Family and Caregiver Schizophrenia Discussion Forum

Newly in charge of my 55 year old schizophrenic brother

I have just discovered this website and have been doing lots of reading of everyones posts. I have never posted anything until now. A brief history of my family is in order.
My brother was diagnosed with schizophrenia when he was 22. He did graduate from college, but things were very weird for his last semester. He had his First psychotic episode shortly after he graduated . He was probably hospitalized 6 or 7 times in the first
4 years after he was diagnosed. In those days, a standard hospitalization for someone like him was 6 weeks minimum! How times have changed. He never agreed to go to the recommended outpatient program that the hospital offered after discharge. He was even accepted into a group home after one of his last discharges from the hospital. He refused to go. He was living at home for a few years but my parents wanted him to get a job and could not live with him. So they subsidized his apartment and he did have jobs, for about 5 years but ultimately he lost all of them. My parents continued to pay for him to be in an apartment because they needed to have a life and he would have destroyed any life they hoped to have.
When he was in his 40’s he was followed by the ACT group. They came to his apartment and gave him injectable meds. They sent a social worker now and then and even a psychiatrist. Eventually the ACT team decided that he was stable enough and required his visits to be at their site. Of course he refused and since then he has not been medicated. He slowly became more isolated from family members and the few acquaintances that he had. He has deteriorated a lot since then. My father passed away in November of 2018. He was the one who took care of all things related to my brother including checking on his apartment ,making sure the garbage was taken out, paying his bills etc. My brother lives one mile from my parents home and walks there daily to eat. This is where I come into the story. My mother has early stages of dementia. She could not live alone and I live in another state. I got her an aide who also manages my brother. This is the only way I could survive. I have managed to get my brother to take resperidone. The aide gives it to him when he comes to the house.
My cousin who is an internist prescribes it.
You could say that it seems like I have everything under control, but I do not.
My brother lives in filth, he does not do anything but make his apartment a garbage dump. The biggest issue is his toilet. He will often throw things in there like cups, plates, and many other things that do not belong. Then he will poop on top of them . The toilet is clogged at least 3 times a month. This behavior is not sustainable in any world where there is not someone like me who make sure that these things are taken care of. He does not seem to be bothered by a toilet filled with poop. Some people tell me I am enabling him by taking care of it and there are no consequences. I do this because under no circumstances can I allow him to be evicted. He cannot live with my mom. No aide would be able to tolerate him and my mom in the same space.
Do you think this behavior is related to a general deterioration of his brain?
Do any of you have family members who are older? What can I expect in the future?
When my mother eventually dies, there is no way he can live on his own. He barley does now. Any advice would be appreciated.

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I’m thinking mostly about financial questions.

Is the aide being paid through Medicaid or through personal funds?

Could she run out of money paying the aide and for your brother’s maintenance?

Who’s going to pay for your brother’s support after she passes?

The aide is paid by personal funds. Unless my mom lives past 95 she should have enough funds to pay for the aide and my brother’s expenses. After my mom passes, I will sell her house and use that money to support my brother. I do not know what his health or state of mind will be by then. I also doubt that he will be able to live by himself.

I have a 91-y.o. mother-in-law with late-stage Alzheimer’s. She used to wander, which made it difficult for her husband, who is 90. I helped him put a “confounding latch” on the door to prevent wandering while he was asleep. 6 weeks ago she fell and broke her hip, which sent her to nursing homes and hospitals. She’s coming back home tomorrow and will require 24-hour care, which can get really expensive. More so than a nursing home, which is $10K/mo average.

Problem with Alzheimer’s is that no one knows how long that can go on for, and at $120K a year for the average nursing home, a lot of people would be looking at Medicaid to help pay for it, which means retaining an eldercare attorney to figure out how to preserve existing assets to avoid a spend down to qualify for Medicaid.

Then, you’ve got your brother who needs 100% support. I have no idea what happens to these people if their family cannot take them in, as there is a shortage of long-term psychiatric hospital beds.

This message board is probably the place to find out. My SZA son lives with me and his mother and all is well for now, but I have to have a plan for him after we pass.

What is the message board?

Can your brother qualify to live in a nursing home or assisted living? Pooping on top of random things he puts in the toilet and the fact that he relays on others for food and shelter makes him a disabled person I think. Does he receive disability? If not, definitely apply for that for him because I think he will qualify. Your blessed that he will take the medicine given to him from the aide. Maybe he needs a different medicine in order to function better. Best of luck to you.

