TRANSCRIPT OF AUDIO FILE:

BEGIN TRANSCRIPT:

THERAPIST: Is this a typically good time for you? Because we can look at it.

CLIENT: It can stay at the moment.

THERAPIST: Okay. Let’s look.

CLIENT: (chuckles)

THERAPIST: Yeah. So, it’s semi-regular. You could have it. (chuckles) Looks like I have it most days, but some day—there are some Monday where I have someone scheduled. It looks like every other. So, next week, we had scheduled for Wednesday, the 5th. But I can do March 3rd, which would be the Monday, at 12:30, if you prefer that.

CLIENT: I think so. Yeah. I can (inaudible at 00:00:41).

THERAPIST: Yeah. So, that’s next Monday, the 3rd. You can have the 12:30. But then, the following Monday, the 10th, I don’t have the 12:30 open. But I could do—then you could have the Wednesday, I think it was 3:30 we had looked at? [00:01:06] On the 12th?

CLIENT: Mm-hmm. Do you have anything else on Monday?

THERAPIST: Right now, I don’t. Not unless somebody canceled.

CLIENT: Okay. So, let’s just hold on, I guess, to—it was at Wednesday, the 10th?

THERAPIST: Wednesday, the 12th.

CLIENT: Right.

THERAPIST: I have a 3:30.

CLIENT: Okay. Let’s do that.

THERAPIST: Okay. Or (inaudible at 00:01:30) 12:30.

CLIENT: I can’t do it on Wednesday.

THERAPIST: Okay. Yeah. So, it looks like you could have a Monday at 12:30 every other week, because then, like the 17th, the 12:30’s open on Monday. And then we’ll just play it—after that, we can see which . . .

So, where are things today? I saw you laughed. [00:02:01]

CLIENT: (chuckles)

THERAPIST: You were buzzing.

CLIENT: (sighs) I feel like every time I come, I have no idea how I’m feeling. Week after week.

THERAPIST: Well, I think part of this time is for you to be able to have a quiet-enough space to figure out what you’re feeling.

CLIENT: And I was thinking about it today, because this morning, with all of his doctors’ appointments and things, I was excited just to go out. (chuckles) Monday and Tuesday, we’ve decided (inaudible at 00:02:27) all stay home with him (inaudible at 00:02:28). And then, yesterday, this—I guess I’ve only been home with him for two days, but it deteriorated into I’m not sure I ever changed out of my pajamas. And I watched an entire season of a TV show I’ve been watching. (chuckles) I sort of just gave in, I guess. Which was nice, but if I did it for another day, it would become really depressing. And actually, I could’ve easily deteriorated. (chuckles)

But instead, I went for a run. [00:03:00] We had a puppy visitor. I don’t know. Every day, I could easily go down the tubes. Or be a good day. Depending on little things.

THERAPIST: What, for you, determines a good day versus down—what feels like a day that’s down the tubes, and what feels like a good day?

CLIENT: (sighs) I mean, unfortunately, it has a lot to do with him, because—this morning he was having a lot of pain. And he was really stressed about going to the doctor. And I made it worse by going to the wrong place completely. We ended up having to park, go in, realize we were at the wrong doctor’s appointment. (chuckles) Go. Find somewhere else. And getting in and out of the car is exhausting. Not really, but not in public yet. And just the first few people we walk by, we get what—who is that. (chuckles) It was just a long (inaudible at 00:03:51).

And also, to have—I made a mistake and –

THERAPIST: Yeah. And then feel like you’re rushing or –

CLIENT: Well, (inaudible at 00:03:56) go and see a new doctor. And then, fill out a whole new set of paperwork. And tell our story all over again. [00:04:01] (chuckles) And then, he got talk about pain drugs again. Just been such a tough subject.

And he got home. And I decided I would go for a run, because I knew I was coming here and I knew I needed to put some warmer clothes on (inaudible at 00:04:20). (chuckles) And so, that was good. And then, I got a text that our puppy was visiting downstairs. So, I (inaudible at 00:04:25) the puppy up. Josh immediately got up and started playing with the puppy. And it was almost snapped into a good trajectory (inaudible at 00:04:36).

I mean, Josh came home in so much pain. His back was killing him. He just had the talk about pain drugs. I thought things were going down the tubes, but they didn’t, so—well, who knows what’ll happen when I get home, but—and I left and he was telling me how he was going to try to make lasagna. Which was (inaudible at 00:04:56). (chuckles) I don’t know. I mean, it seems –

THERAPIST: So, you’re living in apprehension of what it’s going to be like. [00:05:05]

CLIENT: Yeah. (inaudible at 00:05:06) pain and going out in public, for him, also really affect me.

THERAPIST: Yeah. I wonder what’s the—it seems like there’s not much of a separation between what’s happening with him and how you’re feeling.

CLIENT: Well, if I can do the things that—(inaudible at 00:05:25) running.

THERAPIST: Mmm. Then you feel you have more of a barrier between (inaudible at 00:05:29).

CLIENT: Yeah. And on Thursday, I was—when—I saw you on Wednesday?

THERAPIST: Mm-hmm.

