Hi, this is my first post here. I’ve been reading your stories and so much is relatable. My 25 year old son dx with schizoaffective disorder. The most disturbing symptom is his delusions of persecution. He can’t live with anyone because he destroys property and makes people nervous. Currently in a studio paid for by me, SSI and his dad. No work, no school. Must whisper at all times because the neighbors are listening and recording him. Barely leaves the apt. Thinks I am in cahoots with the neighbors at his new place and the last 3 places he lived in. He refuses all medication. I’m sad all the time because I feel helpless. He is in distress 24-hours a day thinking people want to kill him. Several hospitalizations after 911 calls but it never helped as he stopped meds as soon as he left. Thanks for reading.
Dear caringforhim, I know well that story and I’m sorry it’s not a pleasant experience, yes it’s sad, uncomfortable and painful as well as hellish sometimes, I’d say it’s a nightmare for everyone concerned. Our son DX was also squizoaffective disorder, the lasts years seems like a paranoid sz; it’s been many years since his last job, many years of his last attempt to go to school after repeatedly signing up for the same course and not attending the class. He has gone unmedicated so many times landing at the hospital after getting in trouble but since anosognosia (lack of insight) is the main trait of this illness he’s very resistant to the medication.
He’s been on his own in a low income housing but evicted because of the damages and destructive behavior; last year he went to rent a hotel room for a month and it was a disaster; after a few days there he had to be moved from the 2nd floor to the first since he clogged the sink with his hair, then on the 1st floor he broke the window so I ended up paying about $900 in damages right there, also he was disturbing the peace with the loud yelling and cussing and things are not even good to repeat.
You can attend the family to family education course offered by NAMI, it’s free of charge, also the book ‘I’m Not Sick I Don’t Need Help’ by Xavier Amador is a great way to empower yourself to deal with the illness. This forum is a great place to find encouragement and support, most caregivers share their ways to deal with their loved ones.
It’s definitely a hard experience.
Take care of yourself and I hope you can find the words your son needs to take his meds or someone that has the gift of persuasion; I had to call my brother to have our to cooperate to have his injection yesterday.
Best wishes and my thoughts and prayers for you and your son.
My son is same excepting currently functioning and working. The NAMI Family to Family is excellent I’m told. It sounds like you’ve gone above and beyond as a parent. Help yourself now. You need the support of a NAMI weekly zoom call. So many similar situations. Help is available for you. Like you, awaiting the next episode is painful, and realizing there isn’t more you can do is very hard to accept. Hang in, contact NAMI. Best of luck.
Where is your son now? My son is in a trailer and we’re trying to get him to help pay the rent. Unfortunately, he has not been able to get a job and hold it and refuses to apply for disability. We are at a point soon where we won’t be able to pay or willing to pay his rent. I fear homelessness again is in his near future - but we can’t make him apply for the disability funds, which he would get as para sz. Very rough on us.
I have the a similar situation. My son is 26 dx schizoaffective disorder and bipolar. He is currently in his 6th rehab and due to come out on Sunday. I am scared to death about him coming home. He also has delusions, and a very foul mouth. We have holes in our walls, he has not had a door to his bedroom in over a year cuz’ he destroyed it and threw the pieces of it at me as I ran from the house in fear. I am not looking forward to that again. He is at yet another treatment center that promises that they know how to deal with this. They give us all the right answers for our questions. Bottom line is, they want my money. They all work from the same play book and from conversations with my son, nothing has changed. Still thinks he is going to go to school when he gets out. The kid can’t concentrate long enough to read 1 page of a book. I want him out of the house so badly-but we can’t afford it. The rents and home sales have increased soo much! All we can do is keep plugging along. Wish I had a great answer to solve your problems along with mine. Stay strong.
Our son is with us at home; it’s been a complete struggle to try to place him in a supervised setting because he doesn’t cooperate to be placed in such a place; the opportunity is there when he’s in the hospital but the social worker tells me that he doesn’t want to be interviewed and they don’t take him; due to the history of his destructive behavior he’s not being considered for low income housing, he’s been evicted about 4 times from there and the damages I had to pay at the hotel was expensive; I really don’t kick him out because the temps in this zone drop sometimes below 0°F. These days even with the medication (we forced it with the help of my brother and my other son) it seems that the behavior is slowly coming back, I’m trying to figure out what’s going on. He hasn’t worked for a long while, he says he needs a job but he really doesn’t apply to get one! Couple months ago he called SSA to stop receiving the monthly SSDI which is deposited on the 3rd of the month, we’ll find out later today if is going to be effective now on!
