Family and Caregiver Schizophrenia Discussion Forum

My son has been Recently diagnosed with schizaphrenia

We have had 8 years of hell with our 26 year old son. After many, many times in trouble with the police his last prison referred him to mental health assessment and now he had been transferred to a mental health hospital where he has been sectioned. We spoke with doctor two weeks ago who told us he has been diagnosed with schizophrenia . He has started meds one week ago- we are unable to see him as yet bit can make phone calls
I , as his mum, am struggling immensely with the diagnosis and keep thinking they have it wrong ??
I Know my son has delusions and has lead a very erratic and unhealthy life style , can’t hold down a job or a relationship , self neglects , is very irate and quick to temper - but schizophrenia?
Am I naive? In denial?
I feel so lost, frightened and upset.
Thank you for reading my post .

Thank you for sharing about your struggles and your sons struggles. Your story is like my sons story at the beginning stages. You are right- it feels like a nightmare all around.

My son is 34 and diagnosed schizophrenic. It seemed to start at about 18. Before that it seemed like he was just a overly spunky kid. We had him committed because he became suicidal. The courts dismissed it to out patient services and meds. Well of course that didn’t go well living in a rural area and he was an adult.

Started getting into drugs, in and out of jail. court ordered institutions. He would do well and bounce back at the beginning. But I couldn’t make him stay on his meds. Off and on and off and on. In and out of trouble, homeless.

I noticed each time, with the abuse of his meds and drugs, that the bounce back became less and less.

Fast forward to his age now, he is 98 % delusional.
I fear to the point of no return honestly. Each facility or crisis center, jail, claim to stabilize him and put him back on the streets with no assistance.

Currently the only reason he is at my house, is because the crisis center where he was in another state were going to put him in a facility but realized he had no identification and would almost be impossible for his SSI to be turned back on to pay for it, they bought him a bus ticket back to my state to fend for himself. Even I talked with them, it was not a good idea.

Thinking back now, I wish I would have gotten over the shock and denial that he had mental health issues and educated myself more. There weren’t as many resources as there is now a days. It may have helped me to help him better.

I wish you strength in this journey. Just know you are not alone. After reading many comments, those comments are my stories as well.

Thank you for your reply .- I appreciate your words .
We have known for a long time that my son is ill and needed intervention from professionals but he won’t acceot at all that he is ill - we tried everything to get help for him. We were forced to sit and watch and wait until he did something criminal and be arrested. Living with the fear that he would either seriously harm himself or someone else on a day to day basis because he would be paranoid and so he would drink and smoke cannabis soooo much and steal and sell his things to do so then be so high and delusional he would walk into traffic, over railway tracks , shout and swear in public, he has been beaten up many times and hit by cars twice - he would sometimes get straight and appear to get a grip , find work, have a girlfriend, but always it went belly up we begged for intervention from every agency we could think of but were told if he won’t accept help there is nothing that can be done. He was a walking time bomb with paranoid delusions which I naively thought were from his excessive cannabis habit - he fired an imitation fire arm at his neighbour six months ago - he was remanded in prison
I wrote a letter to the judge saying that I truly thought that if that gun had been real he would still have used it - then started the assessments and psychiatric reports etc
A hospital order has now been ordered ( we are in UK by the way) and he has to spend his ‘time’ in a hospital receiving treatment - he is struggling so much as he still believes he is not ill -
I have been told he will get well ?
I feel guilt now on top of everything else
I won’t share with other family members as they are judgemental. It’s a very lonely place eh?
I have been told he will be there the rest of this yr. He has nowhere to go once released as he his tiny flat has been repossessed by the council (state authority housing). I could never have him home as I have two younger sons who have suffered enough through it all
I can’t even think past the hospital - I suppose I am praying for a miracle g

I hope you and your son find some answers - some respite and some peace x

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Wow, your words are the same as mine 100%. Not to be religious in anyway— but this helped me to keep strong with things out of my control.

God, grant me the serenity to accept the things I cannot change,
Courage to change the things I can,
And wisdom to know the difference.

