Sando–Your post deeply resonated with me. What’s terrible, too, is to see my son’s suffering. Though he has anosognosia and cannot understand he is ill, he feels acutely isolated and lonely. His father (my ex) are the only people he has left in his once-active life. Everyone here advocates for hope, and though I agree, it is very hard to look ahead to hope when one is still in the throes of the chaos (the many hospitalizations, etc.) that has replaced normal life. There are many emotional adjustments we must go through to accept this new reality, and they do come, slowly, over time. The grief never goes away, but acceptance comes.
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I’m another who feels all this so acutely. I routinely walk by a cemetery, and when I pass markers of young people I admit to being conflicted, sad for their loss, and a bit envious that at least their pain is over. And by ‘their’ I am including both the deceased and their parents. What makes it even worse for me is that my child is hostile to me and blames me for everything wrong in their life. Even in the relatively stable times, we do not have a good relationship because they maintain that underlying belief. I have long since grieved the loss of who they once were, but have ongoing, unremitting grief for the life they are forced to live, while simultaneously trying to ensure that it is as safe and stable as possible.
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Well said Deborah. Must admit that I feel a sense of peace when reading posts and replies. Somehow made more ‘whole’ when looking at the bigger, very fragmented picture as seen through other 1%’s eyes.
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There are many hard parts to SZ:
Accepting the diagnosis - how did this happen, why?
Handling the sense of loss. I feel like my son’s future has been stolen. The helplessness - I don’t always know what to do/how to help.
It’s a life sentence - until there is a cure
It also makes you not sweat the small stuff - as most of it is
Appreciate the little things
Forces you to stay positive - a necessity
Greater empathy and understanding for others
Be more accepting of those that are “different”
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Before sz my son had a good job he was a milright had many friends had a heart of gold.
Now he has no job no friends. We had to have him put in the hospital 4 times. He will never forgive us. My sister just thinks he’s crazy and doesn’t want him to go see his grandmother. He has been medicated for about 1 year now. I don’t know what’s going to happen when I’m gone. Sometimes I can’t stop crying when I think my son will never be the same
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Never lose hope. That is what keep us going.
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He will be different but enough of the old son shines through when medicated- we all cry we all miss the person before the disease.
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I found myself sitting in my son’s bedroom yesterday looking at his things and became overwhelmed by the realization that this is what parents do who have had a child die. Then the grief became worse because there really isn’t much left in his room to connect to the son he used to be because he has sold or lost most of his belongings.
We have only been dealing with this since April of this year and every moment has been a nightmare. I’m so glad someone told me about this site. I hate that anyone else is out there going through this but it is comforting to not feel so alone.
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Welcome to our haggard group of the 1%! We’ve all experienced the impossible lows but also the hopeful breaks in the clouds from each other. You are not alone. We can’t cure it - but we can walk alongside each other while we love our SZ family member. Welcome.
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Its so hard…Hope you find strength in sharing your experience in this site. I would like to hear more about your son. Mine is 24 yo and homeless. in another state
Bipolar sz affective. No substances, for now. There is not a single moment he is not in my mine.
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Thank you! This is exactly the support we have so desperately needed. No one else can understand.
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Right??? Last year at this time our son was finishing his freshman semester at a small college. And this year, after a major episodic break involving major self-harm, he’s in a residential treatment center about 20 hours away… Unbelievably sucky. Unfathomably sad.
