Hope for the Best, Prepare for the Worst: Artistic Insights on End-of-Life Care
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Summary
Understanding “Precious Time”
In our latest episode of the LightAtTheEnd.com Podcast, I had the privilege of speaking with Jennifer A. O’Brien, a healthcare executive, advocate, award-winning author, and artist. As the creator of The Hospice Doctor’s Widow: An Art Journal of Caregiving and Grief, Jennifer offers a poignant perspective on end-of-life care, grieving, and how art can be a companion through it all.
Jennifer shared the term “Precious Time,” coined by her late husband, Bob, a hospice and palliative care physician. This concept emphasizes recognizing the period where death might be imminent, a phase for expressing love, regrets, and resolutions. It’s a tender reminder to cherish the moments with loved ones, which Jennifer beautifully encapsulates in her art journal.
From Art to Art Journal
Jennifer’s venture into art began organically, as a source of solace following personal loss. This transitioned into an art journal during her husband’s illness, blending her collage artistry with documentation of their shared journey through cancer. Her work serves as both a personal cathartic process and a resource for others facing similar paths.
Publishing The Hospice Doctor’s Widow
Drawing inspiration from both personal experience and professional insights from healthcare, Jennifer discussed how her journal became a published work. Encouraged by a colleague who saw its potential to aid others, she partnered with an independent publisher to bring this unique blend of art and narrative to a broader audience.
The Role of Palliative Care
Our conversation also dove into common misconceptions about hospice and palliative care. These services, often misunderstood as synonymous with giving up, are instead about enhancing quality of life at the end. Jennifer advocates for early and frequent palliative consultations as part of comprehensive healthcare—a message she hopes will reach both patients and practitioners.
Anticipatory Grief and its Impact
An eye-opening part of our discussion was on anticipatory grief—the profound sorrow that hits before a loved one’s passing. Jennifer highlighted the importance of recognizing and processing these emotions to preserve the quality of the remaining time together.
Support Networks for Caregivers and Grievers
Jennifer emphasized the power of small gestures, like regular check-ins without expecting a response, to support caregivers and grievers. This simple act of connection can provide immense emotional support, reducing the isolation often felt by those caring for or mourning loved ones.
Choosing Quality of Life
Reflecting on choices near the end of life, the discussion touched on societal narratives that frame cancer battles as win-lose scenarios. Jennifer advocates for shifting focus to personal quality of life preferences, encouraging open dialogues on end-of-life wishes long before they are needed.
Navigating Life after Loss
Jennifer candidly discussed aspects of life as a “solo ager”—adjusting to navigating emergencies and daily routines without a primary partner. Her reflections provide comfort and guidance for others in similar situations.
A Message of Love
Our conversation concluded with a powerful sentiment from Jennifer’s art journal: “Love is Greater Than Death.” This profound message illustrates Jennifer’s belief that the bonds of love transcend physical loss, offering a hopeful lens through which to view grief.
Jennifer’s insights resonate not just as a narrative of caregiving and grief, but as a universal invitation to approach end-of-life conversations openly, with courage and compassion. Her journey underscores the importance of preparing for life’s inevitable challenges while cherishing every moment of connection.
For those interested in exploring Jennifer’s work further, both of her books, The Hospice Doctor’s Widow and Care Boss, are available through her website or wherever you prefer to purchase hard-copy books. Her artistry and advocacy continue to illuminate the path for those navigating the complexities of caregiving and bereavement.
FULL TRANSCRIPTION:
Hope for the Best, Prepare for the Worst: Artistic Insights on End-of-Life Care
Kevin Berk: Thank you for joining us on the LightAtTheEnd.com podcast. LightAtTheEnd.com is a resource for those who want to learn more about end of life topics, but don’t know where to start. I’m Kevin Berk, and I’m joined today by Jennifer A. O’Brien, healthcare executive, advocate, award-winning author, and artist.
It’s so good to be with you, Jennifer. Thank you for joining me today!
Jennifer A. O’Brien: Thanks, Kevin. It’s a pleasure to be here.
Jennifer’s Journey into Art and Grief
Kevin Berk: So, we got connected because I had done a podcast with Susan Hannifin-MacNab, and she had recommended that I get in touch with you, and so in advance of connecting with you, I bought the two books The Hospice Doctor’s Widow and your newer one, Care Boss.
We talked just briefly enough to know that we were going to cut this in half and only talk about one of them today, which is The Hospice Doctor’s Widow An Art Journal of Caregiving and Grief. Can you talk a little bit about what, um…, what gave you your start?
Jennifer A. O’Brien: Absolutely. So, interestingly, my work as a self taught artist has come out of the deaths of a couple of loved ones. My brother died when I was 18, he was 13. My mother died not quite 20 years later. And following both of those deaths, I found some comfort in exploring my artistic tendencies.
Again, totally organically, self taught, not something I learned in school. But especially after my mother, I took my mother’s ashes (she was cremated) up to where my brother is buried in northern New Mexico to scatter them. And after I did that, I attended this little workshop on what was called art journaling, which I didn’t even really know what that was, and, I loved it. and it really started me on a collage and assemblage type journey, if you will… many, many years ago, 20, 21… years ago. almost 22 actually.
