Family and Caregiver Schizophrenia Discussion Forum

At a loss for brother with schizoaffective

I’m thankful I just found this site, because boy 2020-now has been hard on my family, particularly my brother (35).
He was diagnosed with schizophrenia around the ages of 19-20 or so. He’s had periods where he does really well, stays on medication, holds down a job, until he decides to start self-medicating with alcohol, weed, or just pulling himself off the meds altogether. His last big episode was about 5 years ago, resulting in him fleeing the state and being homeless for a couple months before agreeing to get back on medication and moving back in with my mom. He’s tried living on his own or with roommates periodically but it never lasts long, and living with my mom (and dad before he died of a heart attack in 2012) has always been his safety net. My parents always had a hard time setting boundaries with him, and my mom is just now attempting to set some boundaries, sporadic as they are.
In 2020 we noticed signs of delusions and hallucinations coming back, and they continued to get worse in addition to very obvious alcohol and weed consumption on top of ceasing medication. In December 2020 he was in a horrible car accident, and had to get over a dozen stitches in his head. He had been in so many smaller car accidents before, but this one left him really banged up. He honestly could have died, or killed someone.
He didn’t listen to doctors follow up advice, (he now thinks he’s more qualified than any professional), and didn’t take care of the wound or his broken hand properly. I also wonder how badly his brain might have been damaged from that, in addition to the mental illness.
That accident left his car completely totaled, which I thought was great because he shouldn’t have been driving anymore period. Yet my mom would let him borrow her car whenever he needed it because she is not used to setting boundaries. He wrecked her car in the middle of 2021, and after she paid to get it repaired, she has started to implement car boundaries, albeit inconsistently.
His state of living is a wreck. He never sleeps, eats bizarre meals that have often gone bad, won’t accept other food, and has completely trashed 3 bedrooms in the house with hoarding tendencies, holes in the wall, mattresses flipped over to block out windows, tools and other bizarre objects all over, and it’s impossible to see the floors. He had blankets and towels sitting in a tub of dirty water while they got moldy. My mom is 67 and has painful arthritis and limited mobility, and she can’t physically pick up after him like she used to. However the side of the house where she resides is like night and day in comparison, it’s just his areas that are destroyed.
Fast forward to a couple weeks ago, and my brother was having an absolute psychotic episode at 4am in my moms house. He took my moms car keys and drove off, to which she called the cops telling them he stole her car and is in a state where he could hurt himself or someone else. We’ve called them before with no luck in them doing anything, but this time they picked up him and took him to the psychiatric hospital.
He was admitted for almost 2 weeks, and I learned he actually has schizoaffective, which makes sense to me. He was refusing meds for about the first week, but finally started taking them after they had my mom sign a Surrogate Decision Maker form due to him not being in the right mind to make decisions. This was the first time he’s ever been admitted overnight, so I was feeling hopeful that maybe things would be different this time. They released him a couple of days ago, and sadly, it doesn’t seem like anything has changed. He won’t show my mom the medicine he’s supposed to be taking, he refused the injections, and when I spoke to him he sounded just as aggravated and delusional as before. He can be very mean and nasty in these states which just pushes people away.
My mom started to set some boundaries, gave him 30 days to get the rooms cleaned up and to communicate what kind of help he might need. He would also need to stay on the meds prescribed to him- Risperdal and Paxil. He has already decided that this is impossible and is telling me he “is getting kicked out in 30 days.”
I’m honestly just so tired from all this, it’s impacting my relationship with my partner, my work, and my relationship with my mom. I just feel like giving up and cutting him off sometimes. My sister has blocked his phone number as a boundary, and only communicates with him in person, but I worry if I do that he will harass my work, as he’s done that in the past. It’s hard because I care for him and want to remain hopeful, but it’s just wearing me out at this point, especially when he’s verbally abusive.
To anyone still reading, thank you for reading this novel of an experience. I’m glad to have found this forum for support.

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It sounds like your mother is doing all she can.

Is your brother seeing a psychiatrist? Was there any kind of follow-up after getting released from the psychiatric hospital?

If he’s not seeing a psychiatrist, maybe he would now agree to – facing the ultimatum to stay on his meds. If he’s not taking the meds because he doesn’t like them, perhaps the psychiatrist can change them. That’s what they do, they work with a patient to find the right mix. E.g. maybe he would like olanzapine (Zyprexa) better if he’s never tried it. Or quetiapine (Seroquel).

If he’s self-medicating with pot and alcohol, at least he’s amenable to taking drugs. A psychiatrist could help him find better legal ones that could help him have a better life.

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Figuring a way forward can take years for family members and caregivers. Your mom is trying different things, that’s big, many people do the same thing over and over and don’t try anything different.

One of the lessons NAMI teaches in their Family to Family course (which would be great for you and your mom to take together) is that you should work, as a priority, to keep your own life on track. I think of it as minimizing the damage done to the family by the schizoaffective disorder. You can’t control how your brother will be affected, but you can work to control how much of YOUR life will be affected.

Its okay and important to prioritize your own life. Some of us parents can struggle with this, for me, it felt like an instinct to sacrifice all to help my son. I had to learn to prioritize my life while also learning to release my son to his own journey. Its a hard lesson to learn - brain disorders that cause severe perceptual issues cannot be cured by love.

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I’m sure there must have been some follow up care planned, although I am not sure what it is or if he is adhering to it. I just wish he would be more open in telling us/involving us, but I don’t understand what his delusions/hallucinations tell him. I’ve thought about calling the psych hospital he was at, but I know there’s not much they can disclose due to hipaa.
That’s a good point you made about him being open to some drugs, lately he usually argues that “natural” is better than western med, which is probably why he’s not compliant with the rx.