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Out of Phase

130902-eyehandcoordination-500My partner saw her GP two Tuesdays ago. I haven’t finished transcribing the appointment, but here’s part of it:

GP: And then we have doctor — oh, Dr. [gastroenterologist] sent me an endoscopy, right.
Ejourneys: Mm hm.
GP: All right. He said there was some things not emptying properly.
Ejourneys: He thought that it might be gastroparesis.
GP: But you did the [inaudible] study?
Partner: No.
Ejourneys: Just the endoscopy.
Partner: He put the camera down and –
GP: I got that report.
Partner: Yeah.
GP: He thought you may have gastroparesis. That’s what he said. He thought that you might not be emptying your stomach properly.
Partner: What would be the symptoms?
GP: Like, six hours after you eat, if you still feel like very full, like as though you just ate –
Partner: No. Six hours I probably will have eaten at the four-hour mark.
GP: Ah. So then you’re okay.
Partner: Um, the look on the stomach made me think that it was stomach stapling.
GP: You had it done before, right?
Ejourneys: Not an endoscopy.
Partner: I –
GP: No, she’s talking of her stomach stapling?
Partner: Yes, the way the stomach looked. It was not like any of the stomach pictures I saw on the Web.
Ejourneys: It’s [my partner's] interpretation of the photos.
GP: Oh. Please forget about it. [laughs] [Partner], you’re a very difficult patient to [treat?]. I don’t know if you want to find another physician, because I don’t see eye to eye with you. Because you do your own management. Then either you should manage your own or come to me. It’s very difficult for us to go when you keep on doing manipulations in-between. Either you manage your health yourself, don’t go to a doctor, or let the doctor take care of you. We don’t have an MD degree for nothing.
Partner: I understand –
GP: I know that. You can read, but you manipulate your own medicines and stuff and that’s no good. That’s how your thyroid got messed up in the first place. You didn’t do what I told you to do. You cut it in half. You were supposed to take one and you decided you had to cut it in half. And then you went too low, and then you decided to take four times the dose –
Partner: No, that’s not true.
[both speak at once] GP: You were taking half and then you were taking two of them at one point. And then you went down to one. Thyroid, that’s what you told me. I prescribed the one, you were taking half, and then you went too low. Then you started doubling up on the pill, which was 0.1 milligrams.
Partner: I think there is an inaccurate record here.
GP: Anyway, what you did was wrong. You shouldn’t have manipulated the medicine on your own. Okay? You should listen to the doctors.
Partner: The reason I think I did anything at all is because I read in the Physician’s Desk Reference book version that I have, is that, uh, Synthroid can cause hypo-thyroid.
GP: [Partner], I’ve been in practice for 30 years, okay? I have yet to see one person get hypothyroidism from Synthroid, okay?
Partner: It was in print, so I thought maybe it’s true.
GP: Well, then, you need to manage your own health. That’s what I’m trying to tell you.
Partner: Okay, so I have this in print. It’s supposed to be for other people. I didn’t know.
GP: I’ve gone to medical school. I’ve gone through residency. Nobody taught me that thyroid [sic] causes hypothyroidism. Then why would we give it as a treatment for hypothyroidism if it causes hypothyroidism, right? It doesn’t make sense.
Partner: No, it didn’t –
GP: Right.
Partner: Unless it had to do –
GP: So what you are reading is rubbish. Where you are reading it, I don’t know, but it’s not correct.
Partner: The Physician’s Desk Reference, thick book –
GP: The PDR does not say hypothyroidism is caused by thyroid hormone replacement –
Partner: I’ll bring it in next time and you can see it –
GP: I have several copies of PDR.
Partner: Okay, let’s go read it there.
GP: I don’t have time. You can manage your own health.
Partner: Okay, here’s — here’s one thing. It’s this about, um, it seems that the — the aging studies –
GP: Mm hm.
Partner: Um –
GP: So what’s your ideal weight, according to this?
Partner: It’s higher for older people is what I am getting from these.
GP: [inaudible] Yeah.
Partner: And so this is why I would be accepting the weight gain and not fighting it off and eating small amounts.
GP: Yeah, you are how tall? Five-four or five-five?
Partner: Five-four.
GP: Yeah. So far 135 is okay.
Partner: I had been five-four and a half, rounding up, but I accept that it’s five-four now.
[GP takes BP] GP: One-ten over 72.
Partner: Not bad for when there was just shouting in the room.

