I’m Eddie. My younger younger brother was diagnosed with paranoid schizophrenia in 1980. He died 5 years ago at age 56. I was his only caregiver for the last ten years of his life.
As many of you know all too well, we hope for some peace after our disabled loved ones passed away. Both my mother and my father said on their deathbeds that when Bill passes away at least I will then have some peace. But unfortunately that is not the case.
I feel so much guilt that I didn’t do more for him. I know I did the best I could but it’s heartbreaking when all your effort was for naught. I gave him everything; an apartment, clothes, food, cars. But he still insisted on never bathing or changing his clothes. I couldn’t take him anywhere.
The awful things he did will haunt me to my grave. He tried to kill my mother (almost succeeded) and not only did my parents not press charges, they still let him live in the house. He tried to rape my college girlfriend and blamed it on her for “being nice” to him. He stole cars (including mine and he wrecked it), and wandered the streets (in Chicago!) screaming at people (and got beat up a lot for it). I hated having him at my house; it was like having a wild animal in the house.
His delusions were over the top and frightening. He literally thought he was Hitler. He didn’t believe I went to college (even though he visited me there) and he didn’t believe that I bought my house with money I earned; he thought Dad gave me the money and always tried to convince me that the house was his too because of that. He thought I got all Dad’s money (in actuality he died with almost a million dollars of debt) and that I cheated him out of his share. And he was furious about it!
I never had any support in dealing with him. I never knew there was support. I even asked my doctor about it and he said that under the circumstances it was perfectly normal to feel the way I feel! I am estranged from the rest of my family because I didn’t do a good enough job of taking care of Billy. They all think I’m a horrible, selfish, uncaring person. And now that he’s dead they probably think that’s my fault too. They always thought that I had the power to magically straighten him out somehow, and that I was too lazy and selfish to make the effort. They haven’t the slightest idea of what it’s like to deal with a person like Billy.
I have read some of the posts and they seem all too familiar and likely. Nobody can believe how difficult it is to deal with a schizophrenic family member unless they’ve done it themselves. I honestly can’t share the details with most people because they’d think I was crazy.
I recently saw a movie about a mentally ill young man that lived with his parents. It hit really close to home and brought back painful memories of my parent’s heartbreak. The story had a “happy ending” which is nice, but I think schizophrenia doesn’t really lead to a happy ending too often. All I have to do is take a little walk downtown and I am reminded of my brother; stinking mumbling bums sleeping on cardboard with a load of feces in their pants are just like my brother. And he would have been sleeping on cardboard if not for my parents and later on, me.
That IS the truth. We here understand. I’m glad you finally found this forum. You can feel free to post your feelings here, and know that others will completely know what you are talking about.
My husband is right now going through some guilt because we did not agree to take in his schizophrenic cousin who is living under bridges in the Oakland area. She is a distant relative and her close relatives have given up on helping her after several years of time and money outlay. You went above and beyond caring for your brother, in my opinion.
I hope you can find a way to forgive yourself for anything you feel you might have done wrong. Remember, you didn’t cause your brother’s illness, and it has no cure, even to this day. There is only respite for some people.
My Family to Family class had 3 volunteer instructors. Since we took the class, two of the instructors lost their adult children who were living with scz. One had diabetes, his addiction issues made managing his diabetes impossible for him. The other had a wonderful life on meds going on when he drowned.
I know I thought both times that those parents’ lives must be easier when they lost their children. I know my life was filled with worry about whether or not my son living with scz was going to hurt someone or be hurt by someone. I had to fight the constant battle to keep his benefits going, keep him housed and always be ready to help him when he needed help.
I know that the peace your parents hoped you would find with your brother’s passing doesn’t happen when our family members pass away. We have a lot to process as we work on moving ourselves forward in our lives.
I don’t miss the schizophrenia, I do miss my son.
The old song “Bridge Over Troubled Water” always felt like my theme song in regards to taking care of Mike. The “sail on” parts would happen, he had times when he was so happy and loved his life. HIs dad, brother and I made such times possible. I hope your brother had times when he was happy. If he did, it’s because of the love and care that you and your parents gave to him.
