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Home—but Far From Healed: When Hospital Care Becomes Family Care · The SH!T Sandwich Generation

• 0:05
  SPEAKER_01: Our mom finally came home, but she didn't come home.
• 0:08
  SPEAKER_01: She came home with a large, gaping wound.
• 0:11
  SPEAKER_01: Conflicting instruction depending on who you asked, and no firm plan for when or how it would close.
• 0:18
  SPEAKER_01: And somehow my 87-year-old dad was now expected to manage much of her wound care at home and be the hospital.
• 0:27
  SPEAKER_00: Welcome to the shit sandwich generation.
• 0:30
  SPEAKER_00: This is the podcast for anyone stuck in the middle of caring for aging parents while raising kids of their own and navigating their careers.
• 0:37
  SPEAKER_00: I'm Susan here with my sister Mary Beth.
• 0:40
  SPEAKER_00: And every two weeks we will bring you raw, honest conversations about the chaos, the comedy, and the crap no one warned us about.
• 0:47
  SPEAKER_00: Because if we're going to survive the sandwich, we may as well make it a damn good one.
• 0:52
  SPEAKER_00: So mom came home, Mary.
• 0:54
  SPEAKER_00: You know, it was supposed to be good, right?
• 0:57
  SPEAKER_00: Like we were like, this is a great thing.
• 1:00
  SPEAKER_00: You know, here she's getting out of the hospital.
• 1:04
  SPEAKER_00: The hospital was it was a challenge.
• 1:06
  SPEAKER_00: We talked about that in our last episodes.
• 1:09
  SPEAKER_01: All she wanted to do was get home.
• 1:11
  SPEAKER_01: So this was a big, big hurdle, and you know, a little bit of relief that she was finally going home.
• 1:16
  SPEAKER_01: But at the same token, it was kind of now everything that was being done in the the hospital was gonna have to be done at home.
• 1:29
  SPEAKER_01: And dad was gonna be the one to take on most of the care, right?
• 1:35
  SPEAKER_01: Yeah, you know, he was now going to be doing the the wound care.
• 1:40
  SPEAKER_01: So I I think it was a relief that she was coming home, right?
• 1:45
  SPEAKER_01: I don't think actually, I think we both discharged her that were both there for discharge that day.
• 1:51
  SPEAKER_01: Um, I think you went back to the house with them.
• 1:54
  SPEAKER_00: I did, I did to help her get out of the car and get into the house because knowing that there were some steps there that dad was gonna need help navigating her up those steps and into the house.
• 2:06
  SPEAKER_00: I I remember Mary, though, like that relief of leaving the hospital it like dissipated so quickly as soon as you know we got to the house.
• 2:17
  SPEAKER_00: And I was like, the reality of even getting her out of the car down the short path to the house and up the stairs.
• 2:24
  SPEAKER_00: And I think, you know, I felt like really we were just uh discharging, you know, she was being discharged to home, but she wasn't healed.
• 2:36
  SPEAKER_00: Yeah.
• 2:36
  SPEAKER_00: Right.
• 2:36
  SPEAKER_00: She wasn't healed when she got home.
• 2:38
  SPEAKER_00: And it was kind of like there's nothing more we can do about it in the hospital.
• 2:44
  SPEAKER_00: And so we're just gonna send her home.
• 2:46
  SPEAKER_00: Right.
• 2:46
  SPEAKER_01: And I I think that was I think that really was the case.
• 2:49
  SPEAKER_01: Like there, we weren't making progress in the in the hospital.
• 2:53
  SPEAKER_01: Nothing really was was happening with this wound.
• 2:55
  SPEAKER_01: I don't think they really knew what to to do next, didn't really have a a good plan, and she just wanted to go home.
• 3:02
  SPEAKER_01: And again, it was really like, okay, time for time to to discharge her and you know, go home.
• 3:10
  SPEAKER_01: And yeah, we got discharge in instructions.
• 3:13
  SPEAKER_01: I think dad was, you know, we he was shown how to take care of this again.
• 3:19
  SPEAKER_01: It was not a small, small wound.
• 3:21
  SPEAKER_01: This was a large, large wound, and he was, I believe, shown in the hospital how to how to to manage it, how to clean it, how to pack it, not to get very detailed.
• 3:34
  SPEAKER_01: And uh, you know, I think he might have, I can't even remember, they might have had him do somewhat do it while she was in the hospital.
• 3:41
  SPEAKER_00: Yeah, I think they watched him once, yeah.
• 3:43
  SPEAKER_01: And we got to again gave discharged instructions, gave was given some materials, dad had to order some things.
• 3:51
  SPEAKER_01: Home, you know, home was we knew was already set up.
• 3:54
  SPEAKER_01: Equipment, we had done this before, so everything was set at the house.
• 3:59
  SPEAKER_01: So yeah, there was relief that she was being discharged.
• 4:02
  SPEAKER_01: We felt a little confident, a little bit more confident getting her from the hospital to the home because the home was more set up now for her.
• 4:11
  SPEAKER_01: We knew, you know, bathroom was good, you know, how to kind of get her inside.
• 4:17
  SPEAKER_01: But again, it's it's a lot and didn't really know what to expect.
• 4:22
  SPEAKER_01: And in hindsight, it it really was we went home with not a lot of answers.
• 4:28
  SPEAKER_00: Yeah, yeah.
• 4:29
  SPEAKER_00: I think, you know, we went home with an unhealed wound, and uh, you know, it was kind of like, okay, it's unhealed, and now you're gonna go home.
• 4:37
  SPEAKER_00: And it's still unhealed.
• 4:38
  SPEAKER_00: And I sort of felt like, I mean, we're both runners, Mary.
• 4:42
  SPEAKER_00: So we both ran in high school.
• 4:43
  SPEAKER_00: Yeah, you know, I'm not saying we were like greatest, but we both ran.
• 4:46
  SPEAKER_00: Come on.
• 4:47
  SPEAKER_00: And I I kind of felt like, you know, it was this like handing off of the baton, right?
