Hi, Im new to the group but have been reading posts for about a week and have already felt that I am not alone in this battle. I’m 65 and my husband is 64, retired, and our son with schizoaffective disorder is 36. He had his 1st psychotic break about 10 years ago. He is psychotic now and has been for almost a month. Medicine is not working. Hospital changes it and still not working. We are in a small town and the local metal health hospital says they are not equipped to help him. I live in TN. So he usually gets sent to Mocassin Bend in Chattanooga. (4-5 hours away). My heart is broken seeing my son regress and become like an 8 year old child. He is also paranoid and that has made him violent with staff or patients at hospital.
He thinks we are not who we are. He forgets who he is. Delusions galore.
My husband took him to ER this morning after a terrible last few days. He has been committed but I dont know where he will go this time. Here is my problem. The last few times he was committed they sent him home still psychotic. We cant take it anymore. We are old and feeling much older than we are. His siblings think he needs to live somewhere else but where? He cant take care of himself. I dont want to lose him to homelessness. We are thinking of telling the hospital that he cant come home. But the thought of saying that breaks my heart. I dont know what to do or who to turn to. I worry too that his brain is so damaged by the meds and the disease. No one wants to do a brain scan. We dont have enough money to send him to a really nice place. Honestly, I just cant take it anymore.
@TeresaS I am sorry to hear what you are going through. I am 55 and pretty much on my own with my son. It’s financially rough but we manage. I hear you about the age thing as I am very concerned what will happen to him when I can’t take care of him any longer. I have yet to make good plans for that. I am just trying to make a stress free, quiet space for mine and make food available for him. He is more on the quiet side and like you said - like an 8-year-old child. There are many more people here who will have good ideas for you. I just wanted to chime in and say I’m sorry you are going through this. Is he on disability?
Diane, Thank you for your reply. I know what you mean, I worry about that too. My son is on disability. We have tried to do the same, keeping a quiet place with food and support. This is the only time when we became scared for him and ourselves because he starts thinking that we are not his parents and thats what gets scary. When he is not paranoid we do pretty well. This has been the hardest time. I wish you the best with your son and thank you for the welcome.
@TeresaS - Can his disability $ help with an apartment or do you think he couldn’t live on his own? Maybe you could stop in with food? Here, in CO, someone on disability would likely have to get section 8 housing to afford to live on their own. I don’t know if it would help but just a thought, have you tried showing your son photo albums if you have them? Maybe then he may see you in the photos as his parents. My guess is that in the state he is in he wouldn’t believe the photos. I am just at the beginning of all of this really so I don’t have a lot of experience with the psychosis part yet. I do tell myself if my son gets violent I will call the police or kick him out but I’m not sure if I could actually do that if it came down to it. You are in the right place here on this site. More people will chime in with advice. The forum tends to be more active during the day in the US. I think a lot of folks are from the UK. My son is not on meds but he drinks a Chinese herb tea (a doctor had to do the mix) It seems to help a bit. Hang in there : )
Yes, same here, basically there is nothing for them to do that can help him…
Many here have separate living arrangements, house/garage/trailer/RV out back of your place… I have two homes 45 minutes apart…
Don’t waist anymore money on facilities or hospitals, do the Docs and meds and if they do not work or he will not take them don’t waist your money on them.
Your choices are very limited: eviction process puts him on the streets. If you cant place him out back of your home or convince him to live in a group home you are pretty much screwed like many here… I feel for you and I am in the same boat in terms of old age and inability to be fully engaged to help them.
You could try Electro Shock Therapy if he would agree…
I have started to drink, never have before, considering smoking pot… for me everything is a cost benefit analysis in terms of docs/meds/facilities/housing and all the shit that goes with it…
I have a pretty detailed after my death plan… Do yall?
I was born in Erlanger Hospital Chattanooga…
Hello, If I were in this situation, I would go to the hospital where my family member is admitted, once I found out.
I would ask to see a social worker, tell her or him who my family member is, and that as much as I wish I could commit to bringing him home, I can’t do it because the last few times he came home, he was still psychotic. That the last thing I want is for my family member to be homeless, but I can not take care of him. Give examples of why this is the case. Then, ask the social worker what to do and what to request from the hospital.
Also, there should be a social worker at the hospital where he went to the ER. Maybe you could talk to that social worker as well.
Maybe a halfway house or group home for six months to a year would let your son stabilize on the right meds. I hope they can find a way to treat him and that he can be stable enough to live in a group home, a Section 8 apartment, assisted living, or something similar.
