The Gifts of Preparation: How End of Life Planning Can Ease the Burden of Caregiving

Jennifer O'Brien, author of "The Hospice Doctor's Widow," joins the podcast to share her deeply personal story of caregiving for her terminally ill husband, Bob. A hospice physician himself, Bob's diagnosis of advanced renal cell carcinoma forced them to confront their own mortality and navigate the healthcare system together. Jennifer, equipped with her own experiences with loss and a career in healthcare administration, played a vital role in planning for Bob's end-of-life wishes and her future.

Their journey wasn't solely focused on medical procedures and appointments. Jennifer highlights the concept of "Precious Time" - a term Bob coined to describe the irreplaceable moments left with a terminally ill loved one. She emphasizes the profound significance of these moments, fostering emotional connection and expression in a way that transcends the challenges of the situation. Their proactive approach, characterized by open communication and practical planning, not only ensured Bob's wishes were met but also enriched the quality time they shared. Even after Bob's passing, Jennifer finds solace in the plans he made for her well-being, a testament to his love and foresight.

Driven by her experience and a desire to help others, Jennifer has poured her grief and learnings into "The Hospice Doctor's Widow." This powerful book sheds light on family caregiving and end-of-life planning, advocating for open communication and a balanced approach between hope and reality when facing terminal illness. This episode is a must-listen for anyone facing a similar situation, offering invaluable insights, practical tips, and the comforting reminder that even in the face of loss, love and connection can leave an enduring impact.

About Jennifer:

In her 35+ years in healthcare, Jennifer O’Brien has served as a practice management consultant to physicians, CEO for two large medical practices, and held administrative roles in three academic medical centers. She earned her Bachelor’s degree from Boston University and a Master’s in Organization Development from Loyola University – Chicago. Jennifer has authored 50+ articles in professional publications and peer-reviewed journals.

Her art journal, kept during her late husband's 22-month illness, was published as The Hospice Doctor's Widow: A Journal in February 2020. It has won several awards, including a Nautilus silver award in the Death & Dying/Grief & Loss category, a Next Gen Indie Book gold for Relationships, an IPPY bronze for Gift, and an International Impact gold for the book's interior design. Jennifer now shares her story, wisdom, and experience to help others understand the role of family caregivers and the importance of end-of-life preparations.

Connect with Jennifer:

Website: https://www.hospicedrswidow.com/
Instagram: https://www.instagram.com/hospic

Transcript

Natalie: 0:02

Hey guys, it's your favorite sisters with the Confessions of a reluctant caregiver podcast. On the show, you'll hear caregivers confessing the good, the bad and the completely unexpected. You're guaranteed to relate the inspired lead with helpful tips and resources and of course, laughs Now, let's get to today's confession. Well, good morning, Jay.

JJ: 0:30

Good morning, Natalie.

Natalie: 0:32

We always start with good morning.

JJ: 0:33

I wonder why we do that. I don't know. We could say good evening, but it would be a lie.

Natalie: 0:37

Yeah, that's right. Because we record in the mornings, and that's the most fun. It's when we're the most risky. And no, we

JJ: 0:42

would be like sleepy in the afternoon. So

Natalie: 0:44

that's true, we would be in a carbohydrate haze. But you know, what? Less about our carbs. And yes, and more about the amazing guests that we have today. We have another friend everybody's my friend Jay.

JJ: 0:57

I know that makes me nervous. You make friends everywhere. I mean, Mom was always worried that someone would steal you because you never met a stranger. They would give me back. That might have been a blessing. Yeah, if I saw you.

Natalie: 1:09

But let's let's I want you to tell our friends out in the big world about Jennifer. Okay, amazing. And her story is

JJ: 1:18

so it is it is fantastic. So today we have Jennifer O'Brien with us today. Now Jennifer spent over 35 years in the healthcare industry. And 2020 She published what has become a multi award winning book of the art journal she kept during her late husband Bob's 22 month illness and titled The hospice doctors widow, a journal. I cannot wait to talk about this book, Jennifer. So I know it's gonna take a little while but we're going to talk about it for sure. You see, Bob, this is what's so interesting to me. Bob was a palliative care and hospice physician, precious time. And that's the end of life period when death is inside which he described his patients and their families was now his and Jennifer's to navigate in their own lives. Now, Jennifer shares her story, wisdom and experience to help others understand the role of family caregivers and the importance of end of life preparations. Jennifer, I'm so happy you're here. And I just want to if you're on YouTube watching, first of all, you can see I have all these lists. I can't really say sorry. I'm sorry. So here's the book because I'm so bad. But I have all my stickies in here, because I have stickies everywhere, Jennifer Oh, well, I always do my homework and headline, but it's, it's absolutely beautiful, first of all, so thank you for sharing in the journal, everything. And I know that what you share with us today will if you're listening, just take a seat and get something get a coffee, get something to drink. So thank you for being with us.

