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When There's No Clear Answer · The SH!T Sandwich Generation

• 0:00
  SPEAKER_00: Welcome to episode three of this shit sandwich generation, where we talk about navigating life between raising kids and caring for aging parents and everything that comes with that.
• 0:11
  SPEAKER_00: I'm Dr.
• 0:11
  SPEAKER_00: Mary Beth Parisi here with my sister Susan, and this is the real unfiltered version of what that looks like.
• 0:19
  SPEAKER_01: So thank you for joining us again.
• 0:21
  SPEAKER_01: As a recap, last time we were talking about my mom and her cancer and her journey through cancer as well as our journey through her cancer.
• 0:32
  SPEAKER_01: We found out that she had metastatic squamous cell carcinoma.
• 0:36
  SPEAKER_01: And we had talked about whether to stay local or go into the city to a special hospital.
• 0:44
  SPEAKER_01: At that point, we decided we explored both options.
• 0:48
  SPEAKER_01: We talked to both our parents and said, let's go into the city.
• 0:52
  SPEAKER_01: We were very optimistic.
• 0:53
  SPEAKER_01: We were going to go to the city and we were going to get answers.
• 0:56
  SPEAKER_01: We were sure were.
• 0:58
  SPEAKER_01: So what actually happened was we got more information and we got more decisions.
• 1:03
  SPEAKER_00: Yeah, absolutely.
• 1:05
  SPEAKER_01: So we walked into that appointment thinking that we were going to have a clear plan coming out.
• 1:10
  SPEAKER_01: And instead, we needed to make more decisions, trial or no trial, experimental trials.
• 1:18
  SPEAKER_00: I think, you know, I went with her on that appointment with my dad, and you know, we were we were going to see and the very coordinated care.
• 1:26
  SPEAKER_00: We were going to see the med-onc and surgical onk and radiation onk the same day.
• 1:31
  SPEAKER_00: And we did, and you know, got all of their uh opinions, but I think we were kind of, you know, it was a qu it was quick as appointments usually are.
• 1:40
  SPEAKER_00: And the when we got to the radiation onc and the med-onc, they threw that they thought trial was the best plan of action.
• 1:48
  SPEAKER_00: Surgery wasn't gonna work at this point in time.
• 1:50
  SPEAKER_00: And we I think we were all surprised that you know they were gonna offer a trial and they wanted us to enroll in the trial right then.
• 1:58
  SPEAKER_00: And I don't think, you know, obviously I have a medical background, so I could kind of explain a little bit to my mom and dad, but I I think my dad was a little taken aback, he didn't know what to say or do.
• 2:09
  SPEAKER_00: And my mom was uh kind of one of those types of we'll talk about that as we get further into the episode.
• 2:16
  SPEAKER_00: You know, it was we were supposed to make a decision right then, right there, and I kind of pushed it off and said, can we can we take some time, talk to everybody, and then make a decision?
• 2:26
  SPEAKER_00: And I think part of that visit, what was really frustrating is I'm pretty cut and black and white, yeah, cut and dry.
• 2:34
  SPEAKER_00: I want to know the prognosis, I want to know the plan.
• 2:37
  SPEAKER_00: And it really, no one was willing to give an exact prognosis at this point in time.
• 2:42
  SPEAKER_00: They really had never honestly seen anything like this before, so couldn't actually get a definitive answer, which for me was very frustrating.
• 2:52
  SPEAKER_00: But anyways, we kind of walked out of there and had to make some decisions really quickly.
• 2:58
  SPEAKER_00: And I think, you know, we didn't know necessarily who was going to make that decision.
• 3:03
  SPEAKER_00: My mom was kind of not into making the decision, a little bit, I think, in denial.
• 3:08
  SPEAKER_00: What do you think, Susan?
• 3:10
  SPEAKER_01: Yeah, I think I think she was in denial.
• 3:12
  SPEAKER_01: I think we were at the point where we said, okay, it would be really helpful if we had a prognosis.
• 3:17
  SPEAKER_01: We don't have a prognosis.
• 3:18
  SPEAKER_01: I think one of the things, like you said, we're both very black and white.
• 3:22
  SPEAKER_01: We were hoping that we were kind of come out with a clear plan.
• 3:26
  SPEAKER_01: I think but realistically, when we're talking to our patients, we know like there's not always a right or a wrong answer.
• 3:35
  SPEAKER_01: It's what's the best answer and what's the best answer for this patient or this person.
• 3:41
  SPEAKER_01: Exactly.
• 3:42
  SPEAKER_01: Which became really frustrating and really difficult when it was our own family member because we had to make the decision along with my mom and my dad.
• 3:51
  SPEAKER_01: And it was very overwhelming.
• 3:53
  SPEAKER_01: I think our word for most of this journey is overwhelming and a lot of uncertainty and being scared.
• 4:00
  SPEAKER_01: Like, what if we make the wrong decision?
• 4:02
  SPEAKER_01: Absolutely.
• 4:02
  SPEAKER_01: What if the trial doesn't work?
• 4:04
  SPEAKER_01: What if the trial does work?
• 4:06
  SPEAKER_01: So a lot of unknowns and just making the right, the best decision for her.
• 4:14
  SPEAKER_01: So I think that's that was really the struggle at that moment in time.
• 4:19
  SPEAKER_01: And I remember you calling me and being like, oh, this is so not easy.
• 4:24
  SPEAKER_01: They want to do a trial, and I don't know what to say.
• 4:28
  SPEAKER_01: And I think that was, you know, that was really when it became apparent, wow, this is not something that is seen every day.
