Friday, May 22, 2015

A Sobering Day

(Picture Credit: usablealgebra.landmark.edu)



I've been sitting here for a few minutes with my fingers posed over my keyboard trying to figure out how to write this post today. I feel so sad because yesterday in therapy we learned some things about Thomas that are heartbreaking. Both Thomas and I, and I imagine Dr. K. too, came away with a feeling of sadness for the losses that have been incurred for Thomas.

All of us talk about the cognitive difficulties that come along with schizophrenia. I'm fairly certain that most of us feel like those difficulties are a bit like the black sheep of the array of symptoms that schizophrenia "blesses" our loved ones with. They seem to be overlooked in literature and information online and elsewhere. Sure, there is mention of it but the mentions are so generalized that it leaves all of us dealing with so much worse than the words we see on a screen or in a book. There just isn't enough out there that describes what our loved ones go through and it leaves us (at least it does me) feeling like whoever the author is of the article that they don't have the first clue what they're talking about. Nobody lives it like we do and we are all experts on the deficits our loved ones face and we're well-versed in just exactly what is wrong but we are unable to help it and instead stand by as we watch our loved ones disappear into cognitive deficits that never seem to go away or that seem to get worse as this illness marches through the minds of our loved ones.

So, yesterday was one of those kinds of days that Thomas, me and Dr. K. faced some harsh realities about Thomas's deficits. Dr. K. told us as he started the session that my post titled
"Chef Extraordinaire" brought a tear to his eye. I remembered writing it and I remembered the day but I also remembered the fact that Thomas, ultimately, had succeeded in completing cooking a meal. I saw so much to celebrate and had forgotten the sadness of the shopping trip and in the preparing of the meal. With Dr. K. mentioning that it brought a tear to his eyes, I went back and read it later and I see now the sadness within the story. The session yesterday, though, was a session about assessing what Thomas's deficits are.

One thing that stood out to me was something Dr. K. called "visual neglect". If you read my "Chef Extraordinaire" post you will understand what I'm talking about. Remember how I told you that Thomas stood in front of the shelves filled with spices and how I explained to you about breaking the shelf up into 4 quadrants and how as Thomas scanned for the packet of seasoning he needed, he totally missed the lower left quadrant. It was only after me telling him to look for orange packaging did he then change his focus on the other 3 quadrants to now include the 4th where the spice packet resided. It was a weird experience to watch as his mom but I learned that that is called visual neglect. What I didn't say in the "Chef" post was that at one point in the store I had him look up at the sign over an aisle that gives 8 or 10 things that are contained in the aisle and I knew his answer he needed was on that sign but he looked and looked at it and couldn't find the answer. Then I had him read the sign out loud to me and he totally missed the first thing on the list. He read everything else except the very first thing on the list. It was weird. The stories of his visual neglect piled up in therapy yesterday and we were all left a bit speechless trying to process this new piece of information about Thomas's cognitive deficits.

The session went on to a couple of tests of Thomas's "working memory" and we quickly discovered that his working memory is pretty much non-existent. For those of you who don't quite know what working memory is, Wikipedia describes it like this:

Working memory is the system that is responsible for the transient holding and processing of new and already stored information, an important process for reasoning, comprehension, learning and memory updating.

Dr. K. did a few tests of Thomas's working memory and he pretty much failed everything. It was very sad.

For 35 minutes we discussed all of Thomas's deficits and for 35 minutes, as the minutes counted down, we all lost a piece of our hearts. I watched Thomas process all of this stuff but I couldn't read him very well. I just knew by looking at Dr. K. that he was sad and I knew inside of me my heart was breaking.

When we got home, I was in another room and Thomas walked by and sighed this huge sigh and I asked him what it was about. He said he didn't really know and I offered him a hug. As I held him in my arms and rubbed his back, I asked him if session had been hard and if it was upsetting him about what we learned about his cognitive deficits. He said it had upset him and my own sadness fell away because what mattered more was that Thomas has to deal with and reconcile his reality. With so much lack of insight into his illness, when he is made aware of something, it is like hitting him upside the head with a brick. He's shocked and hurt and depressed. Who can blame him?

I'm sad but he has so much more that is lost in all of this. It is his mind that is affected, it is his mind that has to come to terms with the fact that he has serious limitations and it is his mind that has to reconcile that he'll never been like everyone else. He will always be sick. He will always be challenged. He will always have to fight tooth and nail for what he wants and needs. Schizophrenia snatched him up just when he was  starting his young adult life (he was 15) and it has changed him forever.

It is so unfair to him.

So. Unfair.

4 comments:

  1. I feel your pain. My son developed paranoid schizophrenia at 20 years old while away at college. He has anosognosia so he has refused doctors and meds. It has been a long journey to today where he has a job as a dishwasher 30 hours per week and is DELIGHTED and takes great pride in it. I have much respect and admiration for his efforts. He has cognitive deficits no doubt. It does seem so unfair on top of everything else he has struggled with. You know, he had perfect SAT scores and I just knew what his future held. I was so SURE! Sometimes I almost feel guilty about my arrogance.. Planning ahead .. don't do much of that anymore..

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