Just um, you know, putting stuff together, cutting stuff out and pasting it, quite literally in the analog form, such that when my husband, became ill with cancer (my mother had died of cancer.) I turned to the art journaling, just as a form of self care. But the twist on it, when my late husband Bob got sick, was that I started to try digital collaging, which was quite the challenge. It was a kind of a perfect combination of head work and heart work, right? Because I knew what I wanted the computer to do and how I wanted it to look, but I wasn’t a hundred percent sure how to make it do it do that, and so it was this really wonderful combination of both those types of of exercise, of work.
I started the journaling, almost instantaneously after Bob got the diagnosis, he was diagnosed with a renal clear cell carcinoma that was already metastatic and stage four just to document my thoughts, my feelings, and Bob was a hospice and palliative care physician, so I really wanted to document some of his wisdom, and thoughts and feelings. Interestingly, I don’t know that Bob knew I was doing the journal, as I look back on it. I’ve been asked about that. He never saw any of it. So I I don’t think that he knew about it. Um, But anyway,that’s how my self-taught artistry came to be.
I think just backing up a little bit since I didn’t know what an art journal was when I went to that first workshop for your listeners, you know, an art journal is kind of what it sounds like. you create art. Some people paint. I am not skilled at that. but I am skilled at collage.
So I do collage. and then I write the journal notes kind of on top of the collage in most cases. and then there’s some other pages that are stuck in there throughout that are the emails that I sent to our friends and family to update them on how Bob was doing.
So the word that I continue to be hesitant to use is “scrapbook”. like I inserted some things in this journal that I felt needed to be there for my sake, just to kind of have a sense of chronology and hit on topics that I felt were important, that were important to me to preserve.
Creating The Hospice Doctor’s Widow
Kevin Berk: How did The Hospice Doctor’s Widow become something that you published or wanted to publish?
Jennifer A. O’Brien: Yeah, good question. So I have, as you mentioned in the introduction, I have been in health care, my entire career, 36 plus years. I like to say I started when I was 12, but I didn’t. So I started the journal, as I said, right when Bob got the diagnosis and I kept going with it.
Of course, there was a period of time when Bob’s care required such intensity that I couldn’t get to the computer and do any digital collages. So I made notes in a traditional like pen to paper, kind of notes and pictures in a book. And then after he died, the journaling continued. I got back to the computer and did the ones that, that I had sketched out. And then I also did a lot of grief work in the journal after he died.
I took one of those interim leadership positions with a very large multi-specialty practice here in little rock, Arkansas, which is where I live and I had finished the journal. one of the physicians, a neurologist, told me one day about how he was in the process of diagnosing three different patients with ALS, which is a terminal diagnosis.
And so I brought my journal in to him. He had known Bob and, you know, knew our story a little bit, but I brought the journal in and he took it home that night and he came back the next day and said, “yeah, Jen, you’re not getting your journal back. I will be loaning it to these three patients, moreover to their spouses, because what you’ve documented there is something that will really help them in what’s ahead of them for them. And if you could figure out how to get this thing published, I think it would really help a lot of people.” There’s a point in,in learning to carry one’s grief. that you turn a corner and the weight of the grief becomes light enough that you start to think, “how might I help other people?” I was at that corner, when he said, “you need to figure out how to get this published because it could help some other people.” So, you know, I was just like, “wow, okay, let me do that.” And I found an independent publisher that was willing to take a chance on it because it is, as we’ve alluded to the book, it’s, eight by 10, it’s premium color.
It’s got a lot of art, a lot of pictures… it’s a picture book of sorts. but it’s about caregiving, end of life, and grief, it’s a atypical book to say the least. There wasn’t anything out like it, and dare I say there has not been anything out since, that’s quite like it. But this small publisher took a chance and it went out into the world. And it has indeed helped thousands of family caregivers with what is, you know, the most difficult thing that we do for the people we love.
Kevin Berk: And you added on to it, more recently with a second edition.
Jennifer A. O’Brien: Yes, so I recently changed publishers, as the second book came out and then I reissued The Hospice Doctor’s Widow, as a second, a second edition,and it has three big differences: the subtitle was augmented, it used to just be The Hospice Doctor’s Widow: A Journal, that was apparently confusing to people, so it is now called The Hospice Doctor’s Widow: An Art Journal of Caregiving and Grief. It has an absolutely beautiful but short, foreward written by Elizabeth Copland, who is a Pulitzer nominee for, a play she wrote and just, an incredible, productive person in the space of, “out of grief comes art”. And then there are nine additional art journal entries at the very end of the book that are all after-loss, grief-processing type journal entries, and I think those have rounded it out nicely, and made it a little bit more equal on the caregiving and the grief side of things.
Kevin Berk: Yeah, I agree.
“Precious Time”
Kevin Berk: I was hoping that we could talk about some specific pages, because I think that there’s, there’s a lot that is very universal. There’s a lot that’s very profound. I feel like if we were to talk through all the pages that, really struck a chord with me, we’d be talking and/or showing or having you read half the book, so I’ll keep it to, some of my, I guess favorites, or ones that I think are, have just really interesting talking points around them, starting with, the concept of precious time that you said was a phrase that your husband, Bob used as a palliative and hospice care, doctor.
