I’m pleased to introduce today’s guest, Jennifer O’Brien, author of The Hospice Doctor’s Widow: A Journal. Jennifer’s physician husband Bob had for years been part of an interdisciplinary healthcare team that provided end of life care to their patients. And then it was his turn. He was diagnosed with a stage IV, metastatic cancer. Jennifer traces their journey together during the 22 months following his diagnosis until he died, as well as her early widowhood. She’s all about being fully present during even the toughest moments, honoring grief, and going forward after devastating loss.
Hospice Doctor’s Widow
You can listen to the full conversation by clicking ‘play’ above, or on the following podcast platforms:
The following is a taste of my conversation with Jennifer:
Q: What can you share about the fear many of us have of becoming a burden for our loved ones at the end of life?
Jennifer: I can share that while it is exhausting and, in some cases, sad and difficult and will stretch you beyond what you thought you were capable of, it is also an incredible honor to care for someone you love.
Q: You write hope for the best, prepare for the worst. But you also explain that the best and the worst were changing over the course of the illness. How did you stay present with what it meant at any given moment?
Jennifer: Bob and I were lying on the bed together and just kind of crying about how much we were going to miss each other when he died, and that certainly is a very best moment, but it’s not necessarily, you know, joy and ebullience. It’s more the best in terms of how real it was and profound.
Q: How did you manage the line between reasonable hope and the desire to continue the fight, and what really is unreasonable hanging on too long to hope?
Jennifer: It comes down to, what are you hoping for? I think where you run into problems is when you hope for a life expectancy that simply is unrealistic. And you don’t adjust your hope to the best being, intimacy or a peaceful, comfortable death.
When asked if there’s one last thing she’d like our listeners to hear, Jennifer says, “It would be that death preparation is love demonstration.”
About Jennifer:
Jennifer O’Brien lives in Little Rock, Arkansas, where she is an artist and advocate for dialogue about end of life. Her book, The Hospice Doctor’s Widow: A Journal, is a personal exploration of both. Jennifer began journaling and creating the collages and tableaus during her husband’s illness as a form of self-care, and her book was born of this work. Jennifer is no stranger to the mortality of loved ones nor to the world of healthcare. Prior to the death of her husband, Bob Lehmberg, her brother died when she was eighteen and her mother died when she was thirty-seven. For more than thirty years, Jennifer has been a consultant to physicians and served as CEO for two large medical practices.
Find Jennifer on Social Media:
https://www.etaliapress.com/authors#/jennifer-obrien/ (Website)
https://www.hospicedrswidow.com/ (Book Website)
https://www.instagram.com/hospicedoctorswidow/ (Instagram)
https://twitter.com/DrsWidow (Twitter)
https://www.linkedin.com/in/jennifer-a-o-brien-msod-a3b9491/ (LinkedIn)
https://www.facebook.com/jennifer.a.obrien.37 (Facebook)
Jennifer’s Book:
The Hospice Doctor’s Widow: A Journal
Books Mentioned in the Interview:
Nothing Bad Between Us: A Mennonite Missionary’s Daughter Finds Healing in Her Brokenness, by Marlena Fiol, which is now available for pre-order on Amazon.
“Desiderata,” by Max Ehrmann.
About Marlena Fiol:
Marlena Fiol, PhD, is a globally recognized author, scholar and speaker. She is a spiritual seeker whose work explores the depths of who we are and what’s possible in our lives. Her significant body of publications on the topic, coupled with her own raw identity-changing experiences, makes her uniquely qualified to write about personal transformational change. She is also a certified tai chi instructor and freelance writer whose most recent work has appeared in numerous literary magazines and newsletters.
Find Marlena Fiol on Social Media:
Facebook
Twitter
Instagram
LinkedIn
Podcast Transcript:
Marlena: All right, let’s get started. Jennifer, welcome. Thank you for taking the time to speak with me.
Jennifer: Thank you. It’s a pleasure and an honor.
Marlena: So would you start by setting the stage for our conversation? I was hoping you might give just a brief overview of the journey that you write about so poignantly in your journal.