• 4:52
  SPEAKER_00: And they handed us this baton, and here it is in our hand, and we're like, okay, we got to run with this, but you know, don't know how to run where the finish line is.
• 5:02
  SPEAKER_00: I don't know where the finish line is, and I don't exactly know how to run this race because I've never run it before.
• 5:09
  SPEAKER_00: And, you know, so here I am sort of holding the baton.
• 5:12
  SPEAKER_00: And I think it's also don't know who I'm handing it off to.
• 5:15
  SPEAKER_00: Like, I'm not handing it off to anyone.
• 5:16
  SPEAKER_00: Am I handing it off to somebody?
• 5:18
  SPEAKER_00: Where are they?
• 5:19
  SPEAKER_00: I don't see them.
• 5:20
  SPEAKER_00: So, you know, kind of that, like that was the analogy like that came to me when I was thinking about this.
• 5:25
  SPEAKER_00: Is I'm just like sitting there holding the baton and I'm kind of running, but I don't really have any place to hand this off to.
• 5:33
  SPEAKER_00: I'm sure dad felt like that on a lot of occasions.
• 5:36
  SPEAKER_00: He wasn't very verbal about it.
• 5:38
  SPEAKER_00: I think he was just, you know, put his head head down and and did it.
• 5:42
  SPEAKER_00: But you know, in the hospital, we had the nurses around us, the aides around us, physicians, supplies, medication.
• 5:48
  SPEAKER_00: You know, people were there around the the clock.
• 5:50
  SPEAKER_00: And then all of a sudden, you know, it was dad is the primary caregiver, and then we were the backup.
• 5:57
  SPEAKER_00: And again, we know medicine, right?
• 5:59
  SPEAKER_00: So, you know, it was good, but it was still like I've got to tell you, I really feel for people that don't know medicine and end up in this situation because it has got to be so overwhelming.
• 6:13
  SPEAKER_01: A hundred percent.
• 6:14
  SPEAKER_01: And uh again, she's she's got someone to help her to the bathroom in the in the hospital, somebody to, you know, get her out of bed, into the chair.
• 6:23
  SPEAKER_01: She was moving around, but again, not doesn't have she's been in the hospital, doesn't have full strength.
• 6:28
  SPEAKER_01: So all that care that she was getting in the hospital now is gonna be done at home, right?
• 6:36
  SPEAKER_01: And it all falls on dad as the primary caregiver.
• 6:41
  SPEAKER_01: Yes, we've kids are we're around, but we all have jobs, we all have kids, we're all doing our own things, willing to help, but it it's just a different, a different, different cadence for sure.
• 6:56
  SPEAKER_00: And I think there's more unexpected, right?
• 6:59
  SPEAKER_00: You know, I can remember dad calling and saying, Well, what do you think about this?
• 7:03
  SPEAKER_00: Or the wound looks like that.
• 7:04
  SPEAKER_00: What do you think?
• 7:05
  SPEAKER_00: Or I mean, honestly, I think I have more pictures on my phone to this day of that wound than I have of anything else.
• 7:13
  SPEAKER_01: I was just scrolling to to look for a picture the other day, and I'm like, oh my God, mom's wound.
• 7:18
  SPEAKER_01: Oh my god, mom's wound.
• 7:19
  SPEAKER_01: Oh, this looks terrible.
• 7:21
  SPEAKER_01: I can't believe that I have all these pictures on here.
• 7:23
  SPEAKER_01: And uh, yeah, and I can remember, you know, when when she first went home, I I think I was supposed to come and watch dad and make sure he was doing it, or he he called me and wanted me to come over and make sure that he was doing it right.
• 7:37
  SPEAKER_01: And so, you know, I went over and you know, he's doing it and he wanted me to do it.
• 7:46
  SPEAKER_01: And sure, I I kind of, you know, I know germ, I know skincare, but again, this was a large wound.
• 7:54
  SPEAKER_01: I mean, you not again, not to get, you know, into it, but graphic, but you know, you had to gently with two fingers stick some gauze down into this wound.
• 8:06
  SPEAKER_01: How much pressure do you put on this?
• 8:08
  SPEAKER_01: There's a a flap under there, there's there's a blood vessel.
• 8:11
  SPEAKER_01: This is going in inside, and and and she's in immense pain.
• 8:16
  SPEAKER_01: So, you know, that and she got to find the right position to do this.
• 8:20
  SPEAKER_01: And so there's all this going on.
• 8:22
  SPEAKER_01: I'm trying to show dad, and then I'm like, wow, I'm not even like, this isn't even my, you know, in my realm, and he's he's doing this.
• 8:31
  SPEAKER_01: And yes, we did have, you know, the the the at discharge, there was supposed to be that we were getting all the nursing, right?
• 8:39
  SPEAKER_01: And the PT and OT and all of that.
• 8:42
  SPEAKER_01: So there was a nurse coming in to help.
• 8:44
  SPEAKER_01: And I think it was, if I remember, the nurse was gonna come in once a day and do a a bandage the change, and my dad was gonna do the nighttime one.
• 8:52
  SPEAKER_01: And, you know, even the nurse, when when she was coming in, she started to tell my dad, no, don't do it this way, do it, do it this way.
• 9:00
  SPEAKER_01: Right.
• 9:00
  SPEAKER_01: Which made it even more.
• 9:02
  SPEAKER_00: And then he'd call us and be like, Well, what way am I supposed to do this?
• 9:05
  SPEAKER_00: I I d I'm not sure.
• 9:07
  SPEAKER_00: And I mean, I think that was like that was a big challenge as well.
• 9:10
  SPEAKER_00: And I think the other thing was, you know, to their credit, they had never seen a wound like this either.
• 9:16
  SPEAKER_00: I mean, wound care is, you know, very specific.
• 9:19
  SPEAKER_00: This was, you know, this was, as you said, very unusual.
• 9:23
  SPEAKER_00: And, you know, I had had experience with, you know, obviously with OBGYN with wound care and knew that there were some challenges with it.
• 9:32
  SPEAKER_00: You know, I used to have to, it is hard to get care at home.
