Family and Caregiver Schizophrenia Discussion Forum

Just when you think you have it figured out

I live in another state, so I understand. You can request the injecrion… he would have to start out on the monthly invega sustenna and then graduate to the Invega Trinza. My son is the same way he won’t dale any pills. Terrible hygiene…its heartbreaking…feel free to email me vlgregg58@gmail.com if you want to. Is he on disability?

Yes. He has been on disability for a few years. Every once in a while he has tried a work period but it always increases his paranoia.

I understand there is no cure and that meds don’t always work as we would like, but am hoping we can find something that just moves the delusions and persecutions to the background so he can function. He was using CBT tools and doing ok, but a couple of months ago, things got worse and instead of agreeing to again try meds he chose to self medicate with alcohol. His alcohol tolerance is unreal. Whereas I would pass out and wake up miserable with even a fraction of what he manages to drink, he just gets more delusional and hyper.

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So I am at a new point in this journey…and I am not liking it.

Talked to son’s attorney and the forensic psychologist. He is safe in jail. He has been deemed incompetent. They will route him into the county mental health system. All this is good…

Then the bombshell. It depends on the judge. He could order treatment to begin while still in jail and then reevaluate. Or they could keep him in jail untreated and wait for a bed to open up ….in the forensic psych hospital. The hospital where criminals who are deemed incompetent. Two hours away.

Yes he needs help. Yes he committed a crime-misdemeanors for which jail time if not incompetent would have already been served for the crime.

But he will no longer be isolated and some of these people are much more damaged. Do I sound judgmental? I hope not. He needs help but he is naïve in so many ways. He is vocal about the oppression and has a bit of a Robin Hood delusion going on but pretty benign when interacting with others. When self medicating by drinking he is belligerent, but as he is in jail he is stone cold sober. He laugh inappropriately (due to what his going on in his head) has trouble focusing and links all kinds of random things together but is not dangerous.

For the first time I am really worried and scared for him.

Hello @thereisalwayshope and all of you. I think most of you are familiar with my sons circumstance. My son Lou has been back and forth between the judicial system and the state hospital where he is also forensically commited. He receives proper medication and treatment while at the state hospital, when moved back to jail for competency his medications are not manditory and he’s allowed to decompensate. Which is rough. But the attorney does this for a reason, so that he can be diagnosed as he really is. I am really thankful, there are many concerns for our son. The state hospital (CA) has been very kind and he is treated well, and the other patients are of similar situations. I hope this can ease some of your concerns for your son.
Take care, AnnieNorCal
Edit: the really dangerous commitments are kept separate from the rest of the patients, or so that’s my understanding. And new patients are not main streamed they are put in transitions before in groups. Hope this helps

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Yes it helps. Thank You!

In general he lives in fear but most of the fear is people spying on him. But if placed in a situation where there could be real tangible fear, well, I worry.

Hi , hope all well , i will be applying for SSI for my son , what is EBT ?A&B ? supplemental health ? This disease is financially drowning me .

EBT-electronic benefit transfer also called food assistance/cash assistance. He could be eligible for cash assistance while waiting for the SSI benefit to start. If he gets SSI he probably will be eligible for Medicare part A-hospitalization. Part B is for other medical needs. Sometimes Medicaid will supplement or pay the part B premium. Contact your local Department of Health and Human Services–they can help with many resources or point you in the direction. Some case workers are more helpful than others.

You are right–this illness along with the emotional rollercoaster can be financially overwhelming.

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Hi, I tried to respond to you last night. You can email me, but please email me from your email. It makes it easier to talk. vlgregg58@gmail.com

If her son worked he is entitled to SSD. My son gets 780.00 a month. SSI is about 440.00 a month, if you did not work. My son gets Medicare A & B (this comes about 2 years after you start getting SSD), he also gets 200 a month Foodstamps, and he has supplemental insurance through the state. He lives alone, drives and has a family that is 110% in his corner. He’s 10 years post diagnosis…he cannot manage his money so I do it for him. He has a debit card in my name so that I can give him daily money. His routine is go to the gas station get cigarettes and a sweet tea…I’ve got 10 years of this under my belt…its not easy, but anyone who needs help or pointers please feel free to contact me. I’ve learned a lot. If you or anyone else has anything you would like to share I would live that!!! This Forum is awesome. I also want to add that 9 times out of 10 you will be denied for SSD the first time…just appeal it. It’s frustrating, but you will get it.