Jennifer: Sure. So it actually starts when I was quite young. When I was 18, I lost my only sibling. He was in an accident and in a coma for almost three weeks. And then my parents had to make the decision to extubate him. And then some years later, I lost my mother. So that when I was at an art gallery opening one night in 2010 and met Bob Lemberg, who shared with me that he had been a plastic and reconstructive surgeon for 30 plus years but because of a neck injury, he couldn’t operate anymore and chose to retrain in hospice and palliative care. Well, that was a real head-turner for me. And of course, he was cute.
Marlena: That doesn’t hurt.
Jennifer: Yeah, that doesn’t hurt. And so we fell in love and a lot of our love and our life together was his work helping patients with life-limiting conditions and an end of life. And my personal experience with that and how important it was, so that was just a big part of our lives. Then fell madly in love, got married, that sort of thing.
And then in 2015, he was diagnosed with an advanced metastatic stage IV cancer that was already in his thoracic spine and so all of that believing and talking and helping others at end of life and with survivorship, you know, we now had to sort of have turn on ourselves and manage it for ourselves. So that’s kind of how it came to be. I had been a self-taught artist prior and collage artist and so as sort of an outlet self-care kind of thing you can imagine that I turned to the art to try to process things.
Marlena: And just for our listeners, the book has beautiful art in it as a part of the overall message, which really adds depth to it. So it’s gorgeous.
Jennifer: Thank you.
Marlena: Jennifer, as a physician, Bob was used to being the one. The one who always took care of others. And when I was reading your book, I couldn’t help but be reminded of my father whom I write about in my book, “Nothing Bad Between Us.” My father was a brilliant physician. He was a pioneer of current-day treatment of leprosy. And so he was always in charge of the well-being of others. And at the end of his life, it was really hard for him to accept being the one who needed care. So my question to you is, was it difficult for Bob to accept that role reversal?
Jennifer: Oh, yes. Yes, it was difficult and to some degree, it was a big part of some of the, you know, the way it went. I think he really wanted his privacy. He didn’t really wanna become the patient of his partners and his palliative care fellows. And so, our palliative care throughout the 22-month illness was really sort of DIY which I can’t really recommend, although, to anybody else. It worked for us because it needed to because that’s what Bob wanted. And I wanted to give him what he wanted but it was very hard on me because palliative care is an interdisciplinary specialty and much of what they deal with is the family and the caregivers’ needs and the psychosocial aspects and in some cases, the spiritual aspects of managing life with disease or condition.
So I didn’t get a lot of that. Periodically, Bob would sort of turn to me and I could see the recognition on his face that especially after a day at the office, but Bob really wanted to work more than anything else. He wanted to work until he absolutely could no longer work. So we focused on that and so he’d come home some days and kind of give me an extra tight squeeze with some acknowledgment that he had seen a patient that day whose, you know, spouse or caregiver looked like they were particularly exhausted or troubled. And there would be some acknowledgment. But yes, it was very hard for him to accept being the patient.
Marlena: Yeah, and being a burden. My husband and I talk a lot about not wanting to be a burden to caregivers at the end of our lives. And in fact, you write quite vulnerably that the burden was so heavy for you that there were times when you just wanted to leave, which is so understandable. Given your experience, what can you tell us? What can you share about this fear of becoming a burden that so many of us feel?
Jennifer: Oh, that’s a good question. I can share that while it is exhausting and in some cases, sad and difficult and will stretch you beyond what you thought you were capable of. It is also an incredible honor and to care for someone you love. And it is also incredibly intimate to care for someone you love and to have discussions and help them carry out plans as far as, you know, bestowing gifts or planning memorial service or whatever. So it’s really an incredible gift. The burden factor, it’s so interesting, the burden factor really isn’t a part of it from a caregiver. At least it wasn’t for me from a care… Yes, there was a burden but it was so overwhelmed by the love I felt and the great honor that it was to take care of him that it didn’t feel that way.
