It is definitely a game of trial and error. My son was in and out of the ER/behavioral hospital here in the PNW for over 2 years, although his symptoms were totally consistent with Sz he was not being treated properly. He’s been to at least 4 different behavioral hospitals multiple times each in the whole Greater Seattle area. It wasn’t until this last episode, which was probably one of the worst, partly I blame myself because I was frustrated and told him he needed to find another place to live. He ended up going to a behavioral hosptial in Tacoma called WellFound. He also had the presence of mind (I don’t know how, he got some sleep??) to say stop over-medicating me and I want a definative diagnosis. I don’t know if it was a fluke but I’m so grateful that the doctor he saw at Wellfound really listened, looked at his history and dx him with Sz and treated him exactly for that with minimum dose recommended. He turned a corner so fast that the doctor said he could be discharged after his involuntary hold was up. I guess my hope for you is that finding the doctor who will listen and who knows how to treat so the correct treatment can make a difference very quickly. Knowing what I know now I want to find a good psychiatrist for my son so he can have continuity of care. Also something that came from WellFound was a pamphlet suggesting a Mental Health Advance Directive so when my son is himself he can write down everything he wants and needs when he’s not feeling like himself. We are slowly working through it and my hope is that somewhere in his subconscious he knows he has a care plan in place if he relapses. One of the things my son told the doctor in his initial assessment was he was feeling hopeless and helpless. Reading through his initial intake gave me a huge perspective on how this all must feel for him. My goal now is to make sure he knows he is supported. Had I been at the ER with him this past time I could have helped prevent some paranoid related behavior because he allows me to speak for him when he’s been deep in a relapse.
My son did this…i.wondered if he was smoking pot…or if he is seeing devils…he has done thus off and on for 10 years…sad…
Hello! Thank you so much for what you’re doing! I’ve just finished reading everything and I have many questions, I should have written some down. I’m always so amazed when I hear about someone like you, living quite well (I hope) with sz, even though you had to work very hard at this and I’m so proud of you and happy for you.
When my son was diagnosed at the age of 25, he just turned 35 a few days ago, I thought oh no! This is very bad! I have a first cousin who was diagnosed in 1976 I believe and my mother’s own first cousin also, many years ago, so I guess you can say sz runs in my family. And so I thought okay he’s been diagnosed and was on medication. What I didn’t know then was about the negative symptoms. When I saw him just basically wandering around the house, somehow managing every day, doing nothing at all, that’s when my heart crushed.
My son has been on the invega sustenna, and gets an injection monthly. He takes three other, in pill form, meds. He’s been pretty good about the meds even though he doesn’t have terribly good insight, he does take the medication, with the exception of one time he went off all meds cold turkey for about a month before any of us realized what was happening! He totally transformed in his looks from a handsome young man into a very stereotypical street person! No offense please believe me but that’s the way I describe it. A crazy street person, scary looking, the whole thing! I have a photo of him then. He said it was so horrible, he felt so awful, said he would never again! He’s lucky something really bad didn’t happen to him poor guy! My son lives with his dad. I live nearby and my ex and I get along luckily. My son has never lived independently, doesn’t drive, doesn’t work and receives social security and medicare (total disability). He has no interests other than listening to music on YouTube. He doesn’t use a computer. Doesn’t read. Doesn’t talk much. Very withdrawn but is pleasant and we all just love him so much. He’s so lucky (I’m so lucky) that we have good empathetic/sympathetic family as that is really his only social network and even then it’s very rare he would attend any family function.
So here’s a question. Why is the withdrawing and isolating behavior so strong with this mental illness? Is it the paranoia? Is it stigma? Is it just giving up? He’s always been a quiet guy for the most part, but this is beyond quiet. He had/has ADHD inattentive type diagnosed in third grade, also, has quite bad anxiety, pre sz.
I worry about him all the time! I cry almost every day for him. He was raised in a good loving home, nothing unusual. I just wear myself out worrying. And I’m heartbroken for sure. He has always claimed he doesn’t hear voices, and I know not everyone with sz actually hears voices, although he does do the laughing and I’ve heard him in the next room like talking to someone. I don’t know what more we can do. He takes the meds but that’s it. No therapy. Won’t do anything. He smokes constantly that’s another terrible thing. He smokes pot. But does not drink alcohol and hasn’t done what I call hard core drugs thankfully. Smokes way too much pot though.
He doesn’t open up about his experience. I’m not allowed to ask questions, he becomes irritable and even more quiet, then he starts looking at me suspiciously. That’s when I know my visit with him is over. I don’t know what to think about this life (or more accurately, lack of a life) how is he not bored?? Says he’s not. He looks depressed often, says no he is not but he does recognize his anxiety. Is the depressed look part of the illness? Is that flat affect? He cannot manage his money, that’s another huge problem.
I’m just wondering what the rest of his life will be. Just smoking and walking around in the house, listening to music. He’s been doing this for the last ten years!
I guess I have too many questions but I’m hoping you have some insight into his behavior. I love my son. I know this isn’t anyone’s fault. I just wish I knew what he thinks about, what he feels. Is he happy? Content? I just don’t know. Some days his eyes look bright and he smiles. Next day he looks haggard and flat. So hard to see.
