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When Surgery Doesn't Go As Planned · The SH!T Sandwich Generation

• 0:08
  SPEAKER_00: We all thought the first part was behind us.
• 0:11
  SPEAKER_00: We were wrong.
• 0:12
  SPEAKER_00: Because nobody prepares you for what comes after surgery.
• 0:15
  SPEAKER_00: The waiting, the uncertainty, the endless days inside hospital walls where life outside keeps moving, well, yours seems to stop.
• 0:25
  SPEAKER_00: Welcome back to the shit sandwich generation.
• 0:27
  SPEAKER_00: I'm Mary Beth here with my sister Susan.
• 0:30
  SPEAKER_00: Let's get into today's shit sandwich.
• 0:34
  SPEAKER_00: Susan.
• 0:36
  SPEAKER_00: So do you remember the the day of the the surgery you had gotten down there with with dad?
• 0:42
  SPEAKER_00: Or dad was already down there.
• 0:43
  SPEAKER_00: So you had drove down to be there with with dad at the surgery.
• 0:47
  SPEAKER_00: Tell me, tell me what because I wasn't there again.
• 0:50
  SPEAKER_00: I missed I think I was working again.
• 0:52
  SPEAKER_01: It went, you know, things went pr fairly smoothly that day.
• 0:56
  SPEAKER_01: She was taken on time, she she went in.
• 1:01
  SPEAKER_01: I think at one point, you know, I took dad down for for breakfast, and we came back up.
• 1:08
  SPEAKER_01: We knew it was going to be, you know, a fairly long surgery.
• 1:11
  SPEAKER_01: I remember sitting with him, stepping out actually to take a meeting while I for work, while I was waiting, getting yelled at because I was taking a meeting in the hallway.
• 1:22
  SPEAKER_01: You know, I guess these are the things that we do.
• 1:25
  SPEAKER_01: But Dad seemed pretty good.
• 1:27
  SPEAKER_01: He seemed pretty good.
• 1:28
  SPEAKER_01: I think we were really optimistic.
• 1:30
  SPEAKER_01: We were finally at that stage where she was going into surgery.
• 1:34
  SPEAKER_00: I think this was, you know, this was our our goal, our our hope, and our uh hopefully this was gonna be, you know, this was gonna be it.
• 1:42
  SPEAKER_00: This was gonna be.
• 1:43
  SPEAKER_01: They were gonna go in, take the cancer out, and then you know, do a skin flap to close her abdomen after they took the cancer out.
• 1:51
  SPEAKER_01: So, you know, she had three surgeons.
• 1:54
  SPEAKER_01: She had her oncologist, she had her vascular surgeon, and she had plastics because it was, you know, it was that involved.
• 2:03
  SPEAKER_01: And you know, vascular was there.
• 2:05
  SPEAKER_01: Obviously, she had the bypass beforehand, but vascular was there in case we got into one of the major arteries.
• 2:11
  SPEAKER_01: So, you know, I remember the first thing was the oncologist coming out, right?
• 2:15
  SPEAKER_01: And the surgical oncologist coming out and they, you know, talking to dad and I and just saying, you know, things went really well.
• 2:23
  SPEAKER_01: Yeah.
• 2:23
  SPEAKER_01: We got the cancer, we didn't get into the femoral artery.
• 2:28
  SPEAKER_01: So, you know, that was really good news.
• 2:30
  SPEAKER_01: You know, at that point she said, Oh, you know, plastics is still in, you know, they're still closing, they have to flap over the femoral artery.
• 2:38
  SPEAKER_01: This is probably more medical information than you guys need, but you know, so essentially everything had gone.
• 2:43
  SPEAKER_01: Everything had gone well.
• 2:44
  SPEAKER_00: They'd gotten the cancer as much as she thought it was clear margins.
• 2:48
  SPEAKER_00: We were smooth, kind of smooth sailing.
• 2:51
  SPEAKER_00: They were just closing, her gonna come out.
• 2:52
  SPEAKER_00: Right.
• 2:53
  SPEAKER_01: Right.
• 2:53
  SPEAKER_01: Right, yeah.
• 2:53
  SPEAKER_01: So, you know, plastics is closing, and you know, they'll be out in a little while.
• 2:58
  SPEAKER_01: So, you know, basically at that point I said, Hey dad, you know, let's go.
• 3:02
  SPEAKER_01: We've been sitting here, let's go down, let's grab something to eat.
• 3:06
  SPEAKER_01: And she had said, you know, plastics will call you, so you just go get something to eat.
• 3:10
  SPEAKER_01: So, you know, of course I'm in the cafeteria and it's really loud.
• 3:14
  SPEAKER_01: And I don't know about you, but my hearing is not what it used to be, right?
• 3:18
  SPEAKER_01: So, um, and we, you know, we get the phone call, dad gets the phone call in the in the cafeteria, and of course, what does he do?
• 3:25
  SPEAKER_01: He hands the phone right over to me, right?
• 3:28
  SPEAKER_01: He'd like, it's so funny.
• 3:29
  SPEAKER_01: Like, that's totally not our dad.
• 3:31
  SPEAKER_01: But when it came to this, he'd like hand off that phone as if it was like hot potato, like, here go.
• 3:36
  SPEAKER_01: So, you know, I talked to the to the plastic surgeon, and the story was different, you know, and that was like the first time I was like, oh, things are not really going as planned here.