Unknown: 2:54

Thank you for having me. And for that beautiful introduction. Well, you know,

Natalie: 3:01

you have to live on your honorary sister, so and when they're wonderful, you have to share it. I love it. So I think you know, there's gosh, we have so much to unpack

JJ: 3:12

today. So little time, Jay, I can already. Let's get started.

Natalie: 3:16

Let's do it. So Jennifer, tell us, you know, tell us kind of always like to start this way. I'm like you were born. And then fast forward. But tell us like, tell us your story, that little bit of the background, and kind of working our way up to the diagnosis.

Unknown: 3:32

Yeah, I think that's important, because I was born and then you were born. About five years after I was born. My only sibling, David was born. So he was five years younger. And the reason that that's important, is because when I was 18, and he was 13. He was in a motor vehicle accident and died three weeks later. Yeah, was extra baited three weeks later, and not quite 20. So so there's that right, there's what that does to a family and not quite and what that did to me, he was my person, you know, only sibling and and then not quite 20 years later, my mother got pancreatic cancer, and she died five weeks following her diagnosis. And I was Yeah, and well with pancreatic cancer, honestly, you don't really want it to go that much longer than that. And I was her caregiver. Um, and so that I and then at some point, I was in health care, mostly on the business leadership side, not clinical. And I was I had come down to Little Rock, Arkansas from Chicago to do an interim CEO position for a large orthopedic surgery practice. And that was I do this interim leadership with some frequency. And I was a couple years into to it when I met Bob Lemberg, at an art gallery, and I mean, I was smitten almost instantly he he was cute, and he was funny. And he was sweet. And he was smart. But what was also, perhaps the bigger deal was that he was a hospice and palliative care physician, and I knew from my experience with my family, just how important that work is with families. And so, you know, I was, I was taken that was, that was a big part of what I fell in love with. We fell in love quickly, we got married we, he was on faculty at our Med Center here in Little Rock, Arkansas. I finished up the orthopedic job and kind of went back to some of the education and consulting that I do for physicians, when he found a couple of lumps in the left side of his neck, and after some diagnostics, it was determined to be a stage four metastatic renal clear cell carcinoma.

Natalie: 6:06

So let me let me stop for a sec. Let me go back for a sec. Because you're like, Well, I do interim CEO jobs. So you know, you had your the loss. There's a loss of your your younger brother at 18. And that feel that feels like that was very quick, because there was you were probably a lot of the hospital piece of it going back and forth that because you said it was about three weeks that after his accident kind of deal. Yeah. Yeah.

Unknown: 6:35

Game consciousness. Yeah. Right.

Natalie: 6:37

And so you go to college, you start this high end career, you end up going into a high end. So high stress, high work. Like I think that's something that's kind of important. So you're you're driven. You're not married during this time. You're you I

Unknown: 6:56

did get married. I was with a man, wonderful man from when I was 19 till I was 30. Oh,

Natalie: 7:04

I believe everybody should have a starter, Jennifer. So it's a good

Unknown: 7:08

guy. Just we were very, very young when we got together. And you know, none

Natalie: 7:13

of this is like Adam Kim. I'm like, But you know what I mean? Definitely a star. And so great for him. You're on this career path. And you're in your work and a lot. That's one of the things you know, I know that you had mentioned to me in the past. And so then of course she Veep off. So you Meet Bob. And you're a little bit older, if you don't mind me saying I mean. Yeah.

Unknown: 7:38

And would not look first for either of us.

Natalie: 7:42

That's what makes it feel so good. Yeah. So but did

Unknown: 7:46

you didn't have children that? No, neither of us had children? There

Natalie: 7:49

you go. So I think that's important because as we think about caregivers, and as we think about our own aging is as we have things that come in and out. It's like, Who will take care of us. JJ and I are both are we're solo agers in the sense of or we don't have children. And so agent has many definitions we talked about, but truly, so you and Bob are there. And then he gets diagnosed. How long? Have you guys been married before he got diagnosed?

Unknown: 8:16

For sure a ton of questions. Yeah, no, no kidding. Math. It's math. Um, you know, I think we've been married for three years. At that point. We were together for a total of five years by the time he died. Yeah.

