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Transcript

When the Hospital Becomes Home · The SH!T Sandwich Generation

• 0:04
  SPEAKER_00: At some point during a long hospital stay, stop counting the hours and start organizing your life around the hospital.
• 0:11
  SPEAKER_00: You learn where to park, which elevator is the fastest, when the cafeteria closes, where you can take a work call without being asked to move, and which chair is slightly less uncomfortable than all the others.
• 0:24
  SPEAKER_02: Yeah, you keep your clothes in the car, you eat when you can, you answer emails from the hallway and try to remember what day it is.
• 0:32
  SPEAKER_02: The hospital stops being somewhere you visit, and it starts really being where your family is living.
• 0:37
  SPEAKER_00: Welcome back to the shit sandwich generation.
• 0:40
  SPEAKER_00: I'm Mary Beth.
• 0:41
  SPEAKER_00: And I'm Susan.
• 0:42
  SPEAKER_00: Today we're talking about what happens when life outside the hospital keeps moving, but your life starts revolving around one room.
• 0:53
  SPEAKER_00: And I think that room becomes the number.
• 0:57
  SPEAKER_00: I don't even remember what number it was.
• 0:58
  SPEAKER_02: I don't remember either, or the floor.
• 1:01
  SPEAKER_00: Yeah, I yeah, I don't either.
• 1:03
  SPEAKER_00: But 18, 17.
• 1:04
  SPEAKER_00: I think it was 17, but it just becomes you know directly how to park your car, which garage to use, what time to get there so that there's not a long line, which elevator is going to be the fastest to bring you up to that room.
• 1:22
  SPEAKER_00: Right?
• 1:23
  SPEAKER_00: Am I right?
• 1:23
  SPEAKER_02: Yeah, you know, when how to get directly there the quickest.
• 1:27
  SPEAKER_02: And then, you know, I think when I think about it, Mary, we thought we were just gonna be there for 48 to 72 hours.
• 1:36
  SPEAKER_02: Like that was supposed to be the length of mom's stay.
• 1:38
  SPEAKER_02: So, you know, here we're like, okay, we've got this, you know, we know how to get to her room, we know where we're going, kind of settled in.
• 1:45
  SPEAKER_00: We had been there, you know, uh a year a year earlier, so kind of knew the layout.
• 1:51
  SPEAKER_00: So okay.
• 1:51
  SPEAKER_02: We were feeling pretty confident.
• 1:53
  SPEAKER_02: We were we were like, we got this for three days, we can do this, mom can do this for three days, dad can do this for three days, and then three days was not three days, right?
• 2:06
  SPEAKER_02: So I think that's a lot of what started to happen is it gradually this we gradually stopped living at our houses and started living at the hospital, and you don't even realize it's happening.
• 2:19
  SPEAKER_00: Yeah, and and I would say kind of living in in car our car too, right?
• 2:23
  SPEAKER_00: Because it was, you know, again, and we've talked about this, it was a drive to the city, which we're not that far, but with traffic, it it can take if you're the times were going, it can take 90 minutes to two and a half hours.
• 2:36
  SPEAKER_00: Yeah.
• 2:37
  SPEAKER_00: So it was not it was it was not only the hospital, it was the the car.
• 2:42
  SPEAKER_00: And you know, this those few days became I don't know how many days, you know, it was that unknown.
• 2:49
  SPEAKER_00: So how many days do you take off from work?
• 2:52
  SPEAKER_00: How many days does dad does reserve the hotel?
• 2:56
  SPEAKER_00: You we don't know who can be there tomorrow because don't know what tomorrow is gonna bring.
• 3:03
  SPEAKER_00: It's the and h hospital time is is so strange, right?
• 3:07
  SPEAKER_00: It's not your start losing track of what day of the week it is.
• 3:10
  SPEAKER_02: You do.
• 3:11
  SPEAKER_02: Even what hour it is.
• 3:12
  SPEAKER_02: I mean, you know, again, you can come in first thing in the morning and you know, you leave and it's it's dark, and the whole day has gone by, and sometimes you go, what happened today?
• 3:24
  SPEAKER_02: Did we make any traction?
• 3:26
  SPEAKER_02: Did we make any progress?
• 3:27
  SPEAKER_02: Progress, right?
• 3:28
  SPEAKER_02: Did did anybody eat, did anyone sleep, including the patient?
• 3:31
  SPEAKER_02: But I do think hospital, I always noticed that.
• 3:34
  SPEAKER_02: You know, even when I was, you know, a resident and attending physician, like hospital time is really just different.
• 3:43
  SPEAKER_02: You're in like a completely different world.
• 3:45
  SPEAKER_00: Very different.
• 3:46
  SPEAKER_00: Even as a patient, it's completely different.
• 3:48
  SPEAKER_00: But when you're you're sitting there as the caregiver, you just sometimes you're waiting, and you're there for for your whoever, your loved one, but sometimes you're waiting for one conversation to happen or one procedure to be done, and you think you know when it's gonna be done, and it and sometimes you're just it doesn't happen, and you're you're waiting, you're waiting for those rounds, waiting for that procedure, waiting for test results, or just kind of waiting to hear what the day is gonna bring is is the for us, it was, you know, how's the wound looking?