• 9:36
  SPEAKER_00: And I used to have to say to the patients, well, you know, I'm not sure we can get care in the next two days, so why don't you come back to the office and I'll take care of it?
• 9:44
  SPEAKER_00: Because not every family can do that.
• 9:46
  SPEAKER_01: Yeah.
• 9:46
  SPEAKER_00: Not every patient can tolerate it, not every care can be.
• 9:50
  SPEAKER_00: Everyone wants to do it, right?
• 9:51
  SPEAKER_00: Right.
• 9:52
  SPEAKER_01: I I mean, it's a whole different beast, honestly.
• 9:55
  SPEAKER_01: Like some people, you know, don't like blood, don't like anything.
• 9:59
  SPEAKER_01: So it's not, it's not easy, you know.
• 10:01
  SPEAKER_00: And like, let's move away from wound care because there were there were other things too, right?
• 10:05
  SPEAKER_00: Physical therapy.
• 10:06
  SPEAKER_00: I mean, physical therapy had to come in because she really couldn't get up and moving that well.
• 10:11
  SPEAKER_00: So they were there.
• 10:12
  SPEAKER_00: I I mean, I think there was occupational therapy at first as well because she couldn't really hold things that well.
• 10:18
  SPEAKER_00: She needed someone to come in to help bathe her.
• 10:20
  SPEAKER_00: I mean, my dad could not, you know, bathe her on her on his own.
• 10:25
  SPEAKER_00: I mean, we couldn't bathe her on our own, you know.
• 10:27
  SPEAKER_00: So there was uh there was a lot of care coordination, right?
• 10:31
  SPEAKER_00: And you know, I think to to their credit, everything was set up, but the word that comes to me was set up is different than coordinated, yeah, right?
• 10:40
  SPEAKER_00: And you know, dad became not only the primary caregiver, but he also became the coordinator of care, the pain management specialist, the emotional support for her.
• 10:52
  SPEAKER_00: And I mean, God bless him.
• 10:55
  SPEAKER_00: Like, you know, in retrospect, as I'm saying this, and I watched him like there were days I was over there because I was helping, I might be it might have been helping clean her up or and you know, he was taking phone call after phone call, trying to coordinate everything because the the nurse to do the wound change couldn't come before the bath.
• 11:16
  SPEAKER_00: Right.
• 11:16
  SPEAKER_00: Right.
• 11:16
  SPEAKER_00: And then the physical therapist couldn't come while she was doing either one of those things.
• 11:21
  SPEAKER_00: So there was so much of this.
• 11:23
  SPEAKER_00: And then again, just like anything, appointments get canceled, they get rescheduled, people aren't showing up.
• 11:29
  SPEAKER_00: Right.
• 11:30
  SPEAKER_01: So I mean, not only was he, you know, a caregiver in the caregiver sense, but he was a coordinator.
• 11:35
  SPEAKER_01: Right.
• 11:35
  SPEAKER_01: He was coordinating all this.
• 11:36
  SPEAKER_01: And again, it's the you're, you know, that's for anyone.
• 11:41
  SPEAKER_01: Either one of those is it is a lot, right?
• 11:45
  SPEAKER_01: To have to schedule, reschedule, coordinate, uh, do it all.
• 11:50
  SPEAKER_01: It it's it's a lot.
• 11:52
  SPEAKER_01: So again, kudos to anyone that is is doing all of this because it is a lot.
• 11:58
  SPEAKER_01: But back, I want to go back to the wound care because I think this is so important.
• 12:03
  SPEAKER_01: And and a lot of this is, you know, they had in medical school.
• 12:09
  SPEAKER_01: C one, do one, teach one.
• 12:10
  SPEAKER_01: Yes, right.
• 12:11
  SPEAKER_00: C one do one teach one, which so Mary, explain what C1D1 teach one is.
• 12:16
  SPEAKER_00: I mean, it's obvious.
• 12:16
  SPEAKER_01: It's obvious, but yeah, you see one, then you do one, and then you can teach one.
• 12:21
  SPEAKER_01: So yeah, that would be.
• 12:23
  SPEAKER_00: Which was woefully inadequate in medical school.
• 12:26
  SPEAKER_00: So I think if you talk to any surgeon, they will be like, you know, doing one surgery, watching one surgery, doing one surgery, and then teaching one surgery is really not enough to do surgery.
• 12:38
  SPEAKER_01: Think about it, uh even as a parent, okay.
• 12:40
  SPEAKER_01: Teach your kid to tie their shoe once.
• 12:42
  SPEAKER_01: So see one, good example.
• 12:44
  SPEAKER_01: Do one and then teach one.
• 12:46
  SPEAKER_01: Never, right?
• 12:46
  SPEAKER_01: You can never get your your child to just show them once.
• 12:50
  SPEAKER_01: That would be awesome.
• 12:51
  SPEAKER_01: But and it's not really how it works.
• 12:53
  SPEAKER_01: But that was, you know, the expectation here was yeah, we're gonna show you.
• 12:58
  SPEAKER_01: Now you can do it, or you know, you can teach it.
• 13:00
  SPEAKER_01: So yeah, it's part of mine was okay, I saw it in the hospital.
• 13:04
  SPEAKER_01: All right, I'm gonna show dad and uh kind of teach him, but it's it's not not easy, right?
• 13:10
  SPEAKER_00: Especially when somebody's uncomfortable and right, and somebody you love is uncomfortable, right?
• 13:15
  SPEAKER_00: I mean, that was the other thing.
• 13:16
  SPEAKER_00: Here he was, you know, doing this, doing wound care, and she was in pain and and she was a little stoic most of the time.
• 13:24
  SPEAKER_00: But uh that's hard too.
• 13:25
  SPEAKER_01: Yeah, and it's hard to again, you have to gauge, okay, is this again we were discharged, we had instructions, but there was no clear, you know, nothing, no pictures on how to do this wound, no, you know, really written instructions.
• 13:40
  SPEAKER_01: They gave us stuff, and it was kind of something that was very also very fluid.
