TRANSCRIPT OF AUDIO FILE:

BEGIN TRANSCRIPT:

THERAPIST: Hi, come on in.

CLIENT: So Tanya was released again Friday a little unexpectedly. They did ECT treatments on Thursday and Friday, and so the result seems to have been that she is having a very hard time remembering anything recent and a lot of other things. (Pause) I've been doing most of the cooking for months now, so I've been trying to get her to help some. [0:00:59] Particularly when she volunteers to help, I just take her up on it. (inaudible at 0:01:05) we were making crepes with savory filling over the weekend. She's been making crepes since she was, like, 12. Couldn't remember how to do it. That's a very strange thing to be watching. I don't know how to make crepes, I've never done that. I can make pancakes. So I got out the recipe book, and she couldn't really follow the recipe either. Just... there was something about following a set of directions that just didn't work. (Pause) It was a rough weekend in that regard. It's... she seems more or less happy in the sense she doesn't seem sad, doesn't want to kill herself. [0:02:08] So those are good things, but it's also sort of like she's missing.

THERAPIST: She's missing?

CLIENT: Yeah, absent. (Pause) I think that's getting a little better. She was... she started trying to knit basically as soon as she got back from the hospital, which is good. She hasn't knitted in a while. But it's something that she really loves doing and has also been doing since she was young. [0:02:55] And at the beginning she couldn't figure out what she wanted to make out of this yarn that her step-mother sent her. And so she started knitting and then took it out three or four times. And then she's continued on just knitting away at it since then. So I think some of it has gotten better, some of the confusion in her mind has gone away, but not all of it.

She was supposed to do an intake at a partial program at Frederick for women trauma survivors or victims or whatever the right words is. She did that... today's...? She did it yesterday, and the... whoever was doing the intake... I think it was a woman because I think they're all women on that particular unit, did not want to admit her to that program because she could not articulate herself well enough, which is (pause)... [0:04:02] To put that in context, before they changed the scoring on the GRE exams, Tanya scored a 790 on the verbal section, which puts her at... well, I think getting into the 99th percentile, you have to do about 700. So she's almost off the measurable scale in terms of ability to communicate (pause) under normal circumstances. (Pause)

So Chad is concerned about this, which is (chuckling) reassuring because the... she also had right after that, what was supposed to be intake, she had ECT scheduled, and so they did the ECT. [0:05:02] The intake person called Chad and said I'm a little concerned about this. ECT is not supposed to have this effect or doesn't most of the time. This is a little bit unusual. And so I think Chad is also concerned, which is good because the people at the ECT ward seem wholly unconcerned. And I don't know if that's because they just don't notice the change or if this is normal enough for them or acceptable loss or what. So Chad was concerned enough that he, after meeting with Tanya yesterday afternoon, he asked me to come in with her this morning for her... during her appointment, so we talked a little bit, only to exchange notes on seeing the change in cognitive function and communication ability. [0:06:06] He was concerned that she's not able to think clearly either. I don't know whether that's true or not. (Pause)

Decisions confuse her (pause), which is probably impaired cognitive functioning. We were reading an evening prayer service. She was officiating, so she was doing the part where you pick which passages to read. [0:07:00] And so there are very clear instructions in the text to read this and then read this or this, read one of the following. And she, for most of them, when it said read one of the following, she would just read all the way down. (Pause)

THERAPIST: And the physicians who are administering this don't have any comments about this?

CLIENT: Well, so I have pretty strong feelings about a lot of things. One of the things I have strong feelings about is that the field of psychology has a problem that it doesn't want to talk about, which is that it relies very, very heavily on self-reporting. And so the ECT wing is a particularly bad projection of that problem, I think. [0:08:02] So they rely on Tanya to point out problems and to tell them when she's having memory loss and tell them how bad it is. But, if she can't remember how bad it is, then their self-reporting mechanisms are not good enough for their receipt (ph), whatever. Their interview techniques are not good enough to pick up on that, so I told them that the intake nurse or intake whatever had refused to admit her to this program. They said, oh, okay, we'll do some testing. They did some testing, they decided that everything was fine. (Pause) [0:08:49]

And then I, because of the way they're set up for infrastructure or whatever... they... (Pause) I only get to see the doctor if Tanya asks them for me to see the doctor basically? Or at least that's the way it seems to go. Don't know why that is, if it's all sorts of bureaucratic or just inefficiency reasons, it could be. So I actually have no idea what the doctor's comments are. But that's in a sense irrelevant because the doctor that was there this time is not the one that was normally treating her. The one who's been treating her is on vacation this week, so... (Pause)