When I was listening to the song the last year of Mike’s life, I visualized him in a boat sailing and he suddenly turned and waved at me - flashing a brilliant smile. What a lovely sight, I was so surprised and thought I’d better stop driving (it was late and I was on a long drive home to spend the weekend with my husband:)
Our work on Mike’s behalf, provided the water, the boat and the wind. No one except people who have experienced being a caregiver for someone living with scz could possibly understand.
Now I picture it differently. Mike still has his hand on the tiller, but he also has a worried fearful passenger that he is reassuring. Mourning is complicated.
Yes there’s guilt and judgement too. There is a big homeless problem not too far from where I live. Virtually all of them are mentally ill. I live in an affluent community and I hear the whispering about the families. “Oh, he comes from such a prominent family and yet they don’t do anything to help him.” I’m sure their families tried to help them but as we know some of them refuse to accept help. And the people think you can just move them into your house and they won’t be any problem at all, just meek little lambs. They think if you give them access to a shower and a washing machine they’ll clean themselves up and live happily after after. They have no idea in the world what the problem really is.
So when I see those poor souls lost in delusion, walking around mumbling and defecating on themselves, I think how much it must hurt the family and how helpless they must feel to help their loved one. You can’t have someone like that over for Christmas if you have kids. Do you want to traumatize your children? Do you want your house to get trashed and damaged by a careless, clueless, violent, delusional person? Every single time I had my brother over to the house something bad happened. He broke something or trashed something or caused problems with my neighbors, or he just harassed and hounded me to tears. He was actually dangerous to be around and I’m not exaggerating.
People that haven’t been through it don’t have the slightest clue. I never judge the families. The mentally ill force you to make a choice between a peaceful life and having them in your life. You can’t have both. I would never judge someone for protecting themselves and their families.
I’m glad you found this forum !
To go through this alone without support is incredibly difficult your right when you say Most don’t understand . Having your family unit ( your parents) the only others who probably knew the most already gone had to be very hard.
I fear this as well my father is elderly and still care taking my sibling to the best of his ability .
Sounds like you did what was in your control providing housing and essentials for him that is huge and often not an easy task by any means .
I think most of us wish we could do more . sincerely hope you find some healing and thank you for sharing here .
Not only was I alone caring for my brother, but I was vilified and ostracized by my other family members. It’s like they projected the stigma of mental illness onto me, because I didn’t cure him. Never mind that I wasn’t the one that forced the LSD down his throat (in fact I was away at college) or compel him to be a major pothead at the age of 15. You know I tried to stop him from smoking pot but you can’t really force someone to stop, can you?
He was like a 4 year old in a grown man’s body. Yes, it is just as repulsive as it sounds. He had no shame, no pride, no empathy. He NEVER said “Thank you” no matter what anybody did for him. He was just arrogant, condescending, ignorant and stubborn. But he thought he was superior to everyone, smarter than anyone. A lifetime of dealing with this has left me weary.
Sigh, I understand. It took me years to recover myself through self-care even though I am one of the lucky few whose relative made a pretty remarkable and rare recovery to a normal life.
Be kind to yourself through small actions that you like. I started gardening, and now my yard looks sort of like a park (compared to the dead dirty lot it used to be).
My brother also overdosed on Lsd at a young age must of been 16 or so he of course had a break then but came back to normalish for many years he had a cycle of maintaining for a few years then a break. He was never diagnosed until his early 30s despite being inpatient many many times.The last 6 yrs have been mostly psychosis though.
I’m sorry about your extended family’s point of view .the guilt we put on ourselves and then to have more from them .