I agree that you cannot keep putting yourselves through times of severe psychotic symptoms and maintain your own health.
GSSP, on that detailed plan, would you mind sharing. I’m assuming you have a lawyer to implement. We have set up a trust but the gentleman at the bank who assured us he would see that our son was taken care of is no longer there.
We have a family member who said she would serve as executor but she is older than I am and has never had children and I’m questioning that decision.
We have guardianship and our son was living next door until he bag an saying he had died in a fire there. We have had him staying here for awhile hoping to see a doctor this week. The day before he had to be taken to the hospital. My husband drove and I had CIT officers meet us there.
He might be in there awhile this time. Who knows though.
Getting back to what I asked earlier I think I’ll start a new subject of after care so we can share with others.
yep, trust with assets and cash but no one to oversee it… Sucks… I have been trying to just spend it up on me but Trump has made that difficult…
I have been trying to just spend it up on me but Trump has made that difficult…
How so? Do you mean spend your money while you are alive?
Would you trust a bank to oversee? They are leaches but where else can you go? Family? Friends? It would have to be some young person, who is honest. Yes?
Run it through a bank with a co-trustee you choose and trust protector you choose… Our NAMI group hosted a presentation on special needs trusts.
I think housing is a huge concern and I like the idea of buying a place for our family member if that becomes possible.
I’m taking donation😊
I am making more money then I can spend… About to do another long trip, haunted hotels in KY and NC then up to Erie PA and over to Niagara… I want to see snow and run my RCs on Lake Erie Ice…
yes
Family bastards, Yes, Yes, Maybe my daughter can find someone to move into our home before I am gone… I have encouraged her to try now… she is almost 25.
Thank you for the advice!
An important topic, please do.
Thanks for the ideas. We had him in a downstairs apartment but when he is psychotic he is afraid and wants to be with us.
But I do think the disability income will help. Right now he is still waiting for a bed.
This happened both times my son was in the psych hospital. In my community there is a facility where people discharged from the hospital can go if they have nowhere else to go. I found out about it through county mental health staff, who said in order to get him into the post-discharge recovery facility, I would have to tell the hospital my son could not go home; had nowhere else to go; and would be homeless, gravely ill, and victimized if discharged. I almost got ill thinking I’d have to say that to anyone.
Then the staff person said that there’s a lot of drug users at the discharge facility and it’s not really a good place to be. Great. Drug users and my son dual diagnosis with pot sending him into psychosis if he’s not already there and into deeper psychosis if he’s already psychotic.
So, his father took him in for the first two weeks post discharge, and he came to live with me afterwards. Both me and his dad fear the next time he’s at the psych hospital, and I just have to remember how awful it must be for our son and that I need to stay strong for him and for me. I’ve thought next time around that I am not above telling the hospital what i need to in order for them to keep him longer, for his safety and the safety of others.
TeresaS, is there anything you or a social worker can do to keep your son in the hospital longer? Any post-discharge facilities in your area, that check out ok? Emergency mental illness housing? I’ve only found resources, limited though they are, through persistent inquiry. And still, the resources for our loved ones are so inadequate. My heart is with you.
I want you to know you are not alone. Our son never has come out of psychosis. Luckily he is not aggressive. He talks to God and believes he is an angel. I guess that psychosis could be worse. I also understand your financial situation. My husband and myself are both retired so between money and just being older this whole situation has proven to be financially and emotionally debilitating. Our son is finally on SSI which has helped. We have yet to set up a special disability trust for him but we are planning on doing that after the holiday. I don’t know who will be in charge of that or how it works so I would like to see a thread on that also. Our daughter does not want any part of this because unfortunately his disease has completely freaked her out. So much for relying on family. I have prayed, I have lost faith, I have regained faith over and over again. Our hearts are broken for him and I must be honest our hearts are broken for what we had planned. I agree this has been the most overwhelming heartbreaking situation ever. We are not sure either where he will go when we are gone. Still trying to figure that out. Take care of yourself through this. Make time for something that makes you happy. It’s essential.
There’s a current thread “After we’re gone, what then?”
Mbw, you have put into words our exact thoughts and situation. We are now four years into this and somewhat have accepted that our lives will never be the same. I am praying science has a solution on day hopefully in our son’s lifetime. God bless you and your family.
I can only offer support and hope that things improve for your family. My daughter is 10 but we may one day be in the same situation, if she survives to adulthood in the first place. You can only do what you can do and hope it’s enough. Hugs!