• 3:50
  SPEAKER_01: Um, and you know, basically he gave a different story, you know, that she had a very invasive infection, which I think the oncologist had mentioned, but he made it sound much graver than it was, and that it was impossible to close her abdomen.
• 4:06
  SPEAKER_01: And she was going to have to have this open for a while to clear the infection, and you know, it might be a few days in the hospital.
• 4:14
  SPEAKER_00: I think he had said 48 hours to 72 hours to get her back to the OR to close.
• 4:20
  SPEAKER_00: So, okay, we're like, all right, not what we wanted to have a gaping when I'm I'm exaggerating here, but it really was.
• 4:29
  SPEAKER_00: And it wasn't a gaping wound, but it was a large area that was left open.
• 4:35
  SPEAKER_00: And I wasn't obviously there, so I hadn't seen it yet, but not the plan.
• 4:39
  SPEAKER_01: I mean, I hadn't seen it because it was like it was bandaged too.
• 4:42
  SPEAKER_01: So, you know, I think neither one of us had seen it at that point.
• 4:45
  SPEAKER_01: I think dad was still very much in a daze, you know, like okay, not what we thought, you know.
• 4:52
  SPEAKER_01: Yeah, I mean, plastics was yeah, you know, I think I had some questions.
• 4:57
  SPEAKER_01: I felt like they really didn't get answered.
• 4:59
  SPEAKER_01: Again, we were on the phone, we were in the cafeteria.
• 5:02
  SPEAKER_01: So I figured, okay, we shall come to the floor, we'll see, we'll see the surgeon tomorrow.
• 5:07
  SPEAKER_01: Right.
• 5:07
  SPEAKER_01: Right.
• 5:07
  SPEAKER_01: And I'll we'll ask more questions tomorrow.
• 5:09
  SPEAKER_01: Right, right.
• 5:10
  SPEAKER_01: So, you know, that's really how things started, you know, because of the infection, the wound was open, you know, three to five days, maybe 48 hours, we'll bring her back, we'll close it.
• 5:21
  SPEAKER_01: And that really never happened.
• 5:23
  SPEAKER_00: No, it didn't.
• 5:25
  SPEAKER_00: It did not.
• 5:25
  SPEAKER_00: And I like the way you say no.
• 5:27
  SPEAKER_00: No, I again, this is one of those times where you just kind of shake your head, and so three to five days, I think then became seven.
• 5:38
  SPEAKER_00: And then, and and again, we're we're building up towards Easter here.
• 5:42
  SPEAKER_00: And if you remember from another podcast, all my mom wanted to do was be home for Easter.
• 5:48
  SPEAKER_00: And so as they keep extending this course, we're getting closer to c and closer to Easter.
• 5:54
  SPEAKER_00: So those seven days then became 10, and it was every day, you know, she would be asking him, I'm gonna be home for Easter.
• 6:02
  SPEAKER_00: Well, is is today the day I'm, you know, what's what's going on?
• 6:06
  SPEAKER_00: And you know, I think what struck me here, and again, we're both physicians, we understand how the system works, but again, when you're on the other side, it's it's totally different.
• 6:19
  SPEAKER_00: And I'm not a I'm more of an outpatient doctor.
• 6:22
  SPEAKER_00: So but I worked inpatient though.
• 6:25
  SPEAKER_00: So yeah, doctors and patients, you know, sometimes think about time, not intentionally, I don't think, but it from a patient's perspective, it's completely then different timeline than what what doctors I think perceive, you know, to the surgical, to his, to his, the plastic surgeon's eyes, another couple days wasn't any big deal.
• 6:46
  SPEAKER_00: Yeah, right.
• 6:47
  SPEAKER_00: Who cares?
• 6:47
  SPEAKER_00: Another couple days, and then we'll get this close.
• 6:50
  SPEAKER_00: To it to my mom, it was like every single day was she didn't want to be there.
• 6:55
  SPEAKER_00: She was, she just wanted to step out of there and get home for Easter.
• 6:59
  SPEAKER_00: Honestly, she probably couldn't have cared less if they said go home right now with it open.
• 7:05
  SPEAKER_00: She just wanted to, that was her finish line, getting out and home for Easter, right, Susan?
• 7:09
  SPEAKER_01: Yeah.
• 7:09
  SPEAKER_01: I think, you know, it reminds me of my integrative medicine fellowship, where you know, one of the things we ask the patients, right, is, you know, what's your goal?
• 7:19
  SPEAKER_01: Yeah.
• 7:19
  SPEAKER_01: And we don't really do that in allopathic medicine very well.
• 7:23
  SPEAKER_01: So I think that's a really important thing to ask is what's your goal?
• 7:28
  SPEAKER_01: Because it puts a lot of things in perspective.
• 7:31
  SPEAKER_01: And, you know, again, it would have helped the family, it would have helped the teams that were rounding on her to understand where she was coming from and for her to understand where they were coming from a little bit more and honor her.
• 7:43
  SPEAKER_01: But I think, you know, Mary, you made a really good point about, you know, we know the medical system very well.
• 7:50
  SPEAKER_01: Yes, you're outpatient, but you did residency.
• 7:54
  SPEAKER_01: I did residency.
• 7:55
  SPEAKER_01: I worked inpatient for many years.
• 7:57
  SPEAKER_01: And yet still, I mean, I think you brought this up in the last podcast, you know, it was a bit of a medical mystery.