Natalie: 8:31

Okay, so that makes sense. I'll share the mic. Okay. Thank

JJ: 8:36

you, Natalie. So I guess I guess my question is, you guys have really excelled you've been together so I love that you guys fat you're like okay, we fell in love. We're done. You're kind of like me where I'm like I'm at the age now and mature. I know exactly what I want. Jennifer. I love that. But you guys are you're experienced life. So this is although he's in that field and he has a passion for that obviously, because that is a special heart in my mind. You guys are living your life. This is very it's very obviously unexpected. Because you guys are planning your you got your life together. You are each other's person

Unknown: 9:09

is that? Oh, absolutely. Absolutely. No, no, we were we were super close. He just for frame of reference. He was 18 years older than I but you're absolutely right. Very much. It was the two of us. He was he was very introverted. I'm sort of an ambivert kind of on the line. So we spent all of our, all of our unscheduled time alone together. Every every night, we ate at this little little table in our kitchen. I mean, just it was absolutely perfect for us. And you know, having lost my only sibling when I was so young. i i I would sometimes say to Bob, I'm afraid something's gonna happen to you. Right which which is common when when you have a trauma like that when you're young and he would say You know, Jen, I'm, I'm going to be fine. He said, Well, you know, I'm going to keep working. He loved working. He said, One day when I'm about 90, I'm gonna go out to get the newspaper without my trousers on, and then you're gonna know, right? It's time for me to like, kind of stop working that, you know, my mind isn't working. I mean, he had every both of his parents had lived till into their 90s. And he and he, yes, we even though he was older, he was very useful. And we had every intention of, of having a long life together. Yeah, we're gonna be

JJ: 10:36

on the horse in the rocking chairs, basically. So tell me because you are both working. And I love that about Bob that, you know, that was like his driving factor, even when he's sick. Yeah, he it's, he wants to work like that as a purple one. Yep. And so tell me about the day like, what your reaction versus who's because, tell me about the day? Well,

Unknown: 10:58

it was it was a night. It was nighttime. That's one of the things you know, Bob was a was a physician's physician, he he before sorry, but before he was a palliative care and hospice physician, he had been a plastic and reconstructive surgeon for 30 plus years, and came to Little Rock in 1979 and was a worker. So he he works when he was on call, he worked sometimes when he wasn't on call. So he had really served this communicate this community. You know, in times of trauma, he operated on people who had been in car accidents, all that sort of stuff. So when a surgeon and then physician like that, in a small community starts to have some some diagnostics, right, the medical community, at least in our case, really rose up. And so that's all to say that the phone call came very late into the evening, he had had a biopsy of one of the, of the bumps on the left side of his neck. He had a he had when he went in for the visit with the otolaryngologist about his neck. He'd had some discomfort in his abdomen, and he had them again, physicians do this sort of thing like take that CT that is normally see teeing your sinuses, and pointed at my belly because I need to see what's going on in my belly. And they had seen, they had seen some lesion looking things that led him to believe led let him in his otolaryngologist to believe that we were probably looking at a lymphoma, which is a, which is a serious cancer, but it's typically not a terminal cancer. It's one that you die with not have. And so we were fully expecting that this phone call would come and it would the answer would be lymphoma. And we would just basically end up adjusting our lives right to life with serious illness. But it wasn't this, this Dr. Graves Hearns. Berger called me it was probably nine o'clock at night and said, Bob, we can't figure this this. This is not lymphoma. This is very bad. And we don't know exactly what it is. And it was stunning. It was it was utterly stunning. We both got tears in our eyes. And just just just stunned that. And it was affecting us. I actually wrote a poem about this that is in the journal Journal of narrative medicine called intima. And it's very much starts with the night that we learned the learned of the diagnosis, and then and then goes on from there. But yeah, it was devastating. It was it was utterly devastating. And we sort of got our shock over with he he called his sister or his brother and his sister and told them what was happening. We were very lucky also, again, serving the community as a physician. This Odle oncologist said, Who do you want for for oncology, you know, for your oncologist, and Bob named the one he wanted. And that doctor called us about 10 minutes later and said, What time do you want to come in tomorrow? Again, you know, you show up for everybody over, you know, 40 years and then start to show up for you when you're really when you really need it. So, so yeah, we were we were very lucky that way and you got to go in and see the oncologist right away.

JJ: 14:29

Let me ask you a question because of past experiences, because we say that really impacts everything and this impacted me and my dad died when he was 58. And I know of my own husband. His 58th birthday was hard for me because I thought he's gonna it really it was like he's 58 Obviously everyone dies at 58 That's the craziest thing probably for anybody because his parents are in their 90s When you got that diagnosis, was there a part of you that said, three to five weeks? Was there anything that said okay, people that have gotten sick in your life, it's a shame Order turn, or any Yeah,

Unknown: 15:01

no that diagnosed we were very certain that it was 90 days tops when we got that diagnosis, and honestly, it's an interesting thing that you that you bring that up. I hadn't even thought in those terms. But yes, I certainly do now, I find it really, when people have a cancer diagnosis almost of any sort, I find my course I, I try to get one of the things, the work I do now is trying to get people to talk about their end of life wishes, even when they're perfectly healthy. Because that's going to happen to all of us. And it's in it's such a huge part of the lives of those that go on after they lose a loved one. So But even now, I do not I do not have a ton of experience with certainly not with family members who get a cancer and get it cured. And go on. It's almost always in my experience. Yes, someone dies of their of their cancer or their condition. And that is an adjustment. Yes, we thought it was going to be 90 days. We were very pleased when the I think we both had experience from previous times when there are fewer drugs available. There. It really is almost almost every six, eight weeks, there are new cancer medications being approved. And so we were both I think our brains were stuck in an earlier time when you know, there was only that one sort of Oh, will if this is what this is, then we need to just enjoy the precious time. Yeah. Tell