Jennifer A. O’Brien: Well, why don’t I read the page and we’ll start there.
Kevin Berk: Great!
Jennifer A. O’Brien: Precious Time.
He has helped families understand by telling them they were into “Precious Time.” Meaning death is likely, if not imminent.
Precious Time is when you say what you need to say and don’t say what you will later regret.
Now it is us. We are into Precious Time. He’s going to die of this disease and I will go on and have to live with how I handled our Precious Time.
So what’s important, I think, about that is, first of all, he always put the emphasis on the first word, I’m a Yankee, he’s a Southerner, was a Southerner. I thought that was a Southern thing, like, you know, Southern people say insurance and umbrella. They put the emphasis sometimes on the first syllable or word, but that’s not what it was.
It was to distinguish that this is a distinct period of time. It comes at the end of life when death is coming. Bob and I both… Bob mostly from his professional experience because he had very little personal experience with the death of loved ones, and me with my personal experience, felt really strongly that knowing that death is coming, as hard as it is to know this, is super important because there are no dress rehearsals, right? There’s no do over in the end of life of a loved one, and you do, you go on and you have to live with how you handled it. And so his way of telling families that the end was coming, that the person they loved was dying was to say: You’re into precious time and precious time is when you say what you need to say. Precious time is when you say your I love you’s and your thank you’s and your I’m sorry’s, and you don’t say stuff that’s going to open up a whole bunch of stuff that you can’t resolve by the end of the person’s life. That’s why you stick to, “I’m sorry” and that sort of thing. And I know that it was effective because he received thank you notes from surviving loved ones that thanked him for being forthright enough to share with them that this was coming, when many other physicians and healthcare professionals are unwilling to say the end is coming. And so this was just this lovely way that he could communicate this. Everyone knew what it meant. It’s not uncertain, and yet it’s softer than “your person’s dying”. And so Precious Time actually has become larger than the book itself in some ways, certainly within the healthcare community. It’s a method that is now used by lots of nurses and doctors to try to communicate this.
Not as many as I would like, because there are still many professionals who are unwilling to be as forthright about end of life as families really need them to be.
Kevin Berk: Yeah, that was one of the conversations… In fact, the first podcast I did with Dr. Jeffrey Stoneberg, who is a Medical Director for Palliative Care had said that in his experience, so many people, whether it was the doctors didn’t want to give bad news or, or just were speaking over their heads or something… so many people and their families would go on to hospice care and really didn’t understand what that meant.
And were saying, “oh, okay, well, how long will they be on hospice before they can go? And it’s like… somebody hasn’t prepped you properly by talking to you about what this actually means.
Hospice and Palliative Care Insights
Jennifer A. O’Brien: Yeah, hospice is, a prognosis that you will die within six months or less. but what’s interesting about hospice is the average length of stay on hospice is only 91 days. we are not. as a society and in healthcare, we typically,refer patients to hospice later than they would benefit from. for cancer patients, the average length of stay, depending on the study that you read, is either 17 or 19 days. So even when someone understands that, when a family understands that hospice is end of life, they frequently think, “Oh, I’ve got six months.” And you don’t have necessarily six months, you might have six months, you might have longer than six months, but the average length of stay for cancer is about three weeks, and for other illnesses is about three months. And so, yeah, that’s an important, important issue to know. The other thing that I think a lot of professionals in healthcare mix up is the difference between hospice and palliative care, because palliative care is not hospice. They have a lot of things in common. They are both interdisciplinary teams that includea physician, an advanced practice nurse or PA or nurse practitioner, a palliative care trained social worker, a palliative care trained chaplain, and often somewhere in the back room is a, palliative care trained clinical pharmacist.
I say Palliative Care: Go Early, Go Often! If you get diagnosed with a major illness, chronic, terminal, or otherwise, ask for a palliative care consult right away. If the professional tells you, “oh, no, no, no, no, no, it’s too early for a palliative care consult”, then you have someone who really doesn’t understand the difference between palliative care and hospice because it is never too early for palliative care. End of life is the one healthcare issue that every single patient of any doctor or nurse will face, and yet it is the one issue that med school and nursing school and all the training doesn’t touch.
Kevin Berk: Has that changed? Is it moving in the right direction, at least?
The Death Positivity Movement
Jennifer A. O’Brien: I think ever so slowly, And incrementally it is moving. And it’s moving not so much within healthcare, but because of a movement called Death Positivity, which says: why aren’t we talking about this thing? Why are we leaving the most important thing in our lives and in the lives of our loved ones up to chance? Why are we doing that? And so death positivity says, Hey, let’s just talk about this. Let’s look at it in a different light. Let’s look at it in a real light. Let’s look at it in a positive light. Some death positive people are looking at it humorously. You know, whatever, Whatever it takes, let’s look at it,let’s talk about it because it is going to happen to every single one of us.
Kevin Berk: And we’re still normalizing the conversation to be one that people can have without saying, “there’s always time to talk about that later. I don’t want to think about that now.”
Jennifer A. O’Brien: Right.
Kevin Berk: The figures that you referenced just in conversation now, but also in Care Boss about the amount of time that people are on hospice care, and particularly with regards to a cancer diagnosis, those ones are pretty shocking, just short the average is. And in fact, it sounds like Bob felt like he knew everything. And you mentioned in the book
that when he finally decided that he was ready for hospice, I mean, it was what, 10 or 10 or 12 days away from [his death]?