• 8:05
  SPEAKER_01: It was a bit of a medical mystery just being there.
• 8:08
  SPEAKER_01: And, you know, again, first she had multiple care teams.
• 8:11
  SPEAKER_01: Right.
• 8:12
  SPEAKER_01: Right.
• 8:12
  SPEAKER_00: So the mystery is when does those when do the teams round?
• 8:16
  SPEAKER_00: There's yeah, they're supposed to round in the morning, but it's different for every team.
• 8:20
  SPEAKER_00: Sometimes, especially for surgeons, it can be in the afternoon.
• 8:24
  SPEAKER_00: So it's so hard to kind of get, you know, be there for the rounds because you want to get the you want to talk to the doctors, right?
• 8:33
  SPEAKER_00: You just you don't want the secondhand information from not no no down towards nurses or anything like that.
• 8:38
  SPEAKER_00: But often you just want to hear it directly from the the the doctor's mouth, right?
• 8:44
  SPEAKER_00: So it's you really want to kind of get present and you want to be able to ask questions.
• 8:47
  SPEAKER_00: The the nurses only know, you know, what what the doctor tells them or what's in the chart.
• 8:51
  SPEAKER_00: So, you know, you really have questions you want to get answered, but it's a it is a medical mystery sometimes trying to figure out when they're gonna be there and and kind of who's in charge, and who's in charge, right?
• 9:04
  SPEAKER_00: And our cases we had, you know, a couple different specialties here.
• 9:08
  SPEAKER_00: So who was actually in charge?
• 9:10
  SPEAKER_00: And I I don't think there was a right answer because there was a lot of back and forth, and I think the plan changed multiple times, right?
• 9:19
  SPEAKER_01: And I think that was, you know, that was again one of those things where in the course of a day, and again, a lot of frustration for and dad and for us in terms of you know, one team would come in and say one thing, yeah.
• 9:31
  SPEAKER_01: And then, you know, a couple hours later, another team would come in and say another thing, which was contradictory to what the first team said.
• 9:38
  SPEAKER_01: Right.
• 9:38
  SPEAKER_01: And sometimes there was even a third team.
• 9:41
  SPEAKER_01: And at that point, they'd be like, you know, we'd be like, okay, well, what's gonna happen today in the third team would be like, yeah, I don't know.
• 9:49
  SPEAKER_01: Right.
• 9:49
  SPEAKER_01: Right.
• 9:49
  SPEAKER_01: And this is, I mean, I'm trying to be, you know, empathetic because these are my colleagues.
• 9:54
  SPEAKER_01: Like I I know what they're going through, but but boy, it was really hard, you know, not knowing the plan.
• 10:00
  SPEAKER_00: And then I think, Mary, you can talk a little bit about, you know, the infection and the culture and the drains and yeah, you know, so again, I wasn't there on the the the day of the surgery, and I'm there's no blame here, you know.
• 10:12
  SPEAKER_00: But okay, so she's infected.
• 10:14
  SPEAKER_00: Was culture done?
• 10:15
  SPEAKER_00: And you know, I in hindsight, you know, that question wasn't asked right away.
• 10:19
  SPEAKER_00: I wasn't there, and you know, you're just taking the doctor's word.
• 10:23
  SPEAKER_00: But, you know, so okay, it's infected.
• 10:25
  SPEAKER_00: What are we dealing with?
• 10:26
  SPEAKER_00: You're putting around antibiotics.
• 10:28
  SPEAKER_00: Do you know the know the sensitivities?
• 10:31
  SPEAKER_00: So a lot of unanswered questions.
• 10:34
  SPEAKER_00: And I think part of the the f frustration that was that, you know, one doctor was, you know, no notoriously absent.
• 10:42
  SPEAKER_00: He wouldn't round with his team, it would be a physician assistant, I believe it was a physician assistant that was rounding for him and didn't really have any answers.
• 10:50
  SPEAKER_00: And it was, well, can we talk to the doctor?
• 10:52
  SPEAKER_00: Can we talk to the doctor?
• 10:53
  SPEAKER_00: And I, you know, they didn't really have I well, I have to go back and talk to the doctor.
• 10:57
  SPEAKER_00: So we couldn't get an answer.
• 10:59
  SPEAKER_00: And at some point, I think I I actually I had got his number or had his number, so I had to text him and and call him and talk to him.
• 11:06
  SPEAKER_00: So it was frustrating.
• 11:08
  SPEAKER_00: And, you know, again, her case was a little unusual.
• 11:11
  SPEAKER_00: This isn't the typical ho a lot of times hospital courses are well, who knows?
• 11:16
  SPEAKER_00: But a lot of times there can be little bumps here and there.
• 11:19
  SPEAKER_00: But this was not the typical case.
• 11:21
  SPEAKER_00: No, so they really didn't know what to do and how to get this close so she could go back to surgery.
• 11:26
  SPEAKER_00: So it was like, okay, let's try this.
• 11:28
  SPEAKER_00: So they put a drain on, and it was the weekend, and then it just wasn't working, and but there was no one around, so had to wait until Monday.
• 11:38
  SPEAKER_00: And so it was one of those things, and I think the you know, i I think you have to when you're in the hospital and you're you're trying to get answers, you do have to know when those teams are rounding, so you can try and and and get the answers.
• 11:53
  SPEAKER_00: I think you have to advocate as much as as you can.