• 4:35
  SPEAKER_01: A hundred percent We knew that.
• 4:36
  SPEAKER_00: Yeah, yeah.
• 4:37
  SPEAKER_00: We we we knew this was not gonna be an easy one.
• 4:39
  SPEAKER_00: And I can say, you know, my dad used to take my mom to the to drive, and I used to meet them, and there was many car rides home that I called Susan, and we had difficult conversations on the way home.
• 4:52
  SPEAKER_00: I had to kind of debrief, and it was actually helpful, was emotional, and had some support, which I was lucky to have, and I think vice versa.
• 5:01
  SPEAKER_00: She did the the same when she went to appointments.
• 5:03
  SPEAKER_00: But, anyways, we we decided to go with the trial and we started on that that journey.
• 5:09
  SPEAKER_00: And so we did have some some idea of what the next months were gonna look like or what we thought they would look like.
• 5:18
  SPEAKER_00: But again, in medicine, you can never predict how things are gonna turn out.
• 5:22
  SPEAKER_00: And uh that this this journey proved that over and over again.
• 5:27
  SPEAKER_00: So decided to go into the journey.
• 5:29
  SPEAKER_00: She had her first immunotherapy treatment, which went smoothly.
• 5:33
  SPEAKER_00: She did really well.
• 5:34
  SPEAKER_00: I think I took her to almost all of her, it was every three weeks.
• 5:37
  SPEAKER_00: So we started that.
• 5:38
  SPEAKER_00: And, you know, I think in hindsight, I probably didn't ask as many questions when we started the immunotherapy on what to do.
• 5:47
  SPEAKER_00: Again, I knew what some of the side effects.
• 5:50
  SPEAKER_00: Again, it was my it's my field.
• 5:51
  SPEAKER_00: I know immunotherapy for squamous cell, what it can do, some of the side effects, and maybe didn't ask as many questions.
• 5:58
  SPEAKER_00: And I think it's really important sometimes.
• 6:00
  SPEAKER_00: You need to know what to do for emergencies, where to go.
• 6:03
  SPEAKER_00: Now we were down in the city, and we're the my parents are a good hour and a half from the city.
• 6:09
  SPEAKER_00: So, you know, probably should have asked a few questions on what happens if there's an emergency, you know, who do we call?
• 6:16
  SPEAKER_00: How do we get a hold of you?
• 6:18
  SPEAKER_00: And we had some of that, you know, we had the information sheet, but you know, very unexpected when Susan walked in the door one morning.
• 6:29
  SPEAKER_00: Actually, I think uh what was it, a call from my dad?
• 6:32
  SPEAKER_00: I think he called you.
• 6:33
  SPEAKER_01: So I I think we were one immunotherapy treatment in.
• 6:38
  SPEAKER_01: I feel like we were one treatment in.
• 6:40
  SPEAKER_01: And, you know, again, I think we're gonna talk about having difficult decisions ahead of time or difficult conversations ahead of time.
• 6:47
  SPEAKER_01: Again, the word is overwhelmed here, but that particular day, I mean, again, it's very interesting, right?
• 6:54
  SPEAKER_01: How things sometimes happen.
• 6:55
  SPEAKER_01: Dad called you.
• 6:57
  SPEAKER_00: Yeah, you're right.
• 6:57
  SPEAKER_00: He did.
• 6:58
  SPEAKER_01: I was kind of which makes sense because he knew you'd be home.
• 7:01
  SPEAKER_01: Yeah, yeah.
• 7:02
  SPEAKER_01: And but but Mary's an hour, a solid hour away from from my parents.
• 7:06
  SPEAKER_01: So he called her.
• 7:08
  SPEAKER_01: It was early in the morning, it was probably seven o'clock in the morning, to say that mom was bleeding.
• 7:14
  SPEAKER_01: And, you know, he for dad to call, first of all, if he's calling, you know there's a problem.
• 7:21
  SPEAKER_01: Okay, you know, he basically said she's bleeding, she bled all over her pajamas, you know, what should I do?
• 7:29
  SPEAKER_01: My my recollection, Mary, and again, we start getting really fuzzy here.
• 7:34
  SPEAKER_01: My recollection is you said, call the, you know, call the office immediately to find out what they want to do.
• 7:41
  SPEAKER_01: Yeah, and I'll call I'll call Susan.
• 7:43
  SPEAKER_00: That was probably correct.
• 7:44
  SPEAKER_00: Yes.
• 7:45
  SPEAKER_00: Yeah, absolutely.
• 7:47
  SPEAKER_01: So, you know, I fortunately at this point in my in in time, I was splitting my time between uh Pennsylvania and New York.
• 7:55
  SPEAKER_01: Yeah.
• 7:56
  SPEAKER_01: And I just happened to be home in New York that day, which is a you know, 10 minutes from my folks.
• 8:03
  SPEAKER_01: So Mary called me and said, I think you need to go over there and see what's going on.
• 8:08
  SPEAKER_01: As usual, you know, my dad's not in the medical field, he's very smart.
• 8:12
  SPEAKER_01: We always say he's smarter than any of us.
• 8:14
  SPEAKER_01: But, you know, and in that situation, he's not gonna always be, you know, he's gonna be nervous, he's gonna be worried about mom.
• 8:22
  SPEAKER_01: So I went right over, dropped everything, went right over.
• 8:24
  SPEAKER_01: And sure enough, Mary had told him, you know, call the office immediately.
• 8:30
  SPEAKER_01: I got over there, you know, in 15 minutes and said, okay, what'd the office say?