• 13:45
  SPEAKER_01: And if it looked infected, okay, now what do we do?
• 13:48
  SPEAKER_01: Do we change something?
• 13:49
  SPEAKER_01: So yeah, and and what's the the endpoint here?
• 13:54
  SPEAKER_01: Okay, we have follow-up with sur surgical oncology.
• 13:58
  SPEAKER_01: And that is that who should be follow we should be following up.
• 14:01
  SPEAKER_01: Where is plastics and all this?
• 14:02
  SPEAKER_01: Because that they're really the end point.
• 14:04
  SPEAKER_01: We need to for them to say, okay, you can we can close this now.
• 14:09
  SPEAKER_01: So it again, it was one of those, okay, who who's in charge again, right?
• 14:14
  SPEAKER_01: So we were in the hospital, didn't know who was really in charge, and got discharged, still don't really know who's in charge.
• 14:22
  SPEAKER_01: We've got follow-up, but again, that kind of fragmented care, uh, it just got brought to the to the home as well.
• 14:31
  SPEAKER_00: So and I again I think about it.
• 14:34
  SPEAKER_00: Like I think like dad is really highly competent and had both of us as you know, backup, right?
• 14:40
  SPEAKER_00: Yeah.
• 14:40
  SPEAKER_00: And and there to help him.
• 14:42
  SPEAKER_00: But you know, when I think about it from a system perspective, I say to myself, how does this work when you don't have that scenario?
• 14:51
  SPEAKER_00: Right?
• 14:52
  SPEAKER_00: Like is there an opportunity to do this better in healthcare?
• 14:57
  SPEAKER_00: Because, you know, from my perspective, I'm thinking to myself, okay, all those pictures we have on our phone, Mary, those would be emergency room visits.
• 15:06
  SPEAKER_00: Right.
• 15:06
  SPEAKER_00: Right?
• 15:06
  SPEAKER_00: Like think about what that means.
• 15:09
  SPEAKER_00: Like, can we prevent that from happening?
• 15:11
  SPEAKER_00: So those are the bigger questions that I start to think about, right?
• 15:14
  SPEAKER_01: Absolutely.
• 15:15
  SPEAKER_01: Again, you know, it we we the the hospital stay, it was fragmented, and that just kind of translated to fragmentation at home, right?
• 15:23
  SPEAKER_01: We were the discharge, it was, you know, we were discharged, but that confusion from the hospital was brought to the home.
• 15:32
  SPEAKER_01: Right.
• 15:32
  SPEAKER_01: And so, yeah, how there's there's ownership fragmentation really, right?
• 15:36
  SPEAKER_01: And who's the sole owner of all of this, right?
• 15:40
  SPEAKER_01: Same thing in the hospital.
• 15:41
  SPEAKER_01: Who was really who who was the at the top making the final?
• 15:45
  SPEAKER_01: We still don't know.
• 15:46
  SPEAKER_01: We still have any episodes of it.
• 15:47
  SPEAKER_00: We've been talking about this and we still don't know.
• 15:49
  SPEAKER_01: So the same thing, right?
• 15:50
  SPEAKER_01: Who is coordinating all this care at home?
• 15:54
  SPEAKER_01: It's not, unfortunately, and or fortunately, it's not the primary care physician.
• 15:58
  SPEAKER_01: The primary care physician, you know, was involved, but not coordinating all of the you know, the physical And it wasn't her job.
• 16:05
  SPEAKER_01: No, it's not her job.
• 16:06
  SPEAKER_01: Exactly.
• 16:06
  SPEAKER_01: Thank you for doing that.
• 16:07
  SPEAKER_01: It's not her job.
• 16:08
  SPEAKER_01: You know, and maybe dad had the information and maybe there is such a thing out there, but is there somebody that coordinates all this care?
• 16:17
  SPEAKER_01: Is there a care coordinator?
• 16:19
  SPEAKER_00: Yeah, there is in the hospital often, right?
• 16:22
  SPEAKER_00: For some of this, and they do some of the discharge, but that's the initial discharge.
• 16:27
  SPEAKER_00: Yeah.
• 16:28
  SPEAKER_00: And then, you know, then you're a week in, two weeks in, three weeks in, and you're away from that point.
• 16:33
  SPEAKER_00: You know, yeah.
• 16:34
  SPEAKER_00: The other thing, you know, again, the other thing that's different in the hospital, I think about too, and a challenge when you get, you know, someone home is in the hospital, the nurse is saying, you have to get out of bed.
• 16:46
  SPEAKER_00: You have to shout.
• 16:47
  SPEAKER_00: Right.
• 16:48
  SPEAKER_00: Right.
• 16:48
  SPEAKER_00: You know, you have to, you know, that is one of the one of the nice things, right?
• 16:53
  SPEAKER_00: When you're home, you know, we're saying you gotta get up, you got, you know, like and that's really hard.
• 17:00
  SPEAKER_01: Yeah, it's a different dynamic, right?
• 17:02
  SPEAKER_01: Um it's now are you her kids or or her husband trying to, you know, tell tell your loved one to do something, which depending on the dynamics, is not always the simplest thing, right?
• 17:16
  SPEAKER_01: I I mean, if if my my one of my kids told me it's funny to think about, told me to, I don't know what, get up and shower or take take a bath or what would you tell me?
• 17:32
  SPEAKER_01: I'd probably use a few swear words there and tell them what the hell are they doing?
• 17:37
  SPEAKER_01: Whether what are they talking about, right?
• 17:39
  SPEAKER_01: I mean, think about it.
• 17:40
  SPEAKER_01: If your child is telling you to do something, yeah, you might need to do it, but uh again, and same thing.
• 17:46
  SPEAKER_01: I'm not married anymore, but if my husband told you the shower, told me to shower and I didn't really feel like it, well, what would I say back?
• 17:55
  SPEAKER_01: So there's what would you say back?
• 17:57
  SPEAKER_01: Exactly.
• 17:58
  SPEAKER_01: So there's a lot of dynamics going on, right?