• 4:24
  SPEAKER_00: What's gonna what are we doing here?
• 4:26
  SPEAKER_00: Um is she going home?
• 4:27
  SPEAKER_00: So going home.
• 4:30
  SPEAKER_00: So it was, you know, a very kind of bizarre.
• 4:34
  SPEAKER_00: It's time, it's very bizarre time-wise.
• 4:37
  SPEAKER_00: And while you're in the hospital, you're almost in a you're in another world, right?
• 4:42
  SPEAKER_00: And that world is you still have your outside life going on, right?
• 4:47
  SPEAKER_02: Well, that's the thing.
• 4:47
  SPEAKER_02: Like time is, you know, you've got this this sort of time warp, right?
• 4:51
  SPEAKER_02: In the in the hospital.
• 4:53
  SPEAKER_02: So you're in the hospital and you're waiting for the results, like you said.
• 4:56
  SPEAKER_02: You're waiting for this person to see mom and and uh outside the hospital, everything else is still going on that you normally would be doing, right?
• 5:05
  SPEAKER_02: Your regular day, like your work emails are still coming in, right?
• 5:09
  SPEAKER_02: And and piling up.
• 5:11
  unknown: Yeah.
• 5:12
  SPEAKER_02: Your your kids are still needing, you know, asking, what are we eating tonight for dinner?
• 5:18
  SPEAKER_02: Right.
• 5:18
  SPEAKER_02: 100%.
• 5:19
  SPEAKER_00: What time are you going to be home tonight?
• 5:20
  SPEAKER_00: What time?
• 5:21
  SPEAKER_02: Um, yeah, you know, I mean, there's still all the the bills still need to be paid, right?
• 5:26
  SPEAKER_02: Meetings.
• 5:26
  SPEAKER_00: You still have meetings that you you have to attend.
• 5:29
  SPEAKER_00: And, you know, sometimes you're trying to even fit those in at the hospital.
• 5:33
  SPEAKER_00: I mean, I I can remember sitting in a in a chair.
• 5:37
  SPEAKER_00: Um, mom was uh in a room with uh another patient, but I had a meeting I had to take, and dad had, I don't know, dad had I probably told him to go take care of himself.
• 5:47
  SPEAKER_00: So I had a meeting and I just had to do it sitting there in the chair.
• 5:51
  SPEAKER_00: I didn't want to leave mom because although she was, you know, could be left, it was, you know, again, probably waiting for somebody to come in at that point.
• 5:59
  SPEAKER_00: So I didn't want to want to leave her.
• 6:01
  SPEAKER_00: So I had to take the meeting right there and was trying to be as quiet as I I could be, but it's, you know, and and speak if I had to to speak.
• 6:10
  SPEAKER_02: It's kind of a bizarre thing, right?
• 6:12
  SPEAKER_02: Yeah, it really is.
• 6:13
  SPEAKER_02: It really is.
• 6:13
  SPEAKER_02: And I I think mom didn't want to be left alone either, is the other thing.
• 6:17
  SPEAKER_02: She was very, you know, I mean, the hospital is can for for somebody that I mean, most of us are unfamiliar with it, let's face it.
• 6:24
  SPEAKER_02: Um, it's it's a very a place to the the people are very vulnerable, yeah, right.
• 6:28
  SPEAKER_02: So as a patient, you're very vulnerable.
• 6:30
  SPEAKER_02: I think as a family, you feel very vulnerable too.
• 6:33
  SPEAKER_02: So I think it was very natural for her to not want you to leave, even though she was okay, right?
• 6:38
  SPEAKER_02: So yeah, a lot of those meetings were taken at the bedside, or sometimes sometimes I'd go, I got yelled at a couple times for trying to take it in a nook.
• 6:47
  SPEAKER_02: Like I think I probably was in a storage closet trying to take a meeting.
• 6:52
  SPEAKER_02: Exactly.
• 6:52
  SPEAKER_02: Because I didn't want to be off the floor, right?
• 6:55
  SPEAKER_02: But I I I needed to take the meeting.
• 6:57
  SPEAKER_02: It's not funny.
• 6:58
  SPEAKER_02: I think one of the word that comes to mind for me, Mary, is is weary.
• 7:03
  SPEAKER_02: Like I think I started to feel very weary, like the day after day drag of being in the hospital.
• 7:12
  SPEAKER_02: You know, the first we had the first three days planned out.
• 7:16
  SPEAKER_02: We, you know, you were gonna be there one day, I was gonna be there one day, dad was gonna be there one day.
• 7:20
  SPEAKER_02: But then after that, it really started to get very weary.
• 7:25
  SPEAKER_02: Yeah.
• 7:26
  SPEAKER_02: It's tiring.
• 7:27
  SPEAKER_02: And it really is.
• 7:28
  SPEAKER_00: It's it's tiring.
• 7:29
  SPEAKER_00: Not not physic, you know, not necessarily physically tiring because you're you're just sitting there and making sure your your your loved one is you know, eating, picking what they want off the menu, getting the whatever therapy they're supposed to be getting.
• 7:45
  SPEAKER_00: So you're just sitting there, but it's tiring, right?
• 7:48
  SPEAKER_00: It's just w where is on you.
