Hi, all.
My brother was diagnosed with paranoid schizophrenia when he was about 20. It’s been 15 years now… At the time of my brother’s diagnosis, I was a minor so I wasn’t involved in family decisions. The family has kept tabs on him, but for the most part have gone on doing their own thing with only sporadic, rare visits and occasional care packages. I ended up marrying my high school sweetheart and moving overseas for the better part of the last decade. I’ve made it back to the same state recently and wanted to get in touch.
As I mentioned, my parents visit (although rarely). I asked to tag along to see him for the holidays while my husband stayed home with our kids. I hadn’t seen him in probably 9 years or so. My parents drove him to the restaurant. I gave him his gifts (some gift baskets with edible goodies) and I tried to chat. He would respond when asked questions (explaining what was on his plate when I asked what he was eating, for example) and chuckled softly when a joke was told, but otherwise remained stoic.
I thought, “Well, I live only a few hours away. I’ll visit for Christmas. I don’t know how much is getting through to him, but I don’t want him to be alone on the holiday.” I called on Christmas to let him know I’d be visiting. He mentioned the gift baskets I had given him 2 weeks prior and that he enjoyed eating them. I was surprised he remembered. On Christmas, I brought a gift, stocking, and meal. I naively thought the homes my family mentioned he had been living in were nursing home type set-ups, but I was surprised and heartbroken to find it was a shelter with the only difference being an assigned cot in a bare corner and meds. No real place to put his belongings as I had thought all this time.
I didn’t want him to wonder why his little sister was crying on Christmas, so I sucked it up. I suggested we go to the park. I treated him with dignity and asked his opinion on things (Is this park okay with you? Are there too many loud people?) and tried to stay upbeat and positive. My expectations were low based on what my family had told me (“Don’t expect much of a reaction from him.” etc), but we actually had some great conversations.
He remembered our family. He asked if so-and-so was still married to so-and-so. He remembered my eldest son’s name and asked how he was doing. He asked if I had seen a certain relative recently. I said, “Yes. They live in ___.” He said, “They moved??” I said, “Oh! Yes. That’s right. They used to live in ___?” (Brother nodded) “Yes, they recently moved.” He asked his own questions and added his own thoughts to the conversation (not just repeats of what I was saying). He asked if I had any friends. I said, “Not too many. We recently moved while I was pregnant.” He said, “Yes I heard about that.” I said, “Yeah, well, anyway I don’t get out of the house all that often with kids. How about you?” He said, “Well, I’m not pregnant!” And he laughed. We laughed. And then he continued on describing the other men at the shelter he spends time with. He was considerate and polite (things I wouldn’t think would matter to someone disconnected from reality). He asked if I was going to eat too, tried to share the goodies I’d brought him, worried that I’d be driving back in the dark if we didn’t leave the park when the sun started to set, asked if my house was warm and if I had everything I needed (as I had asked him earlier). I didn’t cry then, but I cried the entire way home and for the next few days knowing my living situation is a huge improvement over his. We are not rich by any means, but I can’t help but wonder how we can help him. Where do we even get started?
There were small lapses in memory and logic. When we first went to the park he asked incredulously, “You know how to drive??” But by the end of our visit, he asked about my old Toyota. The one I had last visited him with so many years ago. He even knew the name of the hotel I had stayed at. At one point he waved at someone that wasn’t there. He would blink rapidly. He needed a little time to gather his thoughts before he spoke. He asked if our parents had called me for Christmas. I said, no and asked if they called him. He said no, so I suggested we call while at the park. An hour later, he mentioned he hadn’t heard from them. (I think being physically present helps him differentiate between hallucinations and reality) Overall, he seemed actually happy to see me. After reading about all the symptoms of schizophrenia such as “flat affect” I was so surprised by this visit. At some point he was telling me, “My roommate talks a lot when I’m trying to do things and it’s a little annoying and rude, you know? I tried talking to him once, but he didn’t really try to relate to me. It’s hard for me to keep up with what he is saying because I have an illness.” So he was self-aware (no anosognosia) although I don’t know how much he knows about his illness. I asked if his meds help and he said yes. I encouraged him to stay on them.
Maybe I am getting ahead of myself, maybe I’m too optimistic since I’m just barely getting reacquainted. I understand relapses are likely and he will have good days and bad days, but is there anything I can do to help him? Is there any way to get him in a better housing situation? What are the legal ramifications of becoming a conservator? If he lashes out during a psychotic episode would we be financially liable for any destruction of property or injury? He has been in these shelters for so long and the family occasionally got reports when he was aggressive and needed to be moved, but they were generally years apart… He has not seriously injured anyone or hurt himself in all those years. The family has never really tried routine emotional support and perhaps that’s all he needs to be able to live independently??
Edited to add a few more details.
He doesn’t have a closet. I think he shares a broken dresser with his roommate and that’s it. There’s really no place to secure his belongings (things can easily go missing, which isn’t great for someone with persecutory delusions). I’m not even sure how he keeps track of his clothing or if they all just share with each other. I also am not entirely sure if other residents might feel jealous of the attention my brother is getting. I feel like I would be envious if I were in their shoes and I felt “stuck” as my brother seems to feel and suddenly someone’s family member came to whisk them away. I would think, “What about me?” Logically I understand it’s a step better than being on the street, but my heart still aches for anyone that has to live like this. Author_Charity_Marie noted my brother has found equilibrium where he is, even if it’s not ideal. That really resonated with me and helps me calm down. If this is the “lowest level of intervention,” then everyone else who lives there must be relatively stable as well.
It’s a little bit of a catch-22 because he can’t move on to independent living unless he can formulate a plan to care for himself, but as you all know this mental illness affects executive function so he and people like him are just kind of stuck in limbo. During my dark moments I feel like this illness is almost like purgatory here on Earth.