Thank you for listening. I would love to know your thoughts on my son. One more thing. He used to be a skateboarder. That was the first thing to go. Then all the friends. Horrible disease!
You literally just described our son and feelings. A few little differences but overall identical (lives at home, med compliant, isolated, YouTube, mostly sad, etc)
Maybe - maybe - it’s our acceptance of this horrible condition. A mercy we must develop for our loved ones.
When I get overwhelmed with sadness, guilt, or even frustration with my son’s condition my wife says to think of it as a different but incurable condition and patient. Yes, I’d be sad if my child had stage 4 cancer, car wreck, paralyzed in sports, injured during deployment, fill-in-the-blanks… that led them to total dependence on me. but I’d probably be a little nicer to myself about the condition.
Reframing has helped me (sometimes!) to view our situation as a chance to show love and mercy - unconditionally. As a believer of Christ - it reinforces my gratitude and thankfulness to Him - especially when He still loves me when I’m unloveable!!!
Peace to all of us. -Sando
Oh I hope he comes back! I would love to hear what he has to say. Please come back. I’m feeling sad and hopeless again.
I have days where I almost feel as if this is just the way it’s supposed to be, like God has given me this boy to love and nurture, that maybe I was chosen to be his mom for some reason. I just wish I knew why?? I mean, I’ve never felt particularly angry at being this chosen mom, but it’s kind of strange that my son’s name just happens to mean “Gift from God.” I just can’t get over the past, when things were so sweet and innocent and my little boy … I cry and cry about this loss. It’s so unfair what life does sometimes. I want him to be happy but I can’t make that happen. You know, he’s never even had a romantic relationship with a woman and let’s be honest, he never will. That right there breaks me. This is so lonely. I think my greatest fear is that he could very likely die before me! He won’t have children. Another blow, not so much for me but for him. He and his sister, who is three years younger, are close, always have been, a blessing. My daughter has nine year old twins, a boy and a girl, another blessing, so I try to remind myself there are still joys. But why is this so painful?
My son was diagnosed at 24 shortly after graduating from college , although looking back he had symptoms for a while. We have been through lots of med changes and challenges and he s doing well on this one for 2 years. Building slowly, He has held several different jobs from construction to dog walking and now is trying to get a job in his field.
I have cried myself out but am hopeful that he will find his way.
Perhaps some volunteer services that could reintroduce your loved one to the world - like walking dogs at the aspca or park or stream clean ups would help him get used to being out. It really helped my son to start with low expectations in a low pressure jobby job then grow.
Just a thought as I know although these folks share some responses each is different.
I had debated on replying to a couple of these from a different diagnosed perspective, but I didn’t want to thread-jack. I could create another thread for similar questions if anyone would like.
I have wanted to refer these folks to you, like you, I was worried about “jacking” the thread.
Several weeks ago I had reached out to the owner of the thread. Unfortunately, there has been no reply to my private message.
I think creating a new thread and then linking your reply to different folks inquiries here would be fine. I’m sure all those who posted questions, like me, would be happy with a reply from someone living with the condition, although I should only speak for myself on that.
I think you should see someone who can help you understand better, and that you need to take care of yourself too.
Hello Headspark I wish to ask a question please of you or anyone else who has the answer. Did something happen to you to cause your schizophrenia. And if so do you need to out that thing before you can make progress going forward?
Sorry if this has been gone over before somewhere on this site
@Shaz it’s generally accepted that the cause of schizophrenia is unknown, but it’s highly heritable. There are no shortage of theories by diagnosed and undiagnosed alike, but the combination of unprovable theories and a diagnosis is a recipe for delusional obsessions. In my experience some caregivers can be even more invested in searching for “the cause” seemingly driven to find absolution or culpability for their “guilt”.
Not to say I haven’t tilted at such windmills of blame: be it a bad experience with cannabis in my teens, birth trauma (I was tangled in my umbilical at birth), or searching through my past in psychotherapy for some triggering trauma (Jungian and Freudian theory posits trauma to the psyche a possible trigger). At the end, it all felt like wasted emotional and mental energy leading to a bag of conclusions: it’s doubtful I’ll ever know what caused my disease; mistakes were made all around, and it wasn’t my fault, or anyone else’s or thing’s fault. And even if I did learn “the cause” unless I have access to a time machine— it’s of absolutely no use to me!
What is useful is acceptance of your illness, treatment and forming protective coping mechanisms. All the rest seems pure distraction. I recognize this is a form of grief process and everyone grieves differently, but I feel this is one grief process that can and arguably should be rushed, because no one actually died, just hopes and dreams. My advice to both diagnosed and caregivers is put these impulses to the side and focus on recovery regardless of cause—you have the rest of your life to ponder unknowable answers to these questions.
What a great analogy! Thank you.
Thank you so much for your response I understand and appreciate what you’ve said. The reason the question exists for me is the psychiatrists asked on several occasions if there had been a trauma (of some description) in my daughter’s life. There was none and she denied any. But a school friend told me she had been raped. I don’t believe to this day that has been mentioned by her. So was wondering if that happened and was discussed and processed if that would speed up the healing process. I don’t suppose we’ll ever know and I have to accept this and move on.