Sad and don't know what to do

Hi - my son was diagnosed schizoaffective a year ago - nothing has changed other than taking meds - not always consistent - He has been in the hospital twice however I have had to call 911 at least 10 times during the past year. I am presently staying at my mothers house as he is up all night - I can’t live being up all night and all day. I feel like I don’t know how to help him and am at a point where I don’t know what to do - he believes the voices he hears are real and says he recognizes them as friends from his past and sometimes tells me that I make all this happen. He has been given opportunities to go to group therapy outpatient therapy psychologist yet all he does is go to the psychiatrist once every couple of weeks. He is 25 years old and I am so very worried about him. I don’t know what to do. When he first got diagnosed I had all kinds of hope but right now I don’t have much hope left. Any suggestions would be greatly appreciated. Thank you.

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Hi, my son is 27, but I’ve been dealing with this since he was 15.

If my son stops sleeping, he goes off the deep end - and quickly.

Does his doctor know he’s not sleeping?

If he doesn’t, make sure he does - you can’t fix anything until they start sleeping. It’s the first thing I watch for - one night, it’s OK. Two nights, I’m calling someone. Three nights & I’m just waiting for him to get sick enough he actually asks to go to the hospital.

When I say not sleeping, I mean 0 sleep or only an hour or two every few days. My son’s last hospitalization, he got less than 16 hours of sleep in 8 days. The 3 before that, he told them he had been up for 5 days straight.

It’s not that he doesn’t want to sleep - he gets racing thoughts that won’t let him turn off.

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Thank you so much - I really hope at some point things get a little easier for everyone

My partner is also Schizoaffective. Get him committed by a judge for a few months in a hospital. Make sure to visit and call. Take care of your own health as well.

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Hi @hdk, the best advice I received was: lower your expectations.

Also, try to keep everyone safe. Sounds like your local authorities are pretty decent if you called 911 ten times and things went okay.

It’s really good he will see the psychiatrist; hopefully that will be the way to healing.

Best to you and him.

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Thank you - lowering expectations is great advice and yet it still means (at least to me don’t give up hope). Thanks!! I am feeling better and more positive today and grateful for this site☺️

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Absolutely do not give up:)

Our expectations beyond safety are not helpful to young adults. It’s really important for us to support their personal goals and expectations for themselves.

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With schizoaffective, is there cognition decline and negative symptoms like in schizophrenia? I’m just not as familiar. I know there is mood disorder in there too, Where Sz is a thought disorder. If there are negative symptoms such as loss of motivation, apathy, no more interests that were previously part of their lives, no friends anymore, all that stuff is what hit me about a year after my son’s dx of paranoid Sz. Once the psychosis is, hopefully, under control and there is drug compliance, at first we have a sense everything might be okay after all. This is very general but the story is very familiar. But then one day --this is kind of how it happened for me – one day I started thinking he isn’t really doing anything. I mean, he ISN’T DOING ANYTHING! I started researching. My research led me to understand the very sad facts that still just tear me to pieces! I don’t have that much advice for you other than love him, try to protect him from others who may try to take advantage, keep yourself safe, and learn everything you possibly can about his mental illness. Join forums such as this and try to find empathy from people who understand what you are going through. These are some of the things that help me. You may come to accept that this is it, it may not get much better and pray it won’t get worse. It’s not that you have to give up hope, there is always hope I’ve been told, but it is a very long process. You can’t push him too hard. He’ll become frightened as my son does or angry and defensive as I think you said your son does. No matter what, though, keep trying little things. Baby steps. I’m sorry to say the sadness will probably never go away. But you know what? That’s okay. It’s good to cry. Toxins are released with our tears. And the sadness for me keeps a fire lit so that perhaps someday, when there is a huge breakthrough, perhaps my sweet grandchildren will not have to suffer the lonely isolation of severe mental illness, maybe I can even actually be so knowledgeable about this illness that something can be done to nip it in the bud, I’ll maybe recognize it coming. Sorry if I rambled. I’m probably off topic too.