Jennifer A. O’Brien: Exactly. Bob was no exception. The decision, especially – in my opinion – especially in cancer, the decision to transition to hospice status and remembering, for your listeners: hospice is not necessarily a place. Hospice care is most often provided wherever the patient lives or is able to be cared for.
So maybe they move into a relative’s home. Maybe it’s in a nursing home. Maybe it’s in their own home, but hospice is a status of health care, not necessarily a place. There are inpatient hospices, but those are very infrequently used. But the transition to hospice status, especially in cancer, is just a really tough one.
And this comes, I think, a lot from our societal notion of what I call the “war language” on cancer. So “we will fight it”. “[So-and-so] lost his battle with”. This is a misnomer of great proportion, if you ask me. To utilize, sports and war language with an illness like cancer is a big mistake.
It is so much more than that binary win-or-lose situation. And my husband died of cancer, and I can tell you right now he was not a loser. There was nothing about him that was a loser. He was an incredible man and, and led an incredible life and had a peaceful and dignified death. And there is nothing about that, that isloser material. So it, it’s a mistake, I think,to set things up that way. But it does happen.
And I really think that it’s important to start out with the question of: what am I really looking for for the rest of my life in terms of quality, and what do I want the rest of my life to look like now with this diagnosis, and at what point are the side effects from treatments, or the disease itself, infringing upon just getting good time, precious time with family and friends and loved ones so thatI can say my goodbyes, I can enjoy my time, and we can focus on just comfort and dignity and whatever it is you need to, to complete your life. So yeah, it’s, it’s unfortunate, but I feel like, you know, with podcasts like this, if we start talking about it before we get ill, if we start normalizing discussion about end of life, that’s a really positive move because I can tell you from experience that it gets a lot harder to have those conversations after someone gets a diagnosis.
They’re still important, but they are more difficult when someone gets sick. It’s incredibly helpful after someone gets sick, to have had previous conversations when everyone was well. You know, I wanted every possible treatment or I didn’t want every possible treatment in the abstract. Now that we’re into the reality, I’m balancing what I want and what I don’t want. And we’re sorting that through as we go, and it is super important to keep those lines of communication open.
Kevin Berk: And to create those records, right? So that…
Jennifer A. O’Brien: Absolutely!
Kevin Berk: …there is something to refer back to.
The Right Choice for a Person is Their Choice
Kevin Berk:On the page of the book that has the photo that I’m, I’m guessing are Bob’s folks that says eat, “Eat Lots A Fish” on it, it talks about how his parents had very, very different, approaches and opinions about how they wanted their ends to come. And it sounded like one of them wanted every last heroic effort to be made to keep them alive for as long as possible. And the other was, was sort of the opposite end of that and wanted only to be around for as long as they had quality of life. And that page makes the point of: the right choice for a person is their own choice.
Jennifer A. O’Brien: Absolutely. It was wonderful for Bob to have this example within his own family. His parents, both lived into their nineties and they were very different. His father said, the minute I start showing cognitive decline, you keep me comfortable until I die. I don’t want to extend, anything, and his mother was the polar opposite, you know, every life extending measure. This is entirely how we are in the United States.
So, in 2013, Pew Research did a study asking the question, “if you had a disease with no hope of improvement…” and then they offer three different scenarios, suffering a great deal of pain. 57 percent of people said, just keep me comfortable till I die. 35 percent said, every life extending measure.
The second variation was “you have a disease, no hope of improvement, and the illness makes them totally dependent on somebody else”, the gap closes, 52 percent say, just keep me comfortable till I die, 37 percent say, no, no, no, no, I want every life extending measure.
And then the final variation is that it was hard to function in day to day activities. And in that one, we have an absolute even split: 46 percent say just keep me comfortable till I die, and 46 percent say, no, no, no, no, no, I want every life extending measure. And this knows no cultural bounds, no ethnic bounds, no racial – right? – bounds, familial bounds…Bob’s parents are a perfect example of this. That your sister, who you have been close with forever, may have the absolute polar opposite idea of what she wants than what you want.
And so this is essential to talk about. Essential if you have a loved one who is 18 years or older, you need to have this conversation today. Absolutely, today. Because you don’t know if they’re going to be in a motor vehicle accident, you don’t know when someone’s going to have a stroke, and you need to have that conversation, so that you have an idea, should they be unable to make decisions for themselves, as to which end of that spectrum they were on?
Kevin Berk: Well, and my sister and I just on Friday got together with my folks for lunch and to go over their, previously established advanced directives and my father had actually changed his opinion, from saying sort of every life-sustaining method that can be done should be done, and no longer feels that way. He is much more coming over to the side that the rest of my nuclear family is on, which is just quality versus quantity.
Jennifer A. O’Brien: And so in revisiting that we were able to adjust what the expectations were and what the directives were, frankly. Two excellent points: one, that your opinion can change about this, and there’s nothing wrong with that. So not only have the initial conversation, but periodically touch base. And Bob and I used to do that periodically, especially after he got sick, you know, I would say “you used to say this, do you still feel that way?” And, in his case, he said, “yeah, I still feel that way.” The second thing you bring up that’s important is this notion of quality, right? So that is quality, whatever someone wants, that is their quality. So, you can say quantity over quality, but the truth is that if I want every life extending measure, then that is what I consider to be high quality. So keep that in mind, because we always have to meet the person where they are, if we’re going to be effective in supporting their choices, their decisions, not ours.