• 11:57
  SPEAKER_00: I mean, there were some things that really were, you know, just boggle, boggle my mind.
• 12:04
  SPEAKER_01: She ended up having, I think you had asked for the compression stockings right from the beginning.
• 12:10
  SPEAKER_01: You know, should we have those on?
• 12:12
  SPEAKER_01: And I think by, you know, 24 hours later, they still weren't on.
• 12:17
  SPEAKER_01: You know, it's questionable whether they were or not 48 hours later, but you know, very frustrating.
• 12:22
  SPEAKER_01: And then they were sitting there and not hurting, that's right.
• 12:26
  SPEAKER_01: Yeah, so you know, and again, you know, somebody that's medical may not know, but somebody who's medical, that's like very anxiety-provoking.
• 12:33
  SPEAKER_01: Now, do you put it on yourself?
• 12:34
  SPEAKER_01: Like, I it's not really my job.
• 12:36
  SPEAKER_01: I don't know what's going on.
• 12:37
  SPEAKER_01: So And she ended up having a DVT.
• 12:40
  SPEAKER_01: Right, she ended up having a complication because she didn't have the stockings on.
• 12:43
  SPEAKER_01: Now, I mean, I think at the same time, this deserves to be said, Mary, is you know, sometimes you know, you have a patient that's you know very patient.
• 12:52
  SPEAKER_01: And will you can write a list of questions and have them like verbalize that to the physician and maybe even have it written down, right?
• 13:01
  SPEAKER_01: Like that's one of the things.
• 13:02
  SPEAKER_01: But but mom was not one of those patients she was not going to give them the questions or even ask the questions.
• 13:09
  SPEAKER_01: She it's more complacent.
• 13:11
  SPEAKER_01: She was she would kind of take and um and be like, Who are you and what do you do in here?
• 13:16
  SPEAKER_01: And kind of give them a hard time, which isn't her wasn't her real personality.
• 13:21
  SPEAKER_01: I mean, generally she was very sweet, except for when she was in the hospital.
• 13:25
  SPEAKER_01: So and she wanted to get home.
• 13:26
  SPEAKER_01: You know, again, you have to understand that's where the patient's coming from, but you know, sometimes the patient can actually contribute um to the conversation in a real way, right?
• 13:36
  SPEAKER_01: But often, you know, they are going through different things and they have a different agenda, so it's hard.
• 13:41
  SPEAKER_00: So And I think that is part of the sandwich generation, right?
• 13:44
  SPEAKER_00: I I think in our our case, our parents are not as I don't want to say outspoken, but I think they're a little bit more you know, I think they still have that, you know, respect for doctors that really has gone the wayside, you know.
• 13:59
  SPEAKER_01: So, you know, the doctor is right and the doctor's word, you know, counts.
• 14:03
  SPEAKER_01: And I mean there is something to be said for that, but you know, very respectful.
• 14:08
  SPEAKER_01: I'm not gonna question the doctor, although she did by the time she was in there day 10, yeah, start like really, you know, pitching a little bit of a fit.
• 14:16
  SPEAKER_01: But you know, I think it it is generational, and I think sometimes you find that they're not going to ask the questions.
• 14:23
  SPEAKER_00: Yeah, and I think dad would try to, you know, dad as much as he could wanted to was in there, he was in his hotel, but he was in there first thing in the seven o'clock.
• 14:32
  SPEAKER_00: Seven o'clock he was in there morning to to be there for those rounds as as much as he could.
• 14:37
  SPEAKER_00: Again, they didn't always happen at the same time, so it was a little difficult.
• 14:41
  SPEAKER_00: But even so, he didn't always, you know, uh didn't know the necessarily the right questions to to ask.
• 14:49
  SPEAKER_00: And I think you, you know, you I think my recommendation to anybody that does have someone in the hospital, you know, if you you can, you know, spend if you can make it in for for rounding time, that is the time when you want to kind of be in the hospital.
• 15:06
  SPEAKER_00: Um if you have questions and you you want to get them answered, and try and be in there for a few hours, you know, every day.
• 15:13
  SPEAKER_00: The morning is most important.
• 15:15
  SPEAKER_00: Absolutely.
• 15:15
  SPEAKER_00: You definitely the morning and you know, and to check in and make sure that everything is is going and your your whoever's in your loved one is getting what they are supposed to be getting.
• 15:28
  SPEAKER_00: Unfortunately, you know, our medical system does have some flaws, and you really do have to kind of keep track of things and double check on things and be your own advocate for yourself.
• 15:38
  SPEAKER_00: One, if you're in the hospital, but two, for your whoever, whoever you're you know, you're giving care to.
• 15:44
  SPEAKER_00: You you do have to kind of check things and double check things and make sure they're getting what they're supposed to be getting and and everything is is getting done.
• 15:53
  SPEAKER_00: You know, if they're supposed to get PT, OT, make sure that that they've come that day.
• 15:58
  SPEAKER_00: You know, mom also didn't want to get up and out of bed all the time.
• 16:01
  SPEAKER_00: It was a difficult, again, this wound was in a place that made it difficult to her to kind of maneuver a little bit and it was open.
• 16:07
  SPEAKER_01: So, you know, then she had the drain on and trying to move too.
• 16:10
  SPEAKER_01: So I, you know, I think to just reiterate what you said, Mary, you know, we have a very complex medical system, right?
• 16:17
  SPEAKER_01: I mean, it's you know, we have one of the most high-tech medical systems in the world, but it's also a very complex system.