• 7:50
  SPEAKER_00: Again, the drive wear is on you.
• 7:52
  SPEAKER_00: And so it's not only it is physically, I guess it is physically kind of tiring, but it's very emotionally draining and you know, not taking away from the patient because the patient is obviously, you know, it's it's a a a very stressful event for the patient to be in the hospital, but it also is for the caregiver, right?
• 8:16
  SPEAKER_00: And I think we sometimes don't focus on on the caregiver.
• 8:20
  SPEAKER_00: We focus so much on that that patient, but the patient is being taken care of, right?
• 8:27
  SPEAKER_00: They have they have the nursing, they have the food being brought to them, although it's not always that great of food, but they have people taking care of them, but then you have the caregiver, which no one's really saying, hey, how are how are you doing?
• 8:41
  SPEAKER_00: Right, do you need anything?
• 8:42
  SPEAKER_00: Do you need anything to do today?
• 8:44
  SPEAKER_02: Right.
• 8:44
  SPEAKER_02: I mean, sometimes you will have a nurse that that does ask, you know, that realizes somebody's sitting there.
• 8:49
  SPEAKER_02: But I'm thinking, Mary, like what I remember is you and I were we we were taking care of mom, but also we were taking care of dad, right, who was a caregiver too.
• 9:00
  SPEAKER_02: Absolutely.
• 9:00
  SPEAKER_02: And I think what we forgot is that we were caregivers as well.
• 9:04
  SPEAKER_02: 100%.
• 9:05
  SPEAKER_00: Yeah, I never really thought of myself as a caregiver because we focused so much dad as the the caregiver, and he was the primary caregiver.
• 9:13
  SPEAKER_00: But yes, there's so you know, you don't just have necessarily one caregiver.
• 9:18
  SPEAKER_00: There's kind of a group.
• 9:20
  SPEAKER_00: If you're lucky, you have a team of caregivers.
• 9:22
  SPEAKER_00: And not everybody does, but yeah, so a lot of our focus, again, um, in the hospital was on dad as well, right?
• 9:30
  SPEAKER_00: So it wasn't just mom, let's make sure mom is taken care of, but it was it was dad as well.
• 9:37
  SPEAKER_02: Did you eat dad?
• 9:38
  SPEAKER_02: Did you sleep, dad?
• 9:40
  SPEAKER_02: Did you did you shower, dad?
• 9:42
  SPEAKER_02: Did you put on clean clothes, dad?
• 9:44
  SPEAKER_02: Yeah, you know.
• 9:45
  SPEAKER_02: Are you gonna go back to the hospital or the hotel?
• 9:48
  SPEAKER_02: You know, what time are you gonna go back?
• 9:50
  SPEAKER_02: You know, are you gonna shave today?
• 9:53
  SPEAKER_00: Yes, are you gonna shave today?
• 9:54
  SPEAKER_00: I mean, uh, he went for days without I'm not even sure how often he shaved, but I again I can remember, you know, driving down and and I would try and again try and pick the best time to drive down.
• 10:06
  SPEAKER_00: But probably my first question was when I got to the hospital, Dad, did you have breakfast?
• 10:10
  SPEAKER_00: Dad, did you did you get some sleep?
• 10:13
  SPEAKER_00: Dad, do you want to take a break?
• 10:14
  SPEAKER_00: You know, so it was because he was already there.
• 10:17
  SPEAKER_00: So, but yeah, we were so also uh focused on on him and trying to relieve him because he he needed to take time for for himself as well.
• 10:28
  SPEAKER_00: Even, you know, he didn't want to, he didn't want to leave mom's side.
• 10:32
  SPEAKER_00: But he after this started to drag on for days, you know, realized, yeah, you're gonna have to take care of yourself as well, Dad.
• 10:40
  SPEAKER_02: You're gonna have to Yeah, you're 87, Dad.
• 10:43
  SPEAKER_02: You can't you can't not eat or drink or sleep, you know.
• 10:47
  SPEAKER_02: And I think that's you know, one of the things that we really want to focus on, Mary, is that care giving often means, you know, noticing who's taking care of the person, who's that person sitting at the bedside with the patient.
• 10:58
  SPEAKER_02: Yeah, dad, did you have to sometimes no one's taking care of them?
• 11:01
  SPEAKER_00: Yeah, Dad, you have all your medicine dead.
• 11:03
  SPEAKER_00: Dad, you have do you need anything?
• 11:05
  SPEAKER_00: I think we had to, um, I think at some point you had to go back to the house and get some more stuff for him because this is more clothes, more socks, right?
• 11:14
  SPEAKER_02: Yeah, I mean it's a very, it was a very interesting time.
• 11:18
  SPEAKER_02: And I think Mary, the one thing I do want to like highlight too is I think we were, I thought did a very good job.
• 11:26
  SPEAKER_02: You know, there was a lot of guilt around are we here enough?
• 11:28
  SPEAKER_02: You know, what are we doing for work?
• 11:30
  SPEAKER_02: Are we at work enough?
• 11:31
  SPEAKER_02: Are we taking care of the kids enough?
• 11:33
  SPEAKER_02: I think as caregivers ourselves, you know, uh were you th ever thinking about yourself?