Kevin Berk: That’s a great point.
Jennifer A. O’Brien: When it’s our death, we’ll do it, we’ll do it our way. but for the case of the people that you care about, or in the case of healthcare professionals, always meeting the patient where they are and helping the rest of the family.If there’s a difference, you know, helping the rest of the family see that we need to be where the patient is.
Kevin Berk: I think that’s a great point, Jennifer, thank you for, for saying that because I always think of the quantity versus quality thing to bepretty binary [on this topic for me], it’s one or the other but it’s interesting to hear you say, “well, the quantity, however it is, that is their quality”, which I hadn’t really considered.
Anticipatory Grief and its Impact
So you have a page on anticipatory grief, which is a concept that I feel like a lot of people are familiar with, but maybe don’t know the terminology They’ve probably felt it, but don’t know what exactly qualifies as anticipatory grief. Can you read the page that you have about that and talk a little bit about that?
Jennifer A. O’Brien: Sure. Anticipatory grief. Grieving before your loved one actually dies. It’s real. It can be huge. In one study, 40 percent of widows reported anticipatory grief as worse than the grief after the death. I am suffering from anticipatory grief. The key is honoring my anticipatory grief while not allowing it to spoil the time we have left together.
Kevin Berk: How did that manifest itself for you and for your husband, Bob?
Jennifer A. O’Brien: As I mentioned earlier, I had lost my brother at a young age, and my mother, before I even met Bob. And I knew how utterly painful it was, the depths of grief. I knew how bad it was going to hurt when Bob died.
Yeah, so actually it was a friend of mine who I was describing to her and she said, “Jennifer, that’s anticipatory grief.” And I looked it up and I, all of a sudden that was very helpful to name it and claim it and acknowledge it,honor it,but have it have its place and not let it spill over into ruining our, precious time, our time we had left together.
Supporting Caregivers and Grievers
Kevin Berk: Sure. Another page that you, that you have that I think Is such a such a great one, such a powerful one, that has a picture of a mobile phone that says “our best friends in this are those who check in frequently yet have no expectations of a response (preferably by text message.)”
Jennifer A. O’Brien: I think this is true in the caregiving space and this is true for grievers as well. We get forgotten,caregivers especially… both actually, just forgotten. So, as the friends trying to support the caregiver or griever, frequently our tendency is to say, “what can I do to help? Let me know what I can do to help.” The problem with that is it really puts the onus on the caregiver or griever to try to determine what I need, and then to tell you what I need, and I don’t have it, I can’t do it. I can’t identify what I need. I can’t, I certainly am not going to tell you, what I need.
And then, and the other thing that happens is, people think of the person who’s sick… a lot. “Oh, I better check in with Bob because, he’s dying”, but they don’t always think of the person who’s taking care of the person who’s dying. And then similarly with grief, there’s usually a sort of a flood of activity and, messages and notes and flowers and casseroles, and then it really dies off and this profound loneliness sets in.
And I have a list myself of a number of caregivers and grievers in my life that I just once a week or so text them a little red heart and the message is simply: “I haven’t forgotten you. I am sending you support and love. I’m here.” And I have no expectation that they will respond. I sometimes tell people that at the beginning, “I’m just going to check in. I’m going to send you, I’m going to send you messages of support. Please don’t feel like you have to respond.” And I do that pretty regularly and on the receiving end in, in that caregiving and grieving space, it really is a godsend.
Kevin Berk: Yeah, I, I feel like that’s one of those things that’s going to be very personal, Some people will want to be told, “I am going to do this for you”, or or ask the question, “what can I do to help?” Which in your case, you said it was just not really very helpful. I know that in talking with my cousin about the loss of his son very tragically, and how completely the family unit changed after that, he said a lot about how they were blessed with a lot of very close friends and family, but he said that really just was an incredible shock, not only to them, but then all of their relationships and some people didn’t seem to know what to say and so didn’t get in touch or were there up through the funeral, and then when anniversaries rolled around, didn’t really know how to deal with it, didn’t know what to say or not to say, and so just kind of went quiet.
And granted, they gained a lot of new friends during that process, but I think there was still sort of a shedding of people because maybe they didn’t know how to address the awkwardness that, that comes particularly in Western society, where we’re not having the conversations early and we don’t know how to talk about it.
Jennifer A. O’Brien: I think that’s absolutely true, Kevin. I’ve had the experience before where on let’s say, Bob’s and my anniversary, that’s a big day for me and we all approach them most of the time knowingly. I’ve had the experience one day I can remember specifically, I went into a little gift shop that I love and was thinking of treating myself to something on my wedding anniversary with Bob. The owner and shopkeep, is a friend of mine, and I said, today was our anniversary.”