CLIENT: I did go for a run. Forced myself to be nice to his mom. The next day, I was still pretty—my friends took me out for a couple drinks and his mom offered to stay there until 10:00, when I came home, which was really helpful. Although, I think this is not a good pattern of things I keep doing. I get crazed and I end up doing so much stuff to try to calm down that I’m exhausted (ph). (chuckles) [00:06:01] And I end up staying up in my pajamas for the whole weekend.

But it wasn’t too—it wasn’t as bad as the last time I did that. (chuckles) So, I guess that’s good. I don’t know. I think the enormity of the months we’re going to have to wait is just really frightening.

THERAPIST: Yeah. And you don’t really know how long you have to wait, right? So, it’s the idea that it’s going to be months, but how many?

CLIENT: Yeah. And, I mean, he’s really—my parents were over. He’s the one who said this to me, about how he wished he’d never agree to the surgery. Ever since he got his Pacemaker in, he just went downhill (inaudible at 00:06:42) struggling with the, “This all really have to happen.” (chuckles) He’s (inaudible at 00:06:46) my (inaudible at 00:06:47) lawyer.

And I don’t know. It’s hard to believe that he would have not been able to leave the hospital without this machine at this point. It’s just destroyed him so much. [00:07:02] And my parents were trying to see if he would go out to dinner on Saturday night (inaudible at 00:07:05). (chuckles) It’s exhausting for him just to get out of the house. And I don’t know. I guess we had a fantasy that he would bounce back quicker. And he is bouncing back fast, but (crosstalk at 00:07:17).

THERAPIST: It’s a big change.

CLIENT: Yeah. Well, I mean, he just—he’s just a shell. (chuckles) He’s a shell. And I don’t know. I’ve been trying to tell myself that he went from a breathing tube to walking around the halls in about a week –

THERAPIST: Wow.

CLIENT: which is pretty fast. So, I’m just hoping the next week, things will be further along than I could’ve thought they would be. But I don’t know. Thinking about these makes—I probably horrified (inaudible at 00:07:50). I think really getting down. (inaudible at 00:07:54) to you. I don’t know. It’s so much more work than I thought. Just every day. [00:08:00] And I don’t foresee most of that going away.

THERAPIST: Mm-hmm. Well, I think it’s hard to know what to predict. Because you’ve never been through this before. I mean, this is—there’s nothing comparable in your life or his life to know what the trajectory will be, how you’ll (ph) adjust to what the work actually is.

CLIENT: (sighs) Yeah. Yeah, I mean, the limitations of the device, though, are so huge that they cannot get a whole lot better. I mean, there’s just not a way around it. (chuckles) I mean, even just the thought of in two weeks, I won’t have to give him (inaudible at 00:08:41) antibiotics twice a day is so exciting, because just remembering to give those and doing it properly? I mean, also, I’m pretty not a very good calm and collected person. And so, having to do everything properly so I don’t hurt him multiple times a day (chuckles) –

THERAPIST: It’s a lot of pressure. [00:09:03]

CLIENT: it’s exhausting. I’m (inaudible at 00:09:04) so much mental energy. I was watching him training a puppy. After two times of getting the puppy to sit, the puppy’s exhausted. (chuckles) I feel like that a lot.

Last night, I was changing his dressing. And he wants to wait until the nighttime to do it. And changing his dressing involves making our living room sterile. And sterile gloves and sterile everything and not touching anything so that everything stays sterile. And cleaning him in just the right way so that that’s all sterile. And then, cleaning up this giant pile of medical waste that I’ve created by doing all this. And doing it (inaudible at 00:09:44) him.

And last night, I was really tired and I was trying so hard to be really careful. And yet, I still poked him in some way that (sighs) caused him pain for a while. (chuckles)

THERAPIST: So, it sounds like part of it is made harder that he wants to wait until nighttime to do it. [00:10:03] Yet, you’re the one that’s actually having to do all of this. Would it be easier for you to push to have him change the dressing in the morning or in the middle of the day? Is there a time when it would be better for you?

CLIENT: Yeah. Soon, we’ll figure it out, but, I mean, things are still settled down a tiny bit, but not really. I mean, just the other day, we had three nurses in house. One wanting to learn how to do the dressing and I was going to go to school. They’re like, “Well, can you do it so that we can see and then, watch you and also teach this lady?”

THERAPIST: Yeah. So, there isn’t a routine yet.

CLIENT: And (inaudible at 00:10:49) when there will be one.

THERAPIST: Right. It’s a lot of constant adjustment that you’re being asked to make. [00:11:00]

CLIENT: Yeah. And it’s exhausting. (inaudible at 00:11:03) have been a bit of schoolwork (sighs) which is causing me stress. And, I mean, I was sitting on the couch, watching TV last—yesterday, I guess, thinking about how I should probably do some work and the thought was just so exhausting. (chuckles)

And I’m sure it’ll get better, but sometimes, I mean, I know he said to me before, sometimes, when he’s doing really, really badly that he would just give up if it wasn’t for me. I wish I could say the exact reverse (chuckles) but it’s not quite the same.

THERAPIST: You guys are in very different positions. What would you say?

CLIENT: I don’t know.

THERAPIST: What’s your honest response?

CLIENT: Running this morning, I was trying to think of what—why am I doing all this? What do I hope for? I mean, I guess I’m doing it for him. [00:12:00] And, I don’t know, I can’t decide what’s keeping me going, I guess. (chuckles)

THERAPIST: Do you want to keep going?