JJ: 16:47

me about precious time. Because that's the first time I'd ever heard of it. We talked to you and it is. Tell me about it. Yeah. So

Unknown: 16:55

it's a term that I believe Bob coined. I mean, I had never heard it before him and and he used to come home in the evening. And he would say, I told the family, they were in the precious time. And you would say it just like that precious time. And, you know, I'm from Chicago. I I just thought that was sort of a southern thing like Southern people say umbrella or insurance. And then when he would describe what he meant by that, I realized, oh, no, no, no, that's purposeful, that the emphasis is on the type of time. It is a way of telling families, this doesn't go on forever, and death is coming. And you need to say what you need to say and don't say what you will later regret. This is the time for the I love yous, and the saris and the thank yous, and the goodbyes, and the will be okay, stuff. So that. And it's super important to have that opportunity. On the occasions that we know it's coming four out of five of us die following illness or old age, only one in four die suddenly. And yet, because of our unwillingness to name this as precious time, it or whatever you want to call it, we actually have people who took care of somebody for years, right? The average caregiving duration is 4.9 years. That's the average. So you took care of somebody for years, and they died. This happens all the time. And the caregiver now turned Griever is shocked, you know, didn't get didn't take the time to say what they really wanted to say after all that what they really needed to say. And there's no do over. Right, like, and so so this was such a gift to these families of them. And we I know it was a gift because Bob would get thank you notes from families who had lost a loved one. So yeah, so and almost instantly, then, of course, that term comes to my mind when we get the diagnosis. Because I know it's a terminal diagnosis one way or another right, no matter how long it lasts. I am not sure Bob ever told a family you're into precious time, 22 months before the death, I'm quite certain that they're you know, that he told them closer to the patient's end of life. But for us, of course it started upon diagnosis because because Bob had coined the term and I will say that term has exploded in within healthcare, thank goodness. And he's almost at this point larger than than my book. It is. I have there are healthcare folks that are using it all over the North America actually, and I did for those who are are listening who are in the healthcare field. I created a free download on my website. A that is called the precious time implementation guide for healthcare professionals. And I have to tell you, I think it's quite good. The feedback I have gotten on it from doctors and nurses and other health care professionals, social workers, has been really, really positive that they are thrilled to have this term, this way of telling people, this very serious, very sad thing is about to happen. But it's not it's in terms that people can relate to and, and can understand and find beautiful, because it is a beautiful period of time, if we see it that way. It makes for a grief that is far less complicated, right that I can say what I have to say and go on after the death of my loved one knowing we were fully reconciled that this person knew that I love them up until and beyond their last breath. And there is there are a few things more beautiful than that. I think. I

JJ: 21:05

think about our grandmother who was in hospice, and I think about our we have a grandmother that passed just simply old age, she was in the hospital for a couple of weeks. But I first of all, I cheer the whole concept on and I want to say to all physicians get that word like coined in your head, because I wish that term to me that calls it out instead of someone coming, it's like, let's get in close, you know, just got, you know, the terms that they try to use softly. But I think if someone had said, you're in the precious time, I think that to me, that's actually puts chills on me. But it puts this urgency on me to say make this right, Jennifer and that that's a gift from Bob that will go on for that as a gift and a gift that you shared it in your book. So I'd love that. There's so many gifts in the book, first of all, so we'll we'll start there, but

Natalie: 21:55

we're gonna make sure we'll have the link in the show notes, I need to get that we'll get the link in the show notes for that document that resource and share that because I'm for sure important. So Jennifer, so you all have an I remember what it was like to get the diagnosis. I remember that. And as the caregiver, you're instantly in a caregiver role at that point. You shift. Jennifer is again, a her background is administrative, had lots of hours, lots of working you and Bob had been continuing to work and doing all that great stuff. And you get this diagnosis. And it's like, because, you know, Jennifer, I know you're like me, you're a type A. So what do you immediately do in that sense? Like, so once the shock is worn over? Because I get it? Yeah, then what do you do? Because if you think about it, like I know what my husband did, but then I know what I start thinking, what did you start thinking? Well,