• 8:37
  SPEAKER_01: And this is where it is a little humorous.
• 8:40
  SPEAKER_01: He said, Well, you know, it's a few minutes before eight o'clock and they open at eight.
• 8:46
  SPEAKER_01: So I decided to wait until they open.
• 8:50
  SPEAKER_01: You know, again, I'm sure my dad has listened to us for years talk about emergency versus non-emergency.
• 8:56
  SPEAKER_01: But I looked at him and I said, This is an emergency.
• 8:59
  SPEAKER_01: This is when you call the emergency line.
• 9:02
  SPEAKER_00: Yeah.
• 9:03
  SPEAKER_01: So convinced him to call.
• 9:05
  SPEAKER_01: He calls the emergency line.
• 9:06
  SPEAKER_01: We get a hold of the office.
• 9:08
  SPEAKER_00: Yeah.
• 9:09
  SPEAKER_01: And, you know, to their credit, they did respond quickly and said, you know, you can take her down to the city, or you could take her to, you know, the local hospital.
• 9:21
  SPEAKER_00: And there's another decision, right?
• 9:23
  SPEAKER_00: And and it's not a, you know, you don't have an hour decide here.
• 9:27
  SPEAKER_00: She was, she was bleeding, and it's a quick decision.
• 9:30
  SPEAKER_00: And, you know, uh you you have to go with the information that you have.
• 9:34
  SPEAKER_00: Sometimes you have to go with your gut.
• 9:35
  SPEAKER_00: Sometimes, sometimes you're gonna honestly make the right decision, and sometimes you're you're not, but you have to trust that decision.
• 9:42
  SPEAKER_00: So, you know, knowing we had chosen to go down to the city to take her for her regular care.
• 9:49
  SPEAKER_00: So even though it was a drive, we knew this was a complicated case.
• 9:54
  SPEAKER_00: So we we decided in that moment, probably didn't really listen to my mom or my dad at that moment, and said, need to go to the city.
• 10:03
  SPEAKER_00: And so I think Susan, we ended up, you ended up putting her in the car and driving down the city.
• 10:08
  SPEAKER_00: Now, no ambulance, probably not the you know, smartest, but we we knew she was going to get the best care.
• 10:15
  SPEAKER_00: And she at that point had stabilized, and so drop brought her into the city, and you were you were with them, so I wasn't there at that moment, but I let you kind of pick up from there, walking into the emergency room at a major well-known hospital, and it was just backed up.
• 10:36
  SPEAKER_00: There was just people in the hallway in in Gurney's, there was people in the waiting room being treated.
• 10:44
  SPEAKER_01: Uh so I mean again, we're in medicine, so uh, you know, we're well aware of, you know, the emergency rooms are packed.
• 10:53
  SPEAKER_01: And I was surprised, I think, really surprised to find the emergency room there packed too.
• 11:00
  SPEAKER_01: Um, mom had stabilized, so that was good.
• 11:02
  SPEAKER_01: She was no longer bleeding.
• 11:03
  SPEAKER_01: Again, I think if I wasn't a healthcare person, I would advocate for taking the ambulance to the nearest hospital for sure.
• 11:11
  SPEAKER_00: Absolutely.
• 11:12
  SPEAKER_01: Um, but being in healthcare, I felt confident that I could manage it.
• 11:16
  SPEAKER_01: So we got there and she had stabilized, she had stopped bleeding, which meant she could sit in the waiting room.
• 11:22
  SPEAKER_01: And we did.
• 11:23
  SPEAKER_01: And I have to tell you, Mary, I even knowing what our waiting rooms were like, the hospital waiting rooms were like at that point, I was still amazed at there were no rooms in the emergency room.
• 11:35
  SPEAKER_01: Nope.
• 11:35
  SPEAKER_01: She needed to be actually seen.
• 11:38
  SPEAKER_01: So she she needed to take off her clothes because of the area that her wound was in.
• 11:42
  SPEAKER_01: So she needed a room.
• 11:44
  SPEAKER_01: Anyone that didn't need a room was getting care in the waiting room.
• 11:48
  SPEAKER_01: And uh, you know, again, I think what we have to realize is that our nurses and our doctors are doing the very best they can.
• 11:57
  SPEAKER_01: This is not on them, but of course.
• 12:01
  SPEAKER_01: So, of course, my mom being my mom was like, okay, I'm good, let's go home.
• 12:06
  SPEAKER_01: Um, and you know, the longer you wait, then dad starts.
• 12:10
  SPEAKER_01: I think we can go home.
• 12:11
  SPEAKER_01: No, we're not, we're not going home.
• 12:13
  SPEAKER_01: So, you know, eventually she she got in, of course, did blood work, of course she had stabilized, and they decided to keep her, which I think was the right decision.
• 12:25
  SPEAKER_01: For sure.
• 12:25
  SPEAKER_01: For sure.
• 12:26
  SPEAKER_01: No room on the floor.
• 12:27
  SPEAKER_00: No, no, she was in the emergency room for a few days.
• 12:31
  SPEAKER_00: But I think that makes a, you know, an important point about, you know, nurses and doctors.
• 12:37
  SPEAKER_00: I think everyone's doing their best with the system we have.
• 12:40
  SPEAKER_00: And sometimes as patients as and as families, we tend to get very frustrated and overwhelmed rightly so when we have emergencies.
• 12:50
  SPEAKER_00: But I think it sometimes we need to take a step back and just, you know, be as patient as we can.
• 12:56
  SPEAKER_00: You know, obviously, if it's an emergency, you want to try and facilitate, but to be as patient and not take it, take, you know, your frustration out on the staff that people that are are trying to help and have gone into this field to really help and do their best.