• 11:40
  SPEAKER_02: What were you doing to take care of yourself?
• 11:42
  SPEAKER_02: I mean, yeah, we had our clothes in the car, yeah, we had our protein bars.
• 11:46
  SPEAKER_02: Yeah, I think we had a water bottle, yeah, we had our computers for work.
• 11:50
  SPEAKER_02: Yeah.
• 11:51
  SPEAKER_00: I I definitely had those protein protein bars and probably a bag of nuts sitting in the car.
• 11:56
  SPEAKER_00: And those were my, my, my, I don't know, probably sometimes my dinner snap pre-dinner, because again, kind of trying to time the the traffic home.
• 12:06
  SPEAKER_00: And I could say there were times when, you know, I would know I should leave now and that should was there, but I didn't want to, and I should leave because I missed the traffic.
• 12:16
  SPEAKER_00: I get home to my kids, but I didn't I I didn't want to.
• 12:20
  SPEAKER_00: I didn't want to leave mom yet, didn't want to leave dad, wanted to wait and see wait for the the rounds from whoever was rounding to get some answers.
• 12:28
  SPEAKER_00: So that traffic then became instead of an hour and 45, now it was two and a half, you know, whatever hours to get home.
• 12:37
  SPEAKER_00: But yeah, that that again, that time.
• 12:39
  SPEAKER_00: But I can say all I do all I remember from that time is just I'm tired.
• 12:44
  SPEAKER_00: I'm tired.
• 12:46
  SPEAKER_00: I I'm tired.
• 12:47
  SPEAKER_00: I'm really not doing too much for myself, kind of going home to my my kids and doing what they need to do.
• 12:54
  SPEAKER_00: The, you know, trying to go down there the days that I wasn't working, so I didn't have to reschedule patients, so trying to kind of time my days as best I could.
• 13:03
  SPEAKER_00: So I didn't do a whole lot for myself, unfortunately, and that, you know, would not recommend that.
• 13:09
  SPEAKER_00: But Susan, what did you do for yourself?
• 13:11
  SPEAKER_02: Yeah, I mean, Mary, as you're talking about this, you know, I'm thinking about that running on fumes, right?
• 13:17
  SPEAKER_02: You you were running on fumes.
• 13:19
  SPEAKER_02: And and I have to say, I think I was too, right?
• 13:22
  SPEAKER_02: I I think we were to some extent looking out for each other, but so focused on mom and dad that we were just running on fumes and and often just running from one thing to the next.
• 13:34
  SPEAKER_02: So I can't honestly say that I think I did anything for myself except for eat a protein bar and and drink some water, you know, and say, you know, try to get away.
• 13:46
  SPEAKER_00: Yeah, you were trying to do to do the basics.
• 13:50
  SPEAKER_02: Yeah.
• 13:50
  SPEAKER_02: So, you know, I think there's just that point where you have to say I don't even know how to do it.
• 13:57
  SPEAKER_02: So I'm thinking, like, how as a caregiver do you say to yourself, you know, it's really important for me to take care of myself too.
• 14:06
  SPEAKER_02: How do how do you balance that?
• 14:08
  SPEAKER_02: And I'm not sure that there's a right or a wrong answer to that, but I do know, you know, one of the things that mom would often say to me, and this was kind of funny, you know, was you have to stop working.
• 14:19
  SPEAKER_02: You have to stop working.
• 14:20
  SPEAKER_02: It's it's too much for it's too much for you to work.
• 14:24
  SPEAKER_02: Work is too much, it's stressing you out.
• 14:26
  SPEAKER_02: I mean, it was it's kind of funny.
• 14:28
  SPEAKER_02: It is hindsight, and she she never said it to you.
• 14:30
  SPEAKER_02: I don't know.
• 14:30
  SPEAKER_02: No, she didn't think you needed to stop working.
• 14:33
  SPEAKER_00: She didn't say it to me, so I'm not sure why, but but yeah, I mean, you were again going back and forth.
• 14:39
  SPEAKER_00: But yeah, in hindsight, you know, she had a lot of insight.
• 14:43
  SPEAKER_02: I mean, you know, she really it's a bad sign when the patient is like, I think you need to stop working.
• 14:50
  SPEAKER_02: But I think what we need to realize sometimes is that yeah, it's important to take care of them, but if we're not taking care of ourselves, we're not gonna be able to take care of them is really so important.
• 15:02
  SPEAKER_02: And, you know, that's one of the things I I don't know if I really thought that when she was saying you have to stop working.
• 15:09
  SPEAKER_00: I mean, that gives up that that brings up a good point though, right?
• 15:12
  SPEAKER_00: I mean, most caregivers can't stop working, right?
• 15:15
  SPEAKER_00: You you you need to continue to hold your job and have that that income that's coming in.
• 15:22
  SPEAKER_00: So uh, you know, there are a lot of, and we'll we'll get into podcasts about this, there are a lot of resources now for caregivers, but yeah, you can't just stop working.
• 15:32
  SPEAKER_00: Yes, you can take FMLA if you need to, but it's a process.
• 15:36
  SPEAKER_00: It's not a it's not a simple, you know, I I'm gonna take FMLA and the next day you're out of uh off.
• 15:43
  SPEAKER_00: Right.