And she got kind of, oh, you know, sad. So sorry. And it’s just like, yeah, I guess. I mean, of course it’s sad. I would love, I would love to be celebrating my anniversary with Bob, but, you know, it’s a day of love. So, um, I don’t know, it just It’s not downbeat… necessarily. it’s hard. But I think that there’s ways to be a little neutral about it. I think a lot of folks worry that if they bring up the person that somehow they will be reminding us of our grief, but the truth is: we never forget, and we really want, most of us, love to hear about our person, who has died. We love to talk about our person or persons who have died. It’s not a taboo topic. For some people it’s painful. So there, I would just say, if you’re unsure, ask. “I have a great memory of, your mother, I’d love to share it with you if you’re open to it” and let the person say, “yeah, I’m open to it” or “maybe another time.” But absolutely, important to talk about our loved ones.
I live in Little Rock, Arkansas, and I’m not from here, and people ask me a lot, “Why do you stay? why don’t you move back home?” I grew up in New Mexico, as I said earlier, and, I spent some time there each year.
And the reason I don’t at this point, the reason I stay in Little Rock is because my husband, my late husband was, a very, popular and hardworking physician in this town, and it’s a small town, and I will frequently have people approach me in the grocery or at a meeting, wherever and say, “can I tell you a story about your husband?”
Kevin Berk: Ah!, It’s lovely. It’s just wonderful. The answer is always yes. I always want to hear stories about Bob, and I stay here because of that. And I frequently, as I spend my summers in New Mexico, because the people there knew my mom, my dad, and my brother, and will tell me about them, yeah.
That’s wonderful. You know, as we said, it’s probably person by person, and you’re trying to read the room about what somebody needs. It’s something I want to do a future LightAtTheEnd.com Podcast on is on behalf of the people who know they want to support the person that they care about, but frankly just don’t know how to do it or feel it’s awkward. Don’t know what to say, what not to say. So I think that’s definitely a subject for further later discussion.
Jennifer A. O’Brien: How to be a better friend to a caregiver or griever.
Loving Thoroughly
Kevin Berk: Exactly. another page that I really, was taken with was the one that said, “I can’t pull away the regret after he dies will be unbearable. I want to know that I loved him thoroughly. That’s my goal from now until he is gone.” I’m wondering if you tried to keep that as a little bit of a mantra of sorts on the not so good days of which you indicate there were many.
Jennifer A. O’Brien: There were many. there were many not so good days. it is not uncommon I know I’m not alone in, in having moments and days when I wanted to run away. I don’t have the statistics offhand, but there are significant statistics about divorces after a cancer diagnosis.
and so what I would do to manage it was to play it out in my head: “how is it going to feel if I run away and he dies, which he’s going to die, how am I going to feel about myself after he dies and I have run away at some point?” And the answer was terrible. I’m not sure I could live with myself.” And so that was what kept me going.
It, it was a, just a great honor to be there. with him, to his last breath. And,it was also incredibly difficult, but moreover, it was an honor and, it,it was, necessary, important, essential.
You know, when I would play it out in my head, I just, I just couldn’t, I couldn’t leave. I couldn’t run away.
Kevin Berk: You also said at one point,”Sometimes I wish I would be diagnosed with cancer and beat him to the finish line.”
Jennifer A. O’Brien: Yeah. I don’t think I’m alone in that. Many cancer patients have talked about how isolating the diagnosis is, how that once they get the diagnosis, you know, lots of folks disappear, friends disappear. They don’t know what to do. They don’t know how to handle it. Almost like you have the cooties or something like that, right? They kind of scatter.
And a cancer diagnosis makes the patient feel very isolated. Bob certainly had this experience. And I can tell you there’s one person who feels even more isolated, and that is the family caregiver, the primary person who is taking care of that person with cancer, because there are folks who think to themselves, “Bob’s got cancer, I should check in with him periodically.”
There are very few folks who think “Jen’s taking care of Bob, I should check in with her.” It’s just a thought that never comes to mind. And so every once in a while I would feel that way, “what would it be like if I got cancer and beat him to the finish line” kind of thing?
Yeah.
Missing Things
Kevin Berk: So you intimate elsewhere that being a caregiver can feel like a full time thankless unpaid job. That kind of leads into another page that I actually was hoping that you would read, where you say, “I will not miss these things.”
Jennifer A. O’Brien: Right, absolutely, I’m happy to read that page.
I will not miss the sleepless nights filled with his relentless moaning, wheezing, and suffering.
I will not miss trying yet failing to comfort him.
I will not miss wrapping his swollen legs. I will not miss giving him injections.
I will not miss changing the sheets in the middle of the night because of his night sweats.
I will miss loving someone so much that I do all these things.
Yeah, I think you’re absolutely right. That’s sort of the crux of the family caregiver. It’s exhausting. It’s hard physically, mentally, emotionally. And there’s nothing about it that is glorious orwonderful, in terms of those tasks that we have to do.
But the love, that’s, the why, the reason we do it is the other side of that and, you know, keeps us going. Yeah, definitely.
When you’re caregiving, it’s good to keep in mind your future self occasionally. You lose yourself a lot with caregiving, but somehow, somewhere deep down, you have to keep in mind your future self and, how am I going to feel after he’s gone? How am I going to feel about, again, back to Precious Time, how I handled our Precious Time?