• 16:26
  SPEAKER_01: And so it really is important to advocate for yourself or your loved ones.
• 16:31
  SPEAKER_01: And there is a respectful way to do it, right?
• 16:33
  SPEAKER_01: I mean, remember your nurses are busy, they're taking care of multiple patients, your your doctors are trying.
• 16:40
  SPEAKER_01: Trying.
• 16:40
  SPEAKER_01: So, but I do think it's it is important if you have that ability to be there at the bedside.
• 16:46
  SPEAKER_01: And, you know, to dad's credit, you know, he was there.
• 16:49
  SPEAKER_01: So we were really fortunate.
• 16:51
  SPEAKER_01: But even then, like like you said, Mary, it was hard for him to do that.
• 16:55
  SPEAKER_00: And I think we gave him questions to to kind of ask if we weren't gonna be there, and he did his best to ask the questions.
• 17:02
  SPEAKER_00: But yeah, I I agree.
• 17:04
  SPEAKER_00: Our our you know, our medical system has a lot of, and we get great, you know, technology.
• 17:09
  SPEAKER_00: We've we've come a long way, and but we are an overwhelmed system, right?
• 17:14
  SPEAKER_00: It's really an overwhelmed system, and I think that's where it kind of breaks down a little bit.
• 17:19
  SPEAKER_00: So you do have to just be on on top of things, really.
• 17:23
  SPEAKER_00: So there was a lot going on and a lot of unanswered questions, and we couldn't find answers, uh, couldn't get answers, and this wound wasn't closing, and it was, you know, going on days now.
• 17:35
  SPEAKER_00: I think at one point they switched the antibiotics and then switched them to something else.
• 17:39
  SPEAKER_00: She might have gotten IV.
• 17:40
  SPEAKER_00: I think.
• 17:41
  SPEAKER_00: Did they call an I infectious disease?
• 17:43
  SPEAKER_00: I can't even remember.
• 17:44
  SPEAKER_00: I happened to be there that day.
• 17:45
  SPEAKER_01: It actually, it wasn't funny, but it was funny.
• 17:48
  SPEAKER_01: By that point, she was very feisty.
• 17:50
  SPEAKER_01: She was starting to get feisty, and I she was very feisty that day.
• 17:54
  SPEAKER_01: That infectious disease team came in, and they were lovely, they were just really nice people.
• 17:59
  SPEAKER_01: And, you know, she basically was like, I already talked to the doctors today.
• 18:03
  SPEAKER_01: You know, I mean, who are you?
• 18:05
  SPEAKER_01: I don't need to talk to you.
• 18:06
  SPEAKER_01: And I, you know, I was like, Mom, and I tried to explain to her because she's confused too, right?
• 18:11
  SPEAKER_01: She doesn't know who these people are, the difference.
• 18:14
  SPEAKER_01: And again, I think sometimes our team, the teams, medical teams, are working so fast, they assume that the patient's been told, they assume that the patient knows what's going on.
• 18:25
  SPEAKER_01: But she was she was just outright rude that day, and I had to apologize.
• 18:29
  SPEAKER_01: But I was there, and actually I was glad I was there because they really didn't know her history.
• 18:35
  SPEAKER_01: So I was able to say, This is what's going on, this is what she's already been on, and this is this is the question that needs to be answered.
• 18:43
  SPEAKER_01: So again, she wasn't really able to able to or wanting to assist with that.
• 18:50
  SPEAKER_01: Um, but they did call them in.
• 18:52
  SPEAKER_01: So it seemed like it was a long time before we saw them.
• 18:56
  SPEAKER_00: Yeah, and it was.
• 18:58
  SPEAKER_00: I mean, again, there wasn't a a clear answer, and unfortunately, the teams didn't seem like they were communicating all that that great.
• 19:05
  SPEAKER_00: So trying to kind of myself touch base with the the teams as much as I could and and try and understand the plan.
• 19:12
  SPEAKER_00: So it was a little hectic.
• 19:14
  SPEAKER_01: And at the same time, you know, dad was in the in the let's talk about dad a little bit because you know, he was very, very reluctant to leave the bedside.
• 19:23
  SPEAKER_01: Yeah, you know, he he wanted to be there every single moment of every single day.
• 19:28
  SPEAKER_01: And I think that was it was challenging because you know, he's 87 and we're trying to take care of him.
• 19:36
  SPEAKER_01: Yeah.
• 19:36
  SPEAKER_01: And he's, you know, he they fortunately they were like, you can't sleep here.
• 19:40
  SPEAKER_01: So he had to go back to the hotel.
• 19:43
  SPEAKER_01: But, you know, for him, it was hard to get him to even leave to, you know, shower, get some fresh air, get something to eat.
• 19:51
  SPEAKER_01: I think at one time, I mean, we got really lucky because I lived in that area at one point, and there had been a really good restaurant that was below my apartment, and miraculously it was still there.
• 20:03
  SPEAKER_01: And I it was like Italian restaurant.
• 20:05
  SPEAKER_01: Italian restaurant.
• 20:06
  SPEAKER_01: And one of the first days I had said, let's just go, let's see if it's there and get some food.
• 20:10
  SPEAKER_01: And Mary, he went to that restaurant every Sunday.
• 20:14
  SPEAKER_00: He did.
• 20:15
  SPEAKER_00: And the days that he didn't, he usually had leftovers that he took home and put in his his fridge.