• 13:10
  SPEAKER_00: And sometimes it's the situation.
• 13:13
  SPEAKER_00: So she was, yeah, in the emergency room for a couple days, uh, probably two uh actually two days.
• 13:20
  SPEAKER_01: Yeah, it was it was the second night that she bled in the emergency room.
• 13:26
  SPEAKER_01: So she hemorrhaged again.
• 13:28
  SPEAKER_01: So she was in the right place.
• 13:30
  SPEAKER_01: Obviously, she was in the hospital.
• 13:32
  SPEAKER_01: It would have probably been better if she was on the floor, but again, doesn't really matter.
• 13:35
  SPEAKER_01: She was in the hospital, she did hemorrhage again.
• 13:38
  SPEAKER_01: And at that point, you know, we felt very grateful that we had made the decision that we made because they were able to put a plan into place very quickly.
• 13:47
  SPEAKER_01: And it did involve, you know, her going for radiation therapy to stop the bleeding.
• 13:53
  SPEAKER_01: She couldn't go to the OR.
• 13:54
  SPEAKER_01: We had already decided that wasn't gonna be an option for her with this size of the size of her tumor.
• 14:01
  SPEAKER_01: So it was radiation therapy, which they did get her set up for.
• 14:05
  SPEAKER_01: Again, appreciated the advocacy, appreciated that her team was there.
• 14:10
  SPEAKER_00: Yeah.
• 14:10
  SPEAKER_00: Yeah.
• 14:11
  SPEAKER_00: Which is another important.
• 14:12
  SPEAKER_00: You do kind of want to stay with your your team because you're gonna they know your case uh the the best.
• 14:18
  SPEAKER_00: So, you know, if you can manage to go to the emergency room or low location where your team is, you're gonna have better coordinated care, right?
• 14:30
  SPEAKER_00: Because your your your providers know you the best no matter what.
• 14:33
  SPEAKER_00: So we did have her team there.
• 14:35
  SPEAKER_00: They knew what was going on.
• 14:36
  SPEAKER_00: I think one of her, her, at least one of her team was in the hospital making rounds that weekend.
• 14:43
  SPEAKER_00: So we were lucky and she had to get in four treatments of intense radiation, which they got set up, which she wouldn't have gotten at a local hospital.
• 14:52
  SPEAKER_00: So very again, very grateful that we we had kind of followed our our gut decision and and taken her there.
• 14:59
  SPEAKER_00: So she got her her radiation treatments again.
• 15:02
  SPEAKER_00: You know, she at this point was a little out of it.
• 15:05
  SPEAKER_00: You know, hospitals can cause a little disorientation in in patients, particularly in the elderly.
• 15:12
  SPEAKER_01: So I think that's important for people to know, but also another reason that it is really important to have a family member there if possible.
• 15:21
  SPEAKER_00: So she was she was pretty out of it.
• 15:23
  SPEAKER_00: She was pretty out of it for almost, I would say, most of the hospital stay, you know.
• 15:28
  SPEAKER_00: So it we tried to coordinate who was going to be in the hospital.
• 15:32
  SPEAKER_00: My dad was, you know, wouldn't wouldn't leave her side.
• 15:36
  SPEAKER_00: So we were also trying to coordinate some time out of the hospital for him and had to find him a place to stay, but trying to coordinate some time so he could get some sleep.
• 15:45
  SPEAKER_00: So, you know, you you ask for help when you need help from, you know, family, friends.
• 15:50
  SPEAKER_00: If you need it, don't hesitate, would be some of my suggestions, because it really can take a toll on everyone involved.
• 15:58
  SPEAKER_00: So she was pretty much at pretty out of it.
• 16:00
  SPEAKER_00: So we didn't want to be with her.
• 16:02
  SPEAKER_00: I was there for her first when they took her down for her first two treatments.
• 16:05
  SPEAKER_00: They were gonna take her by herself.
• 16:07
  SPEAKER_00: And, you know, she didn't know her name, she didn't, she might have known her first name, didn't know her date of birth, and really didn't have any idea what was going on.
• 16:15
  SPEAKER_00: And I said, Can I please go with her?
• 16:17
  SPEAKER_00: And, you know, they were gonna take her down and she was gonna be all alone.
• 16:20
  SPEAKER_00: So they they let me go down and she was pretty much out of it, but I was there with her and sure made her feel a little bit more comfortable.
• 16:29
  SPEAKER_00: So, you know, as much as you can, you know, provide that support for your your loved one or whoever you're with.
• 16:36
  SPEAKER_01: I went with her the second day.
• 16:38
  SPEAKER_01: Again, she was still out of it, but she was with it enough to be asking anybody that walked by to help get her out of the hospital.
• 16:45
  SPEAKER_01: So, you know, she was not a person to like.
• 16:49
  SPEAKER_01: She was happy to be in the hospital.
• 16:50
  SPEAKER_01: So, you know, uh anybody that walked by, she she knew the exit sign was was behind her, and she was like, There's the exit right there.
• 16:58
  SPEAKER_01: You can take me out.
• 17:00
  SPEAKER_01: So she wasn't happy to be there.
• 17:02
  SPEAKER_01: Nobody's ever happy to be there, but I was glad that I was there to be like, no, she she can't leave.
• 17:07
  SPEAKER_01: She was on a stretcher, so nobody was about to take her.
• 17:09
  SPEAKER_01: But I think this was when we really started to realize how difficult.
• 17:14
  SPEAKER_01: I mean, we knew the journey was gonna be difficult.
