**As most of you know my sz son has been in remission of all of the most serious symptoms of schizophrenia for many years. His regiment of Clozapine, Depakote and benztropine has done wonders for him in stopping the incessant voices and dangerous delusions.
However the negative or what is considered less serious symptoms have never left and have probably become more pronounced. Symptoms like lethargy, confusion, forgetfulness, and lack of motivation.
That is still mostly manageable in our lives BUT what is most concerning to me is that now I am consistently seeing disorganized thought more and more. He simply can’t seem to organize things that require a series of steps and I can never say to him “do this and then this, and then that” He might get one of those things done and then maybe he will do something that is none of those things.
My best approach is to just ask one thing at a time and always always repeat, repeat 2 or 3 times or even more and ask what he heard and have him say it back, many times what he says back to me is not even close to what I said to him.
This is the most disturbing because his original diagnosis was “disorganized schizophrenia” and wow the disorganization is really becoming obvious now. Before he got better it manifested primarily in his speech, he couldn’t speak in clear coherent sentences, they would be what I learned as “word salads” No order at all.
Since he has been “well” his speech is great, perfectly normal and understandable, but the disorganization seems to be more in just his ability to think through any process or activity.
We still see his psychiatrist (well via telehealth) But only every 3 months because his condition has been so unchanged for so long. I am ambivalent about going through all this with his current doctor because she is not the type to perform her job in an “in depth” way. she is too overwhelmed with her case load,
I have let the situation ride because until these observations arose things were okay and finding a new and better doctor is next to impossible in the area we live in. Now I feel like I have to find somebody else to have him evaluated again and somebody that will look beyond the fact that his worst symptoms are under control and work with me to ensure he has the best quality of mind and life that he can have going forward.
It is all more difficult because my son sees no issues or problems whatsoever, even when confronted with them, he often says I just talk too fast or say too much at once and admittedly I have considered that carefully and I am always trying to address those 2 things by speaking much slower and placing long pauses between thoughts when speaking to him. I am always willing to change my approach.
That is another reason I can’t go through this with his current doctor, she is the only doctor my son has had that won’t respect that I am his sole caregiver and that we can’t discuss my concerns with him or in front of him in the office because he will feel utterly betrayed and become very angry and uncooperative and outright deny that what I am saying is true, none of which is productive at all. She has said to me she has no time to speak to me separately.
All past doctors have spoken to him and then also spoken to me separately under the guise of needing additional paperwork filled out or what not or by phone at a later time and then we would discuss how to approach remedies for my son’s issues in the least disturbing way possible for him. This would allow the doctor to approach my son with a solution even though he didn’t see the problem initially and because he respects the doctors (all of them) he would agree to try the course recommended without question.
That is the other issue with my son is he sees no details in a situation and he still has almost no self advocating skills even though I work with him on that all the time. For example when a careless cashier doesn’t give the correct change to him or a receipt or refuses a valid coupon etc…I help him to go back and request that the correction be made or recently a neighbor asked him to watch his lawn mower while he left to go get gas for it and then the guy didn’t return for over 2 hours and my son sat in a chair staring at the lawn mower for all that time! I tried to explain to him the neighbor asked too much of him in that situation and it was okay to not do what was being asked when it became so late, and he couldn’t see that.
Anyway. I will look for a more receptive doctor to work with my son and myself but I am very worried about the possibility of early onset dementia as dementia runs in my family and I have read articles stating that mental health patients can often be more susceptible to it in later years. I don’t want to borrow trouble I just want to be as prepared and pre-emptive as possible. Thanks for listening and reading, Constructive comments and thoughts welcomed. I will let you all know what I discover as time goes by.**