• 20:20
  SPEAKER_00: So he did have a hotel.
• 20:21
  SPEAKER_00: Yeah, back to the hotel.
• 20:23
  SPEAKER_01: So I think that's an important point too.
• 20:24
  SPEAKER_01: If you have somebody that's staying there, you know, find a couple places for them that they they can eat.
• 20:29
  SPEAKER_01: And again, he's he's not super picky, but he's of that generation where he he's not gonna just eat anything.
• 20:36
  SPEAKER_00: So yeah, and and he had to do his laundry too, right?
• 20:38
  SPEAKER_00: I mean, we had he had to ha take some time and and again we were lucky.
• 20:42
  SPEAKER_00: We tried to coordinate, you know, days when somebody was gonna be there.
• 20:46
  SPEAKER_00: But I think as this went on, you know, we went from three to you know, two to three to seven, you know, and somebody was trying to be there every day.
• 20:54
  SPEAKER_01: Slowly we kind of had to skip a day, and it was well, I think at one point I even like said, I'm gonna just I'm gonna take FMLA.
• 21:02
  SPEAKER_01: Yeah.
• 21:03
  SPEAKER_01: Because I was getting exhausted driving back and forth and uh I was working in a different state.
• 21:09
  SPEAKER_01: And yeah, you know, that's what FMLA is there for, but it is really hard to come to terms with taking FMLA for some of us.
• 21:18
  SPEAKER_01: And you know, even then I felt like I you're not supposed to work when you're off on FMLA, but even then I felt like I was working on FMLA.
• 21:24
  SPEAKER_00: I'm sure I'm sure and we'll talk a little a little bit more about that in another yeah.
• 21:29
  SPEAKER_00: But uh, you do as a caregiver, uh you know, you and my dad too, we had to urge him, you know.
• 21:34
  SPEAKER_00: It feels kind of odd, you know, sometimes taking a break, walking out of the hospital, right?
• 21:39
  SPEAKER_00: You don't want to leave your your loved one.
• 21:41
  SPEAKER_00: I don't know if there's fear there or you know, something might happen, or just the connection of being next to them, but you do.
• 21:49
  SPEAKER_00: You have to to leave them and go, you know, eat, go home, go sleep, take care of what you need to take care of, your kids, go to work.
• 21:57
  SPEAKER_00: You have to.
• 21:58
  SPEAKER_00: And you know, if you're not leaving your Love one, you're not recharging, right?
• 22:02
  SPEAKER_00: And I think you can't show up for them in the capacity that you need to if you're you're not taking care of yourself.
• 22:08
  SPEAKER_00: Caregivers are human as well.
• 22:09
  SPEAKER_00: And sometimes I think we we we forget that.
• 22:12
  SPEAKER_00: But I think you know, part of this story as we kind of went on, I think, you know, so it wasn't closing.
• 22:18
  SPEAKER_00: And the question was, is she gonna leave without this close?
• 22:22
  SPEAKER_00: What's going on?
• 22:24
  SPEAKER_00: Now we're on kind of day 10, and I think you know, the Easter thing was, you know, always in the back of her her mind.
• 22:31
  SPEAKER_00: And I think she asked almost every single day, right?
• 22:34
  SPEAKER_01: Honestly, I think at one point they said, Well, you will be home for Easter.
• 22:37
  SPEAKER_01: Yes.
• 22:38
  SPEAKER_01: So there was a lot of back and forth.
• 22:39
  SPEAKER_01: There was a lot of back and forth.
• 22:41
  SPEAKER_01: You know, that just you know, when they told her that, she was so excited.
• 22:44
  SPEAKER_00: She was she was like, I'm leaving today, and I was like, Because I think I made I was making food for Easter because at some point they were like, Yep, she's coming home.
• 22:54
  SPEAKER_00: I'm like, all right, I'll make the monogatti, I'll make this, I'll make that.
• 22:57
  SPEAKER_00: And and then it was not so sure.
• 23:00
  SPEAKER_00: And then, you know, then it was okay, Saturday before Easter, you're going home.
• 23:04
  SPEAKER_01: Sunday, you're going home on Easter.
• 23:06
  SPEAKER_01: I mean, but the reality was I think, you know, Mary and I realized when we got to Friday, it was very unlikely that she was going to be discharged on Saturday or Sunday of a holiday weekend.
• 23:16
  SPEAKER_01: Yeah.
• 23:17
  SPEAKER_01: And I think Mary at one point, I I don't remember who was the one that said it to her, but I think at one point, you know, basically said, You're you're not going to be home for Easter.
• 23:25
  SPEAKER_01: And there was just a Yeah.
• 23:29
  SPEAKER_00: There was a it was a different Yeah.
• 23:31
  SPEAKER_00: It was a different because I I I I it was she just there was a face, and I don't know what that face was.
• 23:38
  SPEAKER_00: I don't know if it was sadness.
• 23:39
  SPEAKER_00: I don't it maybe a little bit of loss of hope.
• 23:42
  SPEAKER_00: Hope hope.
• 23:44
  SPEAKER_00: Yeah, I guess that would be hope.
• 23:45
  SPEAKER_00: I mean, I had spent several days, you know, in the beginning of that hospital stay kind of talking to her about Easter.
• 23:52
  SPEAKER_00: Like let's focus on Easter.
