I saw an article the other day and I posted it here about cognitive symptoms that are left when everyone stops focusing on the positive ones because they feel the person with schizophrenia is stable. At least that's what I took from the article. What it pointed out was that people need to pay attention to the other facet of schizophrenia, the debilitating effects of cognitive symptoms. After reading the article I passed it on to Dr. K. and asked him a few questions.
In therapy last week we had talked about how we would be able to start cutting Thomas's sessions back to once every two weeks and then eventually to once a month if he remains stable. I was totally on board with that but that was before this article and before I actually gave much thought to it seriously. Sure, the positive symptoms have lessened and it's so easy to call the game and say "he's stable" and "now we can move on" but the article pointed out types of cognitive symptoms and they all immediately reminded me of Thomas. This article took the symptoms very seriously and I felt like we needed to also. Dr. K. and I that is.
I wrote him a nice email and included the article and asked him if we were being to overzealous about minimizing sessions. I didn't accuse him of this but I did mention that many psychiatric providers focus so much on "curing" the positive symptoms that once they're gone therapy slows or ends. Dr. K. was never saying he wanted to end therapy but after this article I didn't think even cutting it back to once every 2 weeks was a smart idea. I'll admit that even I felt like Thomas could be set free from therapy now that the positive symptoms are gone but I have now changed my mind.
Thomas still struggles a great deal with everyday tasks. His working memory is terrible, he's afraid and/or anxious about doing things that most people could handle and he struggles with understanding directions. I was making dinner last night and as I was getting started Thomas walked into the kitchen. I told him,
"Hey! Why don't YOU make dinner since you're here! I'll teach you."
Let me first just say that the dinner was Hamburger Helper. With the exception of liquid ingredients, all of the rest of the ingredients are pre-measured. When it came time to measure the liquid ingredients the recipe called for 1 cup of milk and 2 1/4 cups of water. I got out a 4 cup measuring cup and knew beforehand that this would be a test for Thomas. Here's why.
I told him this would be a bit of a math problem for him to solve. I said he needed to first measure the one cup of milk into the measuring cup. He did that. Then I asked him what line he would have to go to to add the 2 and 1/4 cup of water. For the life of him he COULD NOT GRASP this concept. He saw the 1 cup of milk as one of the 2 1/4 cups so he said he should fill it to the 2 and 1/4 mark. After all, in his mind, the box was saying 2 1/4 cups water and he was taking it literally meaning the full amount (milk included) measured should equal 2 1/4 cups of liquid. It needed to be 3 1/4 total. I patiently worked with him on this explaining that there was already 1 cup of milk in there and it needed 2 1/4 cups more of water and finally after A LOT of consideration he got it. He filled it up and poured it in the pan. In the end, the dinner was a success in its preparation but poor Thomas made the whole meal shaking the entire time. He was TERRIFIED. When he was done I picked up the box and I showed it to him and I said,
"Now you see, this is a full meal and YOU prepared it. So if you are on your own this is one meal you could do all by yourself and by adding a salad or some fruit with it you have a complete and healthy meal."
He beamed from ear to ear.
Then last night an email from Dr. K. came in. A response to my email to him about Thomas's cognitive problems. As I read it I felt sick. I felt sick because once again I was caught up in my own reality and then the doctor came through and verbalized my worst fears. Here is what he said about Thomas's cognitive abilities:
"The cognitive symptoms that I am indicating are difficulty with understanding at times during the course of therapy what is being said. He is unable to process the information and develop a point of view regarding information. He has a slow processing speed, there is evidence of cognitive ambivalence and at times a marked delay in processing auditory information."
For me.....FOR ME that was VERY TOUGH to read. Here is the doctor who I like and trust telling me what I already know in the back of my mind but I deny it because it hurts too much to face. I do this with Thomas's illness in general. I can write here about how he has schizophrenia and I can utter the word to different people but when Dr. K. says he has schizophrenia, I am brought to my knees and feel the pain of the first time I found out he has schizophrenia. I have this duality in me and the best I can figure what is happening is that it is self-preservation. No mother, no loved one, wants this for their child. No one wants this to be true. No one wants to fully admit that life is forever changed for their loved one and there isn't one thing we can do about it.
So, I read that email and I curled up in a tight ball in my chair and I began to cry. I cried tears of grief wondering what happened to my boy, the cute lil guy who pushed his Thomas the Tank Engine trains around their wooden tracks. The little boy who jumped in the leaves in fall and held lemonade stands in the summer. I cried because I thought we were done, I thought he was stable, I thought we were going to get to move on and live a normal life when in fact we're still mired down in this illness, there is just something else about it we need to work on.
My heart, for my boy, broke again last night. How is this possible? More importantly, WHEN DOES IT END????
Tuesday, February 10, 2015
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