• 17:16
  SPEAKER_01: We we realized how difficult this journey was gonna be.
• 17:19
  SPEAKER_01: I think it was the first time we were really facing, are we gonna lose her?
• 17:23
  SPEAKER_00: Yeah, I I think at this point, I this was the first inkling of, you know, she might die.
• 17:30
  SPEAKER_00: And is she gonna make it out of this hospital stay?
• 17:32
  SPEAKER_00: Honestly, I think there were times, especially with my dad, he was really unsure that she was gonna if she was gonna make it out or or not.
• 17:41
  SPEAKER_00: So this was a little eye-opening, and then just seeing her confused, she really wasn't eating.
• 17:47
  SPEAKER_00: She couldn't there were, you know, at first couldn't even, she was so weak, she had lost so much blood that she couldn't feed herself.
• 17:55
  SPEAKER_00: She was struggling, needed to eat.
• 17:57
  SPEAKER_00: So there was a lot of things playing, you know, a lot of emotions playing here, a lot of eye-opening situations.
• 18:05
  SPEAKER_00: And I think, again, you know, you need you need the support, you need to take breaks as much as you can and rotate if you have the support structure to do that.
• 18:16
  SPEAKER_00: Nurses were excellent, you know, they were very helpful and again, very grateful.
• 18:22
  SPEAKER_00: But it was one of those hospital stays where you, you know, you start to realize that life is sometimes unpredictable, right?
• 18:34
  SPEAKER_00: You know, reached out, started to reach out to some family and say, hey, mom's in the hospital, don't know, you know, not doing so well, not sure w what's gonna happen.
• 18:46
  SPEAKER_01: And it's okay to say that.
• 18:47
  SPEAKER_01: I think, you know, again, we're we're always worried, is this the the right time to reach out?
• 18:52
  SPEAKER_01: Is it the right thing to say?
• 18:54
  SPEAKER_01: But, you know, you don't know what's gonna happen.
• 18:57
  SPEAKER_01: So it's okay to reach out and say, hey, just want to like let you know where things stand right now.
• 19:02
  SPEAKER_01: And then let that individual decide what they want to do.
• 19:06
  SPEAKER_01: Because, you know, you can't make them, you know, come down to the hospital, you know, but you can give them the information and say, I'm concerned.
• 19:14
  SPEAKER_01: So I think that was again a lesson that we learned.
• 19:17
  SPEAKER_01: Yeah.
• 19:17
  SPEAKER_01: I think the other lesson is, you know, again, to advocate as much as you can.
• 19:24
  SPEAKER_01: So we both knew that she was confused, and we both knew about sundowning in the hospital.
• 19:31
  SPEAKER_01: And we asked on a number of occasions whether, you know, she needed a blood transfusion.
• 19:36
  SPEAKER_01: Yeah.
• 19:37
  SPEAKER_01: And again, as much as possible, trying not to be doctors, trying to just be, you know, the supportive family members.
• 19:44
  SPEAKER_01: But I think it is important to ask those questions.
• 19:46
  SPEAKER_01: Yeah, 100%.
• 19:47
  SPEAKER_01: Because I think in the end, she really again, you know, as as a medical profession, we have parameters.
• 19:54
  SPEAKER_01: We say we don't transfuse before this point in time unless somebody's hemodynamically unstable, meaning their blood pressure is not normal or their pulse is not normal.
• 20:04
  SPEAKER_01: And at that point, things were pretty good, but sh she really did, you know, eventually got a transfusion.
• 20:10
  SPEAKER_01: Again, I would say there is a time and a place for a transfusion and did much better after that.
• 20:15
  SPEAKER_01: Yeah.
• 20:16
  SPEAKER_01: Made a big difference for her.
• 20:17
  SPEAKER_01: And I think it was important we did advocate for that.
• 20:20
  SPEAKER_01: And her dementia actually got a little bit better after that.
• 20:23
  SPEAKER_01: It did.
• 20:23
  SPEAKER_00: And in hindsight, I think some of her dementia that remained after her hospital stay was probably from not being from losing so much blood and maybe not being transfused as early.
• 20:37
  SPEAKER_00: But again, you know, I think all providers, you know, you have to, we're doing the best that we can, but advocate, you know, as much as as you you can if you think something is not going right, advocate.
• 20:51
  SPEAKER_00: I think it's it's definitely important.
• 20:54
  SPEAKER_00: And, you know, I think mom, you know, mom is a pretty, her mom was a, you know, kept to herself a lot.
• 21:02
  SPEAKER_00: So I think this whole, you know, a lot of this, she didn't reach out to her friends.
• 21:07
  SPEAKER_00: She kind of kept to herself, which I wouldn't recommend because you do need your friends, you do need support.
• 21:12
  SPEAKER_00: But she was that was just the type of person that she wanted.
• 21:16
  SPEAKER_00: She's probably rolling over in her grave as we're talking about all of this.
• 21:21
  SPEAKER_00: So hey, mom.
• 21:22
  SPEAKER_00: If you're listening, sorry, but trying to kind of help others through if they're going through a similar situation.
• 21:29
  SPEAKER_00: Friends really uh even if it's a phone call, you know, it makes a difference to that person that's in the hospital.
• 21:37
  SPEAKER_00: Flowers, you know, it just gives them an extra little push.
• 21:42
  SPEAKER_00: And sometimes that's all you need.
• 21:44
  SPEAKER_00: A patient needs to feel a little better, to go to the next, you know, next step is a phone call from a friend or a relative or a card.
