Frustrated sibling of brother with paranoid schizophrenia


#1

I’m really frustrated and need suggestions with how to express my needs to my brother, who has paranoid schizophrenia.

He was diagnosed 22 years ago. We worked together as a family through the crisis’ of getting diagnosed (a nightmare!), getting meds, staying on meds, not self medicating, getting SSi, etc.

Thankfully, my brother has done very well - on meds, consistent care, not self medicating - for 15 years. He no longer sleeps all day. His affect can be pretty animated. He has a great sense of humor and is now able to hold entire conversations and stay focused. And he can read books - that was a huge success for him as he loves to read.

Here’s my issue: He hasn’t done anything to socialize, attempt a part time job or volunteer to get out with other people in this 15 years.

He ‘helps’ my mom clean his house, which really means she does 95% of it. He ‘helps’ my dad do maintenance, which again means he does very little. In my opinion, my parents have created an unrealistic environment for him… he lives in his own house (there is a budget in place I’m told but they financially support him for the most part), he doesn’t clean it or upkeep it, he eats with my parents, he shops on line, he goes on family vacations with all of us and I feel like he ‘rules’ everything.

Trips, get togethers, vacations, holidays, birthdays… it’s around his needs and he plans nothing, prepares nothing and cleans up after nothing! He monopolizes conversations with bits of trivia that are irrelevent.

There are certain foods and ways to prepare food that he won’t eat, so we accomodate him always. He says that his illness causes him to have no motivation (I understand it effects motivation… is this something he can work on, though? He’s motivated to do only things he wants to do. It’s like dealing with a child without any consequences!), so he rarely helps with anything. Dinner’s done, he pushes from the table and goes to the couch.

I would like to visit with my parents without him always being around. I would like to go on a trip without discussing his sleeping needs, his activity needs, and his obsession with food.

My parents are getting older. There has been no discussion with what happens next… what’s the plan for my brother when they are unable to keep up with this level of ‘care’ for him? I’m so frustrated that they have not included me in any of these talks. And I’m feeling guilty and angry because I don’t want to keep up this level of caregiving that they are giving to my brother.

I support him, love him and want to understand him better but I’m not willing to give up my later life - having adult children, grandchildren and traveling with my husband - because my brother is ill and, in my opinion, acts as if the rest of us should work to make any aspect of his life, within our power, less hard because the voices have made (and sometimes still do) much of his life extremely difficult.

And now that my children are becoming adults, I really don’t want them to fall into this expectation of his… I’m ready to push back a bit… Please offer suggestions…

Am I being too harsh? How can I communicate my needs to my brother? Have any of you had to deal with the ‘what comes next’ conversations? Thank you so much.


#2

This is just my opinion… I understand no two cases are exactly the same however I too have paranoid schizophrenia for what that is worth and it sounds like your brother needs to grow up. It sounds like he is taking advantage of your parents and depending on them for everything. He will some day need to face a world where there might not be anyone there to help him when he falls. It would be better he learn how to take care of himself while there is still a support net like his parents have provided him to help him when he falls so that when the day comes that they are not there he will be more prepared to help himself.


#3

I appreciate your opinion. I, too, feel that it will be difficult for my brother when my parents are no longer around. I think he’s afraid of getting out there… and they’ve made it easy for him not to have to. I need to open up better lines of communication… Everytime I’ve tried to talk with him about my concerns, he gets defensive, says I don’t understand how painful everything is for him. Admittedly, I usually wait til I’m so frustrated that I can’t take it any more to talk about it! I’m sure that doesn’t help, but things have to change… or my family (the only family my brother and parents have) will just naturally begin to distance ourselves. That’s what’s happening now.


#4

@Just_the_sister I am not him so i can’t say with any degree of certainty whether or not this is true… however… being someone with a similar diagnosis to your brother, I am can attest that it is possible to live with this and be independent. It is not easy by any means, but it is possible. Things are painful but it seems like he is using this diagnosis as a crutch to continue escaping adulthood.


#5

@sasha I’m curious if motivation is a symptom you’re familiar with and found any ways of making it easier… I hope it’s ok that I ask… I really want to understand and I hope I’m not coming across has uncaring. I need to set some boundaries for my family so that’s what I’m going to do BUT I also really want to understand his needs and help him feel more comfortable. For example, he can go to the grocery store, the doctor, out to eat, to the movies, and shop (he loves to shop!!)… by himself. He is motivated by a desire to do these things, right? How can he become motivated to clean his house, take a shower, brush his teeth, offer to wash dishes/clear the table, etc.? You know? My parents tell me that when I push him with these questions, I’m causing a stressful environment and he could relapse (he hears noise now sometimes but no longer hears means, hateful voices). I don’t want to cause him stress, I want to encourage him.