CLIENT: I do, for some reason. I mean, I wanted to give up. My feelings wanting to give up are much less than the reverse. I don’t know why. I don’t know why I wanted to go to the hospital every day, even the snowstorms.

THERAPIST: Mmm. But you did, and that’s really meaningful.

CLIENT: I mean, it’s only –

THERAPIST: (inaudible at 00:12:38) understand why you feel the way you do, but it does seem like you’re coming to know what you feel with much more certainty.

CLIENT: You think so?

THERAPIST: I do. (chuckles) I don’t necessarily know more than you do, but in listening to what you question in here, the big question of do you want to be with him seems to be something you ask yourself less (inaudible at 00:13:08) here. [00:13:09] I mean, I only get a limited picture of what’s going on inside your head.

CLIENT: Uh huh.

THERAPIST: But the past couple times that I’ve asked you question of, “Well, do you really want to be with him? Do you want to do this at all?” You seemed to answer was quite a lot of certain that yeah. You don’t know why you want to do it, but you do. Right? You find yourself questioning less. Does that resonate with you? Am I getting a skewed picture?

CLIENT: No, it does. It does. Things are just so up and down, up and down. But I guess yes.

THERAPIST: It’s certainly not the picture that you envisioned for the two of you. [00:14:00]

(pause)

CLIENT: Yeah. But I mean, taking it out in public today was definitely painful.

THERAPIST: What did you feel?

CLIENT: Well, I think the worst was when we were meeting this doctor. She seemed really great, but you could just—it was a little—it was overwhelming for everyone, I think. Including her. I mean, I don’t know, maybe –

THERAPIST: What doctor was this? What did she –

CLIENT: It was just a primary care doctor. And she was saying things like, “He has (inaudible at 00:14:38) for you. You’re (inaudible at 00:14:39) to be mine.” I don’t know. Just were pitying things, which everyone says, and that’s fine. It’s just I guess we both just want to do it and get through it and not have to (chuckles) face how abnormal it is all the time.

THERAPIST: Yeah. Well, it’s not abnormal for him anymore.

CLIENT: Right.

THERAPIST: Right? [00:15:00] This is not the first time he’s heard this story. (inaudible at 00:15:04) hearing that isn’t—it doesn’t feel like empathy.

CLIENT: You know what? Actually, I mean, a lot of things that are good for him are not good for me. And I had a conversation with my dad about it, which was nice. On Saturday night.

THERAPIST: Can you say more—what do you mean, the things that are good for him are not good for you?

CLIENT: Well, like my dad coming over and saying lots of things that are very—that seem to me to be not condescending or just overly almost Hallmark. (chuckles) He loves it. And to me –

THERAPIST: So, Josh feels really supported by that. But you getting exposed to it feel –

CLIENT: Not listened to, I guess. It’s just not what I need. But I was so grateful when my parents came over and they offered to take us out to dinner (inaudible at 00:15:58) just took me out to dinner. [00:16:00] And again, I was—I think I was still in my pajamas, so I put some clothes on. (chuckles) And went out. And had a glass of wine. And I don’t know, I was so relieved, I guess, to be out at the restaurant with them that I just said a lot of things to my dad that were helpful. Like that. How it helped (inaudible at 00:16:26) for Josh. And how helpful he is for me, sometimes, and what he could do differently. And my mom backed me up on some of it, which was really nice.

And then, he also—I let him fix a bunch of stuff in my house. And, I don’t know, it was very positive (crosstalk at 00:16:44).

THERAPIST: (crosstalk at 00:16:43) Yeah. I think that in figuring out how to get through this phase, what’s important is remembering that you have needs. And your needs are as legitimate as Josh’s needs. [00:17:01] And to make sure that all of the things that you need and that help you to feel better don’t get lost in trying to do the things that Josh needs. And I think that because he’s the patient and his health is—physically, the health is a lot more precarious, sometimes what you need gets waitlisted.

CLIENT: Yeah. Actually, I felt really bad about last time, thinking that he wouldn’t want me to go. Or I had to get home. He wouldn’t want me to go running and I couldn’t tell him. Because, I mean, he’s acted that way—well, he—or, he’d acted that way in the past, when he’d been really depressed. But that’s been a long time since he’s resented me, I guess, for doing the things I need to do. He didn’t resent me for going running today, (inaudible at 00:17:49) happy that I would do it. I’m sure he feels all kinds of sad, but he doesn’t tell me that as much anymore. [00:18:01] So, I mean, he—I’m not sure why. I was just feeling so worked-up, I guess. I was feeling guilty (inaudible at 00:18:09).

THERAPIST: Ah. That’s, I think, your fear that he’s going to be angry or—and your own guilt for taking care of yourself gets in the way.

CLIENT: It’s not even guilt for taking care of myself. It’s guilt that I should be there, doing what—I forget what I was supposed to be doing last week. Oh, letting his mom go home or—I don’t know.

THERAPIST: But what’s to say that you should do that more than you should have a meal out with your family or take a run or go to yoga or go to work?

CLIENT: (sighs) I don’t know. (sighs) I wasn’t feeling super-rational (chuckles) last week.