• 21:53
  SPEAKER_00: You know, it doesn't, sometimes it doesn't take much.
• 21:55
  SPEAKER_00: So, you know, if you know somebody going through something, you know, reach out.
• 22:00
  SPEAKER_00: We're all human here.
• 22:01
  SPEAKER_00: The more we can support each other, I think, you know, the better off our, you know, we all are.
• 22:07
  SPEAKER_01: Extra prayers don't hurt.
• 22:09
  SPEAKER_00: Exactly.
• 22:10
  SPEAKER_00: You know, if you're religious, prayers are always a a good thing as well.
• 22:14
  SPEAKER_01: So I would say that's one thing that we could have done differently is, you know, let some of her friend friends know.
• 22:21
  SPEAKER_01: I think it would have made a difference for her.
• 22:23
  SPEAKER_01: But again, we were trying to respect her wishes.
• 22:25
  SPEAKER_01: So there is that fine.
• 22:27
  SPEAKER_00: There is a hard, it's a hard line, right?
• 22:29
  SPEAKER_00: You don't know it's your mom.
• 22:32
  SPEAKER_00: Do you listen to her or do you not listen to her?
• 22:34
  SPEAKER_00: I mean, you know, we grew up as kids.
• 22:36
  SPEAKER_00: You always had to listen to your mom.
• 22:37
  SPEAKER_00: What do you, what do you do now?
• 22:39
  SPEAKER_01: And that's what we're talking about here, right?
• 22:41
  SPEAKER_01: Sandwich generation.
• 22:42
  SPEAKER_01: This is when you start caring for your your parents and helping your parents, and the tables turn a little and you have to say, okay, what's best?
• 22:51
  SPEAKER_00: What's best?
• 22:52
  SPEAKER_00: Yeah, what's best for for her, what's, you know, and sometimes you want to honor, honor her and honor her decisions, but sometimes you have to push a little bit.
• 23:02
  SPEAKER_00: And I I think we, you know, that was a hard thing the whole time.
• 23:05
  SPEAKER_00: She a lot of this treatment, she really wasn't on board.
• 23:09
  SPEAKER_00: She didn't want to talk about it.
• 23:10
  SPEAKER_00: Dad, you know, was trying to do his best and give her as much, you know, support as he could, but she's a tough page.
• 23:18
  SPEAKER_00: She was a tough patient.
• 23:19
  SPEAKER_00: She was a tough patient.
• 23:21
  SPEAKER_01: She was a tough patient.
• 23:22
  SPEAKER_01: And I think many of you out there can probably relate to that.
• 23:25
  SPEAKER_01: You know, parents can be tough patients.
• 23:28
  SPEAKER_01: And, you know, again, when they become, you know, people that you're taking care of and the dynamics change, it is really challenging.
• 23:37
  SPEAKER_01: Yeah.
• 23:38
  SPEAKER_01: Mary, I want to talk about like getting ready to take her home.
• 23:41
  SPEAKER_01: Yeah.
• 23:41
  SPEAKER_01: Because I think this is one of those things that's pretty funny.
• 23:44
  SPEAKER_01: Actually, it's not funny, but it's kind of funny, right?
• 23:47
  SPEAKER_01: So, you know, as many of you know who've had a loved one or been in the hospital yourself, um, trying to get the plan in place for discharge is just as difficult, I think.
• 23:59
  SPEAKER_01: And knowing when somebody's going to go home and what they need is it's hard.
• 24:05
  SPEAKER_01: It's hard.
• 24:05
  SPEAKER_01: It's very hard.
• 24:06
  SPEAKER_01: And if you've had a parent that was, you know, basically high functioning, didn't need any uh anything to help them before, this is like doing a 180 and getting your house changed and hospital beds.
• 24:21
  SPEAKER_00: And if you have parents that didn't want a downside, they're in a house that has multiple stories, stairs, you know, and and these are things that you have to modify within days of of discharge.
• 24:34
  SPEAKER_00: And again, this is one of those things that no one I think prepares you for, right?
• 24:39
  SPEAKER_00: I mean, there's no no education on this.
• 24:42
  SPEAKER_00: What do I do?
• 24:42
  SPEAKER_00: How do I do this?
• 24:44
  SPEAKER_00: And I I, you know, we will have future episodes on how, you know, how to facilitate, how to get what you need.
• 24:51
  SPEAKER_00: But yeah, we were we were completely a little blind.
• 24:56
  SPEAKER_01: Is really um is really what it was.
• 24:58
  SPEAKER_01: And you know, again, it's one of those things like yesterday she wasn't ready for discharge, but you go in at, you know, seven o'clock in the morning, and the nurse says she's being discharged today, and and you're trying to get everything in place for the discharge.
• 25:12
  SPEAKER_01: Obviously, we're 90 miles away from home, so we're just getting everything together as quickly as we can.
• 25:20
  SPEAKER_01: I mean, this is really funny.
• 25:22
  SPEAKER_01: So we have our car in the parking garage, and I used to work, I'm gonna feel free to say this.
• 25:28
  SPEAKER_01: I used to work at Rockefeller University and would, you know, commute to work walking down York Avenue.
• 25:34
  SPEAKER_01: So here we are, Mary.
• 25:36
  SPEAKER_01: Yeah.
• 25:36
  SPEAKER_01: What were we carrying down York Avenue?
• 25:38
  SPEAKER_01: You were carrying the walker.
• 25:40
  SPEAKER_00: I was carrying the so we had gotten it, we'd gotten everything that we needed for discharge.
• 25:44
  SPEAKER_00: I think I was carrying the walker, you were carrying the mode.