#6

@Just_the_sister It is possible that the questions are causing him issues, and I agree with you it is a matter of motivation. I have experienced moods where I was not motivated to do things… though it is hard to separate what is caused by being Sz and what is the cause of just not wanting to do things. For example, I don’t want to get up and go to work at a job that I really don’t care for (like many adults I am sure)… but I do it because I need to pay rent and keep a roof over my head. I think the issue you are describing is one of maturity and is not unique to those who experience Sz but something universal that people either develop or spend their lives being dependent on someone else who does have motivation.

As for the stress levels… anxiety, depression, fear – these are all strong emotions that can be very debilitating. What might have started as just a child like preference for doing things that are fun versus doing things you need to do … could be amplified by Sz and delusions to such an extent that something like leaving the house to go get groceries could seem terrifying and impossible. But it does not sound like this is the case with your brother… if he is perfectly capable of doing the things he wants to do but can’t find the … motivation… to do the things he needs to do; this just sounds like a case of someone who needs to grow up.

Again … this is just my opinion.


#7

This is exactly what my son is going through now-at 37. It seems everything is delayed due to sz. But everyone has to go through the same lessons in this world. Maybe a third party could help with talking to your brother? It helped with my son. Don`t feel quilty-we all go through these feelings. It also might help if your brother had a case manager. I agree with sasha. Your brother has a hard road to go. I also used to get frustrated. Reading a lot of these posts helped me understand better how to help. A priceless case manager helped to draw boundaries and help my son feel more independent ( which is what he wanted all along ) and everytime he accomplishes a goal, he feels proud about it. Welcome and hope you can find some help here.


#8

@sasha @bridgecomet Thank you!! I am going to talk to him about ‘motivation moments’ vs ‘never having any motivation’ to learn more about how he feels… I’m hoping to stay calm and encouraging so he’ll talk to me. Then I’ll explain my needs. We’ll see how it goes! He does have a doctor (blood draw and med management) and a case manager of some sort but I don’t think he sees her very often and I’ve never been included in this part of his treatment. I know that his case manager offered assistance with house cleaning but he won’t allow strangers into the house. I’ll have to look into the case manager more… thanks, that may be a help!!


#9

Hello Just the sister,
Our situations seem a bit similar, I currently live with my older brother who was diagnosed when he was 17 and I was 6.

Your brother sounds so much like mine in many ways; smart, funny, med compliant, trying to improve. But there is always more work to do.

First and foremost, my brother ended up with more energy and motivation when his meds got changed and he pulled out of his depression and negative symptom. His motivation improved with the med change. But that was just our good luck.

I read that you tried to accommodate him until your frustrated and then the conversation becomes less constructive. For that, my brother and family and I did need a third party. The therapist gave us a lot of ideas on how to talk to my brother that didn’t upset him, and how to use a level language that didn’t accuse or stir up negativity.

Subtle doesn’t work with Sz. I know we sometimes assume that it would be perfectly logical to see the sink full of dirty dishes and make a hint, and the dishes get done.

That didn’t work. I have to tell my brother, “It will help me out a lot of you wash the dishes.” At first I asked him to help me wash them. Then little by little I did less and less dishes. But as he took over the dishes, I kept busy taking out garbage, and cleaning something else so I wasn’t just sitting around while he did the work.

But after a while, he got the hang of doing it alone. Then I would call him and tell him I needed him to complete this task while I was out.
I didn’t say “I want you to do this so you will know how to take care of yourself when…”

I did say, “I’m so tired, I need you to help me please.”

This is all just an example. We’ve been working on everything. My brother is much more self-supportive as well. He’s trying to heal from this with everything he’s got.

I hope you don’t mind me saying this, but it sound like your at the point where you will need some outside ideas.

www.nami.org
has information about caregiver support groups. My family had an entire world of resource open to them through support groups. Visiting nurses, case workers, social skills classes, Cognitive Behavioral Therapy, life skills classes.

Please look up a support group in your area. If you have support, you can better support him. Boundaries are learnable and so are skills that were lost.