THERAPIST: I think all of those things are important. And for you to be able to balance your life, your life continues. [00:19:01] Taking care of him and helping him is part of your life, but it—I don’t think that you can go on for an extended period of time with it being your only focus. I mean, it feels—and it hasn’t been. You’ve been struggling really hard to make sure that there is—there are other foci. But it’s going to be kind of a constant need to pay attention to. Are you getting enough of the other stuff so that you can keep doing this? Because it could be a long time.

CLIENT: And I need to fit school back in. I don’t know (chuckles) when that will happen, but…

THERAPIST: Mmm. But at some point, there does need to be a space for it, because it makes you feel better. And it’s an important piece. Your career is important. That you can continue to move along that trajectory.

CLIENT: I mean, that was the first thing, when I was running, that—I feel like that was what—the one thing I really, really wanted to be doing with my life right now. [00:20:07] And I feel like I’m really grateful that I’m doing it. Didn’t really want to think that that’s what I’m living for, that doesn’t feel right, but . . .

THERAPIST: But it does give you a good sense of purpose and satisfaction.

CLIENT: Right.

THERAPIST: It’s a big piece of your identity. You’re a doctoral student. Big part of your identity.

CLIENT: Yeah. (chuckles) Despite the fact that I question whether it is the right thing to do all the time. I started Googling how to become a doctor again yesterday.

THERAPIST: Mmm. Well, you’re getting a lot of training.

CLIENT: Yeah. After I finished doing his dressing. Because, I mean, you don’t see very many of his devices in the hospital. [00:21:01] And I’ve probably done it as many times as your average nurse, and (crosstalk at 00:21:04) more at this point (inaudible at 00:21:05). (chuckles)

I’m just constantly Googling every problem. Any medication.

THERAPIST: What are you hoping to gain by that?

CLIENT: Going to medical school?

THERAPIST: The constant Googling. (chuckles)

CLIENT: Oh. To make sense of it all. And because I don’t trust them. I mean, even just because we (inaudible at 00:21:38) home with the mismatched med lists.

THERAPIST: Yep. You want the information to be able to determine what’s correct.

CLIENT: Right. And there’s a lot at stake if it’s not correct. Even just his supplements, I had a mismatch med list and I tried to give him 12 (inaudible at 00:21:59) of. [00:22:00] (chuckles) And he stopped me and (crosstalk at 00:22:03) horrified that I could have almost done it. I’m sure people make mistakes constantly.

THERAPIST: I’m sure mistakes happen.

CLIENT: And even just a couple days ago –

THERAPIST: (crosstalk at 00:22:12) scary.

CLIENT: he took too many pain drugs and was feeling super-nauseous, because he was in a panic over trying to get out of the house to go to the pain doctor. (chuckles) I think I might have told you.

THERAPIST: No.

CLIENT: Maybe not.

THERAPIST: You didn’t tell me.

CLIENT: And then, we had a day of him being nauseous. Just because he took not too many drugs but too many at once. Despite the fact that they were prescribed (inaudible at 00:22:35), I don’t know. (chuckles)

THERAPIST: So, you want to become a doctor or you want to save him?

CLIENT: I mean, I just—I find it always so fascinating. I don’t know. (chuckles) I do (inaudible at 00:22:52) think about would I really want to do this for other people? (chuckles) I don’t know. Maybe. [00:23:00]

THERAPIST: Well, there are crazier thoughts. You are in the sciences, right?

CLIENT: Yeah. (chuckles)

THERAPIST: So, I mean, there are—it makes sense that—I mean, you’ve got—clearly, you’ve got a big, personal interest and stake in figuring out and getting really educated about his device, his meds, his condition. And, I mean, you’re interested in science anyway.

CLIENT: I mean, I got into the field I’m in, into environment stuff, because I took a class on conservation biology. Basically, how we’re destroying everything. And I became so upset about the whole thing. I mean, I became vegan. I was the most obnoxious daughter to my parents, constantly trying to get them stop using plastic. I mean, I just went (chuckles) [a little] (ph) crazy for about a couple years. Until I became I guess cynical about it. But I still felt really strongly that I wanted to work on it. [00:24:01] So, I guess this is just another instigator.

THERAPIST: It’s just another extension. Yeah.

CLIENT: (chuckles)

THERAPIST: I mean, feeling a personal investment in what you’re studying certainly does increase the level of engagement that you want to give to it. You’ve been drawn into this medical world ferociously, whether by choice (chuckles) or not. You were thrown in the middle of it and you have become the—a caretaker. You’re the one constant.

CLIENT: I mean, it’s also incredible to me how I think about (inaudible at 00:24:43) treat someone with pain without having ever experienced excruciating pain. And I realize that’s not possible that every doctor could treat someone based on personal experiences that unless (crosstalk at 00:24:57). [00:25:00]

I don’t know. It (ph) makes me think of a book I read, maybe you’ve read it, called “Unquiet Mind.” About a psychiatrist, I guess, [who was] (ph) bipolar who basically studied her own disease. It’s so fascinating. How could you have a better doctor than that? I don’t know.

THERAPIST: Yeah. Well, I think it speaks to the level—the lack of, I think, empathy that you felt from a lot of the doctors. Because quite often what you’d come in feeling very frustrated by is feeling like you weren’t really being listened to. And people weren’t really listening to him and believing him or understanding what his pain was. Or paying attention, taking seriously his concern about a symptom that had popped up or something that he was feeling.