• 15:43
  SPEAKER_00: Right.
• 15:43
  SPEAKER_00: So she definitely had insight, but I think you you brought up you brought up a good point that you know care taking care of yourself can look you know, in a hospital is gonna look very different than you know, outside of the hospital.
• 15:58
  SPEAKER_00: So I remember you saying that you had a cup of you just went and took a cup of coffee or something.
• 16:03
  SPEAKER_00: Yeah, yeah.
• 16:04
  SPEAKER_02: I think it was one of those times that I was like, I need to take a meeting, and I don't know where I'm gonna take this meeting.
• 16:10
  SPEAKER_02: So, you know, I left the bedside and I thought, you know what, I could really use a cup of coffee because I was probably exhausted.
• 16:16
  SPEAKER_02: So I get grabbed a cup of coffee.
• 16:18
  SPEAKER_02: I went to the, you know, one of the family waiting areas.
• 16:21
  SPEAKER_02: I think I did my meeting meeting, and then I said, you know, I'm just gonna do a few few emails here.
• 16:26
  SPEAKER_02: And I don't think I realized it at the time, but you know, it kind of felt like a mini vacation.
• 16:32
  SPEAKER_02: I'm sure it did.
• 16:33
  SPEAKER_02: Right.
• 16:33
  SPEAKER_02: Like I mean, I did feel actually a little guilty while I was sitting there, but that to me in that moment was just such a a small moment of self-care.
• 16:44
  SPEAKER_02: Yeah.
• 16:45
  SPEAKER_02: That I I think those are the things you have to look for.
• 16:47
  SPEAKER_02: Absolutely.
• 16:48
  SPEAKER_00: I'm sure it was just enough to kind of recharge you a little bit, but I think it's you know, it's important.
• 16:53
  SPEAKER_00: You need to take that that time, it doesn't have to be something big, it can be something small, right?
• 16:59
  SPEAKER_02: It can be it was a change of scenery too, it was like so important to just you know, get out of the room.
• 17:05
  SPEAKER_02: And I was still in the hospital, I didn't leave, but it was a change of scenery.
• 17:10
  SPEAKER_02: It was something a little more interesting than the hospital room.
• 17:15
  SPEAKER_02: And yeah, it it actually felt like this little 30-minute vacation courtesy of a meeting.
• 17:21
  SPEAKER_00: Um I don't know if that's good, but but yeah, so it's that's a good good reminder for those those who are caregiving.
• 17:29
  SPEAKER_00: You know, it doesn't have to be that that, you know, half an hour massage, not that I get get massages, but it doesn't have to be something, you know, really well planned.
• 17:39
  SPEAKER_00: It doesn't have to be something, you know.
• 17:42
  SPEAKER_02: It it doesn't have to be, you know, a two-hour, three-hour excursion, right?
• 17:48
  SPEAKER_02: You know, when we talk about a lot of individual self-care at home, like when I talk to my patients, right?
• 17:55
  SPEAKER_02: It's a lot of, you know, what are you eating and your nutrition and all that?
• 17:59
  SPEAKER_02: Well, yeah, I mean, it might be as in the hospital, it might be as simple as I did hydrate today, right?
• 18:06
  SPEAKER_02: You know, I I had like some good hydration today.
• 18:09
  SPEAKER_02: Yeah.
• 18:10
  SPEAKER_02: Rather than, you know, I ate the Mediterranean diet all day for the for the all week.
• 18:15
  SPEAKER_02: And then physical exercise, right?
• 18:17
  SPEAKER_02: Rather than the okay, you have to do your 150 minutes of vigorous exercise.
• 18:24
  SPEAKER_02: Maybe it's just I stepped outside and walked around the block.
• 18:28
  SPEAKER_02: Yeah.
• 18:28
  SPEAKER_02: Right.
• 18:28
  SPEAKER_02: Yeah.
• 18:29
  SPEAKER_02: So so looking for, like again, it's intentional, which is really hard.
• 18:33
  SPEAKER_00: But to get a cup of coffee and take five minutes and just sit with your your coffee, just enjoying that coffee and you know, find a place that's semi-quiet and just enjoy your coffee and a few moments just to to decompress.
• 18:47
  SPEAKER_00: And that's that's what's important as a as a caregiver is to remember that you do need those moments.
• 18:54
  SPEAKER_00: You can't to be present for your loved one, the one that you're caring for, or if you're helping another caregiver, you really do need to take those few minutes for yourself.
• 19:04
  SPEAKER_00: And you have to make sure that the primary caregiver is getting, you know, a lot of times they don't want to take the break, but they need to take take the break.
• 19:13
  SPEAKER_00: And I think that was also part of our, you know, difficulty with with dad.
• 19:18
  SPEAKER_00: He didn't want to, you know, to especially at first, as the time, yeah.
• 19:22
  SPEAKER_02: It was like we had to drag him kicking and screaming from the bedside.
• 19:26
  SPEAKER_02: I mean, not literally, but it really felt like that.
• 19:29
  SPEAKER_02: And I mean you understand he's been with mom for what over 50 years.
• 19:33
  SPEAKER_00: Yeah, he's and and he was, yeah, I mean, he was right by her and wanted to hold her hand, you know, but you know, he needed to take those breaks, and it became more evident as the time kind of went from three days to five days to seven days.