Good luck and thank you for letting me post.


#10

Hi Just the sister…Im Karl. I have schizophrenia. Yeah I get bugged by voices but you gotta understand schizophrenia can be very stressful for the sufferer. It can be all the more problematic if family are not supportive. Also, you say your brother lacks motivation, well anti psychotics cause this. Anti psychotics dry up a feel good chemical in the brain, dopamine. One of the side effects of doing this is you will leave the schizophrenic feeling unsocial, lethargic and lacking in motivation.

Im 41 and too live with my parents. We get on and there is no problems except for my brother in law. Yeah my sisters husband is very judgemental. He has heard some things about me that have happened when I was severely mentally ill and he has treated me ignorantly and judged me harshly. He never talks to me and looks at me contemptuously when he comes to my parents house. He hurts my feelings but I put up with him. I bite my tongue not to reveal what I feel about him. Anyway, what Im trying to say is we all need to be tolerant.

As regards your brother getting a social life, there are mental health clubs. These mental health clubs are in all cities and a lot of towns. They are places where you drop in for a coffee and a chat and also there are activities going on like art, creative writing, drama and health management.

Also, I read down through the other posts in this thread and feel youre getting bad advice. From what Ive read above, it would seem that those posts would have you “revved up” and ready to have a go at your brother. This will not work. Personally I would tell my sister to get lost if she dealt with me like that. We all need to be understanding and to be caring. Your brother may have issues that youre unaware of. Also, and this is the truth, anti psychotics cause a huge amount of problems with motivation, sociability and leave you lethargic. The meds cause a lot of problems…as I said the objective of anti psychotic medication is to reduce/ dry up a feel good chemical in your brain. This chemical is called dopamine. Dopamine is called the “reward chemical” in your brain. So, what Im saying is, these bloody meds are responsible for us schizophrenics feeling like shit. They dry up a feel good chemical in your brain. They are downer meds. They leave you feeling like shit. Nobody would want to take a medication that left you feeling like shit. Thus I personally don’t take them. Imagine taking a tablet that is meant to make you feel crap.


#11

I find with my son that asking instead of demanding makes a huge difference. Underlying symptoms of ADHD or part of the thought disorder of SZ, I don’t know, but he doesn’t remember to do things.

The fact that your brother will “help” is good. “Growing up” seems to take much longer due to cognition being affected. My son will take his plate from the table to the kitchen. It seems to take a lot of repetition to make things stick. He just doesn’t think about it. He can walk over the garbage to leave… If I say “Hun can you take the garbage.” He will.

It can be hard to deal with my son’s attitude that he deserves to not have to do what others have to do to support him. There isn’t to much I can do about it. Whether it’s part of his SZ and/or a lack of maturity, I don’t know. I do worry sometimes about what will happen to him after I’m gone. My son’s diagnoses is paranoid SZ. I think everyone is different. The level of functioning for one person may not be realistic for someone else. It sounds like your brother is trying. He is being med compliant. His paranoia/obsession with food seems to be part of his diagnoses. Recently a thread was started in the diagnosed category:


#12

First I would like to apologize for not being as clear headed as I could have been making those comments.

I seem to have overlooked the effect of medicine, not being on any myself I seem to have forgotten what it was like to be on them. Katie (my fiancee) reminded me of my behavior when I was on meds and I would like to say that while I would consider myself highly functional (most days) that while on medicine I was very forgetful, and slow, everything took a great deal of effort on my part to convince myself to do anything that I did not derive some sort of enjoyment out of… and the number of things that I normally enjoyed started to become less the longer i was on them.

I have still not found a medication that works for me to this day so keep that in mind while considering my experience. So i would edit my previous opinion to state that while lack of motivation likely has to do with this illness and meds, It can be overcome with a great deal of effort on your brothers part, but it is not easy. For me … Katie my fiancee is my reason to do the things I wouldn’t normally be able to convince myself to do. If it was not for her I don’t think i would hold the job I have, the house we live in, the car I drive… i fear I might fall back into myself as I have done years ago. It should also be mentioned that I frequently have issues maintaining upkeep of the house and personal hygiene. I have to frequently use a crazy amount of concentration to deal with the psychosis all the while trying to remain as positive, happy and stress free as possible otherwise the depression on top of the psychosis leaves me unable to do much of anything and vulnerable to anxiety, fear, hate, loosing control to the voices and my grasp on reality. Despite trying my best, there are also days where it is just not enough and I loose my balance falling out of control.