I felt bad for the GP (who seems harried even without the likes of my partner), but it was all I could do to keep from laughing out loud. This is the kind of stuff I deal with every single day, through much of our waking hours.

I used to get bent out of shape just as the GP did. Now I’m like, Whatever. The GP did use a bit of hyperbole — to my knowledge, my partner never took four times her prescribed dose of Synthroid. But she did and does monkey around with her dosages. It can drive a doctor crazy. I’ve become laissez-faire to preserve my own sanity. (A friend suggested that maybe the doctor meant four times the halved dose. But still.)

After the appointment, my partner told me she was very proud of herself for standing up to the doctor. She further postulated that the doctors all put her in a position to fight back as part of a collective effort on their parts to teach her to stand up for herself. o_O

The following day my partner had her intake at the county mental health clinic. I secretly gathered her therapy and neurological records ahead of time because my partner would be upset if she knew I’d done it. She has rebuttals to what everyone has said. I turned the records in while my partner was in another room, filling out her forms along with other people. The session, just for form-filling, went from 5-7 p.m. Even with my help at the end, my partner needed until 7:30 p.m. Other than staff, we were the last people to leave.

I don’t know what if anything can be accomplished with Therapist #4, since #1 through #3 had written of their own frustrations. To wit:

“[Partner] again became defensive and spent much of the time making excuses, going off topic under evaluation and requiring cuing to focus her responses. I reviewed all the assertive communication lessons given, which she stated that she did not recall….When I again questioned the issue of sanitary conditions in the home [partner] was able to evade the issue by launching into a discourse on another topic about her physical issues. When pressed to address the issues under discussion, [partner] could not give a clear yes or no answer, even to the simplest inquiry. I notified both ladies that I would be…leaving the agency….Client wants to continue therapy. She will need to be transferred to a better therapist than this writer, as I have felt frustrated in my inability to help [partner].” — Therapist #1

“[Partner] needed constant redirection and feedback, as she was unable to stay on topic, becoming tangential and at times “gently” argumentative. When feedback is given, she has to work very hard to listen to it without building her own rebuttal at the same time. She also tries to write everything down so that she has ‘facts’ that she can use to argue against what is being said or asked….Multiple interventions during session to keep [partner] on task, to clarify the communications given and received between them, and to clarify again that the best therapeutic fit for [partner] at this point is the Clubhouse.” — Therapist #2

“Patient is very resistant to any type of change and suggestions….The clutter in her home and the continual obsessions are not lending any quality of life for either person in this relationship. I am willing to continue to listen but am not able to make any significant impact toward recovery. The treatment plan for symptom relief, goal setting, baby steps towards more social interaction and independence was not effective. Only supportive therapy was possible with this Patient.” — Therapist #3

My partner is going back into treatment so that she can be allowed into the Clubhouse, which she believes can get her a job lickety-split. She has fought against going to the Clubhouse until recently. I take a wait-and-see-attitude. We were told at the clinic that, having filled out her paperwork, my partner can now go to the Clubhouse at any time and does not have to wait for her therapy assessment appointment next month. As of this writing, my partner has chosen to wait. Her prior gung-ho attitude seems to have evaporated.

I am not surprised.

The mental health clinic is the only mental health facility we have in this county; the next closest one is about 30 miles away. Of the three therapists my partner has seen down here, the first two had worked at the clinic (and are no longer there) and the third had been a private therapist of my partner’s own choosing. Therapist #3 left the practice after treating my partner for about a year.

I included the following memo with the package of records that I turned in at the clinic:

—– memo start —–

Attached are the following:

1. [Partner's] Power of Attorney, which I hold for her. Please note that I am NOT her legal guardian.