• 19:49
  SPEAKER_00: He was getting tired, and we were all getting tired, you know.
• 19:52
  SPEAKER_00: And I I think there were times when I'm like, uh, I'm not really sure mom's gonna make it out of this.
• 19:57
  SPEAKER_00: And and that mentally starts to to build on you, and you all kind of have to take that that break.
• 20:03
  SPEAKER_00: But we had to push dad to, you know, go get your breakfast.
• 20:07
  SPEAKER_00: No, you don't have to eat in the hospital.
• 20:09
  SPEAKER_00: You can go find uh something outside the hospital, you know, go wash your clothes, go do your laundry.
• 20:14
  SPEAKER_00: Right.
• 20:15
  SPEAKER_00: I'm I'm here, I won't leave, you know.
• 20:17
  SPEAKER_00: Um if the doctor comes, I'll talk to the doctor, you know.
• 20:21
  SPEAKER_00: So it really was not only were we taking care of mom, but we were trying to get dad some time for him to take care of him himself.
• 20:29
  SPEAKER_00: So I think all of that is important.
• 20:32
  SPEAKER_00: And I think again, in a hospital, that hospital becomes your home.
• 20:37
  SPEAKER_00: And now you have to figure out okay, how do I eat healthy?
• 20:41
  SPEAKER_00: How, how do I, you know, take the breaks that I need to in this hospital?
• 20:46
  SPEAKER_00: How, you know, what uh what else?
• 20:48
  SPEAKER_02: Well, how do I manage all those things that I manage in my day-to-day life?
• 20:53
  SPEAKER_02: My work, my kids, my home, my household, right?
• 20:57
  SPEAKER_02: You know, all those things you're thinking.
• 20:59
  SPEAKER_02: So, and the one thing I'm thinking about, Mary, is, you know, could I mean in retrospect, it's always easy to go back and say, could we have done this differently?
• 21:09
  SPEAKER_02: You know, could we have prepared a little bit better?
• 21:11
  SPEAKER_02: Was there an opportunity for us to say, well, I mean, we always want to hope for the best, but what happens if mom is here, you know, longer than three days?
• 21:22
  SPEAKER_00: I don't know, yeah.
• 21:23
  SPEAKER_00: I don't know why we, yeah.
• 21:25
  SPEAKER_00: I mean, as physicians, we should have been like, yeah, things often don't go as planned, but yeah, we didn't really I think we were naively hopeful, yeah is what I would call it.
• 21:36
  SPEAKER_00: I would call it as well.
• 21:37
  SPEAKER_00: That's a good good term for it.
• 21:39
  SPEAKER_02: You know, it's sometimes easier, you know, when you're a physician, it's it's one thing to be a physician and say, okay, I know, and tell your patient, well, you know, this is what we would expect.
• 21:49
  SPEAKER_02: It might be a little bit longer, you know, hopefully it'll be a little bit shorter.
• 21:53
  SPEAKER_02: But somehow when you're in the thick of it with one of your loved ones, it you forget those things, right?
• 21:59
  SPEAKER_02: You forget that.
• 22:00
  SPEAKER_02: And I do think that was one of the things that happened was we didn't really we didn't have a plan beyond three days.
• 22:06
  SPEAKER_02: So I think one of the things I think about is, you know, could we have had a plan beyond three days?
• 22:13
  SPEAKER_02: And yeah, I would encourage everyone to to think.
• 22:16
  SPEAKER_02: What happens if you're gonna be there?
• 22:18
  SPEAKER_02: I mean, I think we did think a little bit about dad.
• 22:20
  SPEAKER_02: Let's make sure he's in a hotel, he's not driving every day.
• 22:23
  SPEAKER_02: But what happens if this goes from, you know, three days goes to, you know, five days goes to a week and a half, you know, which does happen.
• 22:33
  SPEAKER_02: Yeah.
• 22:33
  SPEAKER_02: Often.
• 22:34
  SPEAKER_02: You know, so I I think that's one thing.
• 22:36
  SPEAKER_02: And then when you're dragging out like that, right, you you've often have a complication too, right?
• 22:41
  SPEAKER_02: Something's kept the patient in the hospital longer.
• 22:44
  SPEAKER_02: Um, and so it becomes even more important to have somebody there and be communicating with the family.
• 22:50
  SPEAKER_02: So who's the primary contact?
• 22:52
  SPEAKER_02: We've talked a little bit about this before.
• 22:54
  SPEAKER_02: You know, a lot of times it got delegated to you because you were talking to you had the physician's numbers, cell phone numbers.
• 23:02
  SPEAKER_02: Yeah.
• 23:02
  SPEAKER_02: Right.
• 23:02
  SPEAKER_02: So, but I do think that's an important thing that I would urge people to think about is yeah, let's be hopeful, but let's be practical too.
• 23:11
  SPEAKER_00: Yeah.
• 23:12
  SPEAKER_00: I think we could have been, it definitely could have been better on that plan and kind of, okay, what if she's in the hospital for seven days?
• 23:19
  SPEAKER_00: Who's who's gonna be in the hospital?