I hope this insight has been helpful in some way.


#13

Thank you, Karl. I appreciate your comments. I do get ‘revved up’ sometimes. But my intention is not to ‘have a go’ at my brother even though it may have come across that way. I want to be able to talk openly with him about his needs and my needs. When we talk about the illness, we end up at this place of frustration where I think both of us feel misunderstood and not valued. I want to change that. I’ve seen the reaction to the meds throughout the years - sleeping all day, weight gain, no affect, lack of focus - just awful!! I’ve also seen the last 10 years of waking up in the morning and staying up all day, reading, shopping on line for hours, checking out different restaurants, going to the movies, etc. I am so happy that his quality of life is so improved. I feel like crap because I get so frustrated with him and I can’t imagine feeling the way he does. I do care. I want to understand. I also don’t want to live my retirement the way my parents are… calling to wake him up every morning, making him breakfast, going to his house to clean it, maintaining his house (maintenance), having him over every night for dinner (and cooking what he’ll eat and preparing it how he wants it prepared), including him in every get together and trip, etc. I want to be supportive but I can’t do that… I want to enjoy my adult kids, grandkids, cook for them, travel. I believe (and maybe I’m wrong because the meds cause so much havoc) that he’s capable of being a little more independent. That’s what I want to talk to him about… what’s his plan for when Mom and Dad can no longer care for themselves much less him? Thank you for sharing the meds issues… I did know about the side effects but I probably needed a reminder that just because he’s been doing so well doesn’t mean there aren’t issues that I dont know about. If you have any thoughts of what might work as far as communication about needs, I’d appreciate it. I like the advice I’ve been receiving about a third party… but not sure he’ll go for talking to a stranger. We’ll see. Thanks again.


#14

Wow! Thank you. I read your post and wanted to cry. I jump from anger to sadness so quickly with my brother. I need to learn more about the cognitive effects - I’m going to research more and read the thread you copied (I’m still learning how to navigate this site!!). I know that I need to be thankful for all the progress. I’m really going to have to think about (and maybe get help with) the ‘attitude that he deserves to not have to do what other have to do to support him’. I really struggle with this. This site has already been a huge help. Thank you.


#15

@sasha Thank you so much for your insight. It’s been very helpful. I appreciate your sharing the meds effects. I know that I need to talk to my brother about his situation, his meds, his feelings… but your thoughts helped me to feel validated and also recognize that he may need to feel validated, too. I’m so glad you have someone in your life that gives you reason to do things that might be difficult otherwise. That’s what I want for my brother - not the fiancé :slight_smile: But the reason to try!! Thanks again.


#16

I’m sorry to say, but you’ll have to start the ball rolling on that one. If you get the support and then find a visit nurse or care team that comes to the house, he doesn’t have to worry about going anywhere. Myself and others have been resistant to the idea of a care team visiting, but once they are here, and I can see that they are pro, and they seem nice, I’m glad they came.

The discussion of “What happens to J” seemed so long ago for me. My sis announced her detailed plans for me at an age when she was in no way understanding what she would be taking on. But she made the announcement anyway. She planned on taking care of me. I’ve been getting better, and I am trying so hard to be more functioning and self supporting. It’s a hard conversation to have.

Some people have to put their loved one in a care home. Others let them live in their own place with a visiting team and a professional network, others are very lucky like me and have a family that is still on their side so they will help me when times get rough.

I just want to say, I don’t think your getting horrid advice. I had training and help re-learning my life skills, I still have a long way to go. But I’m not unable to learn. I’m not helpless. I just needed different methods as far as learning.

I’ve seen some guys really benefit from vocational training and life skill classes. One thing my parents did for a while was let my doctor be the bad guy. He’s the one who said I had to get out and learn things, he was the one who put it on the table in black and white. I really disliked that guy but I needed my meds and my parents paid the bills… so to bad for me, I had to learn stuff.

I’m rather proud of how far I’ve come. I have further to go, but I’m pretty happy with how life is now. My kid sis is my friend and not my nurse, my maid, or my care taker. But she is the captain of my crisis unit. So if I do have a full episode, she’s there. I don’t mind her handling my med’s and helping me when I’m trying to get a grip. But she doesn’t do my laundry any more. Little by little.

It takes time to learn new stuff, but I do finally learn it.