CLIENT: Mm-hmm.

THERAPIST: And wanting people to really get it. And what better way to get it than to have experience to something similar yourself? [00:26:03]

CLIENT: Mm-hmm.

THERAPIST: Mm-hmm. It’s a profound question people often ask you. How can you, if you’ve never experienced significant emotional pain, how can you possibly empathize or help somebody through theirs? If you haven’t experienced that kind of physical pain that he’s in, how can they really get it and take it seriously?

CLIENT: I guess that’s why people have support groups.

THERAPIST: Mmm. Yeah, because it’s a different perspective. I mean, I think practically, we can’t require every cardiologist to have had a cardiac –

CLIENT: (chuckles)

THERAPIST: disease, right? (chuckles) But there is something very healing about sitting with people who get it. So, support groups and things like that play a different role that can be really important in the process of healing and getting through something. [00:27:00]

CLIENT: It’s almost also a trust thing. I mean, this (inaudible at 00:27:06), the primary care doctor’s asking, because he was on the list of the doctors, and, I mean, Josh just went off on a spiel about how he ruined his life. (chuckles) I mean, that was such a blow to our—both of our trust in doctors.

THERAPIST: Mm-hmm. It makes it very scary to then place your trust in somebody else.

CLIENT: I mean, besides the fact that the lack of listening. I can’t imagine how hard it is to deal with a person who looks completely different than your next person. And the next person with all—with different symptoms pointing. I mean, I can’t—I’m sure that’s so hard. But this was such a huge—whatever it was. (chuckles)

THERAPIST: (crosstalk at 00:27:58) on a Pacemaker is a very—it’s a really big procedure and it’s not something that’s reversible. [00:28:05] It’s different than saying, “Let’s try all this medication for a couple weeks and see if it helps.”

CLIENT: Right. I mean, we had wrong doses of medicine listed. Or other things that I can just imagine how it would happen, but it doesn’t make me lose my complete trust in people. (chuckles)

THERAPIST: This was (ph) was a really big one. It’s hard to know exactly the what-ifs. What if it went differently? What if it hadn’t—you’re so unanswerable.

CLIENT: Yeah. I mean, I’ve been trying really hard not to have talk about what-ifs. (inaudible at 00:28:37) for. It’s really hard to suppress that desire to just wallow, I guess, in the what-ifs.

THERAPIST: Yeah. It’s hard to know what the right amount of time to give yourself to explore that and vent about it before it becomes wallowing. Because I do think there is use in you having a safe place to think about it without getting stuck in it. [00:29:03]

CLIENT: (chuckles) I mean, Josh (inaudible at 00:29:10) more of this stuff to my parents when they’re around than he does to me, which I think is probably because he doesn’t want to upset me too much.

THERAPIST: Mmm. And then who tells you about it? Your parents (crosstalk at 00:29:21) –

CLIENT: Well, I’m there. He just says it –

THERAPIST: So, he’ll say it in front of you, but to them.

CLIENT: Yeah. Yeah. Maybe he says more to them when I’m not there, but I’m usually there. (chuckles) He says wants me there when they’re there as a buffer. Then he’ll say more things to them.

THERAPIST: Mmm. That’s interesting.

CLIENT: Yeah. I don’t know. I mean, he won’t come sleep in the bed because he has to get up a million times and he’s afraid to keep me from sleeping. And luckily, we worked out something better for him on the couch, but he won’t—he’s so afraid of causing me –

THERAPIST: Where do you want him? [00:30:06] Would you prefer if he sleep with you? Or is the disruption . . .

CLIENT: I mean, no. I don’t. I’d be afraid of—I mean, I try to sleep next to him on the couch yesterday and bumped one of his pumps and (chuckles) hurt him, so, I mean, I can barely touch him without being super-careful. So, I wouldn’t want to accidentally roll on (inaudible at 00:30:29) (chuckles) or kick him, so—I also want to be comfortable. And not have to sleep on the couch for the next five months or whatever it is.

THERAPIST: Would it be possible to get a hospital bed or . . .

CLIENT: (sighs) I mean, we have some set up right now. My brought them over. He has wedges that he had had for his back pain, because he got himself kind of a hospital bed because my dad was in bad back pain. [00:31:01] And those seem to be working out. I mean, Josh couldn’t sleep in the hospital beds at the hospital, so . . .

THERAPIST: So, you don’t really replicate that.

CLIENT: Yeah. It’s so many awful things you never thought about. The hospital beds, I don’t know why people don’t fall or slide around in them but he would. And then, he’d give himself bedsores (ph), which is why he originally started sleeping in the chair at the hospital, not the bed. I don’t know. (sighs) (chuckles)

I mean, he’s really—point being that he was—instead of saying he would—he was afraid he would keep me from sleeping, he said that he didn’t want to ruin our relationship, so he’d rather not even try. (chuckles) So, [I don’t know] (ph).

THERAPIST: That’s quite a leap. So, how did he go from keeping you up because he gets up to ruining your relationship? [00:32:00]

CLIENT: Probably because we spend so much time—or, I spend so much time crying to him. Well, because we bought a really expensive bed, because he was (inaudible at 00:32:09) middle of the night. And (inaudible at 00:32:11) bed to (inaudible at 00:32:11) I’d wake up and I would freak out at him.