• 23:21
  SPEAKER_00: Again, we had that text string, but could have made it who's gonna be in the hospital on this day, this day, this day, and it kind of made a more of a plan that was written and a little bit more concrete.
• 23:34
  SPEAKER_00: I again, I kind of was default for primary contact for the doctors and kind of who was communicating the updates, although whoever was there was kind of hopefully communicating that day, but that also didn't.
• 23:48
  SPEAKER_00: Yeah.
• 23:49
  SPEAKER_00: And you know, I think we I could have been better with my kids as well.
• 23:52
  SPEAKER_00: I don't think I had a real concrete plan with, okay, what if I'm not home at this time?
• 23:56
  SPEAKER_00: Who's who's getting dinner?
• 23:58
  SPEAKER_00: What are you gonna have for dinner?
• 23:59
  SPEAKER_00: I think a lot of it was just on the fly.
• 24:01
  SPEAKER_00: I'm not gonna be home for dinner, you're on your own, or you're gonna need to be a good one.
• 24:05
  SPEAKER_02: And let's just say, I mean, she did not have a two-year-old at home.
• 24:08
  SPEAKER_01: So it wasn't like she was like, you're on your own, honey.
• 24:11
  SPEAKER_01: I know you're like two years old, figure it out.
• 24:14
  SPEAKER_01: Yeah.
• 24:14
  SPEAKER_00: I I no, no, they were they were definitely okay.
• 24:18
  SPEAKER_00: But I I think in general, you know, and they knew when I was going down to the hospital, but could have had it planned out a little bit better.
• 24:25
  SPEAKER_00: And we probably could have had our kids a little bit more involved in, you know, going down to the hospital as well.
• 24:31
  SPEAKER_00: I think maybe one of your kids was down there one one or two days.
• 24:36
  SPEAKER_00: And but I I I think in general, I think it's really important.
• 24:39
  SPEAKER_00: Again, we've talked about this, the the what-ifs and having a plan for plan B, right?
• 24:44
  SPEAKER_00: It's a good thing.
• 24:45
  SPEAKER_00: It's okay to have plan B, yeah.
• 24:46
  SPEAKER_00: Right?
• 24:47
  SPEAKER_00: And have it written, written down or yeah, even written down.
• 24:51
  SPEAKER_00: Because if it's in your head, I'd say try and keep a lot of stuff in my head.
• 24:56
  SPEAKER_02: You're juggling a lot and you're getting tired, right?
• 24:58
  SPEAKER_02: And that cognitive load of being tired at the same time that you're carrying all these things becomes overwhelming.
• 25:05
  SPEAKER_02: So, you know, again, as you drag, as the days drag on, you become more tired, which makes it more difficult to formulate a solid plan and you're kind of just in the moment trying to survive.
• 25:17
  SPEAKER_02: So I think what we're talking about is how do you be a little proactive so it's not just surviving?
• 25:22
  SPEAKER_02: Absolutely caregivers.
• 25:24
  SPEAKER_00: And again, we were lucky because we had there was a bunch of us, but this is important for for those of you who are there's just one caregiver.
• 25:32
  SPEAKER_00: You know, make sure you have a somebody to be backup for you.
• 25:36
  SPEAKER_00: And it's okay to, and I've said this before, okay to ask friends or distant, you know, family that's not, you know, immediate family for for help and just have that backup.
• 25:46
  SPEAKER_00: Again, most people are willing to to help.
• 25:49
  SPEAKER_00: So have that, have that backup for your for yourselves if you're the primary caregiver, because you you need it.
• 25:56
  SPEAKER_00: You need it to to recharge yourself so you can show up.
• 25:59
  SPEAKER_00: Because if you don't, you're gonna be you're gonna end up being the one, the next one in the hospital.
• 26:05
  SPEAKER_02: Hospital.
• 26:06
  SPEAKER_02: And I and I don't think your loved one really wants that for you.
• 26:09
  SPEAKER_02: You know, I think they don't want to see that.
• 26:12
  SPEAKER_02: They don't want that to happen to you, and that doesn't help them at at all.
• 26:16
  SPEAKER_02: And you know, Mary, as you're you're talking about that, the other thing I think about is, you know, I have we both have friends, and you know, it's sometimes really difficult to ask for yes, we do.
• 26:28
  SPEAKER_02: It's sometimes difficult to to ask for help.
• 26:32
  SPEAKER_02: But I mean, again, I think that's one of the things like, you know, can you check in on the kids?
• 26:36
  SPEAKER_02: Right.
• 26:37
  SPEAKER_02: You know, like that's something a friend could do, absolutely, right?
• 26:40
  SPEAKER_02: But I I know I think one of the things that happens is we know a lot of people that are really overworked too, right?
• 26:47
  SPEAKER_02: They're doing the same things that we're doing to begin with.
• 26:50
  SPEAKER_02: And they're in the sandwich generation as well, and kind of doing the same thing that we're doing.
• 26:55
  SPEAKER_02: So it's you don't want to burden anyone, but I do think there's opportunity.
• 26:59
  SPEAKER_02: Look for those opportunities, like who who could I ask, you know, that would be willing to do that, especially when you really you know you're getting tired.
• 27:08
  SPEAKER_02: Yeah.
• 27:09
  SPEAKER_02: Um, so yeah.