And of course, that I knew it was coming to an end. I think it might be different in the case of a chronic condition, right? That just kind of goes on forever and ever. Or feels like it goes on forever and ever. I mean even in the moments when this felt like it was pretty unbearable, you know, quickly you’d sort of play it out in your head and go… Or I would play it out in my head and say, “No, I don’t like how that ending goes with me running away.” Or me, you know, whatever weird little moment I was having about whether I could handle it or not.
Marlena: Yeah, in fact…
Jennifer: So I thought honor. It’s really more of an honor than a burden.
Marlena: Yeah, that’s wonderful. And your comment about, “Now, that’s not how I want it to end to me running away” is also something that really struck me when I was reading your book and I actually wrote it down. In front of me, there’s a quote from the book, “There is only one shot at getting it right. There are no do-overs in the end of life.” And at the beginning of the book, you state that Bob will die and you will go on and you’ll have to live with how you handled what you called your precious time. So getting it right and not having regrets is so important to your life after the loss. Was this always your focus? Or was there a moment that crystallized the importance of this one-shot for you?
Jennifer: There was always the focus. Sort of the three things that Bob and I both knew, Bob professionally and me personally, were that at the end of life comes death, that there are no do-overs in end of life. And that changed forever, the survivors remain. And so Bob would have said the latter to a little differently.
He would sort of tell us, “Team, we’ve only got one chance to get this right.” And he would say, which is also in the book when he was having his interview with Dr. Smith, that the patient is gonna be fine, you worry about the family. And so that’s kind of my take on that is, you know, changed forever, the survivors remain and I think I knew that, you know, from a very young age, I mean, I lost my brother when I was 18. And I knew that sense of, you know, having only what you had and so yeah, so I knew from the start that I think regret prevention…
Marlena: I love that.
Jennifer: …is a big part of it for me.
Marlena: I love that.
Jennifer: Yeah, and just kind of processing everything in a way that says how am I gonna feel about this, you know, after he dies? How am I gonna feel about how I behaved? How am I gonna feel about whether I engaged in a silly argument? You know, that sort of thing?
Marlena: Going back to what you said about the caregiving being an honor for you, I’m wondering if some of the fear that many of us hold about not wanting to be “the burden” is that deep down, we’re actually terrified of showing that much-naked vulnerability to our loved one. I wonder if do you have thoughts about that?
Jennifer: Yeah, I certainly think that’s a big part of it of being… You know, there’s a page in the book that talks about how we’re our worst in fear, we’re our best in vulnerability. And so I guess I would adjust that to say that sort of raw fear where you’re trying to put up all sorts of upfronts and guards to not be fearful. That’s where you run into problems I think. But the truth is, you know, vulnerability is a great intimacy also that you can share. It’s…
Marlena: It’s one of the best really when it comes right down to it.
Jennifer: It really is.
Marlena: That’s right.
Jennifer: It really is [crosstalk 00:14:02].
Marlena: And it’s crazy to fear what can be the very best, right?
Jennifer: Yeah.
Marlena: Yeah, absolutely. You write that you and Bob read the poem “Desiderata” to each other most mornings and that it centered you for the rest of the day. And just for our listeners, this poem was written in the 1920s by Max Ehrmann and it begins, and I think our listeners will immediately recognize it when I read just the first line. “Go placidly amid the noise and the haste, and remember what peace there may be in silence.” That’s so lovely. What was it about that particular poem that made it meaningful to you and Bob at that time?
Jennifer: That’s interesting. I was not familiar with that poem. And one day, long before Bob got sick, I came into the bathroom one morning when we were getting ready for work and he had it in front of him. And, you know, I was just sort of curious about it. And so we read through it and it is so perfect and it’s so comprehensive and we both just really loved the messages in it. And so that started a little more morning ritual. And sometimes, you know, like I said in the book, sometimes we would do it kind of partially in a silly voice just to, I don’t know, I guess lighten things up. We did a lot of things in silly voices. But anyway, yes, it’s a wonderful centering poem that just really puts things right in your head and in your heart.
Marlena: Yeah. And so, today with Bob no longer in your life, if you go to something like that, a ritual like that, does it bring you joy or mostly sadness?