2. Office notes dated February 11, 2013, by [partner's neurologist], detailing her condition including her cognitive dysfunction from multiple sclerosis. Please note item (1) under [neuro's] impression: “Presumed primary progressive MS dating back to the 1980s. At some point there was a psychiatric disturbance considered but I am not certain whether this is primary or secondary, i.e., coexisting, but she certainly has enough white matter disease to be consistent with an organic schizophrenic issue.”

3. Letter dated December 22, 2011, to [neuro] from [cognitive neurologist], who confirmed [partner's] diagnosis of multiple sclerosis. Please note [cognitive neuro's] impression on page 4: “My impression is that [partner's] entire history and current presentation are almost certainly entirely related to multiple sclerosis. MRIs currently show very extensive white matter pathology in a pattern strongly suggestive of multiple sclerosis, most particularly by virtue of extensive involvement of the corpus callosum. The findings from CSF analysis lend further support to a diagnosis of multiple sclerosis. There is sufficient involvement of orbitofrontal white matter to account for the ‘psychiatric’ features of this illness and [partner's] current interpersonal behavior as well as her problems in managing her affairs and the evidence of impaired judgment.”

Please take these neurological observations into account when assessing [partner] and formulating your treatment plan.

4. Treatment notes from [Therapist #3], dated July 18, 2012.

The following documents predate [partner's] MS diagnosis and are also in the [mental health clinic] archives:

5. Neuropsychological consult and testing report from [neuropsych testing center], dated May 10, 2011 (this document was also submitted to [Therapist #2 at the clinic]).

6. [Therapist #2's] intake evaluation (Jan. 26, 2011) and office notes at [the clinic] during 2011.

7. [Therapist #1's] intake evaluation (April 20, 2009) and office notes at [the clinic] during 2009 and 2010.

Please let me know if you have any questions. Thank you.

—– memo end —–

After hearing that the clinic had a six-month backlog in processing its archives, I decided to give them copies of what they are supposed to have anyway, just to be sure.

I handed the package to the medical records staff member, whom I had contacted earlier with a question of my own. I had received therapy at the clinic from 2009 through most of 2011 when, like my partner, I had been maxed out. When I got my own records from the clinic I received only those from 2009 and 2010. I had been trying, on and off for over a year, to get my records from 2011. During that time, there had been at least two incidents of turnover among the records staff, plus the clinic’s reorganization.

Finally, the staff member I saw had an answer for me: my therapist (who also no longer works at the clinic) had never written anything up from our sessions that year. All the clinic had on record were the dates that I had been seen in 2011.

Between that and various other incidents, I’ll just say that I am not impressed by this place. That said, it is the only mental health facility we have in the county, and it also runs the Clubhouse.

I know the name of the person my partner will see in October, so I plan to call ahead of time to see if that person has indeed received the package I handed in.

The other day my partner told me that she objected to my writing “self-diagnosed” on her medical history, for those conditions she claims she has but that a doctor hasn’t confirmed. When we put her medical history file together, she insisted that I include those conditions.

I guess that means I’ll have to start keeping two files — one that I show her and one that actually goes to the doctors.

Next week she sees the podiatrist because she wants to “uncurl” her pinky toes, now that she feels she is “standing up straighter” due to her weight gain. She also thinks her toes are webbed. (They aren’t, from what I can see.)

During Wednesday’s Hot Topics show, “Must We Suffer?”, @Denise followed up a discussion with Jane (@jbones1961) and me about witnessing the suffering in ourselves and in our carees.

Denise said, “The word that came out for me when you both were talking was a sense of….helplessness. And I’m wondering if there is a sense of helplessness sometimes. Ejourneys, what do you think?”

I didn’t have to pause on that one at all. I said, “All the time,” and added that I had to surrender to that sense of helplessness in order to cope.

Is my partner treatable at all? I honestly don’t know. She fights the doctors, and the therapists, and me. She dismisses her actual disorders and obsesses over phantom disorders. She objects when I do my best to communicate with healthcare practitioners. More times than not I find myself sneaking around behind her back in an effort to educate them as to what’s really going on, hoping my message will get through.