• 25:49
  SPEAKER_00: So something I never thought I'd be carrying down York Avenue.
• 25:52
  SPEAKER_00: So we we get in the, I think we got in the elevator with all of this this stuff.
• 25:57
  SPEAKER_00: We're we're parked in the parking garage.
• 25:59
  SPEAKER_00: My dad was there.
• 26:00
  SPEAKER_00: We got, I think we got my mom into the car, so he was gonna drive her home.
• 26:04
  SPEAKER_00: So I think there was somebody in the the guy who was in the elevator with us.
• 26:08
  SPEAKER_00: There's a man, very nice, asks us if we want a hand, and and we're like, no, no, we got it.
• 26:15
  SPEAKER_00: You know, we're we're gonna be modern women.
• 26:17
  SPEAKER_00: We're modern women.
• 26:18
  SPEAKER_00: We got our hands full, we're just holding it a toilet and walker and probably a couple bags, but we got it, we're good.
• 26:25
  SPEAKER_00: So we walk out of the hospital, we're walking down the the street.
• 26:30
  SPEAKER_00: I think I dropped something.
• 26:31
  SPEAKER_01: Yeah, I think part of the part of the commode fell off or something like that.
• 26:35
  SPEAKER_00: And who the hell ever thought we would be?
• 26:36
  SPEAKER_00: I I never thought I would be dropping walking in New York City with a a commode or a walker, and here we are, walking down New York City looking, looking good, carrying our our mom's toilet and her her walker.
• 26:50
  SPEAKER_00: And so one of us dropped something, and the guy is right behind us again.
• 26:54
  SPEAKER_00: He's like, You sure you don't want any help?
• 26:57
  SPEAKER_01: Nope, nope, we got it.
• 26:59
  SPEAKER_01: So, moral of the story is take the help.
• 27:02
  SPEAKER_01: You know, it's it's there for a reason.
• 27:04
  SPEAKER_01: Somebody's reaching out to you.
• 27:06
  SPEAKER_01: Take the help.
• 27:08
  SPEAKER_01: We could have really used the help.
• 27:09
  SPEAKER_01: Yeah.
• 27:09
  SPEAKER_01: So thank you.
• 27:10
  SPEAKER_01: If you're out there listening, we appreciate the offer, multiple offers.
• 27:14
  SPEAKER_01: I think the moral of the story there is, you know, there are kind, very kind people that are willing to help.
• 27:20
  SPEAKER_01: Absolutely.
• 27:20
  SPEAKER_01: People that you don't know, strangers.
• 27:22
  SPEAKER_01: Strangers, yeah.
• 27:23
  SPEAKER_00: Let them help you.
• 27:24
  SPEAKER_00: Yep.
• 27:24
  SPEAKER_00: And he went right into the same parking garage as we did.
• 27:28
  SPEAKER_00: And very nice.
• 27:29
  SPEAKER_00: Yeah, if he's listening, thank you.
• 27:31
  SPEAKER_00: But yes, I think take the help, even if it's from a stranger, and just give a a give a thank you, and it's it's appreciated.
• 27:39
  SPEAKER_00: So if you're in the situation to give the help, offer because it's it is much appreciated, even if it's turned down.
• 27:47
  SPEAKER_00: Yes, multiple times.
• 27:49
  SPEAKER_01: Uh so Mary, I think, you know, we got her home, and I think this was just the beginning of we thought, oh, okay, we got her through this visit.
• 27:58
  SPEAKER_01: I think it was just the beginning of the hardest.
• 28:01
  SPEAKER_00: Absolutely.
• 28:02
  SPEAKER_00: I think, you know, the the visit was very eye-opening.
• 28:05
  SPEAKER_00: You know, it was something we never anticipated.
• 28:09
  SPEAKER_00: We were grateful that she was stepping out of the hospital alive, and we thought, whew, we're golden.
• 28:15
  SPEAKER_00: We got her out.
• 28:16
  SPEAKER_00: We're gonna continue on to every three weeks immunotherapy.
• 28:20
  SPEAKER_00: We know radiation is coming, but we're golden.
• 28:23
  SPEAKER_00: And yeah, I think uh, you know, again, life takes you by surprise, and you know, it wasn't, and we'll continue on, but I think you know, a lot learned from from that hospital stay, you know, and I think it was a new new it wasn't a return to normal, it was a return to a new version of what life looked like as part of the sandwich generation.
• 28:53
  SPEAKER_01: Absolutely.
• 28:54
  SPEAKER_01: You know, one of the things that we wanted to do is, you know, give some key takeaways from that experience, right?
• 29:02
  SPEAKER_00: Absolutely.
• 29:02
  SPEAKER_00: I think yeah, what would you say we learned from that that experience, Susan?
• 29:07
  SPEAKER_01: What would what what do you think changed you or what'd you what'd you learn?
• 29:12
  SPEAKER_01: I think as as a family member, right?
• 29:15
  SPEAKER_01: I mean, you know, sometimes there isn't a right decision per se in terms of medical treatment, but there's a best decision for you know you or your family member.
• 29:29
  SPEAKER_01: Yeah.
• 29:29
  SPEAKER_01: And you know, sometimes you are making decisions with uh incomplete information.
• 29:35
  SPEAKER_01: Like we couldn't get mom to really weigh in.
• 29:38
  SPEAKER_01: And that's normal and it's okay.
• 29:40
  SPEAKER_01: And sometimes you just have to say, let's make the the best decision.
• 29:45
  SPEAKER_01: I as a physician always say, you know, multiple opinions can help.