Thank you - it’s so hard not to be suffocated with it all but I certainly am trying my upmost most of the time rise above it all x
Hope you are doing the same x

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Thank you for putting into words what it feels like. Feeling suffocated by it all is so true.

The sad part of my story is, my younger son, who is 32 had a breakdown about 8 years ago. He never quite recouped from it. He walked away from his entire life and lives homeless and wondering the earth alone. Stops by every so often. Then takes off again.

After going through all the emotional feelings, which I shared with others and family, but yet still feel alone, I am closer to finding a way to live with the fact they are adults and not my little children, who I was to protect all of their days. Their lives are theirs.

THANK YOU! I must always remember this.

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This sums up my feelings so well. My son will always be “my baby” in some ways. But I think about my relationship with my own mother. I love her dearly, and want her in my life, but I don’t expect her to tell me how to RUN my life, and would resent her if she did (she doesn’t and never would).

Coming to this sort of relationship with my son is hard because (a) he is young, and we were only JUST getting to this point and (b) when your child is unwell, the need to jump in and protect is much stronger. Nevertheless, I am trying very hard to come around to understanding that he needs to come to his own conclusions, and if he doesn’t do the things I want (like go back to school, etc), that is his decision and his life.

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Isn’t it an amazing enlightenment when we are able to share our stories, emotions, and traveled paths.

Just to be reminded we are not alone, when most of the time we do. It’s okay to talk about it. It’s okay to ask for help.

Just a reminder that we are doing the best we can with what we are capable of at that moment in time. Some days I surprise myself with how much I can carry on my shoulders.

Even though at the beginning with my son— I questioned, what did I do wrong? What should I have done differently? Was I a bad mother? Laying all that at my feet. To finally come to that one conclusion, when my broken heart survived, my tears dried up, He is still finding his path whatever that may be and I will continue to hope the best for him and love him with all my heart.

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I think we all agree that we can’t change anything really , I too will continue to love my son and share his burdens - thank you both for replying .
You are so right that just knowing others understand and get it and that you are not totally alone in all this is a comfort x

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So my experience with the health system to help my son.

So just a recap of background. He is 34 delusional schizophrenic- homeless, past around from stare to state in jail or facilities. On and off from meds. I imagine drug us out in the streets.

Hadn’t seen him in a few years. I get a call from him in a jail mental health crisis center 2 weeks ago. They asked questions and manages to get him to sign a release of i formation for me.

So the case worker was saying they were doing to put him in transitional center- supervised. I thought great- maybe there is help for him.

Well after they realized, he had no valid state id for that state, his ssi got shut off and no as card. I talked with his case worker and said the board decided to buy him a bus ticket to my state. They were sending a referral to the hospital. He would just need to go to urgent care and that’s it.

Okay, so this is how it went:

For one- he is delusional, shipped on a bus for 4 hours. If we weren’t here, he would have gotten off the bus at 11 pm with nowhere to go but the streets far away from the hospital they expected him to go to for more meds, which he only had 7 days worth of.

So picked him up. Realized how delusional he was. Made plenty of phone calls to the previous place in another stare as to what I am supposed to do.

So called and spoke with a great supervisor that says they are not taking on new cases. But she will help us. She said to wait until 4 days later to go in because they would know where to find her notes in the system. I said, no way, he only has 1 pill left and will not go without, since he wasn’t stable enough when he got released.

So made it in before opening time and we were 4th in line. Thought, great, won’t take that long! Wrong!!!

We have to go to financials to sign up to pay for this. They could not find the notes from supervisor.

Okay financials at other end of hospital went fast. Then went back. Waited waited waited. Got in finally. They soon realized he’s not stable. He was getting frustrated because they were asking me for the real answers to the questions, since he talked incoherent. Thank god he only turned me into a stone statue once that day.

So they were doing to see what they could do to maybe keep him. Came back in after lots more waiting. They upped his injection amount to double, and will refill his other 2 meds. They said, go over to pharmacy for the 2 pill meds, and take the injection box to the other building to get him the injection.

The pharmacy said sorry, we have to wait until his financials get completely approved for the injection. :roll_eyes:.

So went back to the clinic. Told them and they would check to see if they could do something else. They said no after we waited and waited for an answer. Then they said, well check back on Monday or Tuesday for the emergency approval.

