@Laz I’m wondering if you could compile a journal (e.g. history) of your loved one’s history so that the next time the police come or he goes to a hospital, there could be a case to detain him or keep him longer, especially if he has threatened harm to himself or you or you are fearful in any way. Also, what do you know about the clinic where he was being seen? You can give them feedback on the side effects you are seeing, even if they cannot share info with you due to HIPAA. Of course, since they have turned him away, that is no longer possible unless you want to make an issue of it. There surely are other issues or they would not have sent that letter for just one missed appointment. Would it be better to find a different doctor/clinic? If you are not already involved with NAMI (National Alliance on Mental Illness), I highly encourage you to find a chapter in your area, or call their office in your state, if there is nothing local. They compile some resources and can offer advice in certain situations.
Be sure to take care of yourself! Get extra help if you need it.
Laz : I also have a disability, MS. It did make dealing w my sz husband all the more difficult.
Thank you for your support. I have been on this road 13 days short of 40 years. It was never ever this bad. On and off meds but not this long of non-compliance. He was on a 72 hour involuntary hold. Nothing. He refused treatment. The hospital set up an outpatient appointment and he didn’t go. So now …day by day his apartment is being emptied and the storage room filled. Stupid me…I helped him get a better car because his truck was not safe to drive and I was hoping he was going to get some help. I was manipulated again. I guess it was just wishful thinking on my part. So I helped him so now he can run away from everything or at least he thinks he can.
I fear once he leaves the voices (I personally think that they are demons) will totally take over and that is what scares me. It is going to follow him wherever he goes. There is absolutely no reasoning with him. Makes me so sad…I used to be able to get through and he would trust me…not anymore…not anybody. 
My daughter went to CA from FLA for almost 3 months. She told me that “they” (the voices) were in CA too, she was surprised as she thought they “beings” talking to her were only in FLA. She just can’t even comprehend that the voices are in her head.
I am sorry that this is the worst he’s been in 40 years. Wow, such a long road for you both.
Even after all of these years i still get upset hearung him tslk to himself and answer…sometimes argue with the voices outloud all about me and it never anything goid or positive. I calledlife look ine agai in my area again but short of calling the police there is nothing left to do. He said thst he cant slerp in his apartment because there are caneras and people walkjng in while hes sleeping. He sleeps with 3 nightlights on. Still no sleep.
I stayed the night last Saturday and i was sound asleep. I thought maybe we both could get some sleep. I was awakened by him shouting my name telling me how upset he was with me and stsrted all over again. Ugh!! Now hes back to sleeping in his car with the windows up and the days are very warm. He doesnt care. Said he belongs to jesus. Oh… and he has his own version of the bible as he sees it. So even after all of these years i am at a stop but not wanting to give up on him either!!
Yes, of course you get upset. Because you care. I totally understand. I am trying to get less upset, and to get more sleep. I’m being successful I think. I hope you can too.
I may sound like an old record as I have mentioned this in various posts on this site, but have you read the book “I Am Not Sick; I Don’t Need Help”? For a person who does not see himself as being sick (as 50% of persons with SZ are, all or at least in part, according to my NAMI Family-to-Family class leader, this is the BEST way I know to help the person take meds. In a nutshell, you learn to speak in a way that acknowledges HIS thoughts, and then come up with a reason to take meds for reasons HE wants, not because he is sick. Another way, and I realize this may not be something everyone can do, but our son has been told he cannot live at home because I know it is not in his best interest. So he has to be medication-compliant in a personal care home for mentally ill persons where he is living right now. Our son is aware enough to know that he doesn’t want to go to a homeless shelter and he has no car or financial resources.
Our son is 3+ weeks now out of hospital and in a personal care home specifically for MI with a priority for SZ and BP. Unfortunately, the illness got worse in that now he has Formal Thought Disorder (FTD) which for him includes derailment of speech (his verbalized thoughts don’t connect) and writing (such as text messages) in “word salad”. We visit him at least weekly as it is about an hour away. He is still getting outpatient ECT in hopes to prevent another catatonic episode. He is on meds, which is amazing because he has never been med-compliant, but the illness is worse. But he knows us and other people, is still very loving and caring, and actually, is fairly talkative…it just often does not make sense. I can see his personality, and he still has a sense of humor and responsibility (he gave me $15 from his “allowance” saying he “owed” me), and he helps the staff bring in groceries, wash the dining room, etc. He needs a very caring, watchful environment, and this is it for now. It will take time to see how meds are working before any changes can be made. I have read that talk therapy can also be helpful for a person with major thought disorder. It is very sad because he really can’t communicate well with anyone right now. It appears he can’t read well, either. This is why I go to NAMI support group meetings and I am on this site!!
@hope4us You have done so much for your son and it seems like he is better than when he was in the hospital. I hope he continues to improve. It’s very sweet that he is helping with the groceries and chores. I’m glad he is in a safe place.
I agree that this is better than homeless living out of a car in the middle of the winter hundreds of miles away and better than catatonic and not eating with an NG tube in a hospital! We are thankful he is not hateful or aggressive. So many others have to deal with those things. But his illness is very serious. Now we just have to be patient and we pray a lot! I’m grateful for the information and support on this Forum!
Don’t give up hope! As we often have seen, the illness can change over time. Is the car in his name or yours? How is his apartment paid for? Does he have assets or income (not to be nosy) but this can certainly influence how this plays out…
The car is in his name. He pays the for his apartment. I was helping until right after i would pay bills he would lock me out. He doesn’t have any assets and he had some money saved up but in July he apent over 1000.00. Lifelock… he doesnt even have credit. $900 phone.I used to take care of all of hia billa. He has been doing them and its a mess. Still packing…my heart has been broken so many times that i dont think it will ever heal.
@Laz I am so sorry for the heartache you bear. You have tried so hard to care for him but we cannot fix everything. I have learned that persons with MI tend to be very resilient and can figure out how to survive.