• 29:49
  SPEAKER_01: Too many opinions can't help.
• 29:52
  SPEAKER_01: So my rule of thumb is three uh opinions max for my patients.
• 29:57
  SPEAKER_01: And I think that held true for this situation as well.
• 30:01
  SPEAKER_00: So what is what is three?
• 30:03
  SPEAKER_00: Three, uh why three?
• 30:05
  SPEAKER_00: Why three?
• 30:05
  SPEAKER_00: Why three?
• 30:06
  SPEAKER_01: Three, you know, most likely if you have three opinions, you're gonna get two that are closely aligned.
• 30:12
  SPEAKER_01: Yeah, and if you get two that are closely aligned, I think you can feel pretty confident that that is you know a good course.
• 30:19
  SPEAKER_00: So the rule rule of th rule rule of three.
• 30:21
  SPEAKER_00: Rule of three is my is my personal rule.
• 30:24
  SPEAKER_01: I didn't learn that in medical school.
• 30:26
  SPEAKER_00: I like that.
• 30:26
  SPEAKER_00: I like that.
• 30:27
  SPEAKER_00: I think that's a good it is a good because you're gonna you most of the time when you're dealing with something complicated, you're gonna probably want a second opinion.
• 30:34
  SPEAKER_00: And after three, it's too many.
• 30:37
  SPEAKER_00: So rule of three is is I like it, three max.
• 30:40
  SPEAKER_01: I mean, if two max, you're good.
• 30:41
  SPEAKER_01: You don't have to go to three, but yeah, but I think three is is the sweet spot, no more than that.
• 30:47
  SPEAKER_01: What did you learn, Mary?
• 30:49
  SPEAKER_00: Yeah, I think you know, uh the the biggest takeaway from that whole experience was, you know, decisions are gonna come at you quick and they're gonna be unexpected, and you're gonna take the information that you have at that point in time, and you're gonna go with it even if you don't feel as confident as you want.
• 31:12
  SPEAKER_00: You just have to go with that decision and make the decision.
• 31:16
  SPEAKER_00: You won't feel confident every time.
• 31:18
  SPEAKER_00: Move forward, and you can always adjust as you go if you need to, but just move forward with the decision, right?
• 31:25
  SPEAKER_01: Yeah, I think being prepared to like I I don't think we were expecting to have to go to the hospital, but I think having that discussion ahead of time would have been helpful.
• 31:36
  SPEAKER_01: Like, what are we going to do?
• 31:37
  SPEAKER_01: Like, are we gonna go down to the hospital?
• 31:39
  SPEAKER_01: I think a little role, yeah.
• 31:40
  SPEAKER_00: I think a little role playing ahead of time, you know, when you're starting any major kind of treatments for cancer or any illness, understand different situations.
• 31:50
  SPEAKER_00: If something happens, what am I gonna do or something goes wrong?
• 31:55
  SPEAKER_00: Important to do ahead of time and you know, have those documents in place, you know.
• 32:02
  SPEAKER_01: Have your meds written, the meds written down, the doctor's names written down, you know, medical history written down, all those things ready to go in your wallet.
• 32:11
  SPEAKER_01: Just keep it in your wallet.
• 32:13
  SPEAKER_01: I I think it would have been a good idea for us to have it in our wallets too.
• 32:17
  SPEAKER_01: I didn't, but dad always had it with him or on his phone.
• 32:20
  SPEAKER_00: And have the difficult uh conversations, right?
• 32:23
  SPEAKER_00: Um mom was, you know, kept things close to her.
• 32:26
  SPEAKER_00: I do the same thing, you know.
• 32:28
  SPEAKER_00: No one wants to talk about death, but keep you know, have the difficult conversations or being sick, right?
• 32:34
  SPEAKER_00: You know, just so it means in the event you're sick, have the difficult conversations.
• 32:40
  SPEAKER_00: I uh no one wants to talk about death, but you need to.
• 32:43
  SPEAKER_00: You need to know what's gonna happen.
• 32:44
  SPEAKER_00: That's part of being in the shit.
• 32:47
  SPEAKER_00: Exactly.
• 32:47
  SPEAKER_00: I should have that conversation with my kids, you know.
• 32:50
  SPEAKER_00: Uh so we got her home, and I think part of us thought that was gonna be the hardest part, but it it wasn't.
• 32:56
  SPEAKER_00: It was just different.
• 32:58
  SPEAKER_00: We at that point knew there was it wasn't gonna be unfortunately a return to normal, just a new version of what life looked like.
• 33:06
  SPEAKER_00: And getting her home was really just the beginning of a completely different phase, and there's no perfect way to navigate this.
• 33:14
  SPEAKER_00: You just make the that the best decision you can in the moment and take the net next step.
• 33:20
  SPEAKER_01: Yeah, so that's you know, that's what we're here for, that's what this is about.
• 33:24
  SPEAKER_01: So if you too find yourself carrying a commode down York Avenue, you are very likely in the shit sandwich generation.
• 33:34
  SPEAKER_00: Yeah, we did not take a picture.
• 33:36
  SPEAKER_00: No, we did not.
• 33:36
  SPEAKER_01: So thanks for listening to the shit sandwich generation.
• 33:40
  SPEAKER_01: If today's episode made you laugh or cry or just feel more seen and validate it, share it with someone who's in this with you or maybe going through it.
• 33:50
  SPEAKER_01: Subscribe, leave us a review, let us know your own sandwich generation stories.
• 33:56
  SPEAKER_01: And until next time, remember you're not alone, you're doing better than you think, and you really don't have to eat the shit sandwich.