Unknown: 22:56

the first morning, so that was late at night, and we went to bed, the first morning he got up and got ready for work. And I stayed in bed and he came to me and said, You can't stay in you can't just stay in bed. And I was like, you know, I actually can like i He he he did not want me to take to my bed kind of thing. I think his mother had done that quite a bit in his youth. And he you know, I think he knew deep down I wasn't going to do that but but I think he had you know, we were we were over overwhelmed. So of course I got up because I knew it would it would make him feel better about going to work if I just sat up and got out of bed and that sort of thing. But honestly I wanted to just lie there and cry for a while. And you know I think honestly with in our case it was really both of us who got to work on you know this is in the book actually hope for the best and prepare for the worst and the in the end of that is extremely important. And we did both so often especially with a cancer diagnosis. We get to this we're gonna fight it right and anything other than fighting it is a hope killer. And I simply disagree first of all, I do not I don't like the war metaphor. I think it is so much more than fighting. I do not consider Bob a loser because he died of cancer right which is which is necessary if you're going to use that metaphor, then somebody's got to lose at some point. Right and we all die so my husband was not a loser. And and so I really love the the hope and the prepare the balance of both and we really, we did both and preparation for end of life, which is what I mean by prepare, is some of the most intimate relationship you can have with a person when you when you get that close to someone to know, to listen, to ask and to listen to what they want, and what they don't want at the end of their life, and make a commitment to carry that out, regardless of what you want and or don't want at the end of your life. Right? We're very different. The statistics all say we're pretty split on on our end of life wishes, but that you you learn them, you learn them enough to be able to carry them out in detail. That is a closeness, that is that is really one of the most profound we have in our human existence in, in my opinion. So we right away started doing both getting started on treatments, to two that were that were largely life extending or palliative, no cure, there was, there were a couple of weeks there that we had hopes that his cancer was going to align with one of the targeted treatments, and he would get cured. But once once that was determined to not be the case, you know, we were looking at, hopefully getting a little more good time together. But we did both we we we did we prepared a lot we ended up we lived in a huge old house, and we sold it and moved into this lovely condo that I'm in right now. We put everything in my name. I mean, we prepared so thoroughly for his death and my survivorship. And it was such a gift to me, as the caregiver turned Griever and continues to this day to be a gift. I mean, there are things I do. i This happened last spring I so one of the things we did was go to Doc Bob worked for the VA for a long, long time. And he made an appointment, it was about six or eight weeks before he died for us to go to the VA HR office and complete what is just buku paperwork for my survivor benefits. And we did that and which is you know, we sat there in this, it was a gloomy day. And it was very emotional, difficult to do it. But we did it. And I get handed you know, this paperwork. And here's this phone number. And when Bob dies, you call this number. And they'll tell you what, you know, basically, they told me to send in his death certificate. And after we had that meeting, this always makes me so emotional. Bob handed me this little slip of paper, and it had a woman's name on it first name only, I think it was Cindy and a phone number. And he said if you have any problem with your VA benefit, you call her she will know what to do. So of course he died. And and as things you know, in the, I don't know, weeks, days after he died, I called the number the VA number. And I kept calling it and calling it and calling no one would ever answer the phone. No pickup whatsoever. So I tracked down that little piece of paper with Cindy's name on it. And I call her and I say I'm having you know, Bob told me to call you if I have a problem. I can't I call and they don't answer the phone. And she said, Jennifer, they start answering that phone

at 6: 28:33

40am Central Time. You call it 6:40am. The next morning I called and they answered the phone and the VA, you know the whole thing was taken care of. And then even six months ago, I was doing some clean out, you know, you know how you do spring spring cleaning, organizing kind of thing. And I'm going through and all of a sudden I realize there's a flashlight in every drawer. I didn't put those there. Right, Bob put those there for me in case the power goes out. And basically all you have to do is reach to the nearest drawer and there's a flashlight there. And it's been you know, at that point, it had been six years since he died. And these gifts, these gifts of preparation are still surfacing for me and it's just like, it's like he's still telling me I love you, Jen. You know, it's so lovely. And I just can't encourage people to do that enough. I know it's caregiving is so huge. It's so so huge. If you can balance that with because because what it is, I think you're you're deep in the throes of caregiving. You can you can barely see an hour ahead much less, you know, a year or a lifetime ahead. But what it's really doing when you do the preparation besides Getting close to your person, isn't it it's taking care of your future self. As a caregiver, there will come a time when the person you care for dies. And your future self will need a lot that you're able to do, you know, need the confidence that you carried out their wishes entirely need the the thorough practical preparations like Bob and I did. There were there are a lot of needs in that transition from caregiver to Griever. And, and then on in survivorship. And, and this preparation, this balancing hope and preparation is really important for that.

Natalie: 30:44

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JJ: 31:36

You said you all had had it. I read that you had had those conversations at the dinner table long before Bob was diagnosed that you would you would he would have those conversations. I know that I mean, at what point do you think all of his previous experience prepared you all because he has a very clear state of mind of taking care of you, Tim? So and all of that I mean, he's coaching families and and their that their loved one all these years Hospice and Palliative, where he could have gone either way and said I don't want to prepare? No, I'm done. I've seen this all these years. But how do you think that impacted him?

