Well....now that I found out about Zack burning himself... I figured I better step up the social service help. I don't know why the burning makes any difference...other than the situation is getting to the point of overwhelming again I guess. It's just another kick in my butt and smack in the face that this disease is something beyond my ability to deal with....and manage... and cope with. I am feeling defeated...but I suppose that's almost good. "Defeated" is when I seem to make my move to reach out for more guidance and direction. Help.
I called Abby with "Family Services". I just wanted to touch bases and get a report regarding Zack's participation in group. The last bit of info I had was a wonderful message Abby left me the Friday before Labor Day that Zack was doing an awesome job. Seems this week hasn't been as awesome...and today he mentioned he feels "bugged out". Bugged out makes me concerned that he is having the visual hallucinations again.
I also left a message for the case worker manager. We need managing.
This entry got interrupted. I'm back now from our doctor visit. Dr K is in his new office and some of the original staff that we've known since January didn't transfer. I didn't even conceive how difficult and shameful it would feel to tell a stranger "My son is burning himself"..... How I delivered that news without my face crumbling apart I don't know. Once we were shown to the exam room I sat about six feet from Zack....watched his expressions change... his lips moving....he was using those spared words for some unknown visitor... and smiling periodically. I prayed. "God be with me....God be with me...." over and over because I felt like I was going to come unglued and embarrass myself...and look like the crazy one.... so just a little inner mantra... to take my mind off the surreal situation enclosed in that ten by ten foot room. The ceilings were high. I kept looking up to keep the tears from falling. I was ready when the unfamiliar nurse came in and asked what's new.
After speaking to the nurse about the "bad things" going on - and that's how I put it.."We have some bad things going on"..It's so awkward discussing Zack in front of Zack...so I tried to just breeze over the weirdness like it's not freaky. She took it pretty well but I think she was a little disturbed herself....we waited a bit longer for the doctor. He popped in and said...."Zack? Do you mind if I speak to your mom alone for a few minutes?" I guess the nurse mentioned the weird burning freakiness to Dr. K. He is always very respectful toward Zack. I appreciate that. Zack was agreeable to it...so Dr. K took me down the hall to his office. He got me to come unglued....he just looked at my tense tired face.. and I looked at his sorrowful one, and he said "You must be really struggling"....and that's all it took. Somebody to recognize it. Yeah....I'm struggling alright. Today was tough. I think when I have to really stare this ugly monster in the face and comprehend what it's capable of...and what I'm not...that's when my misery gets intensified.
We talked for quite some time about Schizophrenia..his daughter's battle with it, what to try next for Zack..he mentioned the Clozaril...that it may be the "miracle drug"...but the side effects.. hideous - weight gain, low white blood count... and drooling. How degrading for a magic pill. We talked about the benefit of the structured setting of a group home....and he said a hospital will take him..because of our insurance. His exact words..."A hospital will GRAB HIM because they know they'll get paid...but a hospital is not the right setting." He told me about how we don't value caring for the mentally ill in this country....We talked about Zack...keeping him safe.. keeping us safe. He mentioned Zack has no life. I feel that way...and so sad for him. He told me some more of his own daughter's history. They've had a long fight with this nasty beast. He's a very kind man and he was very positive about me switching to Dr. M. He admitted she has more experience than he does with this type of disorder and it would be efficient and convenient to have the whole of "Family Services" available to us... I put it to him that I was thinking of switching to Dr M because it would all be in one place and packaged together. I felt comfortable about saying it that way and he completely agreed. I feel relief that that is done.
When we were finished with our own serious chat, we went back to visit with Zack in the exam room. Dr K made casual conversation with Zack about this and that...the voices that Zack does not hear - because Zack will deny it to the end...the constant showering....and then the burning. Zack brushed over the burning. He uses his Bic lighter...and burns himself on his arm. But he shared that he has a lot of "inner angst all the time". We are going to try adding a 5 mg dose of Saphris in the morning...and keep the evening dose at 10 mg...but I have lost hope in that little magic disgusting pill.
Zack doesn't want to leave Dr. K. He said it several times during the visit. He thinks switching to Dr. M is one step closer to a group home. He's right....I hope. I can't do this much longer... I can't bear to have this in my face daily..reminding me constantly of how my son is succumbing....and disintegrating. The loss of my son....watching it is agonizing. I am almost glad he stays away from me, keeping to himself in his room. That is an awful thing to say...but I admit it. I feel it. It was a satisfying final visit with Dr. K. I only wish I had said goodbye with more heart....and more gratitude.
Zack and I got in the car for the drive home....the drive is farther than from his previous office... and much farther than "Family Services"...I put on my ipod tunes for the trip. "Comfortably Numb" came on... perfect. Amazing how that happens. I repeated it several times. Zack commented. I told him I like this song...it's how I want to feel. I cried the whole drive home... I couldn't hold it back anymore. Zack didn't notice.... he only looks forward. I don't think he is really even aware of emotions anyway. I didn't take in any scenery... at one point I lost track of where we were and nothing looked right through my tears...then I saw a middle aged homeless man walking down the side of the highway....that caught my eye....a prophetic sign? I am so afraid for my son's future. Having a kid that wants to hurt himself....is losing his mind...his soul.... it just devastates me....and the fact that I am basically worthless against this tragic disease and the path it will take. There is something so ironic about having to come home and book Bibbidy Bobbidy Boutique for a client after the experience I just had. Life goes on, but today was a bad day.
To Be Continued......
I have to remind myself to be strong for these girls so life does go on.
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