Family and Caregiver Schizophrenia Discussion Forum

How can I help my brother? Conservatorship? (CA)


#1

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.


#2

How wonderful that you are reconnecting with your brother. It sounds like he is receptive to at least some assistance.

Doe he currently have a conservator? If not, the process will have to involve him, and his willingness to consider it have a big impact on how the whole process will go. There are different levels of conservator or guardian status, and you can establish what level he needs.

I suggest you do some research independently on what housing options are available for him. That itself takes a lot of work. Once you have a clear picture of what is available, you will better understand how to proceed.

Also, find out what his current support sources are - is in receiving SSI? Does he have a case manager who helps him?

As a guardian, you are not held responsible for what he does. You are responsible for looking out for his interests.


#3

I have no advice to give you - I live in the UK and have no idea of how the system works in the US.

But I just wanted to repeat what @Vallpen said - that it is wonderful that you are reconnecting with your brother. Also, to say that your brother sounds not bad at and that whatever happens with regard to his guardianship and place of living, it seems likely to me that just seeing you and communicating with you on a regular basis would enrich his life immeasurably.

He is lucky to have you!


#4

I so agree and so does the research. Having someone who cares about us is so important in quality of life.


#5

It’s wonderful that you want to help your brother. He sounds reasonably stable at the moment based on your description (no active psychosis). But remember, he’s found coping mechanisms and a situation he’s happy with. He’s found an equilibrium in this situation (not as easy as one might think) and a certain amount of peace. He’s not harming himself or others and while it might not be what you consider to be good for him, he might consider it to be fine. Some people with SCZ need a simpler existence. It would be worthwhile to see what his thoughts are on the topic before you start taking actions he may or may not appreciate. Moving too fast could trigger distrust and paranoia as well. Loss of routine and consistency can be major triggers. I would spend a lot of time getting reacquainted with him, finding out more about his unique situation, his hopes and dreams. Watch and wait and the answers for how to help might come to you with enough time and patience.

Just my thoughts. Good luck whatever path you choose to take.


#6

Thank you for taking the time and caring so much for your brother.
These are just my thoughts…and only that, nothing more.

Can he visit or step away from the center he is staying at? Inquire as to if this will cause him to lose his spot.

Keep visiting…see what cycles, situations, and challenges are present.

It sounds a little like you may be leaning towards (or at some future point you may lean towards) taking him into your home?

I grew up with several family members with schizophrenia, and my son is dx as Early Onset Scz. Many of us write here: “In hindsight, I see now that this was happening, and this…”. For me, I can’t spend my time worrying about the “What if’s” of the future*. In hindsight, I’ve learned a number of things about our son that has helped. Paying attention to the now, while learning from the past.

You are learning about him now, and if you continue to visit (in spite of what you may deal with, not only from him, but from the system he lives in) you will be in a position to learn much more from him directly.

Each person is different, and we each interact differently. He may connect with you.

We had a Dr tell us that this condition causes a child/young person to not bond with family members as is typically seen. I don’t know if it’s always true. For us, the Dr kept saying that it was unusual for our child to seek and find comfort from both parents. Ours did. My brother was closest to me, and not at all to either parent. So…I don’t know. I do know that time and patience is the best foundation for any relationship.

And that’s what this is, and what’s it’s all about.
My best to you,
and again, thank you so very much.

* As to the “What If’s?”…I do worry constantly. I can’t do this, and I stop myself. It absolutely ruins daily living for me, as there is an enormous litany of terrible things I can spend my time fussing over, while missing the beauty of what is happening today.


#7

Hello, everyone!

I appreciate all your replies and am familiar with some of your names and stories from lurking through the forum. It’s nice to “meet” you all! I’m back with an update.

I was able to get in touch with my brother’s current conservator (“public guardian”) and he has been an absolute phenomenal help in assisting me put the pieces of the puzzle together concerning my brother’s care. My brother has been conserved for approximately 4 years after an episode. He is receiving some form of public assistance for people who are disabled (SSI?) and has medical coverage through Medi-Cal. He has worked his way down from the highest level of treatment facilities (locked hospitals) to his current level which provides small meals, allows him plenty of freedom, and he gets a small allowance every day. He has been in his current board and care home for over a year which his conservator said is “VERY successful” after coming from facilities with stricter lock-downs. He can stay at this level indefinitely or move in with family or even move into an independent living situation IF he shows he’s capable of caring for himself (which I’m not quite sure he’s there yet as I’ve kept up steady weekend visits and his hygiene seems sporadic). The conservator assured me he is fairly calm as long as he’s med compliant and hasn’t had any violent episodes (that was a concern I had about visits because I have young children). The conservator also mentioned he occasionally has ended up shouting at his hallucinations/delusions during his episodes, but other than that, the conservator really had nothing but kind things to say about my brother. He mentioned that out of 55 or so of his clients, only 3 have successfully traveled and my brother is one of them (our parents brought him across state lines to visit their home a few times).

