, I can’t do it another day. I cannot do it.” But then Bill needs something, and he’s so kind and caring about everything I do for him that I end up not feeling bad about it afterwards.

But honestly, for as long as I’ve done it, and I’ve had to move us to an assisted living-type place, and I’ve packed and unpacked a house entirely by myself, and I’ve sold cars, it’s a lot. And I take care of a spouse that is not going to survive. So every day you say, “What’s going to happen today? What am I going to do? And what am I going to do when such and such happens?”

Kevin Pho: Tell us what kind of resources you have to turn to for support.

Nancie Wiseman Attwater: As I said, I live in this retirement, assisted living-type community. I have three wonderful neighbors who are widows, and they never say to me, “You know, we’ve been through this. We know what you’re going through.” They’ll just check on us and offer to go to the store. Last night, when we were in the emergency room, one of them came over and took my dog out for me.

Bill has children, and we do not see them, and so I get no support at all. I have no family. I have a brother in Missouri, but I have nobody here, and I don’t have any children. So for me, with his children not being a part of his death, I just can’t help but believe that they are going to be very sorry about that, ultimately. These kids are in their 50s. I mean, they’re adults, and they have chosen to just, I feel like we’ve been abandoned. But they blame it on me. They say that I’m mean to them or whatever. I don’t know anymore.

But if your family isn’t there and you need to go out, you know, I don’t go knock on my neighbor’s door and say, “Listen, we’re having a really bad day.” But when I’m walking the dog or something, they’ll wave at me and just check in, and if somebody’s going to the store, do I need anything? It’s just those little, tiny, helpful things that take some of the stress off and make the day a little easier, so that I can then go in and maybe read to Bill or sit with him for a while, or help him shave or help him bathe, and that kind of thing.

Kevin Pho: Now, on this platform, you have an audience primarily of clinicians, primary care doctors like myself. So from a caregiver perspective, are there any messages or anything that you want clinicians to know?

Nancie Wiseman Attwater: Well, yes. I would like it if it wasn’t maybe so cut and dried. I know the time is short. Doctors don’t have a lot of time. The patient comes in; they see the patient, write a prescription, order the oxygen. When Bill was told that he had three to four years to live, they just walked out of the room. Eventually we have been put on hospice care, and I had to kind of beg for that.

I thought this doctor was one of the kindest doctors we’ve ever had, but his day had to move on, whereas ours just had the air sucked out of the room. We’re still sitting there, and I have to push Bill up to the car in the wheelchair and try not to cry.

Kevin Pho: We’re talking to Nancie Wiseman Attwater. She’s the author of the book “A Caregiver’s Love Story”, and there’s an excerpt from the book on KevinMD. Nancie, what are some of your take-home messages that you want to leave with the KevinMD audience?

Nancie Wiseman Attwater: Because you said most of your audience is physicians, I’d like them to keep in mind, and I know you’re taught this in medical school, that the patient is not a diagnosis. The patient is a human being, and everybody, even if it’s just a pat on the back, deserves some encouragement: “You’re doing a good job. He’s lived three years. We didn’t think he was going to live that long.” Just a little more help for the caregiver.

Bill’s real laid back. You can tell him anything, and he just goes home and takes a nap. But it’s those of us out there giving the battles and doing everything who need a break, and physicians might need to help us get that.

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

Nancie Wiseman Attwater: Thank you very much.

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