Unknown: 32:19

I I think you're right, there are I there probably are even palliative care and hospice doctors and nurses who even faced with terminal illness within their own family ourselves don't do that preparation. I can't imagine about doing it any other way. Yeah, I really can't. And when I, you know, I did say in an interview that it may be more than one interview that, that we talked about death at the dinner table. We did I mean, it happened every day in his work, right? Every day, someone was dying, or several someone's were dying, actively dying. It was such a big part of his work. And, and it was, you know, so that we'd already done some of our own prep long before he got sick. And this was just, you know, just a thoroughness. I think part of it was that he lived for 22 months. And so as the time went on, there were even more details that he that we could cover. And we and we did, and, but he has, he was he loved me very much. And of course, I loved him very much. But he did many, many things that would demonstrate that love long after his death. And, and so yeah, so I love him even more. So,

Natalie: 33:52

I do have a question. I'm going to jump in because jj, jj is chatting and more than me, because

JJ: 33:57

I'm like, Oh, is that possible? It's not I know,

Natalie: 34:01

it is. And everybody's gonna be like, what happened to Natalie? Did she go to leave? Um, I think about so you. You are in this window of time. Did you stop working? Yes,

Unknown: 34:15

that's right. I did. I had, I had finished the orthopedic job. And I had gone to a part time consulting position with a with a firm that I have worked for on and off throughout my career. And yes, I said, because it was going to require travel and I was simply not going to travel for work while my husband was was ill. So yes, and we were very fortunate to be in a position that I could not work. Now, I will tell you that preparing for end of life and the rest of your life is a lot of work. So it's that much more when someone also is working a part time or a full time job.

Natalie: 34:57

Ya know, and I think that's fine. I think that's important to understand that the, you know, even you talked to it's there's a lot of stress associated. And if you have the ability to be able to, you know, not only, you know, to dedicate that time because that's one piece you did not have to worry about as much at the forefront is the financial aspect of it. And but, again, everything that you're talking about is planning, and you're planning for your future. I love the flashlights, because that's something Jason would do for me, that I just that resonates with me so much. And I'm just like, oh, Jason would do that, or something that would be like a reminder, like, it'd be like, I know, Jason, I

Unknown: 35:39

get it. I want to say one thing about the working and not working. First of all, of course, caregiving is extremely hard work. So the word work, you know, we're talking about outside the

Natalie: 35:51

home professionally. Yeah, getting paid paid work. Yes,

Unknown: 35:55

compensation. But I about a year ago, I you know, as I've said, I'm in healthcare, I'm in hire I leadership. So So I've done a lot of hiring and over the years, and one of the things you need when you're hiring, is it position description, right? You need to know what this job is, what it entails before you start to embark on who you're looking for, and who's a good fit. So about a year ago, I found myself thinking, what what if I had to hire for the family caregiver position. And I created a position description for the family caregiver, which is also on the resources page of my website, and a free download. And for all those of the folks your folks who are listening who are currently caregivers, or have recently, given up that role, one way or another, I would strongly recommend downloading this caregiver position description. For and I did it I feel like what its value is, is is several fold. One is when healthcare workers read that position description, they are astounded that, you know, I've had a couple of nurses say they can't give intramuscular injections. Oh, yeah, we do. We give intramuscular injections. We do lots of things related to we do lots of things that healthcare professionals have no idea that we've been, you know, we've had to learn how to do. So it's very helpful, I try to get all my health care people to download and read it. It is also helpful for the family caregiver to have some, you know, some agencies some confidence in the job that they've been doing, it is a big, full job there, it would not survive a collective bargaining agreement without a massive salary attached to it. So it is a huge job. And this description describes demonstrates that. And then the other reason I think that's very powerful is when you do finish your caregiving one way or another, someone else takes it over, or your person dies. And it's time to go back out into the professional world. Even if you've been working all the way through this is uh, this position description has language on it, I think that will help you augment your resume in a more accurate way and give you some language to talk about what it is that has been occupying the larger part of your life for however long. So So I've gotten some really great feedback from family caregivers, and from professional caregivers, that it is very accurate and thorough.

Natalie: 38:45

You know, it's so interesting, Jennifer, it's so fun. I love that we go in where the wind blows us. I'm gonna tell you right now. And Jay, I think we should both do it. I think we should add it to our resume. Because I think that caregivers are some of the are the best qualified individuals for so many positions because of what we're required to do. And so, you know, again, whether you are a caregiver have been a caregiver will be a caregiver, or will be cared for. You want that job description, and we are absolutely going to post that, Jen, because I think it's so important, and I think it needs its place on our resumes. And I think it's so important. It's so intentional to show employers to say, I've been a caregiver, because we don't talk about it and nobody sees it. That's part of our past work experience. And I think it starts to normalize the conversation it also informs businesses that you need to have caregiver benefits for this employ. And so I think that's something that just ooh, that just really hits me so much.

