Family and Caregiver Schizophrenia Discussion Forum

What Can I do? Who can I turn to? Needing help


#1

I am glad that I found this forum as I really need some advice and help and hope to find it here.
Here is my situation. I am the sole caregiver for my mother who is 93 years old. I live with her in her home along with my boyfriend and brother. My brother, who is now 63 was diagnosed with paranoid Schizophrenia when he was in his 20’s. He receives money from SSI. He has made attempts to have a “normal” life by getting married, having a daughter, moving out of my mother’s home. His marriage ended in divorce, he doesn’t have a good relationship with his daughter and he always would end up coming back to live with my mother. He has now lived with her for the past 20 years. He won’t take any medication and doesn’t believe that there is anything the matter with him. He is constantly thinking that someone is out to get him, whether it be me, my boyfriend, the mailman, etc… He has not spoken to me kindly since my boyfriend moved in with us over two years ago. He doesn’t like my boyfriend even though my boyfriend has tried to be friends with him. He always ends up disliking everyone. Somehow someone did something that turns them into an enemy.

I have tried so hard over the years to be nice to him, to be understanding and to help him such as loaning him my car, letting him use my computer, etc. But my biggest mistake is that I have never talked to anyone knowledgeable about his illness so I have no idea how to handle it and have never been able to help him in that way. My mother has basically lived a life of denial about him. She has always let him live and treat her any way he feels like. She has been afraid to ask him to move out over the years because she is afraid , I think, that he will try to kill himself as he did one time back in his early 20’s. Every time any of us have complained about him to her her stock answer is “At least he stays in his room most of the time.” Or “just ignore him if he bothers you”.

It is very difficult for me to be understanding. I am one of four siblings and feel that I have been left to deal with my aging mom, who also has dementia now and my brother on my own. My other two siblings are really no help to me at all. My brother who lives with us is supposed to be paying a portion of the utility bills which he has decided not to pay since last September. He does nothing to help me with our mother and just lives as he pleases here. Everything is up to me to fix, take care of and do.

I can take and handle a lot but I’m just getting to the end of my rope and trying to hang on. It’s very difficult taking care of my mom. My boyfriend and I also work and we are the only ones doing any housework what-so-ever.

Friends have told me that I should try to have my brother removed from our home. I don’t know what the answer is because the situation is becoming so impossible and hard to live with. But where would he go and what would he do? What do others do and is there anyone out there facing this sort of predicament? Who can I call for advice and help?

Thank you in advance!!!


#2

Just to clarify, the brother not paying the bills is the one with SZ? or is this another brother?


#3

The brother not paying the bills is the brother who lives here with SZ.


#4

First things first… you are very correct in saying you need some help. I’m so sorry to hear of your situation. Your poor brother could have gotten help and resources that would have gotten him moving forward again. Denial and living in a closet never helped anything.

I’d say at least start with a support group in your area and that will lead you to resources in your area.

www.nami.org

Next you might want/ need to find some visiting nurses and they can help with assessment of the situation and social assistance paper work and stuff like that…

look up DSHS in your area. (Department of Social and health services)
A google search will bring up DSHS in your area

Also you might want to check out some of the hospitals that have maybe have a day hospital or other resources that your brother might benefit from.

But I sort of understand a visiting nurse being a first good step. If your brother gets testy… you could say they are here for your Mom.

You are dealing with an aging parent and an ill brother all on your own. I do hope you find some help soon.

When I was at my worst… this would happen a lot as well.

http://schizophrenia.com/ami/index.html will help you understand this illness a bit better.

http://schizophrenia.com/invol.html - assisted treatment

http://schizophrenia.com/coping.html# - support groups.

It’s not much in the vast world of resources that are out there now. I do hope you can get some help and some ideas.

It’s very hard to get the ball rolling and with your mom being in denial and I could see you not wanting to rock the family boat… it’s going to take a great amount of courage for that first step. Don’t be afraid… there are a lot of resources out there and more coming available as time goes on and more is known about this illness.

I’m rooting for you and your family.


#5

Thank you SO much!! At least now I have somewhere to start. I so appreciate you taking the time to give me all this information!!

Thank you !!! Thank you!!! Yes, you are right, this is the biggest challenge I have ever faced.


#6

You have a lot to deal with, a lot of incredibly difficult stuff, so be sure you take care of yourself. I think most of the caregivers here have also reached that ‘end of the rope’ feeling at least once, and can empathize with your struggle.

