“Do what you always do and you will get what you have always gotten. Expect better and you will get better.”
That has always been her solid philosophy when getting treatment for my older brother who was diagnosed SZ when he was 17 and I was 6.
Just two months after my 15th birthday there was a lot of continuing discussion about my brothers condition. Mom and Dad were worried about the stasis that my brother seemed to be hitting. There was more talk of lethargy, and apathy and lack of motivation and depression and detachment. I hate to admit it, but my mind started to drift during this bi-weekly meeting of the J preservation team.
I’ve heard it all before, and as much I love my brother; the brother I had at that point, was the one I was always going to have from here on out. So I thought.
Med changes, therapy changes, environment changes, life style changes were all discussed.
I am sorry to admit it, but I thought we were at the “as good as it’s going to ever get” point. It wasn’t that I didn’t want him to get better; I didn’t want him to be unhappy. Things were fine for now and he didn’t seem unhappy, however, he didn’t seem happy either. I was thinking he was neutral. Mom was sure it was negative symptom.
When it got to meds there was discussion of some drastic tinkering. Latuda was going to be added. I didn’t think it was going to do as much as my parents hoped it would. But as well as the Latuda being added, there was going to be a huge gamble and the Seroquel was going to be cut almost in half. There was going to be a taper from Zoloft to Xanax. There was going to be a change in therapy, there was going to be a change in routine. This talk was long and earnest.
I didn’t know why there was all this fuss. My brother was doing Ok. He managed to get to his part time job. It is true that he lived almost all of his non-working hours in bed and wore his pj’s in public, but he still swam a bit sometimes and took a walk for cigarettes. When he was having a good day, he would talk to me. The rest of the time he sat in bed and looked at the paper and listened to music through his head phones. He stayed right where I put him. He was easy to take care of. There were a few little episodes, but they passed quickly enough. Our parents have always been our back-up.
Sometimes I was a little sad that he had no energy to get out of bed and meet people, or see the sun, but he was able to get out of bed and go to work. He did manage to take a bath twice a week. Other then that I could take care of the house and he could work part time and then happily be in his head the rest of the time. I was told that he was functioning pretty well for someone with Schizophrenia. So why rock the boat?
Mom kept saying, “Do what you always do and you get what you have always gotten. Expect better and you will get better.”
The first week on the new med combo seems just like the previous week. He seemed chattier so that was nice. But he still stayed in bed when he wasn’t working. He still lived in his own world and didn’t have the ability to get up and really do much other then go to his job. I didn’t notice that much of a change. The second week on the new med combo seemed like the previous week again. I was Ok with the status quo.
Mom and Dad weren’t Ok with the status quo and began taking him to CBT again and they took him to an SZ support group meetings and took him to more therapy sessions. Mom and Dad worked hard and did a lot in getting my brother up and out of the house. It wasn’t easy for any of them; he didn’t want to leave the house as much. He wanted to stay in bed. I just wanted him to be happy and my parents actions were making him unhappy, as best as I could guess. I didn’t really understand why they just couldn’t leave him alone and let him sit in peace.
But they were determined, therapy and med’s and get out for a walk, and go to this group and even try some other physical activity and brain exercises and flash cards and other brain games. I looked at all this as another fad phase. I did want my parents asked, and sat with my brother even more and did a few puzzles and other games, but I am very sorry to admit, my heart wasn’t all the way in it. But Mom and Dad were serious.
The third and fourth week, he was talking more and instead of sitting in his bed he would now sit on the sofa. He’d look outside more and he was reading a book again and not just the paper. He’s walk around outside a little more on his own. Other than that I didn’t really register any great change.
Then one morning a very noticeable change happened. It was Saturday and I had my Ipod buds in and was rocking out to the Stones as I was making breakfast and I didn’t hear that my brother got up, got dressed and snuck up behind me and sort of jumped out and tickled me. Ok I jumped out of my skin. Then he smiled. It hit me that I hadn’t seen that bemused smile in a very long time.
After that, there were other little changes like asking me where I was going and then wanting to go to too for a bit. Waking me up at 4:00 a.m. to go to the park to shoot some hoops. Telling a few more jokes in a day. (my brother thinks he is the funniest person on earth) That was before negative symptoms.
One morning there was a long book like letter tacked to my door telling me more about my brother then I ever knew. He had written his likes, dislikes, jokes, hopes, ideas, something’s his voices said, and more. It’s last sentence that has always made me cringe. It says, “I feel so much better these days. Thank you for not giving up on me.” Ouch. I did sort of give up. I got complacent and used to the status quo. I’m not doing that again. Schizophrenia needs diligence. My family and I can’t get complacent or we all lose ground.
My parents were right, they expected better and with meds and therapy and help and resources and time and effort, and all sorts of other small changes, they go it. My brother is not the same man he was two and a half years ago.
I also admire you for staying strong.