Tomorrow afternoon we're meeting with her outpatient psychiatrist. I had contacted her I think on Friday. Yeah, on Friday when I found out that Tanya was getting out, to... (chuckling) because the social worker at Frederick couldn't get a hold of her, so she asked me to contact the psychiatrist. [0:10:05] So I did, and I just had a couple of other concerns. For example the medication that Tanya's been taking for the last... since she was hospitalized in November, maybe is not the most effective medication, given that we've had what is the worst period of the illness since she started taking it. I'm not sure there's any signal there, that it may all just be noise or the signal maybe... I'm not sure that the medicine is doing anything? But I'm not sure that if it were doing something small but positive we would be able to tell among everything else that's going on. So... but I wanted to suggest that maybe it wasn't the right thing without... (Pause)

And then I still have some concerns. I don't know if I've... I can't remember if I've mentioned them to you. [0:11:00] I have some concerns that Tanya's hypothyroidism is playing a role in all of this also. Again, I don't know that it's the... anywhere near our sole cause, but there's a small number of very simple tasks that haven't been done in the last two years that... to me, the interested observer, curious about why they haven't been done and whether they would be... whether it's just oversight from a large number of doctors who are not specialists in endocrinology, not doing it or whether it's something else. So she asked... she said, well, why don't you just come with Tanya next time she's (ph) scheduled? So we were supposed to have that meeting Monday, but then she got the flu. [0:11:50] So we're having that meeting Thursday, which is all a long way, I think, of saying that, I think the problem will be taken care of in the sense that I think that some (pause) change in the treatment will happen? The ECT treatment. But it's been a... (Pause) It's been a week.

THERAPIST: And a rough one at that. Well, it sounds like you feel very frustrated, at time infuriated, like, at these ECT docs who don't seem to get that someone with memory loss is not the best, most reliable self-reporter, and that confusion of where to turn. And you're very much trying to reach out and figure out who might have the expertise to inform at least some of what's going on for Tanya. But it's confusing and frustrating. [0:13:07] (Pause)

CLIENT: Yeah, that's right. That's right. (Pause) Yeah. (Pause) [0:14:00] Yeah, I don't... I'm not sure what else to say other than, yeah, it's confusing and frustrating. I don't know how confused I am about what to do. I guess I'm confused about what my role ought to be in all of this. And it's (sighing)... I think you've noticed that I have this problem, that maybe I'm not very patient with waiting for other people to do things. I feel like I need to do them when I don't see them being done in the way I think is correct or something. So I... (Pause) [0:15:01] One of my personal struggles over the last, I don't know, decade has been to have some humility that other people can have expertise in things and actually know what they're doing. It's a challenging one in the face of a large amount of incompetence also, so it's... so I'm trying to find the right place. How do I make sure that Tanya's taken care of? And I can't do it all myself. That's actually not possible. In terms of... if ECT's the right treatment, I mean, I could figure out how to put together an ECT device, but it's a really inefficient way of handling the problem. [0:15:53] So we should probably just go to a facility that has the right (pause) instruments, anesthesia, doctors, and so forth. (Pause)

THERAPIST: Is this about trusting the people in charge to do the roles they're supposed to be doing? (Pause) [0:17:00]

CLIENT: I think yes. I think part of it is yes, and part of it is not clear who is in charge of something. So who is managing Tanya's care at this moment? The answer was pretty clear for a long time. Chad was definitely managing Tanya's care. Dr. Vaughn (sp?) was managing Tanya's medications. They maybe weren't communicating that much, but there was a sort of sense that they were working in separate but converging paths, or something like that. So that was fine, but the repeated hospitalizations have really shaken that up. She's not seeing Chad frequently, she's not seeing Dr. Vaughn frequently. There's kind of a... (Pause) We've thrown ECT doctors into the mix. [0:17:57] And yeah, I don't know that I trust them, you know, the ECT doctor or... there's a whole staff, but it's just one treating psychiatrist that seems to be handling it. And I don't know that I trust him. (Pause) I don't know that I have any reason to. There's... I really look at trust in two different ways. There's the way in which I place trust in people and to... like, I feel like people ought to be given trust. But I also (chuckling) feel like trust is a thing that... it's an empirical thing. If you trust something and it fails, that should tell you... that should inform your next decision to trust that same thing. [0:18:59] (Pause)

I think I never place trust in bureaucracy or as very infrequently as possible because (chuckling) I have no empirical reason to trust that it works and a lot of empirical reason to trust that its sole purpose is to obfuscate and prevent anything useful from happening. And so there's a sense in which I think the ECT center is set up, and the doctor has seen Tanya a bunch of times, but I don't think he knows Tanya. [0:20:02] It's much like the treating psychiatrist on the short-term unit at Frederick has seen Tanya a number of times but in five or ten minute doses when she's at her worst. And that is not at all a representative sample. It's... if I were to show my statistician friend a similar sampling set used to make decisions, he would say that any inferences drawn are totally meaningless because there's no random sampling if it's (chuckling) from a very small, selected pool.