Jennifer: Oh, absolutely. No, I rediscovered that poem. You know, we moved, we downsized as preparation and so we moved and I think it was when we moved that that poem fell out of our morning ritual. And I rediscovered it some months after Bob died. I was reading something in “The New York Times” that referenced it and pulled it out and it’s in the bathroom.
Marlena: Oh, that’s great.
Jennifer: And I read it every morning. So yeah, no, it brings me great joy. It brings me great joy.
Marlena: That’s wonderful.
Jennifer: Sorry, but I understand what you’re getting at. I have had other things, especially when my brother died and I was younger and sort of less, I don’t know, younger and less aware of all the aspects of grief and going on after you’ve lost someone. I know what you’re getting at. There are occasionally some things or there were with David, there were occasionally some things that would come up that didn’t bring me joy that would remind me of him and…
Marlena: And the loss.
Jennifer: Yeah, and bring me more sadness and loss than joy. So it can go either way. For the most part, though, I think anyone who shares with me a memory about Bob or David for that matter, I’m just grateful in it. And it brings me joy at this point.
Marlena: That’s so wonderful. It seems to me that that ability to find joy in the memory has less to do with the memories and everything to do with the work that you’ve done internally, right? And the peace that you found.
Jennifer: I think you’re probably right about that. Yeah, that’s a probably big part of it.
Marlena: So you write hope for the best, prepare for the worst. But the thing and we’ve all heard that before, what I hadn’t thought about so much until reading your book is that you explain that the best and the worst were changing over the course of the illness almost constantly. And so my question to you is, how did you stay present with what it meant at any given moment?
Jennifer: How did I stay present?
Marlena: Stay present to what it was at that moment that was the best and what it was at that moment that was the worst and not sort of still clinging to what it was last week or last month.
Jennifer: Oh, yeah. I think when you’re in that situation, of dealing with an illness or condition that’s advancing, in my opinion, it’s really hard not to be in the moment. Because, you know, when the worst becomes pain or suffering [crostalk 00:20:05].
Marlena: That’s in your face.
Jennifer: And you adjust to the fact that no, no, that’s no good. We don’t want any of that. And the best, you know, the best feels great. It just does. It’s laughter, it’s a moment, sometimes the best feels a little sad. I can remember and this is in the book, one day, actually, in the room where I am right now, Bob and I were lying on the bed together and just kind of crying about how much we were gonna miss each other when he died and that certainly is a very best moment, but it’s not necessarily, you know, joy and ebullience. It’s more the best in terms of how real it was and profound…
Marlena: And the connection between you?
Jennifer: Yes.
Marlena: Yeah. So I’d like to explore the idea of hope with you. Because that word in the context of what you experienced, in the context of end of life issues seems really complicated to me. So there were times early on when you felt hopeful because of diagnoses that were better than expected, but at the same time, Bob would come home at times when he was still working and he’d be troubled when people held out hope for too long and pushed a little too long, traveling long distances to continue to get, you know, whatever possibility was out there to extend their lives. So given your experience, how did you find and how did you manage the line between reasonable hope and the desire to continue the fight, and what really is unreasonable hanging on too long to hope?
Jennifer: Well, so I guess that comes down to that, you know, what are you hoping for thing? I think where you run into problems with hope is when the best, you know, when we say hope for the best is still [crosstalk 00:22:55].
Marlena: The old best… Yeah.
Jennifer: Or, you know, a life expectancy that simply is unrealistic. And you don’t adjust your hope to the best being, you know, intimacy or a peaceful, comfortable death.
Marlena: Did the two of you at any time disagree about that line that the issue of what you were hoping for what the best meant?
Jennifer: No, I don’t think we disagreed. I was very, very committed to supporting Bob in whatever decisions he made. So there’s a page in the book about how do you make treatment decisions? Because, you know, there’s so many chemotherapies. There’s so many treatments and we had the benefit, you know, of him being a physician. So he was able to assess treatments in a way that I think a lot of laypeople are not able to. And so I included that in the book as, you know, a way of sharing those insights. And so he ended up trying four different chemotherapies over the course of the 22 months. There was a fifth, but he never took it. It was an oral chemo.