• 18:01
  SPEAKER_01: It's hard because you want want to do the best for them and and help them, but they might not, you know, want to they're in pain, right?
• 18:09
  SPEAKER_01: She was in pain.
• 18:10
  SPEAKER_01: She didn't and she was tired.
• 18:12
  SPEAKER_01: And you know, some of this.
• 18:14
  SPEAKER_00: And then there's the control thing, right?
• 18:15
  SPEAKER_00: Like when you're a patient and when you're sick, you feel very vulnerable.
• 18:19
  SPEAKER_00: We've talked about this before.
• 18:20
  SPEAKER_00: And you know, you're only the only thing that may make you feel like you have control is to refuse to do your physical therapy, you know, and she did it multiple times.
• 18:30
  SPEAKER_01: Yeah, the other things I remember her doing were, you know, dad was oh, he was so good about like helping with her clothes and making sure and making sure she was very well dressed, you know, well dressed if she wanted to put her makeup on, even if she wasn't going anywhere, she washed, you know, she has and she'd often be like, No, not this shirt.
• 18:47
  SPEAKER_00: You put it on me, but I I want to sh change shirts.
• 18:49
  SPEAKER_00: So, you know, those are the things I think about like from the patient perspective.
• 18:53
  SPEAKER_00: There is really that, but it does become difficult for the family, right?
• 18:57
  SPEAKER_01: Yeah, you know, and and and she's you know, she you you still want her her, she's still a person and she still has her own dignity, and you know, she still wants to live, you know, as much as she can she can do and and live, and it's it's tough.
• 19:12
  SPEAKER_01: There's a a fine balance trying to find that that balance.
• 19:16
  SPEAKER_01: So yeah, there were times she didn't want to do any of it, honestly.
• 19:20
  SPEAKER_01: And it's hard.
• 19:21
  SPEAKER_01: Again, in the hospital, yeah, the nurses you you don't have a typically, yeah, you don't really have a choice.
• 19:27
  SPEAKER_01: I mean, you have a choice, but to a certain extent, right?
• 19:31
  SPEAKER_00: Yeah, and then I think like she, you know, we talked about how the house was set up, but she really wanted to sleep on the couch.
• 19:38
  SPEAKER_00: It was the most comfortable for me.
• 19:40
  SPEAKER_00: And you know, quite honestly, I slept on that couch afterwards and was like, wow, she was right.
• 19:45
  SPEAKER_00: This couch is really comfortable.
• 19:47
  SPEAKER_00: Like it was really comfortable, I have to tell you.
• 19:50
  SPEAKER_00: I get it now.
• 19:51
  SPEAKER_00: But she also got up and wandered.
• 19:52
  SPEAKER_00: Yeah.
• 19:53
  SPEAKER_00: Right.
• 19:53
  SPEAKER_00: Which, you know, meant that, you know, dad had to make sure the doors were locked and he wasn't really sleeping.
• 19:58
  SPEAKER_00: Yeah.
• 19:59
  SPEAKER_00: And so a lot of challenges in terms of, you know, the day-to-day ends and I mean, a really a full-time plus job.
• 20:07
  SPEAKER_01: It it is, right?
• 20:08
  SPEAKER_01: And it and it's also, you know, emotionally wearing on on dad and to see to see her like that occasionally, you know, especially coming from the whole the hospital.
• 20:18
  SPEAKER_01: You're sometimes a little disoriented at night.
• 20:20
  SPEAKER_01: And, you know, and what if you have to get up to go to the bathroom?
• 20:23
  SPEAKER_01: And so he was kind of half, you know, half sleeping, half, half not sleeping, making sure that she was was okay.
• 20:30
  SPEAKER_01: And he didn't, you know, he wanted to be there as much as he could 24-7.
• 20:35
  SPEAKER_01: It was hard to get him to, you know, step away.
• 20:39
  SPEAKER_00: Step away.
• 20:39
  SPEAKER_00: He would not step away.
• 20:40
  SPEAKER_00: Sometimes it was like, go to the grocery store and I'll stay here.
• 20:44
  SPEAKER_00: And, you know, I mean, not that the grocery store is a break.
• 20:48
  SPEAKER_00: But um, you know, you know, just to get him out of the house, like I felt like if he had a purpose, he might leave.
• 20:54
  SPEAKER_00: And it was really hard to get him to even do that.
• 20:58
  SPEAKER_00: Yeah.
• 20:58
  SPEAKER_00: Yeah.
• 20:59
  SPEAKER_01: Some days it was like go outside, you know, take a walk, and he didn't really go find something to do outside, dad.
• 21:05
  SPEAKER_01: Go find some some some yard work to do for a a little bit.
• 21:09
  SPEAKER_01: It's, you know, get out.
• 21:10
  SPEAKER_01: And and you know, that being said, you know, when he would leave, then mom would be looking for him, right?
• 21:17
  SPEAKER_00: Oh yeah.
• 21:17
  SPEAKER_00: Like even when he was on the phone.
• 21:19
  SPEAKER_00: Yeah.
• 21:19
  SPEAKER_00: I mean, it was really interesting because he would be talking, he'd be in his study talking to us.
• 21:24
  SPEAKER_00: And you know, maybe like 15 minutes would go by, then he'd have a refrigerator.
• 21:29
  SPEAKER_00: And it wasn't.
• 21:29
  SPEAKER_00: And then all of a sudden there she would be, which was so interesting because you know, a lot of times we felt like she wasn't really with it, but but there she was.
• 21:37
  SPEAKER_00: Like, who are you talking to?
• 21:38
  SPEAKER_00: What are you doing?
• 21:39
  SPEAKER_00: Where are you?
• 21:39
  SPEAKER_00: You know, yeah.
• 21:40
  SPEAKER_00: Which, you know, it was cute, right?
• 21:42
  SPEAKER_00: It was very cute.
• 21:42
  SPEAKER_01: But yeah, you always knew mom would be when you you called and were talking to dad, you would always know honestly, it was probably within five minutes.