It's... anyway, I feel like Chad has a relationship with Tanya and understands who she is. [0:21:00] And I feel to a large extent the same way about Dr. Vaughn. They have less of a relationship, but I still think Dr. Vaughn both has a very clear sense of who Tanya is and is very interested in taking care of her as a person. And so it's a lot easier to trust both of them. I feel like they have both professed and demonstrated a care for Tanya? And in a sense, by it being their jobs, that should mean something, but (chuckling) this is America, and there are a whole lot of people who are really bad at their jobs. So I guess I don't... yeah, I guess I don't put too much trust in monetary exchange as motivating factor for (pause) care. [0:22:07]

THERAPIST: What has it been like to have her home? (Pause)

CLIENT: It's been hard. She's there but has nearly no desires. [0:22:57] And so it's really hard to engage with her in any way? She can't really carry on a conversation. And so I can sit there and question her, but that's not really a... at some point she just gets anxious at getting a whole lot of questions that she can't answer. So that's (chuckling) really not a helpful way to interact with her. And so mostly I've been letting her read and knit, and I've been reading myself. It's a sort of way of trying to take care of myself and deal with my own turmoil over (chuckling) her condition.

THERAPIST: Maybe we should talk more about that turmoil. [0:23:58] (Pause)

CLIENT: Well, I'm frustrated. It's very frustrating to try to talk to her and not... and to feel like she's having thoughts and opinions but either can't or won't articulate them? I think at this point it's can't, but it wasn't clear for a little while whether she just didn't want to say it or whether she really, really couldn't. And so she would start to talk, and she would get, like, 70% of the sentence out, stating some sort of opinion and then trail off and look away and then kind of look back and... sometimes she'd just smile as if we were just sitting there. [0:25:10] And then I would repeat what she'd back to her, and then she'd kind of shake her head. There were a couple of times she'd kind of have a conversation with... it seemed like with herself? So I would hear, like, pieces of what sounded like two different opinions, and then she'd look at me as if she had made some whole statement. So it's confusing. It's hard to figure out what is going on. It's concerning. I'm very worried about her.

THERAPIST: Does Chad have ideas of what the next step is, in terms of just evaluating what's going on with her?

CLIENT: He wants to talk to the ECT psychiatrist and say, whoa, where are we? [0:25:55] So I think that's his plan of... the next step is to say, well, is this normal, and what happens in this circumstance? Because it's not a technique he's very familiar with, which is fine. (Pause) I don't know if he has a clear step beyond that, but that seems like a good first step.

THERAPIST: In a neuropsych eval, all of that would just give you sort of a snapshot of what her functioning is right now. I'm not sure if that would point to treatment, per se.

CLIENT: Okay. I don't know what that is.

THERAPIST: Yeah. And again I'm sort of always hesitant to bring this up. It's not... her treatment is not my business in a sense. Neuropsych evals, they're done under various conditions. And they're really good at just testing someone's functioning and sort of pinpointing what areas of functioning are not working, for, like... when someone has... or thinks that they have ADD or parents think their child has ADD, some of them are just anxious. [0:27:03] But you can actually pinpoint what's an attention problem, what's a concentration problem, you can sort of pinpoint these things. And a more thorough neuropsych eval will try to understand memory problems and the point at which... what type of memory problem it is. And sort of... really, it's this very subtle, nuanced assessment of someone's functioning. Of course that doesn't... again, okay then, what do you do about it? But sometimes it's very helpful to just appreciate all the... you probably appreciate it just by living with her, the things she does.

CLIENT: Maybe, but not in clinical terms, so...

THERAPIST: Yeah. So that... you know, I don't know. Again, this is also a situation I am not familiar with, so I have no expertise on it. But it sounds like Chad...

CLIENT: That's all right. Do you know what that sort of eval looks like?

THERAPIST: Like, in terms of...?

CLIENT: Like, is it a questionnaire, or is it a...?

THERAPIST: Oh, no. Well, that's why it's also... because when you're talking about self-report, you know, when you get a thorough psych eval, whether it be for emotional, personality, neuropsych... usually neuropsych incorporates all of those... self-report is, like... they don't rely on self-report for the reason that you say, especially when there's a memory component. [0:28:11] And so it's a battery of various tests that have been sort of validated across all sorts of dimensions...