• 23:53
  SPEAKER_00: Yeah, let's focus on Easter, you know, to think about happy things and you know, get you through.
• 23:58
  SPEAKER_00: You know, we talked about what do you want to eat at Easter, you know, managati, ham, what kind of dessert do you want?
• 24:05
  SPEAKER_00: You know, all those the traditional things, right?
• 24:07
  SPEAKER_00: You talk about the traditions.
• 24:09
  SPEAKER_00: Who do you want at Easter?
• 24:11
  SPEAKER_00: You know, all of those to get her kind of keep that hope up and motivated to eat healthy and you know, get herself back to where she needed to be so this could also close, right?
• 24:22
  SPEAKER_00: We wanted her nutrition up because this this was uh you know something.
• 24:26
  SPEAKER_01: He was like, You need to eat, you need to eat, yeah, you know, Italian family, you need to eat, you need to eat.
• 24:31
  SPEAKER_01: But I think one of the things that struck me, Mary, about it is, you know, she didn't yell.
• 24:36
  SPEAKER_01: No, she didn't, she didn't cry, but that also made it, I think, even more like dramatic.
• 24:43
  SPEAKER_01: Like it was just that loss of of hope that went away.
• 24:48
  SPEAKER_01: And I I do think that was a bit of a turning point for her and her her medical care.
• 24:54
  SPEAKER_00: I I do as well, and that gives me chills, just kind of remembering that.
• 24:58
  SPEAKER_00: And and I will say also for me, it also was a little bit of a a disappointment, right?
• 25:04
  SPEAKER_00: Knowing that she wasn't gonna be home and how much that meant to her.
• 25:09
  SPEAKER_00: And honestly, how much, you know, it's Easter is a big deal.
• 25:14
  SPEAKER_00: So how you know, kids weren't gonna be with her for for Easter as as well.
• 25:19
  SPEAKER_00: And how what were we gonna do now, right?
• 25:21
  SPEAKER_00: Right.
• 25:22
  SPEAKER_00: Yeah.
• 25:22
  SPEAKER_01: So actually being in the h hospital through a holiday, I don't think we actually really thought about that until just now, is also very challenging.
• 25:31
  SPEAKER_01: And I think we tried to, you know, we tried to figure out okay, well, if she is in the hospital, does everybody come down?
• 25:37
  SPEAKER_01: Right.
• 25:38
  SPEAKER_01: That wasn't gonna happen.
• 25:39
  SPEAKER_01: We knew that.
• 25:39
  SPEAKER_01: Um, if you listened to the other episode, last podcast.
• 25:43
  SPEAKER_01: But I think Mary, you you actually were very thoughtful and you went and you got like a little Easter basket for dad to give mom.
• 25:51
  SPEAKER_00: Yeah, I think I had, I don't know if I had asked mom what she wanted for Easter, or I asked dad, but somewhere along the lines she said she wanted a chocolate bunny, or maybe dad said she wanted it, he wanted to give her a small chocolate bunny.
• 26:03
  SPEAKER_00: So I go to one Easter, and we all pretty much do the same store Easter store to get our chocolate for 30 years, because that's what we do.
• 26:11
  SPEAKER_00: Maybe probably longer because my parents have been going there for our Easter candy.
• 26:16
  SPEAKER_00: True, it's probably like 50.
• 26:19
  SPEAKER_00: It's no joke.
• 26:20
  SPEAKER_00: So the store has been around for a while and it's pretty good chocolate.
• 26:24
  SPEAKER_00: So, you know, I had to get my Easter uh Easter candy anyways for for my kids.
• 26:29
  SPEAKER_00: So I picked up a small Easter bunny and the chocolate Easter bunny and probably some.
• 26:33
  SPEAKER_00: I think I got some jelly beans because my dad likes jelly beans, and I put them in a small basket.
• 26:37
  SPEAKER_00: And I think I was down there, I don't know.
• 26:40
  SPEAKER_00: I think the boys might have come down with me just to I don't think it might have been Friday.
• 26:44
  SPEAKER_00: I don't know if it was Friday or Saturday.
• 26:46
  SPEAKER_00: We kind of all saw her before Easter.
• 26:48
  SPEAKER_00: But yeah, gave her my dad a little basket with some candy in it to give to her.
• 26:53
  SPEAKER_00: And I know, Susan, you brought her an Easter lily.
• 26:55
  SPEAKER_01: She loves flowers, so you know, brought her a big, you know, flower basket with uh, you know, lily and tulips and you know, trying to make it the best it could be for her.
• 27:04
  SPEAKER_00: Yeah, and I I think at that point we did ask her and dad what they wanted, if they wanted everyone to come down or what they wanted to do.
• 27:13
  SPEAKER_01: And I I I think if you've ever been to a holiday at our at our house, you'll know he probably said, and she probably said no.
• 27:22
  SPEAKER_01: Much more peaceful, yeah.
• 27:24
  SPEAKER_01: Or any holiday with any family, right?
• 27:26
  SPEAKER_00: Yeah.
• 27:26
  SPEAKER_00: So, you know, in the end, we we made the the decision that it still sticks with me.
• 27:32
  SPEAKER_00: The decision was that we'd all stay with our our own families, and I think we didn't even get together as um siblings.
• 27:39
  SPEAKER_00: I think we all stayed stayed home, and it it does stick stick with me even to uh you know this day.
