Hi forum
Brother has had severe schizophrenia for 25 years, we have had a lots of ups and downs .
In the last few years brother has periods of being rude to family which can last a few weeks , then he goes back to being polite friendly . This goes in a cycle which is hard when the rudeness start’s especially to my mother who is dealing with kidney failure( mother is his main carer and live together). The stress of years of caring makes us alm snap easily .
Regards
A
Hi @And46 , Its so frustrating isn’t it? We enjoy my son so much when he is polite, friendly and engaging. When he is having periods of psychosis he can be rude and we leave him alone as much as possible so he can cope. I hope you can help your mom see that it isn’t personal especially since your brother will go right back to being polite and friendly.
I understand what you are going through, my son was diagnosed at 21 and is now 39 and very stable right now. In his younger years and while we were going through all the roller coaster ride of drugs that were offered, I encountered those periods of rudeness and even hostility and it was frustrating. I found that when his doctor added Depakote to his regiment initially to help a separate seizure disorder it seemed to halt the periods of moody anger and rudeness. His doctor said that that drug also acts as a mood stabilizer keeping his mood on an even keel. I have to say it really worked well on all accounts. Keeps his seizure disorder under control and keeps his rude/moody/hostile episodes away. He’s been on it for 8 years. Maybe a stabilizer of some sort would be helpful or at least worth a discussion with his doctor. I wish you and him well.
My mom is in the same place; I ultimately had to ask her to move out for my mental health and especially for my life partner Charlee (who she used to be occasionally kind to, and now never is.)
I wish you the best of luck! It is so hard to maintain emotional regulation when the disease effecting someone we love prevents them from being able to be kind to us.
I’ve found being in therapy myself to be extremely helpful, too, and remembering (like Hope said) that it is not personal - it’s the disorder that is stopping them from really seeing the people in their life as the helpful, kind people we’re trying to be.
My brother is very similar to yours, although he has other habits that also make him seem like an overgrown five year old (which is what has kept me coming back despite how poorly he treats everyone).
I and my family know he’s never going to have accurate perceptions of what people are doing because of his disease. That being said, the only things we HAVE to do for him are make sure he is physically safe and taken care of. Because he’s unable to emotionally regulate or control what he does, overall, almost everyone in my family has gone limited contact only. He gets visits with supervision or in public places where available, but none of us after years of dealing with some of his worst bouts of paranoia and psychosis, feel safe enough to be left alone with him for long.
What makes it even more difficult is that he’ll regularly complain about hating people, and everyone else around him, and then complain about how lonely he is and why doesn’t anyone see him? ect. Self reflection is NOT possible for him, so we only put up with it so far as it doesn’t impact our own emotional health or any of the children in the family. By and large that means they understand what his illness is, and why we only visit him a few times a month. (Twice minimum but more often the other cousins at least try to get him involved with simple things like games or crafts.) The kids witnessed what he was like without meds and without proper care, so there’s no particular stress in that regard to having one of them being convinced that he’s not really ill.
Having read other peoples stories where their family members don’t acknowledge the Dx, especially after multiple rounds of testing, it’s one of the things we watch carefully. When it comes to health reforms, other religious or “Help” groups (ie cults) that may gain access to assisted living facilities as volunteers, we have very low tolerance for people assuming him moving back will help his situation. Thus far, FINALLY getting him into assisted housing has been the best thing we’ve ever done.
My parents went of a vacation, not just a daytrip, for the first time in 20+ years. I’ve had time to get work and attend college, my cousins have all had more freedom to move for their work opportunities, and my extended family is relieved to finally not have to worry about where or if my brother is wandering around their homes or the neighborhood at night.
On his end, he’s taking meds, if reluctantly. Last week although he still yells at me on the phone, the report from the nurses is that some of his chronic septic ulcers have healed. He’s finally consented to using stronger antibiotics that will help close the skin wounds and thus make him able to walk, move, or shower without pain. My cousin visited him and he was able to get a walk in on the community grounds and they did some painting. The place he lives encourages residents to do things like gardening and some of their own house chores with helper staff if they can, and so my brother’s little apartment room was clean. He has his blankets and gifts safely kept away, and has started making a few friends despite some of their odd behaviors, that are nicer than most of the drug dealers he called “friends” on the street.
This is pretty much the closest thing to a miracle that I have ever experienced in my life. His prickliness hasn’t really gone away and he still hates his meds, but he’s safer and more functional without having to trash or get kicked out of another apartment. As “Community Based Care Facilities and outreach” goes, it failed him until getting such an involved level of care. If it comes from us, we’ve learned, familiarity breeds his discontent, so the fewer people he recognizes or that he feels “control” him, the better. The facility knows this and thus, has him work with different staff and telehealth professionals familiar with his case, so that he won’t start decompensating again. There will never be a time, thanks to a ton of legal paperwork, that he will be without medication or some sort of monitoring. It’s rough but again, much better than having him live or wander where ever he pleases in whatever state he pleases, with no means of finding him again.
That’s amazing! I’m happy for you and your family to have that space to attend to yourselves and know that he’s being cared for. Did he consent to enter assisted housing willingly?
Not really.
His care team spelled out that he is too ill to get let out on the streets, too sick to stay with my parents, and too old to survive another year without care in homeless limbo land. In an ideal world, he would recognize how much people have tried to get him in touch with care or help that he needs, but only now that they can do a full work up for meds and services long term, have we been able to see this amount of change.
Housing works on a lottery system that you have to reapply for each year and if no one does it for you, the options are homelessness or trying to couch surf with friends and family. We applied for the disability housing he has now, and this med compliance, alongside his latest forced hospitalization has been the golden ticket.
That’s great! I’ll apply for assisted living in my area over the coming years to see if the timing ever strikes right to get my mom the help she needs!
Congratulations on your newfound freedom!
You have to get on it every single year and have multiple people in the loop for how the process works. There is a very obvious stigma against state care, but realistically, most people are out of options. Or at least my family was. Some states have a waiting list, while others have a lottery system. Asking on the 211 services line or your local department of housing/hospital social care team, will probably be your best shot at finding the resources she needs.
My brother didn’t manage an independent life at home and would scare the caretakers half to death. (At time threatening them) which, at that point, we had no choice but to let them go. It’s not as if I blame them. Everyone has families to go home to at the end of the night, and I would never want my brother to be the reason that they were seriously hurt. With the LRO in place, his disability check goes toward his housing and the trust fund monies, goes toward some of his outings and workwear type stuff.
Most recently, they actually started a gardening program for the mentally ill that means they grow plants and take care of animals ect, selling what they make for their own benefit. The organization he’s with partners with other specialized services for the disabled and mentally ill to provide living wage job opportunities and skills building for the population. So far, it’s done more to have him out of the house, than trying to negotiate the minefield that is having him at home.