Good luck I’m rooting for you.


#17

You are not alone in your struggles. I’m glad that this site is helping.

The last group meeting I was at for learning LEAP and another communication type, I made the comment “Throw SZ out the window for a minute…” Regardless of what the diagnoses is: SZ, ADHD, OCD, Mood or personality disorder… I think that trying to use LEAP can help to at the very least strengthen or open up the lines of communications so that a relationship can be started or built on. Everyone wants their feelings, thoughts and opinions validated.

http://www.leapinstitute.org/ - under resources are free videos on using LEAP
LEAP is a way of communicating to build trust. Listen-Empathize-Agree-Partner.
http://dramador.com/ - Dr. Xavier Amador is a clinical psychologist whose brother had schizophrenia. He is the founder of the LEAP Institute. Wrote the book: I’m Not Sick I Don’t Need Help! Can buy from his website.
Search Xavier Amador and LEAP on youtube.com and you should find some long videos


#18

I’m realizing as I read more that my family has not tried to bring in any outside help. I didn’t even know that there were those services available (although the begining of this journey was so difficult that I can understand why we naturally shut out outsiders!). My brother has a doctor that talks to him about meds and manages his blood draws, but my Mom does so much research about meds, she ends up taking info to the doctor. My brother has a social worker of somesort that checks on him once a month because it’s required for the assistance he receives. Now I’m wondering what she’s offered that he’s refused. There are not therapists or people that help him re-learn skills or push him to get out there. I did start the ball rolling yesterday. I invited my brother out to lunch and to hang out. We talked for several hours. It was good. I didn’t bring up all of my frustration, as I realized, through the comments on this thread that I may not know his day to day issues… and I didn’t. He shared some of them with me and I think it was a good start. We’re going to plan another day where it’s just he and I. He thinks I get frustrated because my parents pay so much attention to him and I reflect that frustration on to him… he may be right! Through our planned days to ourselves, I will bring up other care personal. I also need to research what’s available in this area. And hopefully, he’ll invite me along to meet his social worker at some point. I definitely see myself as his future ‘crisis team leader’ but I’m not prepared to do his laundry everyday! He still made comments that frustrated me (that appeared very self centered) but I think if I continue to talk to him rather than avoid him (which I admitted to doing sometimes) that things will get better… I hope!!


#19

It sounds like an good start to an amazing friendship. I’m really glad you guys are starting to talk. That right there is the start. :thumbsup: :smiley:

I know that the days where my sis and my other brother left the Sz conversation on the shelf and just hung out with me; we talked about comic books, sandwiches and everything other then Sz. Those were some of my favorite days. I’m not saying EVERY day has to be SZ avoidant. But having a day off from SZ here and there really did lift my spirits and improve our friendship.

As far as finding resources in your area… My family started with the DSHS and the doc your brother talks to or the care team that visits once a months may very well have a host of ideas, but if they have never been asked… I know some care workers don’t want to rock the boat.

If the person who visits has gotten the message that this family is NOT interested, then respecting that boundary and not mentioning anything is most likely what is happening. It’s surprising what a small art class one hour a week at a local community center can do.

Bare with me on this one… food banks deal with a lot of homeless, a lot of homeless are also fighting a mental illness… food banks that I’ve gone to do know of resources for the mentally ill. So that would also be an avenue to look for help.

There is a very noticeable difference in the functioning of the people in my Sz group. Some of our older members didn’t get help at all due to family shame and myth’s of the 50’s-70’s. Younger people around my age have had some form of outside help, and it shows. Most of the people in my age who have outside help can drive, can hold down a part time job, can self manage to an extent. We all had a hard path getting there, but outside resources were vital. Plus it takes more pressure off of you.

I really hope you find a support group to vent the frustration. You have… you’ve found this site. But having a person to talk to is also nice. If you get to vent and then get a good idea in return… bonus.

Good luck… it sounds like things are going to get better for you.
I’m rooting for you.


#20

I have conversations with my wife. She is my caregiver. Here’s what works. Comparisons between the amount of work I am doing and the work she is doing. Once your brother does something and is tired, say something like, that’s how I feel all day. Lots of love. Tell your brother not to overthink a task (stop spending so much time in his brain) and just get something done. Restrict computer and phone use. Usually, I do something, and then my wife comes in later and finishes it. I am working on becoming more competent–that is, doing 100% of a job.