Eddie, im so sorry for the trauma you experienced all those years and for the loss of your brother as well… my brother is schizophrenic as well and a TERROR daily, but not to the degree youve stated. I cant imagine how hard it mustve been I really hope this doesnt hurt your feelings but your family the ones that treat you the way they do because they subtly or not so subtly expected you to “fix” your brother sound like terrible people. I wouldn’t give them the time of DAY. They dont have a CLUE what its like dealing with someone even a quarter as hard as your brother was with all due respect… sorry if this sounds harsh but I would tell them off and then just cut them off. Why bother even trying to maintain a relationship with anyone THAT judgemental and also very naive bordering on delusional… it wasnt your FAULT AT ALL. you COULDN’T FIX HIM. No one could… im so sorry for the way it turned out. You did the BEST you could and you did him RIGHT. Screw what anyone else thinks because they dont know a thing. I’m praying for you and everyone on here… I hope you find peace and never feel guilty because you did ALL you could. Take care friend I pray you find the peace you so deserve with this
Thanks. It’s sad to say that my brother was the most awful person I’ve ever known by a long shot. He was basically Charles Manson with a much, much lower IQ. If he had any brains he would have been much more dangerous.
I haven’t had any contact with my family for over ten years. There is no point trying to have a relationship with such ignorant, vile bigots.
In retrospect, you could see it coming too. But who would know what they were witnessing, unless they had experience or training? We all hoped he would grow up and grow out of it. He was a very, very bad boy before his psychotic break. He was a drug fiend from the age of 13 or so. He was stealing cars and breaking into train boxcars before he was diagnosed. He got kicked out of school at 16 after being caught selling dope in the bathroom. And when he was little he never got a joke that everybody else got, but he told jokes that weren’t funny and got mad when people didn’t laugh at them.
So there were signs, but who knew what they were seeing? The 1960s and 1970s were like the dark ages for handicapped people. Mentally ill people were marginalized by society, treated badly by police, and relegated to misery by the system.
Good God… sounds like a nightmare. Sounds like he was sociopathic from the get go with schizophrenia that showed up later … terrible coincidence:( I know a lot of people who havent experienced caring for someone like that don’t think asylums or institutions are the answer, but I wish they were still out there and available in every state. I wish we still had places for people with severe mental illness to live and get some care… They dont have to be a nightmarish place where people are abused like you see in horror movies. I believe it could happen if the powers that be wanted to make it work, they could… dont u think so? But that’d be a completely different world Sorry to say but probably the right decision about yr family and im sorry for that… sad how mental illness can tear a family apart:(
Yes he was a sociopath and it was worse after his psychotic break. But who knew? I figured that out on my own just studying since his death, looking for answers. No doctor ever told me. No doctor ever explained anything to me. His social worker used to call me up and dictate to me what I have to do and what I cannot do. I thought the social worker was absolutely clueless and useless. I don’t think she knew the monster she was dealing with. He had her snowballed, just like my cousins and uncles. I always told her off. I had my full hands taking care of him as it was, and amazingly enough she was absolutely no help whatsoever.
Billy was in a public institution a few times when he was younger. Yes they are abysmal and shocking. He was in group housing and a couple halfway houses too. He always got kicked out for breaking the rules or not getting along with people.
When he died he was in a nursing home. He was discharged from the hospital to the home for end of life care. Doctors said he had six weeks tops. He didn’t last two weeks. The nursing home pressured me to have him put in a mental institution the day he was admitted. I told them to keep him medicated but he was still a big problem. Then he just died and that was that.
My parents both made me promise I would never let Billy go to prison or the mental institution. I kept my promise but in retrospect I think I was wrong. For the things he did (that I know of and I’m sure he did much worse things) he belongs in prison. I heard stories after he died that haunt me. Had I known I would have let him rot in prison. And mental institutions are made for intractable people like him, aren’t they?
I still find it hard to believe that this person was my brother, birthed of the same parents and raised in the same household. .
I really hope this doesnt hurt your feelings but your family the ones that treat you the way they do because they subtly or not so subtly expected you to “fix” your brother sound like terrible people. I wouldn’t give them the time of DAY. They dont have a CLUE what its like dealing with someone even a quarter as hard as your brother was with all due respect… sorry if this sounds harsh but I would tell them off and then just cut them off. Why bother even trying to maintain a relationship with anyone THAT judgemental and also very naive bordering on delusional… it wasnt your FAULT AT ALL. you COULDN’T FIX HIM. No one could… 