New to this forum and looking for advice
Our son Ben is 30, was diagnosed with schizoaffective disorder about 4 years ago then discharged from air force reserves with medical disability. He will not give us a medical power of attorney or guardianship. He went on meds and stopped two years ago. It has been a serious rollercoaster ride ever since. His brain has been living in a spirit world for over two years, it is all he talks about and gets angry about. Currently not sleeping more than two to four hours a night if that. He has been hospitalized a few times in past three years but goes off meds as soon as he can get out. Says he just wants to leave this world/realm and Indiana. Says the spirits keep breaking his spiritual neck. He just did get out of the psyc hospital last week after ingesting a full bag of THC gummies then going into a psyc breakdown. He was screaming that gamma rays were pouring out of his eyes and ears as we rushed him to the hospital. He is reluctantly taking the *** meds they gave him in the hospital, Invega pill and Lithium. It is NOT bringing him out of his manic psychosis. He has a phone appointment tomorrow with a new VA psychiatrist but we know he is going to refuse any suggestions of new meds and so on and try to hang up on the doctor. We hope he doesnt but from past experiences we think he will. I read so many stories of persons with SZ that are functioning and taking their meds and would like to get our sons brain back into this reality long enough to that he can see that taking meds would keep his thoughts out of the spiritual realms. Any advise is welcome. Thank you for reading.
@helloDog3826 I'm so sorry sweetie 🙁 it must be heartbreaking for you to see your son go through this😥 I don't have any advice, sorry. But I wanted to give a huge hug, and tell you that your doing great, you are so strong to deal with all this. I hope and pray oneday he will be able to start taking his meds and get a bit better. He needs you, he knows you love him ❤ and we are all here for you ❤ hugs you tightly ❤
@Tinywhisper11, Thank you for the kindness. I appreciate it very much.
Hello, I hope you are having a good day/afternoon/evening.
Unfortunately I don't know how to help you, but I wish the best for you, your family and your son.I am so sorry for this difficult situation. I hope faith helps you.I really hope everything gets better soon. Thanks for sharing this here and I hope many people help you soon too.
Take care of yourself. A hug
@Zae1, Thank you. My wife and I are trying to take care of ourselves but it is a daily struggle for sure.
Hello again @helloDog3826
I wish you all the best. You look like very good parents. You deserve to be happy just like your son. Thank you for taking care of your son.
I truly wish you all the best, today, tomorrow and always. I hope more people come to this forum and offer you help and support.☺️
I hope your son gets better soon
You sound like wonderful parents. I'm so sorry your son is not well. I hope he gets better, and you're able to still find comfort in the small things. Have you been able to find any specific support groups or a therapist yourself to go over your feelings through this? Sometimes these types of groups are free, and it's possible the hospital would know of some. I really wish you and your son the best.
@helloDog3826 I am sorry for what you and your family are experiencing. Life with SZA is challenging at its best and heartbreaking at its worst, I can empathize. I am also SZA and now have a handful of friends in the community. Multiple hospitalizations, more med combinations that I can count, and oh so many doctors. I can honestly say that I did not reach a stable point until I chose to take the leap and take my health into my own hands. I remember coming out of manic psychosis and just sitting there thinking this couldn't be all my life was. Many that I have interacted with in the community struggle with taking meds. There are so many more often than not and the side effects are not enjoyable. But beyond that, living with a brain that is quiet or quieter, and sensations you are so very familiar with are suddenly gone. That sounds like something you would desire, but in reality living through it is scary and quite difficult. Which may be why he is struggling with meds. Just sharing to help shed light on the other side. But also to say that there is still hope, and I hope that soon you can all find that happier space. much love to you all.
@ChanaliBeth Hi, thank you for the kind words. We hope Ben will get to a place where he begins to trust people again and can interact with others with SZA. NAMI has a peer group that i think he could benefit from but that possibility is a ways a way at this point. If we can just get him through the next six months and stay med compliant I think he will start his recovery journey but i am filled with anxiety that he will fail and go back into the darkness of his mind. Im trying to take it one day at a time instead of making up things in the future that have not happened yet for Ben. It is difficult to keep a good outlook on the future when you have been through so much ***.
Hello,
I'm also am a listener with schizoaffective disorder.
It was a wild rollercoaster for me, I used to be a medical school student but had to drop out due to the illness.
I also was institutionalised and spent approximately 700 days inside hospitals, doctors thought I would never make a come back and my parents were desperate.
At the beginning I did not think I had a mental illness and would drop meds as soon as I could ( also cause most of them did not work), what changed for me was reading a psychiatry text book and understanding that those are actually illnesses to the brain since I've read my symptoms on a medical textbook.
I then found medication that works, being on it for almost 7 years strong now, I'm back home with my loving family ( which has to be understood is a privilege for the mentally ill) , I drive and have worked some job also in foreign countries, up until the point I got disability and decided I would relax home and enjoy life after all the struggle.
I think there can be light also for your son, and I'm not saying that because I want to comfort you, I truly believe it.
I've had many psychiatric friends during the years and there is a visible outcome from people who decided to stop the drugs, stop the alcohol and be stable on medication and people that do otherwise.
If you can make your son stop the use of cannabis and alcohol as soon as possible as that is a big problem that can cause psychosis. (talking from personal experience) and get him to stick to medication , there are a number available and it might take years but you might be able to eventually find something that works for him as well, stabilise him so he can live a normal life for the rest of his life.
I'm available to chat and listen if you want to send me a direct message, just give me some time to answer as I'm Italian so I might sleep while you text me.
I've been active on this site for many years because some listeners saved my life when I was in struggles and one of them would always say " the darkest of time is the one just before the sunrise."
I send this wish of hope hopefully it will resonate with you and your son as much as it resonate with me at the time.
Regards,
@RiverJumper2 Thank you for the encouragement. I'm super glad to hear you have been able to enjoy life and managing your SZA. That is all we wish for our son, is that he to can enjoy life at some point in his future. Thank you for the kind offer to communicate with you directly. Have a blessed day.
@helloDog3826
@PetiteSouris Oh thats nice, thank you.