• 21:51
  SPEAKER_01: She she was up.
• 21:52
  SPEAKER_01: How I I mean, and there was anything she could get up to do that.
• 21:55
  SPEAKER_01: Exactly.
• 21:56
  SPEAKER_01: She was up by the phone and you you could hear her, which I missed.
• 22:00
  SPEAKER_01: I I miss a lot when I I call.
• 22:02
  SPEAKER_01: I still expect to, you know, hear her her voice in the the background.
• 22:06
  SPEAKER_01: But you know, it it was a lot for for dad, not only for mom, but for for dad to to manage you know manage all of it.
• 22:15
  SPEAKER_01: You know, he was managing the her her pain, trying to decide how many pain pills.
• 22:19
  SPEAKER_01: He didn't want to give her too many, right?
• 22:21
  SPEAKER_01: Remember that whole scenario?
• 22:22
  SPEAKER_00: Yes, he was like, because it was so hard to get pain medication.
• 22:27
  SPEAKER_00: You know, and again, I understand the plus minus of that, right, as a as a physician, but um he really was trying to ration it a little bit so he wouldn't have to call and also so that she wouldn't be too out of it, which again, you know, to his credit, he was very on top of it.
• 22:45
  SPEAKER_00: But yeah, that was really hard.
• 22:46
  SPEAKER_00: The other thing I think about, Mary, that we haven't talked about yet, is you know, home is a sanctuary, right?
• 22:52
  SPEAKER_00: And um, I think particularly like mom and dad were pretty private.
• 22:56
  SPEAKER_00: Like I wouldn't have thought that, you know, um, but they were pretty private.
• 23:01
  SPEAKER_00: And having all these people come in at our house, I think was really exhausting for them.
• 23:07
  SPEAKER_00: Absolutely, you know, for for dad and for mom.
• 23:10
  SPEAKER_00: And I think that was part of it as well.
• 23:12
  SPEAKER_00: Like, this is our home, this is our sanctuary.
• 23:14
  SPEAKER_00: We know that people are here to help us, but it just feels like such a, you know, an invasion.
• 23:20
  SPEAKER_00: Um, and I think that was a challenge for both of them.
• 23:24
  SPEAKER_00: I do as well.
• 23:24
  SPEAKER_01: Yeah.
• 23:25
  SPEAKER_01: Uh 100%.
• 23:26
  SPEAKER_01: I think, you know, it's yeah, your home is your your sanctuary where you don't always, you know, you want some peace.
• 23:34
  SPEAKER_01: And that wasn't all it wasn't the the case.
• 23:37
  SPEAKER_01: So yeah, so dad didn't, you know, didn't have a place to necessarily go to, you know, for a reprieve and yeah, managing, you know, pain, helping her get up, helping her bathe, uh, you know, making sure she was safe at nighttime, medic, making sure she got all her medications, not just her pain medications, making sure she got all her medications, making sure appointments that we had to, you know, go back and see the surgical oncologist.
• 24:05
  SPEAKER_01: And then, you know, that's not even touching on his own emotions with the whole, you know, situation is fear of what's gonna happen here, right?
• 24:14
  SPEAKER_01: Right and what's the the end point.
• 24:17
  SPEAKER_00: So yeah, Mary, that's pretty heavy.
• 24:19
  SPEAKER_00: I'm thinking about it.
• 24:20
  SPEAKER_00: I'm like managing pain, mobility, bathing, nighttime confusion, nighttime safety, medications, appointments, um, your own emotions, your own fear of what's gonna happen.
• 24:32
  SPEAKER_00: Yeah, that is like you know, really heavy when you take a step back.
• 24:37
  SPEAKER_00: That's what caregivers are facing at home.
• 24:39
  SPEAKER_00: Yeah.
• 24:40
  SPEAKER_00: And yeah, there's gotta be, you know, there's gotta be a better, a better way.
• 24:45
  SPEAKER_01: There's gotta be more check-ins.
• 24:48
  SPEAKER_00: And that's a few, and he wasn't working, right?
• 24:50
  SPEAKER_00: Like, I mean, he's retired.
• 24:51
  SPEAKER_00: Like, can you imagine somebody trying to hold on a job and like impossible?
• 24:55
  SPEAKER_01: No, yeah, it is impossible.
• 24:57
  SPEAKER_01: And yeah, it's it's not it's not sustainable, right?
• 25:01
  SPEAKER_01: And we did, you know, we were there and we did ask him how he was doing and how he was, you know, coping.
• 25:08
  SPEAKER_01: But oh, and food too.
• 25:09
  SPEAKER_01: And food, right?
• 25:10
  SPEAKER_01: Groceries, yeah.
• 25:11
  SPEAKER_01: So, but yeah, I mean he's you know, and he would say, you know, give us a a one or two two words of uh, you know, as as good as I can even remember how he answered it.
• 25:24
  SPEAKER_01: But yeah, it it's a lot.
• 25:26
  SPEAKER_01: And how can we do better for for caregivers, right?
• 25:29
  SPEAKER_01: What what kind of system do we need to make sure that caregivers are getting what they they need for for support?
• 25:36
  SPEAKER_00: I mean, I think, right, we we're gonna talk about this in future episodes, what resources are out there.
• 25:42
  SPEAKER_00: You know, there are centers for aging and all that, but as our population really ages, uh, you know, we are going to need more and more resources.
• 25:50
  SPEAKER_00: And this is really, you know, judging from where we are now, unsustainable, right?
• 25:55
  SPEAKER_00: Not a discare anybody, but unsustainable, right?
• 25:58
  SPEAKER_00: Um, and you know, we need to really, as a society and healthcare system, come up with some solutions, right, at this point.
• 26:05
  SPEAKER_01: Absolutely.
• 26:06
  SPEAKER_01: Especially since, you know, hospitals do want to get patients out quicker, right?
• 26:09
  SPEAKER_01: They don't want patients in in the hospitals.
• 26:12
  SPEAKER_01: So discharging a lot quicker, and that all that discharge is falling on families.