JJ: 39:56

But you know, I think about Canvas Canvas draw is someone that so We have our very beginning, one of our very first podcast. And what she said was after she cared for her mom when she had just gotten out of college, and then she had to go into that caregiving role. And so she had like a just a massive amount, just this close. She didn't work. And it was an eight to tenure gap. Yeah. And so she had that. And when she would go to find jobs, they were like, we have this hole in your resume. And she would try to describe what she did. And they're like, Well, you didn't work. And it's like, she was also raising her two younger siblings. Exactly. And you're like, No, you have your mom with cancer, and you have this and, and you're like, she is more qualified than anyone we know. So for any job. That is fantastic. Organizational

Unknown: 40:43

crisis management. They're like, there's a, there's a plethora of things that a caregiver does that in professional settings, not the least of which is keeping your cool when this stuff goes sideways.

Natalie: 40:55

Let me tell you, and you know, here's the thing, and keeping your cool. So let's go, let's blow that direction, I can tell you that there were times that I did not keep my cool as much with my husband, as it was because I think professionally, I knew I had to be there. Like professionally, I was used to it. And I'm a very directive person, this voice is directive. And so I know what I'm going to ask, and Jason always would worry about me, you know, making the doctors angry. And then he worried that that would impact his care. And I'm like, if they're worth their salt, that should never happen. I'm allowed to ask questions. So there's that. But what was it any tense moments because you and Bob sound like you all are like, unicorns and rainbows as much as there can be during this window of time, get frustrated, get like, what are the emotions and things like that? If you don't mind me asking?

Unknown: 41:50

Yeah, no, I don't, I don't mind at all. There were plenty of tense moments. I don't, I don't mean to make it sound like it was certainly unicorns and rainbows. There were many tense moments, they they largely, they largely centered around health care. There is a so you know, Bob was a physician and and the and the doctor that was taking care of him had been a colleague for a long time, Bob, when he was a plastic surgeon, he'd done a lot of breast reconstruction after mastectomy for breast cancer. And so he was very looped in to the oncology scene. And so, and he, he had a similar concern about me that your husband has about had had about you that, because I am a leader in health care, I know how it's supposed to work. And I know when it doesn't work the way it's supposed to work. And, and it was hard to turn that off. We had a disastrous what I thought was a disaster could have been a disastrous experience in a chemotherapy infusion center that, you know, I thought I was gonna lose it. And he got very tense about the degree to which I was expressing my frustration with the way things were happening. He did not like me to talk during the doctor visits very much, you know, I was there as silent support. And that was frustrating, because, because he also and I think a lot of people, maybe especially men do this, right? We've had we've had a long night. He's been up all night with a fever, high fever and everything, you know, everything's kind of disastrous. And then the night is just so dark when that happens, right? And then the sun comes up. And this guy gets in the shower and shave and puts on a tie and a jacket, and we go to the oncologist and he acts like he just ran wrong.

Natalie: 43:52

That is such that Oh, Jason, everything's fine. How are you doing Mr. Handy?

Unknown: 43:57

I'm good. No, you're not. Yeah, yeah. And you'd sit there and go argue you go, you were crying like a baby curled up in the fetal position on the bathroom floor? Like why can't we talked about that? And, and the last one of the later visit in like I said, but it would it would upset Bob if I especially in front of this, this doctor if I inserted myself in any way and I didn't did not want to upset him and I did not want to engage in what I knew was going to be ultimately a silly argument. Right? Like when he when all that was always said and done and he died. I would look back on insisting that I got in the middle of him and his doctor, and I would be I would be furious with myself. I would right so I didn't I wasn't I became a much nicer person than I really am. But there was a moment during, during, I think, second to last oncology visit. And when Bob kind of couldn't hide some of the trouble he was having as well. And the oncologist turned to me and said, you have my number, and you can call any time of the day or night. And I said, you know, with all due respect, you know, that's not true, because doctors don't call their doctor in the middle of the night, because they've taken those calls for so long. And they're glad to take those calls. But they don't feel you know, they don't want to bother a colleague, even as a patient with a call in the middle of the night. And so I said, you know, you know, that's not true. And he acknowledged, he said, You're right, I understand what you're saying. But we can't we can't do that Bob would have been furious with me if if I had done that. So so that was really not the option. I think it's I think that's there aren't many places in our story, where Bob being a physician was a disadvantage, that mostly it was an advantage for access. And it is very frustrating to me, again, as a health care leader, that there isn't the same kind of access for those of those who are not in the health care field, to some degree for me now, right? Like, I don't have a doctor husband anymore. Like, I'm probably going to have to approach healthcare just like everybody else, when the time comes, and I need need something serious. But we had but but the downside was, there was a whole layer of for Bob than this professionalism, that made it just a little harder on me, not on him so much. And the other thing that was ironic about it is, you know, palliative care, which I don't know how much you've spent time on palliative care with your listeners, but of course, no one has to be dying. To access palliative care, it is a lot of extra help. with serious illness, it's that simple. We did not have palliative care, because Bob did not want to be treated by his colleagues, by his partners. And by the trainees, right, the fellows that he had trained, he wanted that privacy and I and I can totally understand and respect that. So ours was kind of a DIY, palliative care do it yourself, which of course the disadvantage to that is that is really on me the palliative care is one of the few specialties that really recognizes the role of the family caregiver. And even they will admit they don't, they don't do it to the degree that it needs to be done. But they are one of the few specialties that recognizes that. And yet, you know, I didn't I didn't have any exposure to that kind of support. Occasionally, Bob would come home from work and say, Jen, you're doing a great job. I saw a patient today and his wife just looked exhausted. And I thought of you and you know, that kind of thing. But that, but that wasn't exactly. You know, what, what I every day? Yeah, I mean, it was it was like it was nice of him to have a moment of acknowledging, like, Thank you. You're

