Tuesday, December 02, 2014

What Are We Supposed To Do About This?

Well, the big envelope came down from on high from the disability determinations service. Dan got it out of the mail and brought it to me. My heart did a flip flop as I contemplated for just a few seconds what might be inside. This whole thing with disability makes me nervous for some reason. I don't know if it's the process or if it's the envelope after envelope containing God knows what--a rejection, new paperwork to fill out etc.

This time what the envelope contained was a form titled "Notice of Disability Examination. They have set Thomas up with a local PHD and they want to do a "mental status exam". Yes, I'm sure this is normal, in fact, I know it is, but here is the problem. I fear Thomas is not going to pass this and here is why.

FOR YEARS Thomas lived with his paranoia and voices. YEARS. And during all of those years Dr. K. was treating him for depression.

Depression.

For years Dr. K. and I had no clue that Thomas was as sick as he was. Sure there were things like the time he thought a letter contained anthrax in it and that someone was trying to kill him but we kind of let that go by, used to similar behavior. We didn't know it was prodromal schizophrenia because, me especially, didn't even think to look it up. These things were just "quirks" in Thomas's personality and even though he struggled with school and with anger issues I guess Dr. K. and I attributed that to depression. We just knew no better.

Years down the road in an unassuming therapy session (and after a major psychotic break that somehow fell through the cracks with Dr. K. and I) after Thomas being hospitalized for suicidal ideation, we learned the depths of Thomas's illness. Out of his mouth came one delusion, one paranoia after another. Suddenly all of those years of symptoms that we saw, were now pointing to a much more serious issue.

Acute Paranoid Schizophrenia.

Back to the hospital he went.

Upon emerging, we worked with the symptoms we knew about but so much more was brewing inside of Thomas and Dr. K. and I had no idea the depths of the illness.

Fast forward to 3 weeks ago when we sat in Dr. K.'s office again and there, again, we learned something about Thomas we didn't know. For years he had carried around the delusion that he has a demon inside of him and we were none the wiser. Even after everything we had learned, even after many sessions where symptoms could have been revealed, we had no clue about this demon delusion. YEARS Thomas has carried this with him and YEARS he didn't tell us about it until I happened upon it with a few pointed but innocent questions.

The thing is, I can't tell you how many times Thomas and I have sat before Dr. K. and I have watched Dr. K.'s frustration at Thomas because he wondered why Thomas hadn't told us one thing or another that had been a part of his illness throughout time. Over and over we have been hit by a speeding train named "Thomas's schizophrenia". Over and over we have learned new things and all of it only after years, and if we were lucky, just weeks of treatment. Needless to say, Thomas hides his illness well. That is the problem facing us with this "mental status exam".

Tell me, how is an hour or two with a stranger that knows nothing about Thomas going to reveal the true nature of his illness? She'll be a stranger to him and I'm not sure he'll trust her enough to talk to her. And what about this most recent thing where Thomas took it literally when Dr. K. asked him if he feels like he is up in the corner of the room, outside his body, watching himself do things? We were hunting down dissociation and Dr. K. asked a perfectly valid question based on experiences of others who say they feel, in the middle of dissociation, that they are up in the corner of the room. I, later, talked to Thomas and told him how I personally feel in situations like that that I step outside of my body, stand beside myself and watch myself do things. When I said that, Thomas said that happens to him too. So, Dr. K.'s relevant question to Thomas about being outside of his body was taken literally. Thomas was NOT "up in the corner of the room" but instead was standing right beside himself. All of it still a form of dissociation and all of it still reason to be concerned about him.

So, what is going to happen to Thomas and this "mental status exam" if the doctor asks him a question and he is unable to take it any way but literally? Question after question is going to fly by and Thomas is going to come out smelling like a rose. You know, one of the mistakes that Dr. K. makes and I am certain this other doctor will too is to ask Thomas what his paranoia level is RIGHT NOW. Always in Dr. K.'s office, Thomas's paranoia is low, if not non-existent. Well, of course it is. He's in a safe place with curtains closed and his doctor and his mom by his side. But let's go out in the car somewhere, let's go to the store, let's make him walk home from a friend's house alone in the twilight and THEN asked him if he's paranoid. I GUARANTEE you that the 0 or 1 reported in Dr. K.'s office will now be a 4 or 5 or higher. Ask him about how he's doing at his job. His answer? "Fine" Never mind that he came home early just the other day in the midst of anxiety and dissociation that I worked, even after he was home safe, to get him out of it. Sure, the cameras don't bother him anymore but what about the "shady shoplifters" and the inability to call for help about them because he has crippling social anxiety and hates to use the phone for any live conversations and then the underlying fear that what's making him see these shoplifters as shady is not that they ARE shady, it's that he knows somewhere deep inside that it's his illness, his paranoia, that is causing him to see people this way. All of these things were initially missed by the professional in his life, all of them were missed by his mom who spends her life with him. All of those things are missed and I have to ask,

"What else are we missing?"

And how will a 1 or 2 hour appointment with a stranger who doesn't know Thomas reveal the depths of his illness?

Needless to say, I think this "mental status exam" is going to be a bust and Thomas will be denied disability. Never mind that they have COPIOUS records from many doctors stating that he has schizophrenia. Apparently none of that matters and the government has to see for themselves in living color the pro that Thomas is at hiding all of the things that those records say about him.

This is just crazy.

So, I have a call in to his disability advocate today to see what she has to say about this whole thing. What would be ideal is if I could be in on the "mental status exam" and help guide this doctor to the right questions and remind Thomas, for example, about the shoplifters. I don't know. I guess we'll see what happens.

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