Kevin Berk: And you talk a lot about both, his death and your survivorship and planning for both of those things, trying to get your head around it. And I think that’s part of the reason why this conversation I feel is so prescient is that,I think for myself and other people like me, it’s a really good way to, become familiarized with a difficult subject that you’re eventually going to have to deal with, and probably multiple times.
Jennifer A. O’Brien: Yeah, it’s certainly easier to do when no one is sick. This is why I always encourage people to have these conversations at any time, and to keep having them. People talk about the conversation, which I think is a misnomer. It’s not a single conversation. It’s many conversations.
It’s not an easy conversation when everyone’s well. It is much more difficult when someone is ill or,has a life limiting condition. It’s much more difficult, but having had those previous conversations is such a great touch point.
You can go back to, “well, you know, you used to talk about this. Are you still there or are you somewhere else now on that topic” and, uh, very, very helpful to do it. I will say, as hard as it is,it is one of the most loving and intimate things you can do with people you love is to talk about their wishes, to commit to honoring their wishes. up to and beyond their last breath.
And then when they die and you carry out exactly what they wanted, it’s a great demonstration of love and commitment to yourself that you did it. You did exactly what you promised you would do,on the biggest, hardest, most difficult thing you could have possibly encountered in your life.
It is powerful. I am a, a much wiser and developed, person than I was before I did this for each of the loved ones that I’ve done it for.
Hope for the Best, Prepare for the Worst
Kevin Berk: You have another page closer toward the end of the art journal that said the most helpful advice was: “Hope for the Best and Prepare for the Worst”. Can you elaborate on that?
Jennifer A. O’Brien: Absolutely. Hope for the Best and Prepare for the Worst is actually in the book twice, once toward the beginning and, as you say, once at the end. As I mentioned, I’ve spent my entire career in health care and I spent some time in a hematology/oncology department at a university in Chicago, and one of the cancer specialists used to say to patients at every visit, “we hope for the best and we prepare for the worst.” Now, some doctors switch that around and talk about “hope for the best and prepare for the rest” because they don’t really love the whole worst thing. That’s not what this guy did. I think it’s important for many, many reasons. Lots of folks think that having conversations about end of life, especially when we have a life limiting diagnosis, is a hope killer. It is not. It is not a hope killer. We are fully capable as the complex beings that we are of doing both, of hoping and preparing. I would also say that the best and the worst change over time. When Bob was first diagnosed, with, with a biopsy of a lump in his neck, they sent the specimen off to a very special lab in Houston to determine the genetic makeup of the cancer to see if there was in fact a targeted therapy available.
So in those couple of weeks that it took to get that, those results back, the “best” was a cure, right? Why not? Why not him? And the worst was it was, you know, was death. And then when that came back and it, and it wasn’t the case, the best became good quality time together. The best became Bob’s ability to work and serve patients and their families, because that was, most important to him. and so, so we went that way. We focused on that and we prepared very thoroughly for his death and my survivorship. So hope for the best and prepare for the worst is absolutely essential. I would also say, you know, in your relationship with the person, be cognizant of when they are in high hope mode, and not trying to sort of bring in, “here, sign these papers” when somebody is in high hope mode and not spoil that moment. But be sure to get around to signing those papers. When someone is pretty focused on getting some stuff prepared, you know, let’s not dilly dally in, oh, you know, talks of miracle cures and things like that. Try to honor where the person is, where the other person is. That’ll help a lot in doing this, in achieving the success of balancing both. It is, it is simply never a waste of time, to have discussions about end of life. It really, it really isn’t.
Kevin Berk: Yeah, one of the things that I, I can’t recall whether this was in, was in this book or whether it was in Care Boss, it might’ve frankly been in both, where you say people tend to want to say, “Oh, well, you don’t need to worry about that now. Well, let’s just not…” You know, again, it’s a little bit of a running theme that that’s kind of what our, our culture does, but you say on a couple of occasions, I think “we’re okay with it.”
And trying to just say, let’s, let’s move the conversation forward. If we’re planning for a memorial or a celebration of life or something like that, don’t tell me we won’t need it because we will need it. So…
Jennifer A. O’Brien: Yeah, everybody needs it, right? Everybody dies. Like, yes, that’s actually a page in The Hospice Doctor’s Widow. A few weeks before Bob died, he was, he was planning his memorial service, which I was so grateful to him for doing, because, you know, when he died, I just knew exactly what he wanted.
I didn’t have to stop and think, did he want this? Did he want that?
Anyway, he called a cousin and said, “I’m planning my memorial service” and the cousin said, “oh, you’re not going to need one of those!”. I could hear this person on the phone, they were so loud in saying it, that I heard it just sitting in the room, he didn’t have them on speaker, and I just thought to myself, “wait a minute, we’re all going to need one of those”, right? Like, Even if we’re perfectly healthy, someday we’re going to need a memorial service. Nobody gets out alive. So anyway, yes that’s a downfall. And the same with the expression, “we’re at peace with it.”
We had put all of the, the cars and the property in my name. And the notary public, when we were going through the paperwork to do that, she said, “why are y’all doing this?” And I said, well, and we were both sitting in her office and I said, “well, Bob’s dying.” And she got all squirmy and nervous and, you know, kind of… just halted and, and I, and I said, “we’re at peace with it”, which was for the most part true. I had heard Bob say that to other people, and moreover, I just wanted her to get on with the task at hand, right? This is not easy stuff. So…
Kevin Berk: Don’t make it more awkward.