It’s not an easy experience, sometimes it’s a nightmare!
I have contacted our mental health ACT, Assertive Community Treatment and since I know our son won’t cooperate I’m contemplating another option.
Take care of yourself and try to get support from family and friends even church.
My thoughts and prayers are with you DianeR.
It’s really a difficult situation for all caregivers trying to help someone with a MI - I hope your sons SSDI continues.
Thank you for your prayers. All help is needed. Sending you strength.
Thanks for your support! I’m glad your son is working! I do attend the NAMI weekly meetings and they are helpful but I need even more support because I’m pretty much alone. My son’s father does not want to get involved to any extent.
Thank you rosyd. The hotel situation sounds awful! I imagine it would be the same for my son. He has destroyed 4 apartments and is now in his 5th one. Flooding (like your son due to clogs), fire (a small one), giant holes in the wall, smashed furniture, numerous complaints from other tenants. No one will rent to him unless we make up a story to cover his rental behavior. We always paid the rent but it was the damage and complaints and police calls that made everyone in the building hate him. I will read that book!
So sorry that you are going it alone. At least there is one loving parent. It can be debilitating and take the life right out of you. I am in a similar position. My ex lives 3 hours away, it’s just me and my son since one grandma moved, one died! Every time I ask my therapist what more can I do for me son, her answer…take care of yourself! You are truly numero uno and no good for your son if yer a mess. I can’t emphasize enough how important that is. It’s a core belief for me that works. Also, if you can afford, and find a good therapist, also hill recommend. Take good care of you, first!
Any possibility of court ordered injectable meds? Or conservancy?
Hi Tippy, very similar set of circumstances here! I was struck by your son’s belief that he is able to go to school. My son also thinks he can go to college when he can’t focus long enough to sign up for classes, let alone behave appropriately in a university setting.
Thank you DianeR, I need that support for strength! Just yesterday at night a cop made a stop by to tell my son he no longer can ride the bus, our only public transportation system in this town! This tops it off! Apparently my son made a sexual remark to a female driver and she was offended, she felt uncomfortable! So he served him with a written statement in behalf of the bus company to be banned for one year! Even when I kind of expected that I still feel sad because it’s been claimed that MI is like any other illness, IT IS NOT! Why they put people in jails or prisons and they’re kick out of public places for traspassing? Our mental health system is so broken and our loved ones sometimes don’t have the insight at all!
Thank you for your understanding.
I’m sorry about your experience Caringforhim; I started a class at church called Spiritual Resilience yesterday, it’s offered by our church and one of the points covered was this: you choose how to react! I’ll tell you sometimes is hard not to loose your cool with how our mental health has changed, I called our local community support program to inquire about the ACT, assertive community treatment, and it’s only for limited time.
Not much help out there for them, only if they want to help themselves!
Take care of yourself.
*If there is a bright side to this experience I’d say I have very kind friends and aquaintances I couldn’t have gotten any other way!
Our loved ones and us will continue to be overlooked by our psychiatric care system and suffer tremendously because we don’t coalesce and demand that we find a way to draft laws that are responsible, respectful and effective in getting them the help they would more likely than not want if they were not ill.
Our laws really make no sense. And yes, I know that there was a time when the laws leaned in favor of mandatory treatment and evil people took advantage. There has to be a middle but effective ground.
For now all we can do and all everyone says is, “take care of yourself.” Tired of hearing that. I desire my loved one to have a chance at a decent life.
Praying for all of us always.
Nothing but love and support. 20 YO SZ son. I drink too much. But we’re okay today. Waiting to hear from SSI.
He needs that but I can’t afford the legal fees 
I wish you all the best for SSI!
100% we need change to our laws. It’s so broken. I have no idea how to really advocate for change at the policy level.
Many law firms file for SSI Disability for a contingency fee. No upfront $. They take 25% of settlement but capped at some amount. Meaning they get paid to get the claim in place but not ongoing. Packard Law Firm in San Antonio, Texas. Ask for Crystal.