• 26:19
  SPEAKER_01: And and yes, there are resources, but we've got, like Susan said, a huge aging population and not the number of resources that we need.
• 26:28
  SPEAKER_01: It was hard to find, you know, hard to get the PT in there, hard to get the nurses in there, hard to find uh uh aides that could take care of her.
• 26:37
  SPEAKER_01: And again, yes, we will get into a lot of that.
• 26:40
  SPEAKER_01: But I also want to, there's one other thing I kind of want to add to this conversation that I think dad did did really well.
• 26:47
  SPEAKER_01: And I I think, you know, yes, mom had a lot going on, but he still tried to give her, you know, a little bit of life.
• 26:55
  SPEAKER_01: Quality of life.
• 26:56
  SPEAKER_01: Yeah.
• 26:57
  SPEAKER_01: You know, he would he would uh take her out, whether it was even just for a drive to get her out of the house.
• 27:03
  SPEAKER_01: There was, you know, the the Sunday became their day to go get ice cream, right?
• 27:08
  SPEAKER_01: And they would go and take a drive and and go get ice cream.
• 27:12
  SPEAKER_01: He would get her out of the house.
• 27:14
  SPEAKER_01: And, you know, there was a a lot of yeah, sometimes it was just for a drive, right?
• 27:19
  SPEAKER_00: And I mean, I remember like in the beginning too, she was, you know, she wanted to go home.
• 27:25
  SPEAKER_00: Yeah, right.
• 27:26
  SPEAKER_00: And you know, to his credit, he was really a good problem solver, right?
• 27:29
  SPEAKER_00: So he would take her for a drive and then be like, okay, we're going home now, right?
• 27:33
  SPEAKER_00: Because he didn't know where like what home came, right?
• 27:36
  SPEAKER_01: So yeah, what was she?
• 27:38
  SPEAKER_01: She was at home, but she was asking to go home.
• 27:41
  SPEAKER_01: And what did that mean?
• 27:42
  SPEAKER_00: You know, he would try and get an answer, but didn't but it calmed her down, it got her out of the house, and then you know, they went back to the house.
• 27:50
  SPEAKER_00: So, you know, there's that really that piece of quality of life, which is even hard to remember or manage when you're going through this, right?
• 27:57
  SPEAKER_00: Yeah, and we're not even talking about the quality of life for him, right?
• 28:01
  SPEAKER_00: I do think those things help to sustain him as well and give him some hope, which is is so important in this situation as well.
• 28:10
  SPEAKER_00: I mean, like we talked about, we really didn't know where the end point was, and this was not a wound that was looking like it was gonna heal.
• 28:17
  SPEAKER_01: No, right?
• 28:18
  SPEAKER_01: It it really no, no, and you know, every time we we tried switching things, tried this, tried that, and it really was it was really not not working.
• 28:31
  SPEAKER_01: And again, that hope it really is something hard to to maintain, right?
• 28:41
  SPEAKER_01: You know, as time went on, it was it was it was harder.
• 28:46
  SPEAKER_01: But I think, you know, a couple of takeaways from from all of this is you know it it's when you do have a discharge from from a hospital, you know, it really is who owns the the plan once you get home, right?
• 29:01
  SPEAKER_01: Right and it might be one or two, but who who owns it?
• 29:05
  SPEAKER_01: Who who who's gonna coordinate everything?
• 29:08
  SPEAKER_01: Right.
• 29:09
  SPEAKER_00: Then the we talked about the wound care change, right?
• 29:12
  SPEAKER_00: Can you watch me perform the care?
• 29:15
  SPEAKER_00: Not only show it to me, but watch me and tell me that I'm doing it correctly.
• 29:20
  SPEAKER_00: Yeah, right.
• 29:21
  SPEAKER_00: And it it it might not be just wound care.
• 29:23
  SPEAKER_00: It might be, you know, bathing, it might be, you know, any sort of getting somebody out of bed.
• 29:30
  SPEAKER_00: Like there are ways to lift somebody, there's ways to help people out of bed.
• 29:35
  SPEAKER_00: I mean, those simple tasks may seem intuitive, but they're really not, right?
• 29:40
  SPEAKER_00: Right?
• 29:40
  SPEAKER_01: Absolutely.
• 29:41
  SPEAKER_01: And, you know, a written, you know, written plans or are you know what you're gonna need at home for supplies.
• 29:49
  SPEAKER_01: You you typically get that, not tip supplies, but medications, you'll get a list.
• 29:54
  SPEAKER_01: But supplies and and how often, you know, how much pain medication can you get?
• 29:59
  SPEAKER_01: And who's gonna be giving that pain medication?
• 30:02
  SPEAKER_00: I think that was a huge issue that went that did go to her primary care provider.
• 30:07
  SPEAKER_00: And, you know, fortunately, she has a very good primary care provider who was willing to do it, but there are a lot of primary care providers who wouldn't have been in the loop at that point and may not have done it.
• 30:20
  SPEAKER_00: So I think that's enormous, Mary.
• 30:22
  SPEAKER_00: And then, you know, the other thing is who do we call if, first of all, instructions conflict, right?
• 30:29
  SPEAKER_00: Like and especially as I think about the wound care.
• 30:32
  SPEAKER_00: Like, who were we supposed to call when the nurse said no do the wound care like this?
• 30:37
  SPEAKER_00: Or or if the condition changes, right?
• 30:39
  SPEAKER_00: Right.
• 30:40
  SPEAKER_00: I mean, she had a she had many people involved in her care.
• 30:44
  SPEAKER_00: Who do we call?
• 30:46
  SPEAKER_00: I mean, we did our best, but I think that's a very important question to be answered before you leave the hospital as well.
• 30:51
  SPEAKER_01: And I and I think the the biggest one is can the caregiver realistically do all this?
• 30:59
  SPEAKER_01: Are they able?
• 31:00
  SPEAKER_01: It's not even can they, right?
• 31:02
  SPEAKER_01: Ken is a they can anybody can, right?
• 31:06
  SPEAKER_01: Are they able to do this, all of it?