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Just to chime in if they qualify for ssi alone, or in addition to ssdi, in many states that qualifies them for QMB - Medicaid will then pay their Medicaid premiums and their A and B copays. Some states make you apply for QMB, other states give it automatically.

I hope he gets a good judge. My family member did and was still in jail almost a year, but received medication there and some protection in that they moved him around when he was being threatened.

Good judges are like a miracle; I am praying your son gets one.

Maybe have his lawyer suggest that he starts treatment ASAP and goes to the hospital as soon as a bed opens. My family member never got to go to the hospital from jail, but after jail was placed in a court-ordered treatment program and the program helped immensely.

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Thank you. I hope he gets a good judge too.
Based on his current delusion of the oppressors and the oppressed, I think waiting to send him to a hospital first will intensify the oppression delusion. He sees hospitalization as part of the oppression. Will try to talk to attorney about starting meds now, but last time he was not to optimistic.

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Is it just my thoughts or do we never get a situation where the decision is easy? Really hoping this goes well for your son.

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What?!?! You mean there are easy decisions out there? Must have missed that day. :slight_smile:

Thanks. I have been fussing about where he is and just realized he has services he is paying for but not using and I should probably shut them off. One more thing to do in my never ending list. All I have to do is locate the user ids and passwords. Am thinking tonight it will have to wait and I will enjoy a glass of wine.

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Really good decision;)

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Not aure what state you are from. California takes a long time to process patients and then waiting for an opening at the state hospital takes time. The process can take up to a year. it’s so hard to wait, especially while our loved ones are suffering. It sounds like you have contact with your son?
Thinking about you, your family and your son. Keep us informed.
AnnieNorCal

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Michigan. And it appears it is not a fast process here either. I do visit him weekly and send postcards. He seems ok during our visits and that is bittersweet.

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How’s it going? Just thought I would check in.

Thanks…it is not going well.
The system is so broken. Can’t help them because if will violate civil rights and can’t work with mental health people because of the HIPAA monster.

Social media is sometimes helpful…like this forum. Other times it is just one more way for us to beat each other up…“I have a video or pics or text of…” Often out of context. So CPS is involved. I am grandma so have to watch what I say and do because if I defend my son, I an enabling, but if I point out concerns I have for the other side (you can be “normal” and still do some pretty crappy parenting things) I am in denial and being vindictive.

My son is mentally ill, but that does not make him a bad parent. He loves his children and takes good care of them. Although he is anti medicine he made an appointment to take them to the dentist as it had been over a year and even took them to the follow-up for fillings. He went out and bought mouth rinse and makes sure they take care of their teeth. He fixes meals they like. He may prefer his bathrobe, but he makes sure their clothes are clean. Yes he talks to the TV yes he rails at injustices but that does not define who he is. He is also kind and loving. Just like a parent with any other chronic disability there are bad periods.

No one is listening to the fact the illness is steeped in fear and rejection. To say you are a bad parent and taking away his custody permanently will simply reinforce his persecution delusions. And maybe this time not so delusional. Then all the bureaucrats will walk away and I will have to put the pieces back together.

Yes our LOs need treatment. Yes they still must be responsible for civil behavior. But they also need compassion and understanding. They are different than ‘mainstream’ but they are still human. The stigma is getting to me.

Thanks for asking…hope you aren’t sorry you did. :slight_smile:

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Never sorry. We need to be able to have this forum or we would all lose our minds. I know I would. My friend has a son that is autistic…I’m sure he has some schizophrenic tendencies. She lives in Texas and can get no help…nothing…its mind boggling how many cases of mental illness that are out there. I never knew until my son was diagnosed. I will never forsake him. I may have to live until I’m well over 100, but by gosh he will be taken care of. Missouri has its crap together. I’m so thankful that we were there when the walls came tumbling down. There are resources, some States better than others. I may take a day or two to respond, but please always feel like you can reach out. Hang in there and keep loving your child.

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