Thursday, September 25, 2014

Just As Lost As My Boy

This will be another difficult post to write. My day yesterday was one of the worst in a long time.

It began with my husband, Dan, getting on Thomas about showering. I love my husband but he lacks tact, compassion and the love of a true dad for Thomas. It is one of my biggest heartbreaks of Thomas's life. I watched though as he told Thomas how dirty he was and how he needed to shower and I watched as Thomas got angry and shut down. SLAM!! I can't say I blame him because I did the same thing. He handled it poorly with Thomas and I wasn't surprised Thomas ignored what Dan asked.

Then I had to take Thomas to the dentist. He was so dirty. I was a little embarrassed, more for him than me, that he was going to sit in a hygienist's chair and they were going to have to work on him as dirty and smelly as he was. Thomas didn't care or didn't seem to. After the appointment it was about a 15 minute drive home and I thought I'd take the opportunity to have a calm, gentle talk with Thomas about showering. Never has getting angry or yelling or giving ultimatums ever worked to get Thomas to do anything and I wasn't about to do that now. I explained to him in the most gentle way I could about how he is viewed by society. I told him that he didn't smell very good because of the grease in his hair and I tried with all of my heart to bargain with him about showering. You see, we had made a deal a while back that he would shower every other day and if he forgot he said he wanted me to gently remind him to do it. We had a deal. Somewhere along the way that went by the wayside and now here we are. Obviously I said too much because he shut down on me and the conversation ended. He jumped out of the car when we got home and went straight to his room. I sat down in my chair and I started to cry. I had failed and I was out of ideas to help him.

Then I posted here about showering and you all shared your stories with me and I sat and cried as I read each one because I realized how we are all in this together in one way or another. I cried because there were so many of you telling your stories like mine and I HATED this illness for doing that to us and to our loved ones with schizophrenia. It is unfair. Plain and simple.

After reading your thoughts I went out to my husband who was in the garage at the back of our property which sits on an alley and I explained to him about what you all had said. I tried to reason with him and show him that this issue is not exclusive to Thomas. I tried, for the thousandth time to explain schizophrenia to him and explain the negative symptoms and then he stopped me and unleashed. Where all of the neighbors could hear he told me that he felt Thomas was disrespecting him by not taking a shower. He said Thomas runs this house and we just live in it under his rules. Let me interject here that that is not the case. Our lives as parents are not affected by any implied rules set by Thomas. Thomas sits in his room mostly and his worst crime is that he forgets to do his chores.

Dan went on to say that he was going to disconnect Thomas's internet access as a way to control his "disrespectful" behavior and I told him he couldn't do that because Thomas paid for that. Somehow the conversation went in to how Thomas lives here for free and doesn't pay anything to which I reminded him that Thomas pays his phone bill and internet and that he doesn't have money to pay for anything else. I asked him what he thought Thomas was going to do if he lost his internet access. I told him that then Thomas would just watch TV and THAT would make him mad. It went on like this for 10 minutes. His final blow to me and by association to Thomas was that if Thomas was dirty, he wouldn't go anywhere with us because he was too embarrassed to be seen with Thomas. He said he didn't feel he needed to be seen with Thomas when he looked like he did. I told him that was fine and that I didn't want him with us anymore, that he could just live his life and Thomas and I would live ours. I was done arguing and trying to explain why Thomas is the way he is so I walked away.

I came inside and again I sat down in my chair and I cried. I didn't know what to do. Thomas wasn't budging and God knows Dan wasn't going to and I was stuck in the middle of it all completely out of solutions. I sat and wrote Dr. K. an email and told him about Thomas not showering and filled him in on some things that had taken place lately and sent that off and felt a little better. Dan left to run some errands and I decided to go in and talk to Thomas again.

I told him that his dad felt that him not showering was a sign of disrespect. I told him that they were always going to butt heads because they both saw things their own ways. I told him that he should prepare himself for certain conflict because this issue wasn't going to go away. He said nothing. Then I tried another route to try to find out WHY he doesn't shower. So many of you said your loved ones have reasons so certainly Thomas must have his.

He outlined that showering causes him to itch (which I have been witness to for at least a year) and he wanted to avoid that. He said he didn't feel like he needed to shower because he doesn't really go anywhere and he doesn't do anything that makes him dirty. He said he didn't care what people thought of him because after the bullying he endured in junior high, he had made the decision to not care about people's opinions anymore. All fair reasons, all well-entrenched, all immovable.

I talked with him a little more and he just looked at me with these vacant eyes. I don't know if any of you know this look in your loved one's eyes but as we talked, during the entire conversation, he was looking right at me but he was not there. I don't even know how that's possible! There was no emotion, no expression, just emptiness. I slowly realized that my worst fears about him disappearing had come true. It may have been the talk but I think it is bigger than that. Something is missing and looking at him, I can't find anything to hang on to. There are no reactions, there is nothing. I told him I loved him and he just looked at me with THOSE EYES and he told me he loved me too. Then the flood overtook me. I realized he was gone. He's been gone a long time. Long before this whole shower thing. Then I said to him,

"I wish you could see you like I see you."

and tears welled in my eyes and spilled out of me. As his mom, as the one that gave him life, I realized he doesn't see himself. He doesn't know how sick he is, he doesn't think there is anything wrong,




I apologized to him for my tears and he seemed to soften a little and he stood up to hug me.

I held onto him for DEAR LIFE and just cried. I tried so hard to keep from sobbing, I held my breath but I couldn't stop the tears. After everything the last few days, after the day we had just had, after seeing that there is nothing behind those beautiful brown eyes of his, I just couldn't stop the tears. I squeezed him tight, stepped way, wiped the tears away and made him promise me that he wouldn't keep things from me just because I was crying right then. I know he protects me from a lot of his illness and I hated myself for crying because I knew he would feel responsible. I told him again that I loved him and I left his room.

Alone again in the living room I cried. I couldn't hold back the sobs and I put my hand over my mouth and wrapped myself with my other arm and squeezed. All of it, all of it from the first time I saw something wasn't right with him, to his first psychotic break, to his first hospitalization, to his second hospitalization and diagnosis of acute paranoid schizophrenia, to all the drugs he's been on, to all of the similar conversations that we had, to all of the times I had seen nothing behind those eyes, ALL OF IT came crashing in and I drowned in my sorrow and grief.

How did it come to this? Why did it come to this? Will it ever end?

So, today I sit here and I write and I cry fresh tears and I shake my head in disbelief. I feel just as lost as my boy but in my world there is life but there is also a grief beyond measure.

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