Jennifer A. O’Brien: Yes, exactly. And that, helped a lot, helped sort of ease her and it was true.
At the end of life comes death. It’s best to be at peace with that fact.
Solo Aging
Kevin Berk: What was the thought process behind “I am no one’s number 1”?
Jennifer A. O’Brien: Since Bob died and since the book came out, my father also died, and I don’t have kids, I am what is referred to as a solo ager. There are a lot of us in the U.S. I am no one’s number one.
I used to be my dad’s number one girl. I used to be my mom’s number one girl, right?
Because I was, I was the only daughter. I certainly was my husband’s number one. And I’m, and I’m not. I’m not anybody’s number one. I’m probably not in anyone’s top five or 10 at this point. Um, And that’s okay. I mean, it’s, it’s a fact. It’s funny that you had that expression, because, I, I think that’s true.
I think that’s an initial reaction. I don’t talk about this a lot because I anticipate that people would react to that with something like, “Oh, you can be, you can be in our family.” “You can be my number one”, you know, kind of stuff. And that kind of only makes you feel worse. It’s taken the death of my father, which is what launched me into that solo ager that “no one’s number one” category. It is taking me some time to get my equilibrium there. I’m not going to lie. It is hard to be a solo ager. And anyone who’s listening to this who is a solo ager, you know, who has no obvious heirs, their people have died before them or they are in estranged relationships… it’s a difficult place to be, for sure.
But it’s a fact and it’s still important that we face some, some things that are ahead.
Kevin Berk: There’s the page, perhaps you could read it about, um, any form that asks you for the emergency contact?
Jennifer A. O’Brien: Sure. Any form that asks me for this emergency contact [with a blank line] and grocery shopping still sets off some degree of grief and loss just about every time, even years later. So in other words, the places one goes for help, care, and nourishment are risky for me. I am not alone in this. Other widows describe feeling the same way.
This is a classic. You get that form at a new doctor’s office or anything, any place that you are having to fill out an emergency contact after being widowed, it is a gut punch. It is a gut punch immediately after your loss. It is still years later very, very difficult to stare at that blank line and it is hard as a solo ager.
You have to have some conversations. You have to make some determinations as to who is your person? Who’s your health care proxy? Who’s your emergency contact? Who’s really going to be able to be there for you if and when you need it?
And the grocery store is just rough. It just is. I don’t, I don’t know whether it’s the fact that I used to shop for two and now I’m shopping for one. Certainly the grocery store that I continue to go to that I went to when Bob was sick, it’s certainly in that grocery store, but it kind of happens in almost any grocery store. Just because, you know, breaking bread, right? Having community over a meal is just the thing we do with this person we love or these people we love. And, and it’s gone. Um, they’re gone. And, um, so yeah, grocery stores are, are particularly difficult.
Kevin Berk: I’ve heard people say that about Costco as well, and whether it’s their kids go off to college or something and they go, “oh, well, now we’re not shopping for three or four. We’re shopping for two.” And then you really hear it again when people say, “I’m not shopping for two, I’m shopping for one. And it’ll take me years to go through this amount of stuff that I’ve just picked up in this, this latest haul.”
Jennifer A. O’Brien: Solo agers, for the most part, do not have Costco memberships.
A Message of Love
Kevin Berk: So the final page and I don’t know whether I’m giving something away with this, I hope not. But, I love the fact that the art journal ends with an illustration and the caption Love is Greater Than Death.
Jennifer A. O’Brien: Right, right. So death is greater, as we discussed earlier. Death is greater than remission. Death is greater than a cure. Death is greater than a healthy lifestyle. Right? Um, Death is greater than the best specialist. But love, love is greater than death.
The love goes on long after your person dies, your love for them goes on, and in some cases, sometimes grows. And love is always greater than death. Death is greater than a lot, but love is always greater than death.
Kevin Berk: I think unless there’s anything else you wanted to cover, I think that that is a perfect way to wrap up this particular podcast. I love that sentiment. And I think it’s a… it’s a good send off.
Jennifer A. O’Brien: Absolutely.
Kevin Berk: Jennifer, what a wonderful conversation. Thank you so much for sharing this incredibly personal, um, experience and anecdotes and, and, artistry and work that you’ve done. I really appreciate it, and I hope that everyone who’s watching or listening to this, will get something out of it as well. If people are interested in picking up a copy of either of those, Is it best to do it at your website?
Jennifer A. O’Brien: Sure. I, I encourage people to pick up either book in whatever way you usually buy books. If it’s at your local bookstore, you can order it through them. If it’s Amazon, you can order it there. And there’s a way to directly purchase it from the publisher. on my website.
I have a lot of resources on my website, on the resources page of my website: and so jenniferaobrien.com is my website. And I really think that’s the best place to land if you want to reach me, if you want to learn where I am on social media, if you want to buy the books… Whatever it is that you want to do with regard to me, jenniferaobrien.com is the place to do it.
Kevin Berk: Wonderful. well then thank you so much for today and we’ll talk again soon.
Jennifer A. O’Brien: Absolutely. Looking forward to it, Kevin.