CLIENT: Absolutely.

THERAPIST: So it's just a variety of tests. The WAIS is a standard intelligence test where you're asked about... where you look at your performance IQ and your verbal IQ and just sort of really understanding how your body works. So it's a series of various... it could be putting these patterns together, it could be all sorts of different sorts of things.

CLIENT: Okay. So actual manipulative tests, and...

THERAPIST: Yeah, putting patterns together, understanding how people think, trying to manipulate numbers in one's head to see how long that manipulation takes. There's a lot of tasks in a sense that make up... you know, a really comprehensive neuropsych eval could take eight to ten hours kind of thing. [0:29:05] It's very, very extensive. So...

CLIENT: I see, okay. That's very helpful, thanks.

THERAPIST: It's used for all sorts of things. Someone has dementia, is this vascular dementia, or Alzheimer's? Things like that, they're great at that, great at assessment, whereas you can't really when you go into a neurologist's office because it relies on self-report so much or some sort of MRI which it might not show up on. So it's very good for sort of assessing someone's... the nuance of someone's functioning.

CLIENT: Okay.

THERAPIST: I don't know if that's something Chad would think about. I really believe he's... it sounds like he knows what he's doing, he's on top of it.

CLIENT: Sure, but he's also out of his area of expertise, so...

THERAPIST: As am I. Certainly as am I. And I'm...

CLIENT: It's... more ideas are helpful is all there (ph).

THERAPIST: Yeah. I hear you. So that's my practical thought, but again I also want to just very much attend to your experience about this whole matter. [0:30:03]

CLIENT: We had this conversation, Tanya and I... (Pause) I asked if she wanted to make scones. So she said, yeah, that sounds like a good thing. Do you want to help? And she said, yeah. And so I said, do you want to cut up the chocolate to put in the scones? It was chocolate chips, or do you want to stir the ingredients? And she said, I want to do the or (ph). She wanted to stir the ingredients. (Pause) So I got out the recipe, and I kind of pointed to it. And she really was not sure what to do, and... (Pause) [0:30:57] It was almost a positive experience in the sense of... (chuckling) so I showed her how to... showed her where the ingredients were, and you need to measure this much of this one in now. It was almost like training people to do biomechanics again, which I had done a few times, training graduate students. That part of it was... it was pleasant in the sense that I felt like I knew where I was. It's really disconcerting in the sense of... she taught me how to make scones, like, six months ago (chuckling). I just (sighing)... (Pause) [0:31:58]

So we baked the scones, and [she was] (ph) sitting there looking at one a plate in front of her and not eating it. And so I asked her if the scone was okay, and she said she... and I'm not exactly sure what she said that led to the line of question that followed. But I ended up asking her if eating it was a sad thing. And she said, no, eating is happy. Very quickly and very certainly. So why can't you eat the scone? She says, well, I'm not... I'm sad. So if you're sad you can't eat? She says, yes, that's right. And so I ate my scone, so I must be happy? She says, yeah, of course. [0:32:56] So there... (Pause) And so I'm in the situation where, it's a very amusing thing on one level, right? It's like you... I'm just kind of curious, and so I press a little more to see if there were any other things that were happy. She said no, just eating. Only eating is happy. And it's the only thing where this rule applies, where if you're sad you can't do it.

So it's just... there's the curiosity, and there's the sort of amusement at this just, in a sense, very strange observation about the world or feeling about the world. And there's also the (pause), what does this even mean? [0:33:58] (Pause) She's been eating less recently. Is this an indication of something that she actually believes on some level and is related to her eating less? Is this...? But that's sort of back in the curiosity line of things.

THERAPIST: You don't know what's happening to her.

CLIENT: No, no, not at all. I mean, I know exactly what's happening in a sense, right? They're electrocuting her until she goes into a seizure, and then they do it enough times, and now she can't remember who she is on some level. But no, I have no idea what's happening to her. (Pause) [0:35:00] I feel like she's lost, and I don't know where she is, and I can't help her find her way. (Pause)

THERAPIST: Lost meaning the person in front of you isn't her?

CLIENT: That she's buried somewhere inside the person in front of me? (Pause) Or... yeah, something like that. I... or just gone, just changed starkly. It's not really clear if that's what's happened. I don't think it is at this point. [0:36:01]

THERAPIST: Do you worry about the implications of your future together? Or is that not something on your mind right now?