• 27:46
  SPEAKER_00: Obviously, my kids were were with me, but we we stayed home and my mom and dad stayed together in the the hospital and had Italian food from that restaurant.
• 27:57
  SPEAKER_00: No, no, I think they had um they did.
• 27:59
  SPEAKER_00: No, uh I I think they had the hospital had yeah, Easter.
• 28:02
  SPEAKER_00: Maybe they did have lamb.
• 28:04
  SPEAKER_00: I think the Easter I stand corrected.
• 28:08
  SPEAKER_00: But again, my dad, you know, stayed right by her side, and you know, it just Easter looked completely different.
• 28:16
  SPEAKER_00: We tried to again try to keep her somewhat of a hope alive by saying we'd celebrate Easter at at some point, but it it wasn't the it wasn't the same.
• 28:25
  SPEAKER_00: She just didn't have that excited look on her face.
• 28:30
  SPEAKER_01: And yeah, I think it was all she was deflated, I think, you know, is probably the best word for it.
• 28:35
  SPEAKER_00: But you know, again, that's reality.
• 28:38
  SPEAKER_00: Yeah, we couldn't we couldn't fix this at at this point.
• 28:40
  SPEAKER_00: We couldn't get her out for Easter.
• 28:42
  SPEAKER_00: And sometimes that's how the you know caregiving goes.
• 28:46
  SPEAKER_00: You can't always predict, you can't always plan, but you have to kind of roll with it and you have to find some of those small moments or the small normals, like a small Easter, you know, your small Easter basket, and try and do something in the middle of the chaos, right?
• 29:04
  SPEAKER_00: And I think that might look different for everyone.
• 29:06
  SPEAKER_01: The other thing we were able to acknowledge and even you know, maybe convey to mom and dad was that it's important to have things planned before you go home.
• 29:16
  SPEAKER_01: Right.
• 29:16
  SPEAKER_01: So to rush it on a holiday weekend was not the smartest thing to do.
• 29:22
  SPEAKER_01: And I I do think that helped a bit.
• 29:24
  SPEAKER_01: And I think they both understood that, like, oh, maybe this isn't the best time to go home.
• 29:28
  SPEAKER_01: But I think just recognizing that sometimes just making sure that all that the discharge planning is is in order is really important.
• 29:38
  SPEAKER_00: So especially at at that age, you really need a plan in place.
• 29:43
  SPEAKER_00: And I think we taught talked a little bit and we'll get a little bit more into this, but you need you need some structure when you're you're walking out of the hospital and you need to know what the plan is going to be.
• 29:53
  SPEAKER_00: So taking a little bit of extra time is always always appropriate in these situations and and not rushing it.
• 30:01
  SPEAKER_00: And so I think, you know, yes, could she have maybe gotten I don't think so, but how we might have been able to push.
• 30:09
  SPEAKER_00: You also have to listen to your doctors, right?
• 30:10
  SPEAKER_00: The recommendation was to stay in.
• 30:12
  SPEAKER_00: You don't, you know, they're they're making your doctors are making their best, you know, their bet best re recommendations based on your case.
• 30:20
  SPEAKER_00: You're not always gonna always agree, but sometimes you do have to to listen.
• 30:25
  SPEAKER_00: So it wasn't wasn't an easy thing.
• 30:28
  SPEAKER_00: Susan, what what what do you think you kind of learned from this?
• 30:33
  SPEAKER_01: So I think one of my biggest things was, I mean, obviously we talked about advocating for your loved one and and discharge planning, but I think just bringing it back to, you know, Mary, we were two people who, you know, were we we've spent our careers in medicine and at the hospital.
• 30:50
  SPEAKER_01: And I mean we've taught we talked about this before.
• 30:53
  SPEAKER_01: I mean, we've been at the hospital, we used to sleep at the hospital, shower at the hospital, eat at the hospital, socialize at the hospital when we were when we were practic when we're practicing medicine.
• 31:05
  SPEAKER_01: I mean, that's normal.
• 31:06
  SPEAKER_01: But you know, walking into a hospital room as a doctor is one thing.
• 31:13
  SPEAKER_01: But walking into that hospital room as a daughter was really something completely different.
• 31:18
  SPEAKER_01: And I think I was always pretty empathetic, but realizing really how different those hallways feel when you're, you know, there with your loved one.
• 31:28
  SPEAKER_01: Yeah.
• 31:28
  SPEAKER_01: And no one can really prepare you for how that's gonna feel and how caregiving is going to feel.
• 31:35
  SPEAKER_01: And I think, you know, one of the things that that happened for us, right, is at one point uh the hospital stopped feeling like a place we were visiting and really started feeling like our second home.
• 31:49
  SPEAKER_00: Absolutely.
• 31:50
  SPEAKER_00: Yeah, it it really uh did.
• 31:53
  SPEAKER_00: And I think that's where we kind of pick up in the next episode.
• 31:57
  SPEAKER_00: What happens when the hospital really kind of becomes your your home, right?
• 32:03
  SPEAKER_00: Yeah.
• 32:04
  SPEAKER_00: Thanks for listening to the shit sandwich generation.
• 32:07
  SPEAKER_00: If today's episode made you laugh, cry, or just feel more seen, share it with someone who's in this with you and follow us on whatever platform you you listen to us.
• 32:18
  SPEAKER_00: Subscribe and leave a review.
• 32:21
  SPEAKER_00: Until next time, remember, you're not alone, you're doing better than you think, and you really don't have to stay.