And he sort of indicated that he was willing to try it but then he wanted to go on a trip with a buddy and he didn’t want to have any complications. So he put it off and then he ended up just kind of putting it off and, you know, I’m not entirely sure that faced with his prognosis, I would have tried so many chemotherapies, but it wasn’t about me, it was about him. And so when he was faced with a decision as to whether to try another treatment and he would be kind of mulling it over, I would just tell him, you know, I support you in whatever you decide. I am here, I am in and I support you in whatever you decide and I just…
Marlena: What a gift for him.
Jennifer: Yeah, and I, you know, I hope that someday my situation allows for that actually, you know, I hope to go to sleep one night and not wake up. But obviously I don’t have any illness.
Marlena: Yeah, absolutely. Don’t we all?
Jennifer: But anyway, yeah, that was how we did it.
Marlena: Jennifer, so often we don’t know how to speak with someone going through your journey toward loss and death. And we feel kind of just not knowing what to say. And I think you wrote when people said you are in our prayers, that sometimes you felt like, I wish I didn’t need to be in your prayers. And so that didn’t sit well. And I guess I’d like to have you tell us a bit about what were some of the best and the worst things people said to you during that time? Just for our own edification?
Jennifer: Absolutely, I love this question. So my note in the journal about wishing that we didn’t have to be in other people’s prayers does not mean that I’m not very happy to be in people’s prayers. It just was that sense of wasn’t it great when we were the ones saying thoughts and prayers for others?
Marlena: Yes, thank you for that correction because it could come off as… Yeah.
Jennifer: Yeah, because I am grateful and I certainly became even more so as time went on, I was very happy to be in people’s thoughts and prayers. But I think it’s a very important question that you asked because so often people don’t know what to do or say, and then what they do say or do either becomes sort of another weight to add to the situation or they don’t say or do anything and then you feel really alienated, which is the last thing that anybody going through something like this wants to feel. So the first thing that I would say, my first bit of advice to anybody who has a friend who’s going through something like this is strike the word should from your vocabulary. It’s not a word that’s very helpful to the recipient.
And I would also say it’s some surprises people to learn that saying, please let me know if I can do anything, it’s not as bad as should, but it is somewhat burdensome. I am almost never going to tell you what you can do for me. And most people are like that and it adds another burden of saying, “Oh gee, I really need this. I think I’ll delegate this to so and so.” That’s just not where you are when you’re going through something like this. So I think what you do say and do, there’s another page in the book where that talks about something like our best friends in this are the ones that check in frequently and have no expectation of a response. And it has a notation at the bottom that says, you know, preferably by text.
So when I know somebody is going through something rough, I really love to send them texts that say, thinking of you, or sending you love or sending you peace and support so that they don’t feel so alone. But I’m not asking a question which would require them to actually write back to me. They can write back or they can just receive that love and support. So that was really meaningful. And it’s amazing I think other people who have been through something similar would agree. The people who come through on that will kind of surprise you, as well as some people that were pretty close to you that didn’t come through.
Marlena: Because they probably didn’t know how. It’s a very difficult thing to know how to do appropriately and helpfully and so I really appreciate, especially your second, I’ve heard the should before but not the second. And it makes so much sense to just be there, be present, show up on the doorstep, send a message, rather than what is it that I can do? So I think that’s extremely helpful. Thank you.
Jennifer: Well, and one way to do it that I found really helpful is to text in the morning and say I’m headed to the grocery store this afternoon, text me a short list, you know, of what you need, and I’ll leave it on your doorstep. So that right away, I know I have a couple hours to get that list back to this person. And I know that I won’t be expected to have some obligatory visit when I receive the groceries. So anyway…
Marlena: That’s great. And just building on that, you’ve written that the second year is harder by far. And so just again, building on the what can we do as caring friends and family? Because I don’t believe that that is a unique experience. It’s something that we’ve all heard, but I don’t think we are attuned to as much as we should be as friends and family of those who grieve.
