Thank you for your story. My son does take his meds. I put them in a pill box every week. I have to hide the bottles though. He has been known to take too many when he has access. What I want is a protective bubble that he can live in. Someone else who will watch over him. I keep wondering what will happen to him after I am dead? I am getting to an age that I would like to travel more, maybe take a vacation longer than a week, but my husband and I can’t do that in this situation. Just last night my husband and son were yelling and screaming at each other because our son is always blaming us for everything that is wrong in his life. I know my son does not have a grip on reality, but my husband feels he must point out in a very loud way that we have been nothing but supportive, and still my son blames and accuses. I really hate being at home!!
Sorry, did a little venting.
I have to try NAMI again. Due to covid, everything has been shut down. No way to meet in person. Did a virtual meeting which I did not get anything from, basically they just said what is on the web site. I will try again though, Thank you
Tippy
I am in the same situation as years, even worse. I want my son out but i believe he’ll never make it on his own.
My kitchen and his room are a real mess. Every morning i wake up to a sink full of dishes. He will not even pick up ba piece of paper that he drops on the floor. He keep insulting and accusing me off keeping his father’s money. He has refused to take any medication at all for almost two years. He refuses therapy and doesn’t even go to a clinic for his health. This autistic has become hell in my home. I hate to stay in my home and hate to come back to it when i go out. Hes been ill since he was 17 and he’s biw in his fiftues. This a terrible, excrutiating illness. Sometimes i wish i was not here any longer, but we have to go on. Stay srtong, it’s not easy.
He was diagnosed with a schizoaffective disorder, not autistic, sorry that was a typographic mistake
Hi NAMI has gone completely downhill for a number of reasons:
- The number of groups they have has decreased. This was happening before the Covid debacle and has also been fueled by some of ‘woke’ cultures new gender/sexual identities! Gee is they are OK and normal they shouldn’t need NAMI
There used to be groups f where the afflicted and family member could meet with others. I loved this opportunity to meet with others it helped both my son and I. I had so hoped we could make friends and create a new family because we have no one.
I love my son I never want to let him go. I fear for his future when I am gone.
In So Cal rents are off the Richter Scale. A one bedroom apt is around 2-4K a month.
If he had a ‘cleaning person 1 day a week he could care for himself — well sorta There are doctors appointments things like that . Also no matter what med he is currently on he has the occasional 3 AM screaming outbursts, and the occasional rants.
Group homes are pricey and so incredibly sad. We lost his identical twin brother which shattered our souls. Our entire family is gone I cry every night I am so afraid for his future.
My son has no criminal or substance abuse history. Weed had been used off and on in our household but ‘drugs’ have never been an issue. Group homes are full of hardcore sufferers. Not not a real healthy environment. The owners are pure profiteers they make a bloody bundle
Hi Tippy, I did the NAMI class this year which was in person for the third time!
They have condensed the class, instead of 12 they’re 8 classes now, I’d say they are better, with videos and more to the fact, still is hard. I’m always trying to think what to respond/answer to my son when he asks me something to avoid arguments, some times I just say ‘I don’t agree’ and let him know I’m going outside. I learned when he wants to ‘dance’ by his questions. During covid there was NAMI support meetings online and I really didn’t like them, I somehow found this forum and it’s the best thing we have for support.
In times of crisis I have not found help from them.
There’s a pilot program in our area but my son doesn’t want anything to do with it, the social worker came to the house but we’re still on square one. Hard, hard!
Hang tight in there, if anything get out of the house and do what you to do to be safe.
I’ve learned some things the hard way. Nobody wants that.
I’ll have you iny prayers.
Hugs to you.
Once about every two years, my son has an episode, usually after stopping his meds.
He stops them because he says he never feels good or right on them.
He nows takes a once a month injection, which lets him behave more normal, but he still feels not himself.
But he is under court order so he is monitored for the next year. It is part of ACT program in New York. To qualify you have to have been in psych. hospital, I think 3 times in 3 years.
Not easy for him or us.
My son says the very same thing: “those meds don’t help they don’t make me feel good, I’m not having motivation, I was better without them, Dr Domingo misdiagnosed me blah blah blah!” I don’t try to convince him that they help and without them we know he gets in trouble, now I just listen and sometimes I dare to say something but I realize that he wants to vent or argue. I’m going to check the ACT in our county about getting a court order meds for him, I have gotten discouraged because I have tried it before and last time I was told he has to participate, their idea of participating is to take his meds willingly, we wouldn’t be in this situation for so many years if he’d take the meds willingly.
Hi Lill, I think it’s hard to be in your shoes, I’m concerned about my son as well even when he has other siblings and we’re a big family but each one of his siblings have their own lives and family, I don’t think they’d like to take care of him, none of them and we’re getting old ourselves, I have not planned for him to be in a group home or nursing home yet, he’s been in one nursing home for 5-6 months and the place was very depressing, years prior to that he was in a group home for a mandatory year here in town, the bad thing is they closed down 2 houses and there’s only 1-2 left; I can’t imagine this days the care they receive since every place, hospital or nursing home have issues because of lack of staff. I called myself a few places that the state covers and l checked the reviews of some just to have an idea but if only one person complained about anything it’s one too many.
There’s some places like the Lutheran services but the waiting list is long. Their future is somewhat somber.
It’s concerning! 