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This started back in April of this year when our son was 19, he has since turned 20. Right after graduation in 2018 he started not following the rules of our house and started staying out all night and not calling, which he never ever did before. We explained to him that even though he was no longer in high school we still had rules that he would need to follow and that we couldn’t have him coming in and out of the house at all hours of the night. This eventually led to an argument and he moved out. We expected him to cool off and be back in a few days but he never wanted to return. During this time he would stay with friends until their hospitality ran out and he will go to the next until he ran through everyone and all of his friends have since disappeared. During this time we were very confused by this behavior and the fact that he didn’t want anything at all to do with us but we thought he is just rebelling and in time he will come around. He did eventually come around when he had ran through all of his friends and had no one else, that was when we could tell something was really wrong we just didn’t know what it was, possibly extreme laziness or maybe even drug use. Then his friends started telling us the things he was saying such as that he is God among other things. We’ve had him hospitalized four times since April and only recently got a diagnosis. They kept letting him out telling us nothing was wrong because he wasn’t admitting to any of his delusions, and still doesn’t. He ended up homeless for a few weeks until we convinced him to come home and agree to take medication. He only took it for about a week and stopped. We eventually had to tell him to leave our home because he started being really nasty to us. His strange behavior confused and scared his younger brother to the point he did not feel comfortable or safe in his own home so our son with SZ is staying at his grandmother’s until we can figure out what to do next. We have told him he cannot continue to stay there unless I can make sure he is swallowing his medication each night. Needless to say this is not going well so I’m afraid he’s about to end up back on the street.
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Many things that others take for granted are hard when your child develops schizophrenia. For me, it was hard to see my love for my daughter turn to anger and disgust. It was hard to not be mad at God for taking such a sweet warmhearted person and turning her into a delusional ingrate. It was hard to keep hoping that there would be a solution I could find when hopes kept getting dashed to bits…
But for me, the horrible twisted journey came full circle: the past two years as of 12/18 she has been on an antipsychotic injection that worked. I am thankful that God didn’t let her die (just disappear into her mind and reappear 2.5 years later). Her success in her “new” life gives me hope that a solution exists to better life in great or small ways for everyone stricken with sz… somehow sometime… if hope isn’t lost in their caregivers. Wishing everyone hope and improvement bit by bit.
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So happy to hear your daughter is doing better! Your story does give hope that all may not be lost though I do realize this doesn’t happen for everyone. I’m just glad that for some it does!
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I am new to this site. My daughter was diagnosed one year ago with schizophrenia. She was ready to start graduate school when the positive symptoms happened. She was living on her own so we are not sure when it really started. I’m guessing two years ago. During this last year she has been in and out of psychiatric facilities many times. She has been on risperidone, olanzapine, invega Sustenna injections geodon, and as of five days ago caplyta. So far nothing has worked. Each time she starts a new med we have hope but she has had no relief from the voices at all. Doctor did a dna test and says if caplyta doesn’t work out, she can start colozapine. Some days I’m hopeful and some days I’m filled with overwhelming sadness at the loss of my child’s future. I don’t understand this insidious disease and am trying to accept that I never will. As a parent, you try to fix things for your children. But with schizophrenia it is one day and sometimes one hour at a time.
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Old Lady Blue - great update full of hope for us all.
Patti - so very sorry for your struggles. The only comfort I’ve found has been in finding that we’re not alone. None of us are. Yes, I have my faith, but God and I will be discussing the cruelty of SZ if/when I make it through the pearly gates!!
For me, listening to and loving others through this harsh, dramatic life derailment, is the only thing that makes it tolerable.
Hang in there. Share the highs and lows. I’m a reckless optimist and pray that some ray of hope finds you this morning.
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Hi @Patti and welcome to the site. We all understand the overwhelming sadness that comes with this awful disease, it is a life stealer, I hope you can find some comfort in this forum.
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Sorry to hear about your son, recovery is possible.
I’ve had a history of severe mental illness but managed to get better and no longer take any medication, work part time 2 jobs and actually enjoy my life with my girlfriend and look forward to the future. If your son would like some ideas on how to get better here’s a link to my short essay
Link: http://media.yoism.org.s3.amazonaws.com/CakeTheory.pdf
Also I have a YouTube Channel where I air my views. Good Luck>
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The grief is heartbreaking. I feel for you and wish more support services/doctors could prepare parents for what they will go through. There’s not much out there that’s written about it either. As you said, it is like losing a child - except there is the child in front of you but now is someone you don’t recognize. Know you are not alone. It took me years to even name what I was feeling as grief. Each milestone my daughter missed was a new opportunity to mourn. It is so healthy that you can name what you are feeling as grief. Naming it helped me. In time, and with acceptance of my daughter’s condition, the grief began to ease. Slowly, I started to see my daughter come back to us as well. Probably not who she would have been, but working hard to be the best she can be.
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