Family and Caregiver Schizophrenia Discussion Forum

What if this, what if that

Most of us on this forum are troubled, depressed, burdened with a loved one with sz. If there is one thing that you could have done differently, knowing what you know now, what would that be? And if you had just 1 wish right now, and it could be granted, what would that be (within reason, of course)?

The thing I wish I could have done differently was seek help for him sooner, way sooner. Knowing and feeling and every bone in my body telling me there was something wrong with my son, I let it go for too long. I kept thinking it was just adolescent depression/anger issues, and thought he would eventually snap out of it. Little did I know that a catastrophe was around the corner for us, and he would be diagnosed with sz.

I won’t wish that he didn’t have sz (because I said within reason), but I wish every day that he will remain stabilized, and wish his negative symptoms do not get worse. I don’t think I’m asking for too much, or am I?

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I wish the same thing. Like you I wished my older brother could have gotten help sooner.

Also being Vietnamese refugees growing up in the U.S. in 1975 doesn’t help either. In 1975 my brother was just 10 years; assimilating to the U.S. culture was difficult for him. Also having parents with Vietnamese values doesn’t help when dealing with mental health issues. Basically Asian parents don’t deal with it.

I am 5 years younger; when my brother was 13 years old I notice he had problems with derepression. It just got worse as he grew older. When he was 17 (in 1982) signs of schizophrenia started to show. Even though I was 12, I knew my brother needed psychiatric help. But I also knew my parents would have a problem accepting the fact that my brother was ‘crazy’. Having a son with a mental illness would cause them to lose too much face to other family members. I wish I had courage to speak up then. When he was 18 the depression and paranoia got so bad he attempted suicide. Thankfully, we were able to get real psychiatric help. Unfortunately, it was just beginning his schizophrenic life which got worse and worse.

If my parents had paid more attention Could the proper emotional and mental heath support back when he was 13 help?

I don’t know, but at least it would have better than nothing. And that’s what my brother received from myself and my family nothing; imagine a teenager suffering 4 years for depression being alone around a family not acknowledging what you are feeling.

I am now 49 and I think about this all the time.

Mbheart you are not asking for too much because I wish the same for my brother.

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My sister was always brilliant but quirky and started to struggle when she was 10 or 11. Her psychotic symptoms emerged very gradually over the course of decades (although I first suspected she had schizophrenia when she was in her early 30s).

My parents wanted to be good parents but they have always struggled with emotions and my sister needed more. I’m her big sis and I wish I’d had more capacity to understand and communicate emotionally when I’d been younger. It probably wouldn’t have prevented her symptoms from developing but I think she’d be doing better now if I’d been able to do more sooner.

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Hi mbheart,

I definitely would have encouraged my boyfriend at the time to continue his psych meds that he was taking as part of a conditional release program from prison/State Hospital. However, he stopped not too long after we had our first date. Now nine years down the road, he is delusional, psychotic and doing things that are illegal and that also threaten my livelihood and home situation.

I know that certain meds have risks and some risks are horrible. Is there a middle road? Where our loved ones can be treated for some aspects of their illness and live a somewhat normal life?

Yes, stabilization is the ultimate goal. I do not see that happening with my husband. He is growing worse every day and threatened me yesterday. Not sure what to do. Resources are poor where I live. I pray for a solution.

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Hi @Chuong_Ha,

So sorry and sad to hear about your brother.

This is what haunts me every day. Could I have done more? Why didn’t I do more? Why didn’t I force him to go get counseling? At the time, I’m sure I tried, I’m sure I encouraged and begged, but was not successful in getting him the help he needed. He was a young angry teenager, and hard to handle. And I know there were reasons behind that as well. Not his fault at all.

I always felt like severe depression is not only a prelude, but a major component of the development of schizophrenia. And what is really ironic is that he is now on Antipsychotics which is causing him to exhibit the same traits that were noticeable starting in his early teens. His negative symptoms (lack of motivation, withdrawal, isolation) is all too apparent. Maybe his anger has subdued a bit, but some days I feel like even that can erupt as well, without warning. But the AP is helping him with his “thoughts”, and he admits to that, and I’m grateful for that at least. Those “thoughts” were pretty strange and scary, and were responsible for several hospitalizations, and close calls with the law.

I’m trying to live day by day, and most days my nerves are shot and stricken with anxiety not knowing what may happen next.

Thank you for sharing your story, I love that we can all open up about our troubles and deep sorrow. I feel it’s very therapeutic.

And I really do understand the guilt that you’re feeling. I also feel responsible in so many ways, and I honestly feel I had a hand in this tragic outcome somehow.

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Hi @LifeIsHard, I’m so sorry about him being abusive to you. They say draw boundaries with your loved ones with sz, but I’m finding it’s harder said than done. I’m trying.

I thought he had moved far away from you, so as to get some reprieve from having to deal with him on a daily basis? Is he back?

Please take care of yourself.

Thanks mbheart,

Last month, a friend paid for my husband to fly back to where I am living. Previous to this, we had agreed that he shouldn’t come back without at least savings and a plan for how to live here, but he said he missed me. This time, I have not been giving him money at all, only bringing him food and water. He had tantrums about this at first and then seemed to be handling it well, but was just building up resentment.

He is in a constant manic state and every day there is a new drama. Sad to say, even though I still enjoy his company and of course care about him immensely, I am hoping his friend will buy him a ticket back to CA where he can receive decent care if he needs it. I am concerned he is going to have a breakdown here and there are little to no resources.

Throughout his time here recently, I have been feeling stronger, setting boundaries and sticking to them. That has been very hard and I wrestle with feelings of guilt. I am doing my best to use the LEAP method when I can, to listen and not get upset. Sometimes I end up getting upset, but it will take a while.

Thank you for your concern! I hope your son remains stable.

Thanks mbheart

It is strange and good that all of us on this message board can understand each other and don’t judge.

We all play a part in what happens to our family member afflicted with schizophrenia. However, schizophrenia is like run-away train; no matter what you do you can’t stop it.

All we can do is be honest with what happened so we can move forward.

At present there is only so much you can do for your son. Others who don’t have to deal with a family member with a mental illness has no idea how mentally and physically exhausting it can be. Don’t forget to take care of yourself too.

Thanks for listening and sharing.

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If I had one wish for my brother, it would be for him to stop drinking. I think he had the potential for a recovery as complete as mine, but his sharper mind has degenerated over time with drink and seemingly untreated bipolar disorder. I feel if we could focus on one front, he’d do much better, but his substance abuse holds him back.

Both diseases are rooted in denial twisted into a knot so tight, I fear it can’t be untangled. He ‘accepts’ he has some super-special genetics that bring on his bipolar symptoms, and he ‘accepts’ he’s an alcoholic, but he’s stuck at step one— he accepts he’s powerless and therefore there’s nothing he can do but suffer. He seemingly doesn’t want to give up his special status that allows him to do what he ‘wants’ to do, when doing something different might dramatically improve his life. The tragedy is with SZA, I have the more ‘difficult’ disease and I try to live my life to serve as a pattern to him of how he might turn his own around, but he won’t take the bait.

As for me, there’s little I would change. If only I’d been referred to a competent psychiatrist by my psychologist , I may have been spared a year of symptoms without medication, but that could be the experience that turned things around for me— I don’t know. I’ve had relationship troubles because of my illness, but I can’t point to one thing I’d change other than not having the illness to begin with. And facing and recovering from the illness has made me who I am, and I like who I am, so I fear going back and making changes would be an existential threat.