I’m much less panicky now that I understand his current living situation better, but I still worry wondering about his safety. As I mentioned, I naively thought he was in a hospital or higher level assisted-living type of home. You can just walk right in or out of his current home (it’s more like a very small hotel or apartment building that has been converted) and it’s a bit run-down. His door doesn’t even latch shut. I can understand not locking for safety reasons, but it literally doesn’t close properly. It just swings open. His bed is right next to that door. :confused: 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.

My brother does seem to have hopes about moving on. I leave questions open-ended and don’t try to hint at my feelings so I can get his real opinion. He mentions he would like to live somewhere else or that he hopes to do better in his program this year (not quite understanding he’s done so well that he’s at the end of the line, so to speak). He noted his home “isn’t well taken care of,” which I would NEVER hint at. It makes me sad that he notices it’s “different.” Even his conservator has mentioned he has made comments about wanting to “live normal.” :frowning: 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.

Currently (and through his conservator’s recommendation) we are just taking baby steps and kind of testing what his limitations and boundaries are. He has met my family and visited our house. He played video games with my son and often won (his comment on the way back home was, “That was cool. I liked it! Your family is nice.”) We’ve gone out to eat and walked around the mall, parks, and other busy places. Fortunately, he doesn’t seem nervous or irritable in any of these environments or around sudden noises. I always let him know he can tell me if he needs a break or needs to go somewhere quiet. Next, we’ll try overnight weekend stays and increasingly longer stays. I hope we can continue to get to know each other better and bond (as Vallpen and Squid suggested). Our conversations remain coherent. He has asked me to stay longer. He has said things like, “I appreciate you coming to visit. I really have no one else to talk to.” Another time he had his doctor appointment earlier in the day and after lunch with me he said, “I got my prescription refill so I should be getting those medications later tonight. Physically I’m not sure how I’m doing, but mentally I think I could do better.” I have hope that he has developed better insight and mellowed out a little concerning treatment (our family says he was very resistant when he was younger). I think as long as he can let me be involved and stay on his meds he might even be able to live with us and finally have a stable and secure place of his own, which I think he would be thrilled to do. He seems very agreeable. He might be even a little suggestible so I try to be careful about how I phrase things. I’m still kind of confused about SSI and medical coverage and if they’ll be affected by household income, but those are things for me to research in the days to come.

Fingers crossed he has some comfortable years ahead of him! :grinning:


#8

@calicakes This is so good to hear. I am so glad you are helping your brother out. To me, this is a nice story!


#9

Sounds like it is rather a shabby board-and-care. They really run the gamut. HOWEVER, because they can pick and choose who stays in their care, the better ones rarely have an opening.

It definitely sounds as tho your brother has made good progress, so the next option would be to start looking at other board-and-care options to see if there is a better place for him that he could apply to.

What you are doing for him is better than what so many people in similar situations get, it is likely to help him immensely as time progresses.

You might consider providing him a lockable cabinet if he is interested in having one, where he might be able to keep a few nicer things safely. Offering to provide self-care items is also nice - but having a secured place to store them is also essential in those settings. Basic items such as socks are also nice. And if you are going regularly - exchanging gently used clean clothes for dirty clothes and doing his laundry might be nice.

Take things slow and keep things simple.


#10

Wow, this is great news. Thank you for sharing.


#11

Thank you for your suggestions, Vallpen! I actually did bring some socks, hats, gloves he could use on chilly nights. Unfortunately, whatever he isn’t wearing seems to go missing. :confused: I’m not sure if they’re stolen or given away. He said once that they all trade and borrow things with each other. He also seems very concerned with “making friends” and seems a bit suggestible which may also lead to him giving up his items. I brought some magazines and comic books with his name on them and never saw them again. I will look into getting him a cabinet he can use to lock up his things!


#12

You are being a great support for your brother. I’m sure he appreciates all you are doing for him.
When my son was in settings like that, I would mark things for him in a discreet way - just his initials in a spot that would not be visible.

Realizing that there were other residents that needed things, I would sometimes bring a pack of socks or something to distribute. The staff was able to tell me what was most needed by the residents. The men went wild over some back issues of motorcycle magazines of my husband’s. I would also bring treats sometimes - valentine candy was an example. I even replaced some of the rundown furniture they had with second hand items. I also brought treats for the staff occasionally.

Unfortunately, things in those environments very often ‘grow legs’ and walk away. Just a lockable foot locker would help.