THERAPIST: So, transplanting one situation onto the next. So, getting up for very different reasons and its impact on you.

CLIENT: Well, he’s also really loud. I don’t think he could get out of the bedroom without making all kinds of noise. (chuckles) I don’t know. I probably could sleep through it, which is sad.

THERAPIST: Mmm. Well, I mean, he didn’t—you not having to judge it. It is what it is. Right? I mean, your sleep is pretty fragile. And really important.

CLIENT: I mean, the visiting (ph) nurse yesterday was asking him how he’s sleeping and where he was sleeping. And she seemed confused by the fact that he was sleeping on the couch. [00:33:00] (inaudible at 00:33:01) pretty bad. (chuckles) And it was like there were things she wanted to ask that she didn’t. [I don’t know] (ph). A visiting nurse is not [an easy] (ph) person to talk to. She’s a little like Josh’s mom.

THERAPIST: Ah, that’s tough.

CLIENT: And she makes things uncomfortable.

THERAPIST: How else does she make you uncomfortable?

CLIENT: (sighs) I don’t know. She just seemed, herself, seemed stressed.

THERAPIST: What would make it—what would make her more helpful to you? Is there something you could do or say that can make her—I mean, her role is supposed to be the help. How can she be useful?

CLIENT: I don’t know. (chuckles) She’s only going to be coming for another week, so . . .

THERAPIST: You don’t really want to invest much in it.

CLIENT: Yeah. I mean, (inaudible at 00:33:54) now. I don’t even know what they’re doing exactly anymore. (chuckles) [00:34:00] We don’t (inaudible at 00:34:01) anymore or (inaudible at 00:34:02).

I don’t know. We’re going to trade her in, I think, for a home PT, which I think will be really good. I think that’ll perk Josh up, to have someone push him to do exercises.

THERAPIST: Yeah. That might be. He’s so goal-oriented. It might be a good fit.

CLIENT: Yeah. And then, it’ll be someone to interact with who he has to do (inaudible at 00:34:32).

THERAPIST: Be cheerful for.

CLIENT: Yeah. Or just at least to be nicer to. Although he’s been very nice to me, still. (chuckles)

THERAPIST: Yeah. And I think for your part in it, thinking about, okay, so if you’re going to get a PT person, think about what it does for Josh. But also, what it can do for you. Giving you a break. Taking over some of the duties that you’ve been doing. [00:35:02] This is a team.

CLIENT: Yeah. And actually, I was thinking about that, because I spend so much time just helping him get things (crosstalk at 00:35:13) figure out how to set things up so I don’t have to (crosstalk at 00:35:16).

THERAPIST: Yeah. You can relax.

CLIENT: Because, I mean, even on the couch yesterday, I couldn’t be there for more than, I don’t know, however long before he needed (ph) something. Or he was stuck. Or something got tangled. Or I don’t know. (chuckles)

THERAPIST: Yeah. So having an eye—someone with experience to come in with an eye to, “How can things be set up in a way that’s more adaptive?” And, “Are there things that you can use or create so that he can be a little bit more self-sufficient?” OT is also really good for that. I don’t know if you’re able to get a referral for someone to come in and do occupational therapy.

CLIENT: Yeah. I mean, we had one at the hospital. She also gave us all kinds of little grabbers and things. What’s funny with the grabbers is they’re so big that you can’t keep them on you.

THERAPIST: (crosstalk at 00:35:58)

CLIENT: So, they’re constantly—I had to (inaudible at 00:36:01) the grabber from the grabber. [00:36:03] (chuckles) They’re never right where you need it to be.

Someone should make an expandable grabber thing. (chuckles)

THERAPIST: (chuckles) Just picturing Inspector Gadget. (chuckles)

And maybe that will be something that thinking about habits and getting into routines. So, when he gets up, the grabber goes with him. It needs to always be in his reach. (chuckles) But establishing routines or getting multiples of things so that you—so that both—for his sense of self-confidence, being a little bit more independent.

CLIENT: Mm-hmm.

THERAPIST: And then, you can sit down and actually relax, knowing that there may be some things, that looking at PT and OT that he can do for himself.

CLIENT: Yeah. (sighs) I mean, and a lot of it’s just (inaudible at 00:36:50) time, too. Because he doesn’t have the energy to get up and down and up and down and run around. So, now, it’s my energy.

THERAPIST: Mm-hmm. Which is limited. Right? It’s okay for you to have limits. [00:37:00]

CLIENT: Yes. And I’ve been trying. But it’s still, I mean, we still keep talking about the dogs and now I’m just at my energy limit.

THERAPIST: Yeah. You can’t take care of those other beings.

CLIENT: But it was really hard, seeing him with a puppy. So, he just got a bag of treats and then spent like 20 minutes just training a puppy, which was great. (chuckles)

THERAPIST: Can you have visits with your dogs, or is that more confusing to them?

CLIENT: They offered that. I think it’ll be the worst for him. I don’t think he could handle it. Josh couldn’t handle that. I mean, the puppy didn’t make him cry today, which is a good sign. (chuckles)

THERAPIST: Yeah. It might be hard to have the back and forth.