Natalie: 48:19

doing great job, Jen. You know, so I can't believe this, like, we're over. We're at our time. And I'm like, oh, Jen, you're coming back. The words of wisdom. And I think because there's so much more to be said, is what I'm gonna say there's so much more to be said. And so, Jay, I want to do sister questions. And because I always know mine, but you always have the nuggets, go for it.

JJ: 48:48

Well, here's my question, I guess. So first of all, I want to tell everybody, you have to get this book, and you can find it. I picked mine up after the first conversation with Chad because it's not a book. It's Jen's heart, like and I actually kind of tear up on it. I really do Jen like, that's how much this book touched me. And I'm, I'm gonna read page 67. I'm not gonna cry promise. But it says, Hey, if you cry, well, that's okay. It says, Sometimes I open his closet, lean in and breathe deeply. I can still smell him. And I've never lost a spouse. But I say that because I still have my dad's his ball glove. And initially, I would smell that glove, but it would make me cry because that was my dad's smell because he played softball, but now that I smell that glove, and it makes me happy. At what point did you get Have you gotten there to wear the closet or the flashlights or that that you're good with that, that it's you've gotten to peace? You've gotten to joy because grieving is hard.

Unknown: 49:56

Yeah, i i That's a good Great question. Because when my brother died, I had a lot more of that I just can't, I can't, you know, I can't, whatever it was, I don't want to, you know, I don't want to go to that place where we spent, you know, with Bob, it was a lot less so. And again, I attribute that to so much preparation that we did that. So, for the most part, I think, I no longer very rarely, I should say, am I doubled over in in grief anymore. I miss him, I still miss him every day. And one of the things that's kind of difficult about this situation is that I have chosen to, you know, allow my journal to be published and then spend my time talking about our story. And in a way that I hope is helping others. And I'm meeting with tremendous success. In that regard. As you said, the book won awards. I've got another book that will come out next year. You know, there's there's a lot I gave a keynote and a huge meeting about a month ago. Huge, huge all by all measures success. And yet, I really would just want him back.

Natalie: 51:24

Yeah. You know, I'm gonna, I'm gonna leave us right there. I just right there. Thank you. So thank you so much for giving so much of yourself. We're gonna have Jim back. Because there's so much more to be said. And, and so he's gonna

JJ: 51:45

teach us how to age solo. So

Natalie: 51:48

that we can gonna start talking about is how we ladies, what's life like after? And then how do we age? How do we move forward? And I think, Jen, you're the perfect person to have this conversation with. Well, I

Unknown: 52:01

was hoping to learn something because I'm a little overwhelmed by that myself.

Natalie: 52:06

Right. You know, this is a thing. We're all in it together. That's the best part. You don't have to do it alone. And of course, your honor sisters are right here. So we are always teaching. Thank you so much, Jen. And thanks, everybody for listening. And until the next time when we confess again, thanks. Well, friends, that's a wrap on this week's confession. Again, thank you so much for listening. But before you go, please take a moment to leave us a review and tell your friends about the confessions podcast. Don't forget to visit our website to sign up for our newsletter. You'll also find the video recording of all of our episodes on the confessions website and our YouTube channel. Don't worry, all the details are included in the show notes below. We'll see you next Tuesday when we come together to confess again, till then take care of you. Okay, let's talk disclaimers. You may be surprised to find out, but we are not medical professionals and are not providing any medical advice. If you have any medical questions, we recommend that you talk with a medical professional of your choice. As always, my sister's night at Confessions of a reluctant caregiver have taken care in selecting speakers, but the opinions of our speakers are theirs alone. The views and opinions stated in this podcast are solely those of the contributors and not necessarily those of our distributors are hosting company. This podcast is copyrighted and no part can be reproduced without the expressed written consent of the sisterhood of care LLC. Thank you for listening to The Confessions of a reluctant caregiver podcast.