• 27:10
  SPEAKER_02: And I other, I think the other thing is there is an emotional drain, which you know, we're talking a lot about the physical, but there is an emotional drain to it as well, right?
• 27:20
  SPEAKER_02: You know, you're worrying about your loved one, like you said, Mary.
• 27:23
  SPEAKER_02: You know, are they gonna get out of the ha hospital?
• 27:26
  SPEAKER_02: And you know, that wears on you as well.
• 27:28
  SPEAKER_02: A hundred percent.
• 27:29
  SPEAKER_02: You know, you have to remember that this is a very stressful situation.
• 27:33
  SPEAKER_02: Anytime somebody's in a hospital, it's stressful.
• 27:36
  SPEAKER_02: So you're kind of kicking up everything a notch above where it normally is.
• 27:41
  SPEAKER_02: And for us, we know hospitals.
• 27:44
  SPEAKER_02: Yeah.
• 27:44
  SPEAKER_02: Like, you know, we know hospitals, we know the ins and outs of a hospital, but there's a lot of people that don't.
• 27:50
  SPEAKER_02: So, you know, not only is you know it's stressful because you're taking care of a loved one, but it's stressful because you don't even know like how to navigate, you know, a hospital.
• 28:00
  SPEAKER_00: 100%.
• 28:01
  SPEAKER_00: And, you know, you don't you, you know, that hospital is now your your home for whatever amount of days.
• 28:08
  SPEAKER_00: And there's a lot of people coming and going, and it's hard to know who's who.
• 28:14
  SPEAKER_00: It's hard to know when something is gonna happen.
• 28:18
  SPEAKER_00: So there's a there's a lot, a lot going on in that that hospital system.
• 28:24
  SPEAKER_00: And I think, you know, that it becomes almost like a not only a, I think you mentioned this before, it's a maze.
• 28:31
  SPEAKER_00: Not only, I mean, it's it's complicated in some of these hospitals finding the room that you're you're going to, right?
• 28:39
  SPEAKER_02: Right.
• 28:39
  SPEAKER_02: Like I remember when I was a med student and a resident, you know, people would be like, can you go grab such and such at the lab, right?
• 28:48
  SPEAKER_02: And it was like a day-long journey to find the lab.
• 28:51
  SPEAKER_02: Like 100%.
• 28:52
  SPEAKER_02: You know, hospitals the physical footprint of a hospital can be a maze.
• 28:57
  SPEAKER_02: Like I always fit found that it was very complex to even navigate the physical footprint of a hospital.
• 29:04
  SPEAKER_02: A lot of them have been built, like there was a primary hospital and then another got built.
• 29:08
  SPEAKER_02: And so the sixth floor in one place is the third floor in another place.
• 29:12
  SPEAKER_02: That's so confusing.
• 29:14
  SPEAKER_02: So the hospital itself is like a maze to begin with.
• 29:17
  SPEAKER_02: Yeah.
• 29:17
  SPEAKER_02: But then when I think about the healthcare system that we're working in, it is a very, very complex maze that you're trying to navigate as a caregiver.
• 29:29
  SPEAKER_00: Absolutely.
• 29:30
  SPEAKER_00: There's there's a lot, a lot to navigate.
• 29:34
  SPEAKER_00: And I think as a caregiver, there's a lot that you don't understand unless you've been a caregiver before, or unless you spent some time in the hospital.
• 29:44
  SPEAKER_00: And I think, you know, that's where things get a little overwhelming, a little stressful.
• 29:52
  SPEAKER_00: We've already talked about the emotional and and physical of just trying to show up for your loved one.
• 29:57
  SPEAKER_00: You don't have to be the hero and be there 24-7 because it's not possible and you have to take care of yourself.
• 30:03
  SPEAKER_00: But how do you kind of navigate that maze of what's going on?
• 30:09
  SPEAKER_00: And we've talked about medical mysteries before.
• 30:12
  SPEAKER_00: What's around the next corner in the maze?
• 30:14
  SPEAKER_00: What am I going to find around that corner, right?
• 30:18
  SPEAKER_00: This is an another one of those medical mysteries.
• 30:21
  SPEAKER_00: Why is why are there so many why is it such a different Right, right.
• 30:26
  SPEAKER_02: Why do you end up with these dead ends here and there?
• 30:29
  SPEAKER_02: And I don't mean dead ends in a bad way, but but you know, again, it's really that complex maze.
• 30:34
  SPEAKER_02: So I think, Mary, in our next episode, we're really going to start talking about what happens when, you know, you're showing up, but that's just not enough.
• 30:42
  SPEAKER_02: I mean, you're dealing with multiple medical teams are involved, the plan keeps changing, and you're left wondering, you know, who's actually in charge?
• 30:52
  SPEAKER_02: And I don't mean from a caregiver standpoint, like from the family caregiver standpoint, I mean in the hospital.
• 30:58
  SPEAKER_02: Like who's actually in charge?
• 31:00
  SPEAKER_02: And just navigating that maze is what we're going to be talking about next time, right?
• 31:05
  SPEAKER_00: Yes, that maze.
• 31:06
  SPEAKER_00: And until next time, remember you're not alone and you're doing better than you think, and you don't have to eat the uh