I suspect you will be in for a struggle as well if you attempt to get treatment for your brother if he thinks he doesn’t need it. Getting health services to help with your mom is a great idea tho. And getting familiar with what services are available in your area for your brother, and what supports are available for you, would also be helpful.

My guess is that those people who are telling you to put your brother out don’t have much of a clue about mental illness, and are blaming him. And that is very easy to do, even for those of us who HAVE a clue - it is just the way we think, that people can and should be responsible for what they do. Unfortunately, it is likely there is enough stuff going on in your brother’s head that somehow he convinces himself he doesn’t have to be. I’m not saying its RIGHT, but I’m saying that it is difficult for him to think clearly about responsibility. It is a very hard situation to be in as a caregiver, trying to determine what level of responsibility a person we care for can handle. And it is easy to feel it isn’t fair to us - which, honestly - it ISN’T, but then life just isn’t. So try to maintain a level of understanding of what your brother is dealing with as well as what you are dealing with. You have a tough job to handle, and I hope you can get some support.


#7

Well, I didn’t hear any slamming being done. I heard someone who is struggling to figure out what she can do in a difficult situation.

Coming down on her boyfriend is hardly fair - by her account he has made attempts to create a good relationship with her brother.


#8

He has made attempts to have a “normal” life by getting married, having a
daughter, moving out of my mother’s home. His marriage ended in
divorce, he doesn’t have a good relationship with his daughter and he
always would end up coming back to live with my mother.

How is that in any way relevant? It’s purely designed to put the schizophrenic in a negative light.


#9

call the police. your brother needs to be hospitalized until he gets better.


#10

Thanks to everyone for your support and advice.
I appreciate it more than you know!!


#11

I didn’t hear any slamming either. I thought “normal” was in quotations for a reason, like to say kind of “this is what people accept as normal-this is what is expected-whether it’s for you are not.” The rest I just thought was included because it was what happened-he got divorced - fact - he doesn’t not have a strong relationship with his daughter - fact. These are the reasons he lives with the mother, may be depressed, and it shows he struggles with person relationships.

Trying’s post is may be open to interpretation-because writing is different than talking-there is no tone of voice or facial expressions so it’s harder to convey meaning. Since it can be taken several ways (obviously) I think we should be kind, hear the love there, and give Trying the benefit of the doubt!!!

I am so sorry you are going through this worry and isolation. I agree you need help! Reach out to those resources and get the help you need, and please take care of yourself. Caring for others is very hard work!


#12

The last thing I want to do is slam my brother or anyone else who has any disease or any hardship or challenge in life for that matter. You are absolutely right 21 angels, I put “normal” in quotes so as to mean what society might dictate as being normal. Thank you for understanding this!! I am an overworked human being trying to do the best I can for my mother and brother. I also don’t want to hurt myself in the process and am asking for help. I have already called for a support group in my area thanks to the kind advice I received here.
Kindness and understanding really help a lot !! Thank you!!


#13

Welcome to the forum @trying77

I will add some links for you to look at:

Please look at these sites:
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

http://www.treatmentadvocacycenter.org/index.php - under problems you will see anosognosia
Anosognosia looks like denial but is different.

http://lesswrong.com/lw/e25/bayes_for_schizophrenics_reasoning_in_delusional/ - helped my understand delusions

As @SurprisedJ said, denial doesn’t help anyone. Currently I’m in a situation with my son where his paternal grandmother is in my opinion just helping my son to stay unwell however she thinks she is doing the right thing.

I wish I had some advice on how to deal with the finances but I don’t. Maybe if you are paying for other things like internet etc then don’t give him access until he has paid for his portion. He may not like it but all of this should not be falling on you especially when the SSI he is receiving is to cover his living expenses.

Take time for yourself and your BF. Honestly housework can wait. Go out for dinner just the two of you. Spend some time doing things that make you happy not what you feel responsible for.

http://forum.schizophrenia.com/t/the-caregiver-space/10783

http://forum.schizophrenia.com/t/caregiver-stress-burnout/3381

http://forum.schizophrenia.com/t/a-thread-for-care-giving-tips-pics-quotes-and-or-phrases-welcome/2191

http://forum.schizophrenia.com/t/8-ways-to-help-someone-live-well-with-schizophrenia/10496

http://forum.schizophrenia.com/t/anosognosia-article/12157

http://forum.schizophrenia.com/t/rcpsych-royal-college-of-psychiatrists-schizophrenia/12539

Sorry I know that was a lot of links however between your mom and your brother I think you could probably use all the help I can give/find.