CLIENT: Yeah. Yeah. He wouldn’t be able to let them go and then be okay. I mean, he also I’m mean, I’m on my energy limit and I can’t pay the doctor, do all your drugs, do your dressing, and then take the dogs (inaudible at 00:38:04) and go to school. [00:38:06] (chuckles)

THERAPIST: Mm-hmm. Well, it’s too much.

CLIENT: And he said, “Well, I could rally for the dogs.” I was like, “Aren’t you at your—aren’t you exhausted?” He said, “Yes, but I could rally for the dogs.” And, I mean, it doesn’t seem like a good idea still. (crosstalk at 00:38:22)

THERAPIST: Yeah. Because it’s not for 20 minutes.

CLIENT: Right.

THERAPIST: If you had the dogs, he can’t rally all day long. It’s not good for him, either.

CLIENT: That’s true. I mean, yesterday, we were Googling—he was Googling (inaudible at 00:38:41), which is—I should’ve stopped it, but (chuckles) about how long people wait based on such-and-such a criteria. I don’t know. And then, every time you see a number that seems like it fits you, you picture how life can fit in with that number. [00:39:03]

(sighs) I don’t know what I’m trying to say exactly. (chuckles)

THERAPIST: When he does that, how does—is it motivating? Is it uplifting? Is it despairing?

CLIENT: I would say it’s generally despairing.

THERAPIST: So, that’s what you want to pay attention to. When you’re Googling or he’s Googling, pay—there’s no right or wrong. What you want it base it on is, “Is this helping you?” So, if generally, it makes you feel worse, then you don’t need to Google those kinds of things. If you feel like you’re getting good information and you feel more secure about meds, then, okay. But, really, looking at, “How is this impacting me? How is making him feel? How is it making you feel?” And that’s your guideline about whether or not it—you want to do it or not do it. [00:40:02]

CLIENT: So, it’s a good guideline. I was reading. There are lots of books written by people who had a heart transplant. And I was reading excerpts from them. And it (inaudible at 00:40:13) making me feel so sad, so I guess that’s a good guideline.

THERAPIST: Any information in and of itself is not evil or benign. If you’re getting information and it’s helping you feel better, great. If you’re getting information that’s making you feel like crap, what’s the—reading that other person’s story, reading those, is not actually changing Josh’s experience. So, if it’s making you feel badly . . .

CLIENT: Well, I don’t know how it’s making him feel. I mean, I don’t know if it’s a problem that a lot of things that help him do not help me. For example, he’s been watching tragic movies lately. He just watched “12 Years a Slave.”

THERAPIST: That’s a [tough one] (ph).

CLIENT: Oh, my gosh. But I couldn’t even listen to it. [00:41:00] I just want to read silly, happy things. (chuckles) And he was in tears by the end, because the guy gets everything he wanted after 12 years of suffering. And that gave him hope, I guess. And he felt so uplifted, I think. (chuckles)

THERAPIST: The same things don’t have to help you. And being able to say if reading those sorts or watching those sorts of inspirational stories is something that he can identify with and gives him hope, fabulous. But if you recognize that, “You know what? It’s too emotionally draining for you. It doesn’t put you in a good place.” Giving yourself permission to go, then, that’s when you go for your run.

CLIENT: (chuckles)

THERAPIST: Or you go in your bedroom, put earplugs in, and read a book that’s much more lighthearted. It’s okay for you to gain your strength and get what you need from different places. I think what’s important is recognizing what’s working for you and what’s working for him. [00:42:00] And giving yourself permission to opt out of things. I mean, you don’t [want to] (ph) deny him. If those sorts of movies or stories are really helping him, great. He doesn’t need to be denied that. But you don’t have to watch it next to him.

CLIENT: (chuckles)

THERAPIST: And you also don’t have to hear about it, either. If he wants to talk about that movie and process it, there are other people that have seen it. You don’t need to be the person that’s hearing about it if that’s hard for you.

CLIENT: Yeah. (sighs)

THERAPIST: That’s where taking care of you comes in as a really important piece, too.

CLIENT: I guess I’ve been thinking about this a little bit, because we’re pretty disconnected at the moment. I mean, I’m taking care of him, but the things that are helping him are not helping me. We’re doing, I’d say, different things to cope. I guess we don’t have much of a relationship at the moment.

And then, when my parents come over, he tells them I do (inaudible at 00:42:56) things. He’s not really telling me, I think because he’s afraid to or—I don’t know. [00:43:03]

THERAPIST: Do you want him to tell you those things directly?

CLIENT: Yeah. I mean, he sometimes does. He was being pretty quiet and seemed pretty down one day. And I forget what I did. If I was a little too forceful or something. And he started crying. And I said a couple of things to him—or, to me. I wish I could remember anything that was said. And then, we talked about it a little bit.

THERAPIST: How did you feel after talking about it?