I keep reminding myself that this is all part of her disorder. She is as helpless against it as I often feel I am against her. Helpless enough so that I am careful about what I say on the show — since I am at home and more times than not my partner is on the other side of the door, listening to my end of the conversation.

That’s another reason this blog is a sanity-saver for me. My partner hasn’t come here yet. She is more focused on gathering evidence for her “theories.”

Sometimes, the best thing I can do is just give her a hug and keep my mouth shut.

About ejourneys

Avatar of ejourneys
Ejourneys cares for her partner, who has MS that acts like traumatic brain injury.  Author of Caregiving in Five Lines (all proceeds from sales benefit Caregiving.com) and contributor to several CareGifters anthologies, ejourneys is a panelist on Your Caregiving Journey's "Hot Topics" show.  She manages the groups Gay, Lesbian, Bisexual, and Transgendered Caregivers; MS Caregivers; and Caregivers Create; and is a co-founder of VRide.

9 comments

  1. Avatar of Casandra

    I am sure that physicians get very frustrated by the fact that some patients think they know everything based on reading something they don’t quite understand. It has to be quite frustrating for you, as well, to have to constantly try to convince her otherwise when she thinks things have happened to her that have clearly never happened. I have much respect for you and how you deal with your partner. She’s very lucky to have you because I think the situation you’re in would be very difficult for most people. You do so much and handle everything so well. Kudos to you for everything you continue to do!

  2. Avatar of Pegi

    Ej, I get frustrated just reading the exchange between GP and your Partner. I can’t even imagine being in your shoes. You care, you advocate and you love with such gentleness and grace. I think the expression “the patience of a Saint” may have been written specifically for you. I am so glad that you have this safe place and share so easily with us. There is much to be learned from you and these encounters.

  3. Avatar of EllysGdaughter

    Ej, I totally expected the GP to walk out due to your partner’s self diagnosing! I have told my Grandma the same thing, if you don’t want to take your pills, fine, then we don’t go see the doctor who prescribed them for you especially if you know better! It would seem that he could definitely give the disability diagnosis just to be done with it all! I see that the role helplessness can play as a positive effect in your lives, this is so you can go on each day!

  4. Avatar of Trish

    Ejourneys, My heart goes out to you and I am so happy you have this site too. You need to have something that is just yours, where people love and support you. We do – in spades!! I feel for your partner as well and can understand the frustration of the doctor (somewhat – he/she actually irritated me by throwing “medical school” around more than once). Anyway, please let me know what I can do for you. You are always there for me and Richard and I just want you to know we are there for you too. <3 & hugs.

  5. Avatar of ejourneys

    Thanks, @comicvixen, @worriedwife, @ccforsure, and @Trish! I feel the love. :D
    This place truly is a haven for me, and you are all a big, big part of that.
    <3 (((Hugs))) xoxo and much, much gratitude!

  6. Avatar of Kathy

    EJ,

    I got upset just reading the conversation between partner and Dr. I realize the frustration level the Dr could have had but my goodness, isn’t Dr the one trained to deal with matters like this? I suppose we are all entitled to a bad day but sheesh!
    On the other hand the emotional strength you have living with this every day just amazes me.
    My thought keeps going back to what was said by one of the therapists above
    “Patient is very resistant to any type of change and suggestions….The clutter in her home and the continual obsessions are not lending any quality of life for either person in this relationship.”
    I wonder how you feel about that comment.
    If I understand, and correct me if I’m wrong please, this health issue will be a progressively worsening issue yet she could live for many more years. Did you take steps towards self care after reading that and do you feel like you have enough “EJ space and time” to offer you a better quality of life?
    Sometimes in my situation I think, will I even notice if I’m having trouble? I’m in so deep that everything just feels like a way of life to me, but what kind of life is it? I’m grateful, as you are, to have support from here, I always know I can get honest feedback and I’ve been encouraged to think outside the box too.
    Just know I’m thinking of you and praying daily.

