Family and Caregiver Schizophrenia Discussion Forum

I think my 30 year old sister has schizophrenia but doesn't believe in any kind of mental health institution

First time posting. I have no idea what to do.

My sister has always been ethereal, spiritual, and eccentric and everyone just thought she was quirky. She used to be able to go out to the city, clean, write, and have a coherent conversation but now she can’t. I saw her for the first time in 2 years (she refused to see anyone besides her partner in that time) and can see how much she has deteriorated.

So, the house. My dad bought this house over a decade ago and turned it into a hoarder/squalor den. I lived there as a teenager but left at age 17. My sister and her partner have been living there for like 8 years. It was awful. 3 rooms full of junk we couldn’t use, bed bugs, no a/c, the parking lot was full of cars, garbage everywhere. My dad has pretty much left the house to them.

Well I went back for the first time in 4 years and it has gotten so much worse. Garbage is coating the floor and porch. I… Honestly can’t even describe how awful it is without pictures, which I can’t share here. Google squalor house for an idea.

Well my sister greets me with “I have dreads now!” Her hair was so neglected it turned into a giant clump on her head. When she spoke everything she said was vague and made no sense. She’d start talking about one thing and jump to 5 others in a 2 minute span. I offered to help them clean up the place and she got so upset. She says she thought it the mess beautiful and got very mad at me for wanting to change things. She seemed very afraid of any change at all and said things will just happen the way they happen. She believes that’s she spiritually helping all her friends all day and she is doing spiritual work and its ok even if it hurts her. The ceiling collasped in one of the rooms and she refuses to tell our dad because she thinks he’s going to mess up her room (which is coated in a foot of garbage) which is the only safe space she has. She refuses to leave the house. She has never been able to work. I couldn’t understand what else she believes because she was so vague. Shed say “the mess is not the problem we have bigger problems” then I asked what are the problems and she got mad that I was talking about problems. I was asking normal questions very gently and she got upset and starting saying “I just dont understand you! I don’t understand what you are saying to me!”. She believes she will win the lottery and then every thing will be solved. She thinks she can tap into Powerball numbers. My friend also thinks something is very very wrong.

When we used to live there together 5 years ago and she took care of me. We’d laugh and have normal conversations and she was mentally present. Now she’s… So gone.

I’m only 22. She believes all mental institutions are awful bullshit and refuses to have anything to do with them. I have no idea what to do.

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I would call Adult Protective Services asap and or the police if it were me…

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I agree. She is harming herself with unsafe living conditions and potentially harming others (at the least, her partner).

If you call, they will force her to go to a hospital. Don’t be concerned about hurting her feelings or what she might say if she is upset. At least you will know you tried to help.

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How is her physical health? Is she eating? Depending on your state/locality, the laws vary as to what is considered “harm to herself (or others)” in order to be given treatment involuntarily. And even then, a couple of weeks of treatment is not a magical fix for an illness like schizophrenia. However, a medical evaluation is in order to rule out any other cause of such delusional behavior. You might first contact a local Mental Health Department and see what they say, although keep in mind, some agencies are better than others so what you are told may or may not be good information. Also, become familiar with resources at

https://nami.org/

and follow the links to that organization in your state to see if there are NAMI (National Alliance on Mental Illness) Family Support groups in your area. NAMI support groups and programs are offered free of charge and I found it to be my first step toward really obtaining the understanding I needed to help our loved one. Another resources is the book “I Am Not Sick; I Don’t Need Help” by Dr. Xavier Amador. Learn all you can and realize that each person is different, but it appears your sister definitely cannot recognize her own illness due to the illness. There is hope for a better future, but it will likely take a lot of learning and patience on your part.

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Hi 12345 ~
My first thought is about the partner. Have you or anybody else been able to talk to him or her? It seems to me that if anybody understands the full extent of our loved ones’ behaviors best, it’s the people who are close to them and/or live with them (family/partners).
What is their perception of the situation and behaviors?
And are drugs or alcohol involved and to what extent? I’ve noticed pot and alcohol trigger bizarre thought patterns for my partner (though the pot does tend to make him calmer and nicer but he will be talking nonsense), who also suffers severe anasognosia (complete lack of ability to recognize the illness in himself) coupled with extreme aversion to even the slightest suggestion of possible treatment.
As far as the hoarding, I’ve seen this first hand. We’re talking knee deep garbage in the kitchen and living room, clothes scattered and piled as deep down the hallway and coating the bare mattress and bedroom floor, trash covering every open surface, rooms that couldn’t be entered because furniture and odd crap just piled in, most everything rotting from moisture and mildew and growing and him not willing to get rid of anything. The entire yard cluttered with rotting rugs and blankets and broken canopies and screens and… dishes. He spent years not doing dishes and when the sink was piled to the cabinets things were just tossed out the back door into the yard… not too many people knew the extent of the conditions. His youngest brother and best friend refused to let any of the family members come by the house (I agreed).
There were (and still can be) various other personal hygiene issues. Initially he wasn’t showering or changing his clothes… seems he was also starving himself but that was because he had been sold on some ‘health regimen’ that he’d only drink a gallon of water a day and half a loaf of bread with tons of vitamin supplements under the delusion he could achieve zero percent body fat and played tennis daily (he is active. This has been a huge part of him being able to manage some of the symptoms, and he is also very good)
So!.. the first step in facilitating change was five years ago when I moved in. I began the process of cleaning out the garbage, collecting the laundry, washing down the walls and floors, getting rid of dishes etc.
The only reason I think he managed it was that he was actually afraid that I’d leave if he didn’t let me.
When it was finally time to organize the actual stuff, I dumped urine covered furniture when he wasn’t home, tried to get items organized to where he could see what he had and process it at his own speed… and finally the owners of the house put it on the market and it sold in a week. We had less than a month to be out, and there was still an 18 foot UHaul of stuff that his brother and I got him to let us take to the dump,
Mostly because… we still didn’t have a place to go and I refused to let him put anything in the storage locker that had mold or mildew on it or wasn’t in some way useful. It was a fight then he finally came to resignation. For the most part. (There is still a bag tied up in the new house of uncle’s old military boots that are rotting and will never ever be worn by anybody ever again. I labeled it with masking tape “rotting boots”)
He was allowed to have one room in the new house to himself but NOT allowed anything with mold or mildew. At all.
Nowadays that room is a fire hazard, on occasion I will pull all the dirty clothes out and throw them on the back lawn for him to bag up and wash, after the rest of the house starts to smell through the closed door.
He thinks this is extreme. Maybe it is. But it won’t get done if I don’t.
And our two work vans are both backed to the ceiling with… god knows what he’s stuffed and shoved in there.
But I think having a clean home otherwise and regular meals I cook he has slowly in five years managed to come back to normal semblance of living. I still have to occasionally clean up trails of used paper towels, remind him that garbage goes in the garbage can (yes he’s an adult man of 53) remind him that if he lets dishes rot in the sink he will be living with flies (oddly, its as if he breeds them but has a significant aversion to them. Finds them horrifyingly disgusting)
So ultimately the battle continues with the behaviors, every day, but I think the greatest facilitator of change came from necessity, when he had no place to live.
I think the others gave you some of the best advice to start. Try Dr. Amador’s book, the NAMI resources if you can, and it may be necessary even to get intervention. But talk to any other family that has been in contact with her and her partner for sure.
Best of luck and thoughts to you and your sister. Let us know how things are going. This is one of the best places I’ve found to come for support and advice and sometimes just to be able to vent with folks that have a clue. And remember, be good to yourself first!