Family and Caregiver Schizophrenia Discussion Forum

My Mom has always said--


#1

“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.


#2

I usually don’t post on what you write… But in this case, I think you are down playing your vital roll in helping me get to where I am today.

At 14-15 no one expected you to fully understand all the flavors and shapes of negative symptom, but once you understood the taste of it, you helped root it out with the same fevered pitch that I go after english ivy in the city rose garden.

I needed everything you said, but your just as big a part of that ingredient list as everything else. Because it is meds, and therapy and education, lifestyle change, and physical activity and support groups, and resources…

But don’t leave out friendship, kindness and love.
Thank you for that.


#3

You guys make me laugh and cry :heart:

Your mom is awesome!


#4

i can only wish for the type of re;ationship with my brother that u guys have. keep it up. good luck in life to both of u xxx


#5

Heartwarming story. And yes, I see that your brother is funny. The story about the bee in the car was very funny.
I don’t know if anybody will believe this but a BIG step in my recovery was when I was able to joke around with my dad about the hospital and some of the more “eccentric” patients. And my sisters have been my biggest supporters almost since the beginning of my illness, back in 1980.Growing up, we fought like cats and dogs but once when we reached adulthood we get along fine. In fact I go to my middle sisters house every Monday night to have dinner and talk. Sometimes we go out to eat.
But in regards to your story, I can see your only human and that maybe at times when you were younger that your brothers welfare wasn’t always of interest or a priority in your life. And it’s understandable. I don’t expect my sisters to put me ahead of their husbands or kids. But they still are a big factor in my recovery. But you did the best you could and your reward is that your brother is back and he has made measurable progress, thanks to you and your parents. And it’s obvious, that he in turn, appreciates you and has your good welfare at heart. Reading about your brothers condition before he got well brings back painful memories for me and realy hits home. I try not to think too much about the early days when I was realy ill in my late teens and early twenties.When it took me an hour and a half to get dressed, and I didn’t talk to anyone and how in my first group home I spent months sitting in the backyard by myself, fighting every day to keep my sanity. How I didn’t have a future. Miracles happen, right? Good luck once again kidsis, to you and Surprised.


#6

Your post gives me hope. Thanks and what wonderful parents you have!
It’s funny, it’s the same quote I’ve been saying to my son…


#7

Thanks you give me hope…for my son


#8

Wow. This is real deep. I’m glad that you have such a good relationship with J. I kinda wish I had that kind of relationship with my bro.


#9

Thank you. My big bro is my hero. I know I’m lucky to have him back.

I read your other post, I hope you feel better. I admire you for hanging in here.


#10

Thank you :blush: I also admire you for staying strong.


#11

I’m glad to see you on the family side. I do a bit more private messaging then open post. I would be afraid of embarrassing my big bro if the topic is too personal. Even though he’s a very open person, I think I’m a little more shy then he is.

I’m always open to PM’s. Hope to keep in touch and I really hope for you feel better very soon.


#12

This used to confuse me and upset me. Compliments were hard to take. I never felt I deserved them. But now I’m pretty happy when I hear you say it. Not as a compliment, but a measurement.


#13

Great post - it is great to learn about your journey - it keeps the rest of us moving.