What anticipatory grief feels like [PODCAST]

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“I experienced many deaths when I was a nurse, from babies, kids, young adults, the elderly, and my own family. It was always heartbreaking, but I found that staying with the dying and the family and supporting them in what little way I could made the experience more bearable. I was not a hospice nurse, but I did not fear death, and I managed caring for the dying without difficulty. That does not make me an expert, and when my loved ones die, I’m not sure how I will act, but I’m hoping my experience can help those who have not experienced death very much, like Bill’s children.”

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

She shares her story and discusses her KevinMD article, “What anticipatory grief feels like.”

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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/podcast. Today we welcome back on the show Nancie Wiseman Attwater. She’s the author of the book A Caregiver’s Love Story, and her KevinMD article, which we’ll talk about today, is titled “What anticipatory grief feels like.” Nancie, welcome back to the show.

Nancie Wiseman Attwater: Thank you, Kevin.

Kevin Pho: We’ll talk about your article in a little bit, but for those who missed our first episode together, just briefly share your story and journey to where you are today.

Nancie Wiseman Attwater: It has been five years. My idea with writing this book was to help people understand the job of a caregiver: what you might go through as you care for a loved one, a spouse, any loved one, all the different hospital visits, and how to make it easier for yourself, how to understand as well as you possibly can. Because the medical care people are always in a hurry and want to give you the briefest explanation, it’s up to you to look things up and try to get the best definitions you can if you don’t understand what’s going on.

My husband was on oxygen for three years, and we had an education in oxygen. It’s easy, but it’s also complicated, and you have to be careful with it. So I talk a lot about these things in the book: hiring and firing help, when to call an ambulance, and how to take care of yourself as well.

I started researching anticipatory grief because I realized that rather than living day to day, I was already grieving. It’s common. In fact, the problem with anticipatory grief, I found, is that people don’t talk about it. It’s thought that maybe you’re giving up hope, or you want it to be over with. And the things that you anticipate, you just might not expect. Bill referred to it as waiting for the other shoe to drop. Would I go to the grocery store and come home and he wouldn’t be alive? How would it happen, and what would happen?

We were married for 30 years, and we had a very good relationship in that we talked about things. With anticipatory grief, you need to talk about things. You need to talk about what people want. Visiting with people that are ill is a part of anticipatory grief, and some people are a little nervous about going to see someone who might be at the end of their life. What you’ll find, I think, is that it’s very healing for you both. You get to talk about things. You may not have had a great relationship with your kids, or when you were younger something might have happened, and this is the time to make it all better.

Kevin Pho: Now, just for my viewers, explain to them from your perspective: What is anticipatory grief like? How would you describe that?

Nancie Wiseman Attwater: I would describe it as pre-grief, before the death, when the diagnosis has come in. Although the feelings may be very much the same, it’s the waiting, it’s the not knowing, and as I said, it’s not talked about very often. And so for me, it felt like: What was going to happen today? Was anything going to change? Would I have to call an ambulance? Would I have to go to the doctor? Would the oxygen concentrator break and I’d have to order a new one? It was always that little bit in the back of my head of anticipating what might happen, so that I could prevent it from getting really bad. And I was a nurse, so I was pretty good at that. I worked in an ICU, and you learned to read monitors and anticipate things, and that’s what I tried to do with Bill.

But it’s hard on your body: the lack of sleep, the waking up in the middle of the night, not knowing. Bill fell a lot, so we had to deal with a lot of the fire department coming to help Bill out, and often we would joke about it because that was what we had to do. It was hard for Bill because he was a very strong man, and to have to rely on help, it was very difficult for him to ask. And so that’s why we joked. That’s why we tried to anticipate that maybe this doctor visit wasn’t going to go well. Bill’s favorite thing was to go to McDonald’s, so we’d need to go to McDonald’s before, or we’d plan to go after. We had to make it as normal as we possibly could with what was happening.

Kevin Pho: I can’t even imagine how difficult it was for you to go through such a period of anticipatory grief, the anxiety, like you said, and the stress of just not knowing. What are some of the ways that you adjusted to that?

Nancie Wiseman Attwater: I have a dog, and I walk the dog a lot. Grace was my dog, but she loved Bill, and you could say, “Go find Dad,” and she’d run and go find him. So the dog was a lot of stress reduction for us because she made us laugh. I tried to go to the gym. I tried to keep up with my exercise despite how tired I was. A lot of times, when he’d be in the emergency room, I would just go out and walk in the parking lot, just to get some of that anxiety and my heart rate racing to calm down.

I am not a cook, and so I have had to learn to cook. I still don’t do very well, but I do try. But I also do a lot of hobbies. I knit, crochet, and quilt, and I kept up with all of that. I may not have gotten as much done as I did in the past, but I kept up with those friends. I kept up with those people that I used to go to classes with, or we knit together, or whatever.

But the thing is that I believe the caregiver gets lost in the grief, lost in the illness. And I was getting a reputation of being pushy in the ER: “You will tell me exactly what you’re doing,” or “You will do this, because I know that this is what he needs.” We were there one time, and they refused to put oxygen on him, and I said, “You’ve just got to.” And eventually they got used to me a little bit, because they knew I was a nurse and they knew I was taking good care of him. But it’s hard to step up and do these things when you’re already hurting inside.

Kevin Pho: Now, did you have any interactions with the medical system that could help you, perhaps seeing a counselor, seeing your primary care physician, anyone else who could help you, rather than trying to go through this difficult period by yourself?

Nancie Wiseman Attwater: Other than the hospice, I did not really have anybody say, “You need to get counseling,” or anything. I have felt that counseling, and I’ve had it before, is very important. And so I tried to do things online. There’s counseling online now, which is fabulous. You don’t have to leave your house once you get used to the system.

My primary care never really said anything other than, “I’m sorry you can’t sleep, but I’m not going to give you anything for it,” because there was also the risk of my falling if I took a sleeping pill. And that’s a worry now that I’m alone, that I have to be very careful by myself. But I did not find the medical establishment very helpful for me. Bill was a joker, and he’d go into the doctor’s office and joke, and then sometimes things would get ignored, and then I’d have to bring them up. And so I think sometimes I was more of a foreign, and this woman needs a little help, because I can be very strong when I have to be, but it doesn’t always work.

Kevin Pho: Now, for those other caregivers who may be listening to you here, perhaps reading your book or reading your article on KevinMD, what kind of advice do you have for them, specifically when it comes to anticipatory grief?

Nancie Wiseman Attwater: You need to go slow. You need to take care of yourself. You need to keep up with your own doctor’s appointments and consider speaking to the hospice nurses or therapy of some sort, because you are going through as much as your loved one is, only you’re watching it on the outside. You need to be able to keep up your energy, which means you need to eat and take care of yourself, exercise. And I know that all sounds so easy, and it’s not, but you are your own caregiver as well. At some point, everyone in the world will become a caregiver, even if it’s just to an animal. You will be a caregiver, and you need to watch out for your own emotions and your own heart, which is breaking.

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 “What anticipatory grief feels like.” Nancie, what are some of your take-home messages that you want to leave with the KevinMD audience?

Nancie Wiseman Attwater: Because I’m a little tearful, I don’t sound overly emotional. We all need to take care of each other. We’re all walking each other home. And if you don’t have somebody to care for you, then maybe you need to work on that and find somebody to help you too. Hiring help is one way to do it, but having someone that just comes to the house to see you and check on you and call you is a huge part of just your mental stability when going through the whole thing, and after.

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: Thank you, Kevin. Thank you.

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