Jennifer: Yeah, well, the second year is harder by far for a couple of reasons. One is that, you know, the first year you’re in a bit of a fog and everyone knows that the first birthday and the first Christmas or significant holiday is going to be hard. So people typically will check in with you, you know, where are you going for Christmas? You know, they’ll sort of check in ahead of time. Two things happen in the second year. One is that of course, people stop checking in about, you know, do you have plans for your birthday, that sort of thing. And the second is that the reality of the loss sets in, you know. I remember even though I have known this for a long time, I would do things in that first year, sometimes second year after Bob died.
And, you know, I went on a big trip to Europe with a girlfriend and I would come home and sort of be like, you know, have this split second as I walked in the door of thinking, “Okay, I did that. You can come back now.” You know, like I challenged myself to do some things and, you know, somehow if I accomplished that, and I went through the same thing when my brother died, and it’s not an illusion. It’s just a split second kind of thinking, “Okay, now it’ll go back to what it was.” And of course, it doesn’t. So, I would say that for what other people can do to understand this is that… So the raw grief dissipates after a while, but the loss never goes away. And then the love for the person that you’ve lost never goes away.
And that if we could just accept that more in our society that there’s those of us who have lost someone. For the most part, we wanna talk about them, we want to listen about them, you know, so that not thinking that it’s, you know, that it has some particular timeframe, and then it’s over as far as that sense of loss. You know, you learn to live with it but it never goes away. And so if our friends could just be compassionate about that, and know that that’s a reality and it doesn’t make us any less of a friend or, you know…
Marlena: Yes, absolutely.
Jennifer: It’s funny, with the pandemic, it seems like the world is starting to understand life with loss that the rest of us who have experienced it understood for a long time, you know?
Marlena: Very good point, yeah. Dr. Ira Byock, who’s another guest on this podcast, and he’s best known for his book, “Dying Well.” He talks about the fact that the dying stage of life holds amazing possibilities and moments of growth and profound meaning. Do you agree, first of all? And then, if you do, what were some of those moments of meaning of growth of possibilities for Bob at the end?
Jennifer: Growth and possibility for Bob or for me as a survivor?
Marlena: Well, I think it could be both. But I think the most remarkable part of his message is that even as the person is dying, he distinguishes that from a good death, which is, you know, that’s death and he says, “I have no idea if a death is good or not good. We really haven’t had anyone really come back from death to tell us.” But that dying is still a part of living and that as we’re dying there are tremendous possibilities for growth, for greater awareness for completing relationships for… And he sees that period of dying as rich and fertile for possibility for growth. I mean, clearly it could be for you as well. But I think the part that is most remarkable about his message is that the person dying can be growing, right?
Jennifer: Yeah. So I think Bob did experience that. What was interesting about our situation is that, you know, Bob was a hospice and palliative care physician like Ira Byock. And so he had seen death a lot over the years. But other than his two parents, both of whom lived into their 90s, he had never experienced the death of a loved one. I mean, losing your parents when they’re in their 90s, you know, that’s pretty natural.
But he had not experienced just that premature loss, that sense of it’s too soon. And so there were some sort of nonclinical things that I think he discovered in the process. At one point, he said to me one day, “So do you think I’ll see my parents?” And, of course, I said, “Well, yeah, I mean, I, you know, I’ve lost a lot of people and I have great faith that I will be reunited with them in some way at some point.” And so I said, “Yes, I do.” And I think this certainly was pleasant to him, but his two parents were the only people he was imagining, you know?
Marlena: Right.
Jennifer: Right? The only reference points that he had. And so over the next, I don’t know, it must have been a day or so I finally came to Bob and I said, “You know what? I know some people who will be there for you.” And I said, my mother’s name was Victoria, and my grandmother’s name is Babe. And they, I guarantee you, cannot wait to meet you. And so we talked about some of the people that I lost that were so dear to me that I knew were gonna receive him and I think that gave him a lot of comfort. We talked about it a few times. And I think he, yes, he started to sort of grow into that notion that the world, you know, that it wasn’t as simple as the clinical side.
So yeah, I think he did. I certainly think he experienced some things in the…not necessarily in the active dying period, but in the latter part of the illness, where he had some realizations about kinda how tough some of the things that he had been asking his patients to do all these years, you know, how difficult they really were. So that was certainly, I think, some growth and development. But, you know, of course, that is as Dr. Byock says, “That kind of comes too late for any of the rest of us to benefit from that.”