So end of story, 5 1/2 hrs later, we made it home. He was so wore out he slept for over 24 hours and I was exhausted and lost out on a day of work again. If I don’t work I dont make money to keep my household afloat.

And honestly you wonder how a mentally challenged person like my son is supposed to do all this on his own when he is delusional and not stabilized yet.

I get told to be his guardian by the doctors all the time. It takes money, it courts, and it’s not like you just can take people rights away so matter of factly.

But, let’s get real for us that have stepped up to the plate to be the adult to help other adults to keep their lives on track. What about our mental well being? What about our financial burdens? Who is here for us? Why can’t it be easier to go through the processes?

Sorry, just venting at this point. Waiting for his ID to show up to get his ssi turned on so the programs will maybe help him or he just wonders off again to another state.

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My son will soon be 40 and as someone had mentioned in this thread, a mother always looks at their son as if they are still that young boy.

I had guardianship at one time, which I really did not want to be but the psychiatrist at one of the hospitals didn’t want to go through probate to keep him hospitalized. He gave me the required expert evaluation so I would file for guardianship. The doctor told me that my son hit him and he was going to press charges if I did not get guardianship. As time went by, in and out of hospital, the medical staff was able to talk to me and I was able to give them authority for whatever treatment. However, today my son is now under a county system, AOT team and that psychiatrist felt that me being his mother and guardian is hindering his recovery. So I was not able to renew the annual guardianship, which in a way I was relieved. My son was recently in a hospital for 2.5 months and was just transferred to the state hospital. I haven’t been able to receive any information from the AOT team.

Yesterday I attend a seminar for caregivers. The key point I got out of that seminar was a Patient-Centered Goal. I learned it is very important that the patient has input into what he/she wants. However, the patient can not relay this without the help of the caregiver to advocate for him/her. So last night I wrote a lengthy letter to the AOT team with a history of Michael prior to 2015 before he has had over 30 hospitalizations, his medication compliance in the past, and the three incidents that prevented him from getting his medication that was beyond his control. Each time he became more and more delusional and non-compliant with medication. I prayed that the director of the AOT would acknowledge that she received and read the document. She replied within a few hours, thanked me and asked if she could share with the team. I took this as a positive.

I realized that putting him back in the group home, which he has stated on more than one occasion is torture for him. I was ignoring his request until I learned from the seminar. My son will be 40, the group homes (he has been in two) are majority of young men. I pray that they will be able to work to get through to my son so we, which is my son, me and the medical team work together with the goal of him having his own apartment. My son first got sick the beginning of his senior year in college and he did finish and got his architect degree; worked 13 years, got married and had a home, and always was medication compliant. In 2015 his psychiatrist switched his medications.

Thanks for your continued sharing. It helps to read what others may have done to help their son/daughter or family member. Which can help with avenues to take for us who may not know.

Yeah, I realized each time they switched my sons meds, he had gone downhill. Granted he himself has not stayed on them faithfully if he is not in a facility or a group home. When he was in a group home, he did amazing and the staff and other residence had wonderful things to say about him. But then they just put him out into out patient where he can not stay steady with his care.

I am vert sorry that you are going through this. My wife and I have experienced about the same situation. Our daughter is now 35, and was diagnosed with schizophrenia about 4 years ago. We have dealt with so many problems the last 9 years that are similar to yours. It is a long tuff road for all of us. My prayers are with you, and your family.

Welcome Redblong to this helpful forum.
I feel for you and understand the frustration. My son is almost 30 and living the same kind of situation. IF he gets into trouble again, he will go to prison for quite a while, the county is aware of him as he has been at their office many times complaining of being harassed, followed, etc. Thinks there is a GPS planted in his ear so they can track him. :frowning: My son is Anosognosia, I believe your son may be as well? Anosognosia (lack of awareness that he is sick) with that being said, it makes everything much more difficult as they will refuse meds due to they are not ill, so they believe. So many things mimic this illness so I understand your reluctance to accept it. It is heartbreaking to say the least. I am glad I found this forum but sorry we are all dealing with this devastating illness that makes NO sense.