    {{{HUGS}}}

    • Avatar of ejourneys

      Thanks, @Kathy — Yep, this is the elephant in the room for me. Except that there’s no room for the elephant for all the clutter. ;-)

      I do expect things to worsen, with the potential to last for many more years. I try to figure out how to best cope with that. So far, I’ve sprung into action (i.e., forced the issue) when I perceive a safety risk, as with the cooking coil last winter. That in itself was a case in point, because I got absolutely no help from the “official” services I approached, but from our MS support group and from here.

      Every action (or inaction) has its consequences. Thus far, the stress on both of us has been much less when I’ve dealt with the occasional Big Event, rather than tried to maintain some order with numerous small events. Mind you, I still get fallout from the Big Event when I did major cleaning several years ago, while my partner was hospitalized (i.e., when she couldn’t try to physically stop me). But I have what passes for rests in-between. Trying to maintain with small events gets me no rest and constant push-back, which puts both of us under even greater stress, which in turn makes my partner even more impulsive and potentially dangerous.

      Self-care comes when and where I can find and/or make it. It is far from ideal or even reasonable. I am fully aware of that. I do my equivalent of “Eat, drink, and be merry, for tomorrow we die,” knowing that at some point the “Eat, drink, and be merry” part won’t be there for me any more. So I Carpe Diem where I can, while I can, and try to make it last for as long as possible.

      In line with @Denise‘s comment, things would be different if I could get any help from the doctors and agencies here. I’ve approached them and have also consulted with my lawyer. Both the sheriff’s office and the fire department have responded to photos I’ve shown them with, “Oh, we’ve seen a lot worse.” Those same photos led Therapist #3 to ask me, “How can you live like this?”

      Like you, I’ve habituated. It’s a way of life that happens to be far beyond the pale. To survive it, I have to live in the moment and grab any opportunity that comes along, whether it be in self-care or in crisis management. If I think too much about it, I lose my ability to function.

      Am keeping you in my thoughts and prayers, too. Thank you for being there. (((Hugs)))

  7. Avatar of Denise

    Hi–I did laugh about your partner’s comment about her blood pressure. :)

    I guess my frustration is that none of the doctors intervene to help you. Maybe I’m living in LaLa Land but I would love for one of the doctors to say to you, “You must need a break. And, your partner needs help. Let’s admit her for a few days, really get a feel for what we can do to help her, put treatments and programs in place to help her AND give you a few days off.”

    I’d love for that to happen.

    • Avatar of ejourneys

      Hi, @Denise — I love your scenario! Oh, wouldn’t it be loverly! :D

      Five years ago I asked around — and around, and around — trying to make that happen. Over the years I’ve spoken with doctors, nurses, therapists, social workers, my lawyer, the sheriff’s office, the health department, the fire department, DCF, a friend who was a retired lawyer, another friend whose daughter is mentally ill, another friend who has a criminology degree, both professional and family caregivers at the Fearless Caregiver Conference in 2011, and I’ve probably left a few people out.

      Bottom line is this:
      1. My partner can perform her ADLs and is not an immediate threat. She is sick but not sick enough, potentially dangerous (as with the cooking coil) but not dangerous enough.
      2. I am not her legal guardian, so cannot force her into any kind of hospital admittance (see #1).
      3. Her behavior is not extreme enough to warrant either Baker Acting or an Ex Parte.
      4. She cannot be forced out of this house (i.e., evicted) because I have never charged her rent.

      The kicker is that if her condition deteriorated to the point where I became her legal guardian, I would be liable in many ways that I am not liable now, and I would receive absolutely no help in enforcing my responsibilities. (Even calling in a decluttering service would go only so far — they are there to facilitate but cannot force the issue.) I learned this thanks to an error made by Therapist #2, who had assumed I was my partner’s legal guardian. That therapist’s behavior (and, frankly, threats) really spelled things out for me, and has given me much to think about if/when we reach that threshold.

      If passage ever opens up to LaLa Land, I’m buying my ticket! First class and Express. :-)

      PS: I would have laughed at the blood pressure comment, too, but that might have given the doctor apoplexy. :-)

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