Marlena: Right, but great benefit to him, and to his sense of wholeness at the end, which I think is what Ira is often referring to, yeah.
Jennifer: Yes, and I would say the other… So a couple of things happened. One is that I put together when Bob was very much actively dying, but still in our home, I put together a tableau of pictures of those people who had died, that I loved who had died before him, and some of his things and a picture of the two of us to sort of to make that introduction. And then I think that that other journal entry that’s in the book about his actual death is, you know, I don’t know about growth, but I know that that isn’t… I’ve been through it enough times personally now, with someone I love who’s dying, that they do it the way they mean to do it and that there’s great meaning in some of the specifics of it. And I just firmly believe that they’re doing that, you know?
Marlena: Yeah. I’d like to talk a bit about anticipatory grief. My husband and I are well, as far as I know, but we’re getting up in age and I can tell you that I experience anticipatory grief regarding the day when one of us leaves the other. You write that 40% of widows report that anticipatory grief is worse than the actual grief after death. And I’m wondering, how did you honor the anticipatory grief that you surely felt without allowing it to spoil the moment, the precious time that you had together?
Jennifer: How did I do that? Well, the first, you know, with so many things, the first step is simply being aware that that’s the objective and being self-aware sort of recognizing in a moment of sadness or anger or frustration okay, what’s really going on here? Well, what’s really going on here is that, you know, I’m upset that I’m crazy about this guy and he’s gonna die. And so I think the main thing is self awareness and knowing, you know, sort of processing the components of your thoughts and feelings in a way that you can identify them and then manage them.
Marlena: Yeah, does it get back to that thing about you only have one shot?
Jennifer: Sure. Absolutely. Yeah. That you only have one chance to get it right and that yes, there’s going to come a day when he’s gonna die. And there’s gonna come a day when he’s gone and how will I feel if I wallowed in my anticipatory grief and wasted time, wasted energy on that?
Marlena: Yes. So at the very end after a few terrified days, Bob said he was at peace about dying. And he said to you that his main worry was about you. And I am experiencing tears in my eyes right now. Was that worry a gift or was it a burden for you?
Jennifer: Well, you’re referring to a page that was his gathering hope life interview. So one of the really neat things that’s happening in end of life these days are these…some people call them gathering hope life interviews, some people call them legacy interviews. The VA has a program that’s storytelling and it is someone who comes in and asks, you know, with a recorder on asks some open-ended questions. And the person who has been diagnosed with a terminal illness, you know, talks and answers them and then that’s transcribed into a document.
And so, Bob did that. One of the fellows that he or one of the palliative care physicians that had been in Bob’s training program, Clark Smith, had trained and been certified in this Gathering Hope, Life interview and asked Bob if he would do one and so that is… There are three excerpts from that interview in my journal. I did not participate in that interview, I wasn’t present for it. And I didn’t read it until after Bob died. It just felt like it was not my place to do that, and I knew, you know, I knew he was dying and I knew that I would be able to read it at some point it just didn’t seem like it was appropriate to put a bunch of pressure on. That’s funny about that.
So I read it after he died and so he’s speaking to Dr. Clark Smith on that saying yes, he was terrified for a few days, and he was. And then kinda settled in with the reality and then said, you know, that he was worried about me that that was the only thing that he felt like he really couldn’t, you know, be sure about was that how I was gonna feel and that’s when Clark, previously as his student or trainee, you know, said it’s like you always say, Bob, it’s the patient is gonna be fine. It’s the family you worry about.
Marlena: That’s right.
Jennifer: Yeah, so that was a really meaningful circle.
Marlena: So it’s just I wanna say to our listeners that if you read this book, when you read this book, you will experience tears and you will laugh. I just so love your post mortem note about diapers and I’ve got it written in front of me here. So Jennifer writes, “If I ever get serious with a man again, a good screening question might be, are you man enough to wear the diaper? This was one of those lines that made me wanna laugh and cry at the same time. So would you give our listeners a context for that line?