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I was calling this place the message board.

A bit of “ancient” online history: before the Internet was in common use, there were online “bulletin board systems” run by hobbyists which ran message board system software. You’d call them with your modem and retrieve messages and post on forums.

Later, these were replaced with more sophisticated and more connected systems on the Internet, but the term “message board” persists. I usually say “forum” but other names like “site” and “board” persist.

My brother is on disability, so part of his rent is covered by that. He has only been on medication for about 2 months and was started on a very low dose. He has only been on 6mg of resperidone for about a month now. So we have yet to see if the toilet issue will resolve due to appropriate meds.
I doubt he can qualify for a nursing home at this point because he has no skilled nursing need, and is technically living on his own.

How old is your son?

@j9sit My son is 33.

He might be eligible for housing but more likely a group home if he’s unable to maintain the home, which I have to say, it seems to be pretty common in discussion here, the same tornadoes, general filth, some all out health hazards… Wish i could find one of my very early posts describing this exact situation in grizzly detail…)
Perhaps calling somebody AT housing though, or disability, could put you in contact with a case worker that can help you navigate the system for options.
Also, one of my first thoughts was the meds. If you know he’s willing to take them, perhaps get in contact with your cousin and perhaps they can consult with a friendly psychiatrist about changing or adjusting them in the meantime? If those types of behaviors are continuing to that severity, med change could be a consideration.
Also, I know others have posted here about hiring in a cleaning service one a week to help mitigate the pile up in the dwelling. Is this an option? Some disability services also have a cleaning service available.
As far as basics such as food goes, again, disability may have an option for something that’s called “Meals On Wheels, which will deliver three or four hot meals a week directly to the residence. Assuming he can manage to stay in a residence independently.
Sounds like you’ve got a full plate, however well it sounds ‘managed’! Welcome here. Glad you found us.

I wonder if you can contact the ACT team and start with them again. The ACT may also be able to assist with supervised housing.

Hi, there are many really good residential facilities that he would thrive in. Look around your area. It would be best if he were close to where you lived so he could have frequent visitors. He really should not be alone. Interactions with others will slow the deterioration of his brain. It made all the difference for my son. Good luck

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I my opinion a lot depends on your legal status regarding your brother. If you are his guardian, you will have more authority to make decisions; without it, you are limited by what he will cooperate with. Actually, cooperation even WITH guardianship is usually needed unless some kind of coercion or incentive with get your brother to work with you and others. Its a good sign that he is at least trying a medication. Was he on an injectable form of risperadol?

Does your brother truly not care about the filth? Or is he incapable of dealing with it due to anxiety and/or psychosis? This is an example of someone who is endangering his health because of mental illness, and as was suggested by another, getting the ACT team involved again would be a great step toward improvement. Even having them, or some other service, visit to do wellness checks would be advised.

Also, make sure to document any reports of unhealthy situations. This can help you if you seek guardianship or mental health services. Showing a pattern of behavior is important.

You are a special person who will search for solutions for your brother. Many people would turn away.

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The ACT team requires people to be on medicaid. He is on medicare through disability.
Also if he is living on his own and has not been hospitalized it is doubtful that they would come to his apartment. Getting him to their facility is not possible.

Is he eligible for Medicaid? In some states you have to apply separately for Medicaid, in other states it can be automatic.

I have only been involved with my brother’s life since my dad died in November of 2018.
I am not sure if he truly does not care about filth or it is his psychosis that is the problem. I would guess that it is more lily the psychosis. Right now, he does not need wellness checks, a cleaning service or someone to make sure he is taking meds because my mom has a aide that does all those things. I have made it part of her job. He goes to my moms house daily to eat and there he takes his medication, the aide has him change his clothes and makes food for him.
She also goes to his apartment weekly to clean it. So the problem is not now ( although his toilet issue continues) I am trying to get advice on how I can prepare myself for when my mom eventually passes. Guardianship is something I have no knowledge of.
Now he has a support system because of my moms aide. But that will only last as long as my mom is alive. She is 84.
I was wondering if anyone here has successfully gotten their family member in a group home very late in their life?

How old is your son?

I am not sure if he is eligible for medicaid and not sure whether he can have both medicaid and medicare.