CLIENT: I... that really hasn't... that really hasn't... I've felt... so the story they tell in the ECT is that all the memory loss is short-term. So you may never remember the things that happened during the ECT, but you'll go back to being able to remember things and... former (ph) memories, so you can go back to remembering most or all of your past. And so there's this sense in which it has seemed short-term, and so there's... I'm not really worrying too much about where the future is, although I'm starting now because now we're in a... this is more severe than they talked about as being a real possibility. And I didn't believe them fully when they said that it was always, or almost always minor. [0:37:00] I've seen that sort of language enough to know that that's a... that's not true, so... But [I know] (ph) we're outside of the normal [borderline entirely] (ph) but where normal is. But I don't really believe that. It's just a possibility on the radar.

And so, if she's not responding normally to the treatment, then what does that mean about where she'll be in two weeks or a year? (Pause) But I haven't thought very much about that until maybe today. So mostly it's... mostly my experience has been one of confusion and not really being sure of what to do or (chuckling) what's really going on with her. [0:38:04] (Pause) I have been concerned about our future in the sense of, how will she get a job any time in the near future if this takes any reasonable amount of time to fade? She could not go to a job interview today. Not that that's what we should be doing today, just that... (Pause) [Yeah, but I've thought about that] (ph).

THERAPIST: So... I'm sorry.

CLIENT: Sorry. The... just the hope is to get her back into real life or whatever that is. And so it's just like we've gone another step away from that by getting to where we are right now. [0:39:00] I'm not sure that's an accurate view of it, it's just what we may be... if this is real life, we may just be moving on some arc and staying the same distance, but it looks like we're in a different place, so...

THERAPIST: Do you feel like you're in real life?

CLIENT: (Exhaling, chuckling) That's a good question. (Pause) Sometimes. (Pause) I didn't get anything done over the weekend, but I worked most of yesterday because there was a fairly clear schedule to where she needed to be. And I can... I want to be working, and so I worked in between the appointments that she had set up. [0:39:57] And then afterwards, in the evening... you know, she can't really communicate anyway, she just... she doesn't seem unhappy, she's just reading and knitting. In a sense I can work just fine then, but I'm not sure that means I'm in the real world. But I'm at least a little bit engaged in the things that I'm supposed to be doing.

THERAPIST: What part of it doesn't feel like the real world? (Pause)

CLIENT: There's no real sense of normalcy? She is so far outside of (pause) what might be considered a normal daily life that, just by virtue of being with her and taking care of her and caring about her, I'm not really in the real world either. [0:41:08] There's also a sense in which, if everything were okay, (chuckling) I wouldn't be in Andover. So there's a sort of sense in which... so I go to... we had a group meeting Monday evening, so I skyped in basically. This... I'm a mechanic, and I'm supposed to make things. That's not really what I'm doing, so that's not a fair description. But it's sort of an attempt to tell you how it doesn't feel like the real world.

THERAPIST: If you could, would you want to go back for a month or so? Would that be helpful for you emotionally and just professionally? [0:42:01] (Pause)

CLIENT: I really appreciate that question. I hadn't thought about it at all. There's a sense in which the logistics of doing it would just swamp it entirely? But (pause) yeah, I'm not sure. The problem is that I'm not sure a month would be the right time period, so, if I could go back for six months, then I could do enough in some sense to be done, to finish there and close out that chapter of existence. [0:43:07]

THERAPIST: Would (ph) you take Tanya with you?

CLIENT: Maybe right now, but again the logistics get really complicated. But yeah, no, it's...

THERAPIST: I think... I'm sorry.

CLIENT: Go ahead, no.

THERAPIST: I think what I'm trying... I don't want to make specific recommendations about what you should do, but I think this is really a continuation of our conversation from the last week in terms of your trying to create normalcy in your life in the context of this dramatic change and abnormality (chuckling), for lack of a better term. So, you know, sort of, what else do you have in your life besides Tanya, who's this incredibly important part of your life? But you have other facets of your life, too, for sure. And how can they be a source of comfort, normalcy, structure, aspiration? How can that be created? [0:44:01] I think it can be, and so that's why I'm sort of bandying about, well, what could you do in this context so this doesn't feel like it's your entire world? (Pause) And maybe also in the vein of not having your needs completely subsumed in Tanya's care. (Pause) I realize... I'm going to... it's a lot to leave you on. I'm going to need to leave you with that to think about...

CLIENT: (Chuckling) That's fine.

THERAPIST: And for us maybe to return to.

CLIENT: Okay.

THERAPIST: Okay? I look forward to seeing you next week, okay?

CLIENT: Thank you.

THERAPIST: Take care.

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