Family and Caregiver Schizophrenia Discussion Forum

Going to learn what faith and trust is


#1

*Well-I had a good weekend with my son. His behavior was so changed. Not irritable, fussy-it was a big change.
he graduated from mental Health Court 2 weeks ago.*Since then, he has calmed down quite a bit.
Yesterday, he told me he didnt want to take his injections anymore. Of course, he missed last week. Today, he told me he was going to. So-the only difference i see here is me. I didnt react. New one for me. Actually, at the moment, I am frightened.
I told him that I would respect his decision-its his life...and did he know the signs to look for if he starts slipping. Today-he said he was going to go, hes just not in a big hurry.
i guess I am going to have to trust him this time. Even if i shouldnt, what can I do? He is 37 years old. I am really scared for him, but not afraid to speak my mind if needed. i dont think I ever treated him as an adult-just as my 19 year old son. Not sure what to say…I pray for him to choose the right path for himself…


#2

Praying with you! :purple_heart:


#3

hes lucky to have you. unfortunately some people let their son go homeless, which you clearly have not. thanks for worrying about him.

i hope you understand that besides religion and faith and things of that nature, sometimes diseases are unfortunately just hopeless.

this disease has hope because not everyone has to live on meds there whole life. i read somewhere only 33% have to live there whole life with meds.

no matter who you are, its hard for us to accept as schizophrenics that the disease is hopeless. literally it feels hopeless sometimes. were always told to look for solutions to our problems in life. but with this there isnt one.

the problem is meds arent the solution to us as schizophrenics who must live in this brain. why? because a side effect they dont mention on the bottle is chronic uncomfortability. for almost all of us the meds make us u comfortable in our own skin almost all day long.

im sorry hes making you worry again. im sorry you have to keep an eye on him again. i hope you understand its not because he doesnt love you, ifs because this disease is literally hopeless. hes probably looking for hope for a recovery this time around. hes using the positive thinking drilled into our heads at birth. i will pray he can come off. at least it will give him something to look forward to for a month, and bring him a sense of joy and opportunity during that time.

but being a realist, this is one thing positive thinking just doesnt kick. if you dont tolerate the medicines were basically told too bad there nothing we can do. which is the sad truth. does one want anehdonia, 45 lbs of weight gain, and a chance of tarditive dyskinesia, or do you want to relate to others and keep you from putting yourself in danger.

some people are born with down syndrome and autism and no meds work to facilitate communication. i wonder if the meds existed which reality the people with this diseases would prefer. as humans we have to feel comfortable in our own skin, but this disease just doesnt allow it


#4

i know youre worried about him, and i know you want him to be safe. im sorry you yourself have to go through this, you wont always be there to help him through.

sometimes when we feel drained or down about it, it helps to count our blessings.

something that might help you as a caregiver is go to youtube and look at people whose child had down syndrome or severe nonverbal autism. most of them can never pay bills and almost never communicate.

imagine being one of these care givers, feeling the pain they go through to take care of a 37 year old man whose never been able to speak his entire life. feel the emotions of compassion run over you for the parents/children who had to deal with this kind of medical condition, and youll realize there were still some eggs left in your basket thank god


#5

You did the right thing in not getting upset. It takes a while for us to realize what is going on. He is probably better because of the medication which is a good thing. It means he has a chance to feel better when he is ready.

@cactustomato I think with the 33% on medication there is another 30% that doesn’t respond to medication, so that’s 60% in the non cured bucket. I’m in the first 30%. It was awful before I went on meds and it was not getting any better. I know this, because my uncle still has it and he’s in his 60’s.
Thank you though for reminding us to be thankful for what we have.


#6

I’m really glad you had a great weekend with your son! It’s really hard to balance advocacy and care with creating independence and letting life and failure be a teacher. Those with sz have things on the line other’s don’t. Your son is lucky to have a loving mother.


#7

Sometimes we think someone is suffering more than they think they are.
It’s good to realize that it only makes you more upset when you react to something negatively.
He is very lucky to have you on his side, and pretty sure he wouldn’t want to cause you to suffer because of him.


#8

This jumped out at me and made me start thinking. I sort of remember a phase where my Mom was saying this alot… “You not my little boy anymore” At first I took that to mean she was washing her hands of me.

But as time went on… I think she was sort of convincing herself to let go of me a bit.

That sounds like the best way to start that conversation. I hope he manages to enjoy a long enough stint of stability that the though of relapse sort of makes him nervous. After having this past year… the thought or relapse sure does scare me.

Congratulations on having some better days and a break through. May more good days come to you.


#9

@bridgecomet , Happy to know that you enjoyed being with your son. I suppose he doesn’t live with you but does he live close by? May be you can check on him OR have someone check on him if he doesn’t take injection as he should? My son who is 29 has been living with us for 30 months. I gave up my job ever since he moved in to live with us. We have good days and bad days. I am going to do everything I can, to make sure he gets a college degree before he starts to live on his own. Good luck to you.


#10

Thanks for your prayers Barbie!
Csummerx-you are so right! I feel awful when I get frustrated-especially when he is trying so hard.
21angels-True!
Metime-yes, this is his chance to do it on his own, and he feels better about himself when he does.
Cactustomato-
A truer thing could not have been said

J.–thank you for your encouragement in this direction. Means a lot! I do think your mom had to give herself permission to let go–no easy task!!

Today, we talked. Really talked. Things start to feel better every day. He really does not like me to tell him anything concerning his health–unless he brings it up.


#11

**Hi Heather~~
No, he does not live with me, but has his own place around the corner. Until we can find a place that has everything within walking distance-I will always take him to the grocery store, laundry, I see him every Thursday before work.
I remember having to take off from work all the time because of crisis with him. I`m lucky that I work for a company that understood. **


#12

@bridgecomet , You are doing everything you can to help your son. Having him live close to you is a good thing. Checking on him and helping him as much as you can I am sure is not easy with a full time job. I am fortunate that I am able to stay home and take care of my son for the last 30 months while he attends college. What ever We do is good for our kids. Every little bit helps. Good luck!