• 31:09
  SPEAKER_01: And if they can't, or if they can't, then who can help?
• 31:14
  SPEAKER_01: And what's the backup plan if something happens to them or they're struggling, right?
• 31:19
  SPEAKER_00: I think that's and I think a realistic assessment too, right?
• 31:22
  SPEAKER_00: You know, dad was 87, and now he's 88.
• 31:26
  SPEAKER_00: But you know, you're looking at an 87-year-old, and I think one of the issues with dad, and I often when we go to doctor's appointments, I have to remind him he does not look like he's 87.
• 31:37
  SPEAKER_00: So a lot of times he'll go in and people will be like, Oh, you're 72, and they treat him like a 72-year-old instead of an 87-year-old.
• 31:46
  SPEAKER_00: But he will say he can do it, yeah, right?
• 31:49
  SPEAKER_00: Like he'll be like, Yep, I got this.
• 31:50
  SPEAKER_00: Yeah, but realistically, and I think that's the word, Mary, realistically, can this person do everything that you're asking them to do?
• 31:58
  SPEAKER_01: Right.
• 31:59
  SPEAKER_01: Realistically, uh, and again, are the are they willing is uh one of those words.
• 32:03
  SPEAKER_01: I'm sure they are willing, right?
• 32:05
  SPEAKER_00: Yeah, they love this person, they want to help.
• 32:07
  SPEAKER_00: I mean, maybe they're not willing.
• 32:08
  SPEAKER_00: I mean, there's probably a handful that aren't willing.
• 32:11
  SPEAKER_00: Um, and that's always that's okay too.
• 32:12
  SPEAKER_00: That is okay too.
• 32:13
  SPEAKER_01: If you know I can't do this, right, absolutely, a hundred percent.
• 32:17
  SPEAKER_01: I think that takes a lot to say, no, I I don't think I can do it because it is a lot.
• 32:23
  SPEAKER_01: Right.
• 32:23
  SPEAKER_00: Right, right.
• 32:24
  SPEAKER_00: So this is not something I can handle.
• 32:26
  SPEAKER_01: You have to be physically, there has to be, you have to be physically capable, you have to be emotionally able, you really have to have the support, you have to know who who to call.
• 32:36
  SPEAKER_01: I mean, there's a lot that goes into this, right?
• 32:39
  SPEAKER_01: It's not a simple task, it's not unfortunately, it's not a simple task.
• 32:43
  SPEAKER_01: Right.
• 32:44
  SPEAKER_00: So then if it's the person that was taking care of the house or the bills or all those things, which you know this wasn't the case for mom, but that person would also have to be taking on all those things.
• 32:57
  SPEAKER_01: I mean, if this had been flipped, it would have been a disaster.
• 33:03
  SPEAKER_01: Don't want to wanna I want to give mom a lot of credit, but yeah, yeah, disaster, let's face it.
• 33:08
  SPEAKER_00: It would have been very different, very different.
• 33:10
  SPEAKER_00: And I think that's the the bottom line is every person is different, their needs are different, the caregiving needs are going to be different, but that doesn't mean that we shouldn't try to create a system where we can accommodate those, right?
• 33:23
  SPEAKER_00: The best we can.
• 33:24
  SPEAKER_00: And like you talked about, Mary, and in the end, it probably does right really save money, right?
• 33:30
  SPEAKER_00: Because we need the hospital beds.
• 33:31
  SPEAKER_00: So we don't want somebody staying in the hospital beds.
• 33:34
  SPEAKER_00: We don't want to use the resources for you know emergency room visits because somebody doesn't know how to, you know, do a wound check or something's changed on the wound.
• 33:42
  SPEAKER_00: All those things, you know, increase, you know, increase the volume in the hospital.
• 33:49
  SPEAKER_00: Absolutely.
• 33:50
  SPEAKER_00: So, you know, what can we do?
• 33:51
  SPEAKER_01: Yeah, which we we don't need either.
• 33:53
  SPEAKER_01: I mean, you go to uh ER now and it's so we're not advocating for that.
• 33:57
  SPEAKER_00: We're advocating for how how can you do this, how can we do this in society better?
• 34:02
  SPEAKER_00: You know, that's really the question.
• 34:03
  SPEAKER_00: But those were the the questions that we thought, you know, really are very important to ask when you're you're heading home.
• 34:10
  SPEAKER_00: So yeah.
• 34:12
  SPEAKER_00: Yeah.
• 34:12
  SPEAKER_00: So our mom was finally home and that mattered.
• 34:15
  SPEAKER_00: Yeah.
• 34:16
  SPEAKER_00: But home didn't mean the responsibility became smaller.
• 34:20
  SPEAKER_01: No, actually, it became ours, and actually maybe larger, right?
• 34:25
  SPEAKER_01: And I think if you're preparing to bring someone home from the hospital, don't leave with only discharge papers, right?
• 34:31
  SPEAKER_01: Leave knowing who owns the plan, what you are expected to do, and and exactly kind of where to turn when something changes or goes wrong.
• 34:40
  SPEAKER_00: Right.
• 34:40
  SPEAKER_00: And if you're the caregiver who said, Yes, I can do it because you love that person and you couldn't imagine anything else, we see you.
• 34:49
  SPEAKER_00: Yeah.
• 34:50
  SPEAKER_01: And next time we're talking about whether a caregiver can at ever really truly get away.
• 34:58
  SPEAKER_01: And what actually happened when Susan and I tried to make sure one of us was always available.
• 35:04
  SPEAKER_01: Yeah.
• 35:05
  SPEAKER_01: So join us next time.
• 35:07
  SPEAKER_01: Thanks for listening to the shit sandwich generation.
• 35:09
  SPEAKER_01: If today's episode made you laugh, cry, or just feel more seen, share it with someone who's in this with you.
• 35:16
  SPEAKER_01: Subscribe, leave a review, and let us know your own sandwich stories.
• 35:21
  SPEAKER_01: Until next time, remember you're not alone and you're doing better than you think, and you really don't have to eat the shit sandwich.