Jennifer: Sure. I was lucky enough to find Diana Denholm’s book, “The Caregiving Wife’s Handbook” which is absolutely fabulous. And I read the book and I noticed, there were two things about the book, I noticed that when I was reading it, I had the physical book. So when I was reading it and holding it in front of me, Bob had this sort of visual reminder, right? That I was actually taking care of him. And so he’d be a little less kinda hard on me when he had that visual reminder.
And then it also stimulated some really great conversations because she goes through some of the typical things that male patients do and don’t do and that sort of thing. And so Bob and I would talk about, you know, I would say to him, you know, like, “Does that really happen?” And he would say, “Oh my gosh, I see it all the time.” And so one of them was apparently on the part of male patients who need, you know, who had lost control of their bowels, they need to wear a diaper and apparently a lot of adult men are very, very reluctant, unwilling to do that, even when it is clearly, clearly necessary.
And so I’m reading this and it’s just unpalatable to me that, you know, somebody would not say, “Okay, this is not good. I need to put this thing on.” And so I asked Bob about it. I said, “Is that real? Is that for real?” And he said, “Argh.” He just kinda shook his head and said, “I see it all the time. The guys just don’t wanna wear the diaper.” And then he turned to me and said, “You don’t have to worry about that with me, Jen. Even when the time comes, I am man enough to wear the diaper.” And so it gave me great relief that, you know, he was not gonna fall into that category. And then I started to think well, you know, might be a good screening question.
Marlena: Good screening question. So you guys out there, are you man enough to wear the diapers is what we want to know. That’s great. Jennifer, you got everything in order. Like you mentioned earlier, you downsized. And it was important for you to get this all done so that when the time came for Bob to die, you’d be loving him and mourning him and missing him but not doing all the mundane stuff and you wanted to get it done beforehand. So in retrospect, what were some of the most helpful preparations?
Jennifer: Oh, you know, we lived in a big old house and it was absolutely beautiful, but it was big and old. And so the fact…
Marlena: A lot of work.
Jennifer: Yeah. So the fact that we went through it and downsized and, you know, bestowed gifts to people or headed to goodwill or all those sorts of things and just got down to the, you know, the stuff that really mattered and we sold it and moved into a condominium and it was not easy. It was very difficult to leave that home, but we made a new one and we had some time here before he died. And so, you know, that was an incredible gift to have to do all that by myself after his death it just would have been devastating. And a lot of the things that were special to him that he wanted to make it to certain people, you know, that wouldn’t have happened.
But because we were willing to talk about it and I was willing to kind of track it all and make notes and get it done, that was huge. You know, there were lots of paperwork things that we did. We put the cars in my name, lots of administrative kind of things. He basically planned his own memorial service, which was wonderful so that, you know, I didn’t have to. To me, it’s just a shame when you spend energy and time in consternation instead of in love and grief.
And that goes for before the death decisions as well, you know, so that’s why advanced directives are so important because, you know, to have to wring your hands about whether somebody would want to be intubated or not but to know exactly what they want and to have that confidence that you’re carrying out their wishes, not your wishes, not, you know, the adult children’s wishes. Their wishes and that everyone knows that it is just a gift. It is an absolute gift. It does not hasten the death, it does not make it any less sad, it doesn’t make you love them any less, it just removes the confusion and the burden and the struggle.
Marlena: Yes, what an important message for all of us. Jennifer, if there were one last thing you’d like our listeners to hear, anything that we have not covered, what would that be?
Jennifer: It would be that death preparation is love demonstration and is intimate and that it is a great act of love to hold conversations. And I say conversations because it’s never finished in one. And furthermore, if you can too go ahead and document. That’s just an incredible act of love and intimacy. And I would encourage everybody, especially in this time of pandemic, to do that. It’s never been more important.
Marlena: Jennifer, thank you so much for sharing your journey so openly and vulnerably. This was wonderful.
Jennifer: Marlena, thank you. It’s been a pleasure and you’re very easy to talk to.
Marlena: Thank you.
Profoundly real authentic story of caring for someone you love when they are deeply in need.