My kitchen and his room and bathroom are disgusting too! Every day when I come home from work, its sounds like I am walking on a movie theater floor. My shoes stick to the floor! I am currently trying to get him on disability. I just got a letter from SSA saying that my son needs to meet with a Dr to assess him. I am told that these Dr’s are paid to deny claims of disability. I am so nervous about this meeting, I have to get my son on his own insurance, I can’t afford to pay for his insurance anymore. I can’t believe that this one Dr who will meet with my son 1 time can make this decision. SSA was given permission to talk to all of his Dr’s and treatment centers why isn’t that enough?
We are in the same boat for living situations. These owners have cornered a market and making a bundle off of desperate families. Well, I only know of 2 in my area. This one woman wanted $3000 a month for my son to share a very small room with someone else. She would provide meals and medication disbursement. That was it. The rest of the day and all day, the residents could do whatever they wanted, go wherever they wanted. I don’t think she was even on the property except for meal time. I don’t want to think about my son being homeless after I am dead, but without other options I am afraid that is what is going to happen
Than you. I will check into NAMI again.
Maybe one day they will find a cure …
I’ve had that too and it isn’t helpful, after so many times of reminding my husband he was not helping to have him match our son’s yelling he stopped doing it, it was very stressful to have them both acting the same way especially when my husband considered himself ‘normal’, he was making it worse. Some men might think yelling is a sign of strength and it’s not, on the contrary is a sign of weekness. I know what you are saying and feel.
Our son was yelling and accusing me the same way as your son but we have learned not to take it personally, it’s the illness taking over. And it’s easier to blame everyone else. He’s frustrated ‘with his lot’.
We don’t have the luxury to think about vacations ever, last time we were on vacation was 11 years ago and our son didn’t want to go with us, that was the beginning of him being in and out of the hospital, prior to that he had been a little bit more consistent with his meds though he had been committed at the State hospital already for about 6 months by then.
We had to make changes to adjust to what we have.
I like the post (list of do’s and don’ts) this kind lady put together, this is what I learned to do myself after almost 30 years of navigating this long journey.
I read it yesterday and it’s excellent.
We don’t have family gatherings in our house but we can meet somewhere else, I had to put away the glass and use recycling plastic, many changes to list.
They vent by yelling, we come to the forum for support and being able to get out of our chest what’s very uncomfortable, please feel free to do so as you need, some caregivers have very good counsel.
Take care. I pray that you are able to look beyond what’s at the present moment and that you have strength to face the day. Hugs to you.
Thank you for your reply. I must be very selfish, cuz’ I don’t want to give up my life to care for my son. I give up so much already. I used to love to entertain, can’t have people to the house. I have also put away the good dishes so he doesn’t break them. I worry about leaving him alone, but I need and want to go on vacations. I want to see my other son, he doesn’t want to come home so we would have to go to him. (he is 6 hours away) I just want my sz son to live in a safe place. I just hate this disease!
You an always join our nami support group on zoom. https://nami-pinellas.org/family/ Next one is on 6/30. There are actually some group homes in this area (near St. Pete). My son is in CO where there aren’t any group homes. And yup - the cost for apartments is pricey there as it’s a touristy/university very nice area.
So many heartfelt thoughts in these threads. A lot of different approaches. We tried a well regarded Sober Living home with 8-10 similarly aged young men. Lots of planned activities, fitness, chores, and they help with meds, food, transportation. At a mere $3,500 a month!
It lasted a month. Wonderful kids and certainly some with mental illness primary (versus substance abuse primary) but my son simply couldn’t be convinced to stay on his meds AND stay sober.
Then we found a roommate from his few classes at local junior college. He was a rough kid with a kind heart and had his own struggles. We vetted him as best as we could and found them a nearby apartment for $1,500/ month to share. I gave the roommate a discount at $300/month.
This worked pretty well for 4-5 months although the apartment was a dumpster. We muddled through. Even took his roommate on a family trip and often over to our home for dinner or sporting events.
Then, my SZ son began worrying that his roommate was plotting to kill him. We talked him off that ledge a few times but his fear and anxiety increased and our son was back staying with us - while I had the benefit of paying rent… 
Then it got really bad re paranoia So, now we’ve terminated the lease and my son is back home. For the record , I gave the roommate a 60-day notice and he doesn’t have to pay me as long as he cleans it well on his exit. Like I said, he’s a good kid with his own struggles.
So son is back home. And same patterns.
I’ve looked into group homes as well. Similar impressions that they are not a better option.
So we trudge on.
The tension between wanting him OUT (constant desire) vs wanting him SAFE (lifetime commitment) is impossible to balance. Lord help us all find the right place for our loved ones that is safe, and allows them to live their best life - without costing we caregivers our lives…
I hope you don’t have too many problems to get the assistance your son needs, you already know there’s the possibility that he can be denied but don’t despair, I know a guy who’s friends with my son and after he was denied he went to a lawyer to get it straight, he won the case and he got a small portion of the money, it was one of those lawyers that know the turns and ropes of SSA. It was great to be able to see him get him the help he needed help.
One day at a time.
Hugs.
We know that road! We have our son home, he has been evicted from low income housing because he tends to do those strange things that eventually cause expensive damages. I think I’ve been more stressed out when he was ‘on his own’ because I was told by the other tenants how he was behaving and eventually we got called by the managers for one reason or another; as the saying goes: keep your friends close and your enemies closer.
I keep hoping and praying for strength to meet the day.
I agree with you regarding what you said:
“The tension between wanting him OUT (constant desire) vs wanting him SAFE (lifetime commitment) is impossible to balance. Lord help us all find the right place for our loved ones that is safe, and allows them to live their best life - without costing we caregivers our lives…”
Thank you for your reply. Unfortunately, it sounds like the same boat as me! This disease is horrible!