#14

Glad you found us!
I think you already got a lot of good advice here. I would just like to say that you are not alone.

It may be appropriate for your brother to be in the hospital until he is stable. Wondering if your other family members could help out financially. Until my sister came in on the past 3 years, I would have sunk in bills due to my sons illness. Dont know how bad you mom is, hope you can get some assistance with her also.
Wishing you luck!!


#15

I don’t live in the states so any advice might not fall in place but yes I think hospitalization. Awareness of his illness may be a little late at this age after continual denial but it sure is helpful for you to be aware of the illness, you got a lot of resources already by members of this community so go ahead. You are always welcomed here to talk about things that others might not understand you will find a very understanding community here. Good luck and i wish you strength and perseverance out there with your mom and bro.


#16

BarbieBF, Bridgecomet and Qutaiba,
Thank you so much!! It is very comforting to know that there are people out there so willing to take their time to help others. I really appreciate it!! I have contacted a support group in my area which I will try out next week. In the mean time, I will be doing some more research and looking at the links that you gave me.

My brother is not really so bad that he needs to be hospitalized. His behavior is difficult to understand. He definitely imagines things and thinks that everyone and their brother are out to sabotage him in some way. And yet one can talk to him sometimes and he seems so together and is so intelligent. He is a very talented musician. But he is anti-social, ends up disliking nearly everyone and is unable to work. I am extremely lucky that my mother is in good health except for her dementia,

What I am striving to learn is how to handle him. When he puts a used piece of dental floss on the place where I eat at the table to let me know that he knows that I stole it. (I didn’t) Or draws crazy eyes and pastes them over my eyes in photos my mother has around the house of me. How do you deal with that? Do you ignore it? Do you get mad? Do you call him on it? What is the best thing to do? Does anyone out there know??? Thank you all!!! xoxo


#17

I can see how that behavior would be disconcerting. Honestly, without treatment he won’t stop that stuff nor can he really help it. There will be no “rationalizing” with him without treatment. The reasons behind him doing those things-are real to him. The feelings he feels because of his delusions and paranoia are just as real. Sometimes arguing about them makes the delusions stronger. When my daughter’s symptoms were bad I had to walk a fine line between feeding the delusions by acknowledging them (which arguing about them would be doing) and yet not being dismissive that no matter how irrational they seemed to me to her they were all too real. I tried to imagine how I would feel, the fear, the anger, if there were actually cameras watching me (one of her common delusions) or that when I went out in public I could read people’s minds and they were going to hurt me. If I REALLY believed that-if that were true for me, how horrible would I feel? How much would I long for safety, and compassion and someone to give me a reason to trust?

Plus everyone is different about their delusions. With my daughter, not that she didn’t believe them, because part of her was absolutely convinced of them, but part of her-somewhere down deep new they were not real…she questioned them from the beginning-and it caused her immense pain and shame and confusion. I could do some degree of careful reality checking with her. I would ask her questions (never tell her things weren’t true) about the evidence of a delusion and she would think about it-sometimes. But you have to be very careful with this.

I would NOT get mad (even though some paranoid delusions can be really insulting-like “hey, I’d NEVER do that!”). I firmly believe emotions feed directly into the nature and severity of delusions and hallucinations-based on my experience. The more emotionally you react the more scary it will be for him-the more confused and alone-which will only feed the paranoia. I don’t know if this is the right thing for you-but I’d invite him to talk about it rather than being so passive aggressive about it. Say neutral things that acknowledge his feelings but don’t confirm he’s right, like “I’m sorry you feel like I’d do XYZ. I love you very much and I only want to know how to show that to you.”

It’s not easy.


#18

I can only guess at why he would draw crazy eyes and paste them over your eyes. My theory. What we may see as crazy eyes may be what he thinks normal eyes look like especially if he is experiencing delusions and/or hallucinations when looking at himself. Some have trouble with the feelings that eyes in pictures are looking at them, following them and even criticizing. He may be trying to cover up what he thinks the pictures make him feel. I know that at times it was hard for my son to read facial expressions. When not stable he would tell me that I looked mad when I wasn’t. His own internal feelings at the time where clouding what he saw.