CLIENT: Well, it was much better. I would much rather he cry and tell me things than just obviously be upset and tell anybody (chuckles) anything. But (sighs) I don’t know. I mean, sometimes, I don’t know if he trusts me, because of my basically year of falling apart. [00:44:00] Which I initially blamed him for. And now I don’t. I mean, he kind of saved us from that, but (inaudible at 00:44:10)—I don’t know. (inaudible at 00:44:13) want to ask him if he doesn’t trust me. If he’s brave to tell me things (inaudible at 00:44:18). I don’t know. (chuckles)

THERAPIST: Yeah. Ask him. I mean, I think so much is off-limits to you as a couple right now. I mean, like you said, you can barely touch him. There’s not any physical intimacy. You can’t go out and you’re not going on dates. But you’re having vastly different experiences in life. And the thing that’s going to bond you is having conversation and knowing—being able to empathize with each other about the experiences that you’re going through right now. And part of that is being able to talk to each other. For him to be able to be open and honest with you and you to be open and honest with him. So, when you’re in—when he’s in a fairly good place, when he’s not having major pain, being able to ask him questions and let him know that you do want to hear even the (inaudible at 00:45:09) stuff, then, ask him. [00:45:11] Is he not trusting you? And see if you can have some of those conversations that keep you connected.

CLIENT: (sighs) I wish I’d asked him about it the other night, when he was (inaudible at 00:45:27).

THERAPIST: There’s always time. There’s always time to have (inaudible at 00:45:31) conversation.

CLIENT: (chuckles)

THERAPIST: There’s no statute of limitations on when you’re allowed to broach a subject.

CLIENT: We used to talk about—we used to, for some reason, end up in really intense conversations in the car all the time. I don’t drive that car anymore. (chuckles)

THERAPIST: I think sometimes the slight distraction of being in a car, right, because there’s other stuff to look at. So, you can’t face each other. So, it takes away a little bit of that intimacy. [00:46:02]

CLIENT: Right. Exactly. Exactly.

THERAPIST: Makes it feel a little bit safer.

CLIENT: Or in bed or anywhere but where we [are now] (ph). (chuckles)

THERAPIST: The closest you may be able to get to that right now is putting something on TV that’s minimally distracting. So, like a light sitcom or like a home designing show that you don’t really need to follow the plot and be really invested in but can just be on as background noise. (chuckles)

CLIENT: Mm-hmm. That’s a good idea.

THERAPIST: And using the safety of something like that to be a background to (inaudible at 00:46:40) conversation. Or I don’t know if you guys can play cards or board games or something like that. That might be something . . .

CLIENT: Yeah. I tried to ask him to do that with me last night. I mean, just the logistics of him sitting upright at a table –

THERAPIST: Is too hard.

CLIENT: (inaudible at 00:46:59). [00:47:00] Yeah. I mean, right now, he’s got two positions that he can be in. Either standing or laying down carefully placed on these wedges.

THERAPIST: Words With Friends? Each on your own phone?

CLIENT: (inaudible at 00:47:13) (chuckles)

THERAPIST: It’s Scrabble.

CLIENT: It’s Scrabble?

THERAPIST: It’s basically Scrabble on your phone, but you can—you don’t have to be sitting up at a table with a board. So, it might be something that could –

CLIENT: (chuckles)

THERAPIST: access.

CLIENT: Sit next to each other and play on our phones together. Maybe.

THERAPIST: But with each other. (chuckles) Got to be flexible and creative about quality time right now.

CLIENT: Yeah. It’s hard when you’re stuck at home together to actually, then, make something into quality time.

THERAPIST: Yeah. It’s really challenging.

CLIENT: Especially when, after two days, I want to –

THERAPIST: Right. You’re going stir crazy.

CLIENT: go.

THERAPIST: Yeah. And that’s, I think, where it’s—I mean, and he’s probably going stir crazy, too. [00:48:00] But his physical capacity is actually really different, so if it—you’re having different experience of being cooped up and limited. You’re both limited, but it feels different because of why.

CLIENT: Yeah. I mean, I think he—it takes as much energy as it takes me to be really careful all the time, it takes him a lot of energy just to be—not to be calm, exactly, but to not freak out and rip all the tubes out of him.

(sighs) So, just like being is so exhausting.

THERAPIST: It’s really hard. Yeah. And you’re doing a really good job of trying to be sympathetic to it and understand his perspective.

CLIENT: Yeah. I mean, I don’t want to push things on him because I think they’re the right thing. Because there’s plenty of that going on otherwise. But then, that leaves nothing, so, I need to find some way.

THERAPIST: And you do. And you both want to find something, because you need—for when he’s better, you want to have a relationship to come back to. [00:49:06]

CLIENT: I mean, it’s almost like a long-distance relationship. It just stays on hold until it either falls apart or we end up back together. (chuckles) Five months will be a long time to have (inaudible at 00:49:18). (chuckles)

THERAPIST: Part of your challenge together is to find a way to stay connected so that there is a relationship to come back to.

CLIENT: It’s weird. I guess I didn’t really think about that. (inaudible at 00:49:29) that until (inaudible at 00:49:31) have that much of a relationship (inaudible at 00:49:35).

THERAPIST: Yeah, but you do clearly have a lot of love and caring for one another, which is what makes it worth trying to build a relationship. And take care of it.

CLIENT: I bet if I said that to him, though, he wouldn’t—he would feel (inaudible at 00:49:53) totally different was going on.

THERAPIST: That might be [a good] (ph) conversation to have.

CLIENT: (chuckles)

THERAPIST: In pieces. When you can.

CLIENT: Uh huh. [00:50:00]

THERAPIST: Why don’t we stop there for today?

CLIENT: Yeah.

THERAPIST: So, I know we scheduled and agreed upon whatever time was next. It was next Monday, right?

CLIENT: Right.

THERAPIST: Yeah. If we put it—we both put it in our book (ph).

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