First post here! I have a brother who’s now 28 years old living with schizophrenia. He was diagnosed 5 years ago and ever since his diagnosis it’s been an extremely hard time to manage the disease. We’ve been through a series of hospitalizations, different trials of medications, hard time of getting him to take the medications and after 4 years since diagnosis has agreed to take monthly injections. He sees his family especially his parents as the enemy and blames us for his disease. Anyone of our family members that are helping him he believes is controlling his life and does not listen or want the help. He has decided to move out of my parents home where he had all the supports available to him to live on his own. Since living on his own the schizophrenia has gone worse and his housing situation has been precarious to say the least. As his sister I truly worry for him, we all do and we can foresee the path he is on isn’t supportive of his health and keeps getting worse. He’s now lost his home and doesn’t want us to support him with covering the cost of his home. I don’t know what to do anymore, feels like we tried everything with him over the past 5 years and everytime there is one step of improvement there is 10 steps back. Any advice or supports someone has used or found helpful would be greatly appreciated! My dad has completely given up on him and has respected his decision of not wanting to have any help from him
Clozapine is the only med that truly stabilized our son. Read the book “Meaningful Recovery from Schizophrenia” by Dr. Laitman.
It lays out an entire protocol to follow.
People have seen unbelievable results; our son is one of them.
Hi Onedayatatime.
Another sibling here. My brother was diagnosed with schizophrenia decades ago. To put it mildly, yes, it is extremely hard to manage this disease, I agree with you. Just know others have lived through having a mentally ill sibling and survived it. And keep in mind that your brother is managing this wild ride the best HE can, even if that seems impossible to believe.
Try to keep compassion in the forefront, even as you continue to look for practical strategies and solutions, many of which are on this forum if you search around.
Thinking of you and wishing you some peace.
Having schizophrenia can be really scary but it doesn’t have to be a life sentence if you go on the right meds. Meds don’t always work for everyone but that doesn’t mean the person inside is dead. When I was psychotic, I still connected with the real world and I was glad to have family and friends around who can support me. Having someone who cares can be helpful.
Yes, clozapine turned my son’s life around. In and out of hospital on a regular 6 weekly basis until they finally started him on what I’ve come to learn is the ‘gold standard’ of treatment. They were reluctant because it requires a fortnightly blood test, every fortnight, and my son didn’t want to go on it (because he wasn’t unwell!) but fortunately I found a doctor who took charge and made it happen - admitted him to hospital to start the treatment and monitor his bloods. It hasn’t been easy, but it has changed his life and ours. He had been on so many other antipsychotics with no relief from his voices, until clozapine. Be assured that the push back towards family, and the decisions he is taking now is the illness - not him. It is hard as a sibling (my daughter is 3 years older than my son and suffered terrible grief and trauma when her brother was unwell). It is a terrible illness, and I know how awful it is for the family. Wishing you and your family strength at this challenging time.
Dear O.D.A.A.T,
I have found that there are no answers to why he is this way, like there is no pill to get to normal. It has taken me time to realize that I can not control this situation, and oh how I want to do so. But there are things you can do. You will hear of Dr. Amador’s book, “I am not Sick, I don’t need help.” Read it. Next I want you to have a brainstorming session about your brother. Write down everything, from things he use to like, what he believes in now, everything. Then circle what is part of the SZ. Break down those items into smaller parts. Let’s say he believes the world will end. Find things you agree on. So I can agree that one day the world will end, I can agree that he believes it will happen on X date (when 2 other dates have passed). I believe he is talking to God, even though I do not know who is talking back. Then see if any of the non SZ items on your brainstorming map can be connected. The purpose of this exercise is to start having a conversation and figuring out where to start. Again, read the book and get creative. Does he believe he is anxious? Does he believe he is very Intelligent and he knows more than everyone and he has lost trust with his family? Find middle ground. You may not. But you need to try. Oh, the book talks about NOT having an intervention. If you already did, you can build the trust back. Anyway, this is a start. Next, take care of yourself. You can not help if you are mentally and physically drained. It is okay to step away for a bit to bounce back. Today was hard for us. Father’s day and all. I found an old card pre SZ to give to my husband. Yes, my 23 year old is not sick, but has SZ.
My son has it and started doing better but then went of meds again, and now is doing delta 8. (some low grade MJ). it isnt helping. Im thinking of getting a trailer or tiny home and have it paid off, and in my name still or he may sell it. They also probably need a care taker to stop by daily and get them to take meds and help clean up, and maybe cook a meal, and or make sure some meals come, and or get groceries delivered.
My 25 yr old son barely leaves his room or the house. He only goes to the refrigerator for food, and to the balcony to smoke. I offer all kinds of suggestions and funding for him to do other things, but he wont. He wont go to a movie either.
thanks, I’ll try to order the book
The difficulty is finding the drug that works for your brother. My son was diagnosed 8 years ago and it has been rough. The regimen he has been on for 20 months is working- he says he has the best “head” since pre diagnosis.
He has had lots of downs with scant ups and has hated me whenever his meds aren’t working or when he isn’t taking them.
He lives on his own and that has been good and bad depending on his med adherence.
I am paying for peace for you and patience while your brother settles into his new life.
Hi Onedayatatime,
I too have a sibling with SZ and it is still hard to sort out in my head what the truth is and what is her paranoia. I have chosen not to be in contact with her for my own mental health. My parents have not, and they suffer from PTSD from her episodes and hospitalizations.
The thing you have to decide is whether it is worth the cost to your own mental health and stability in life as a person to be his caregiver or not. Every case is different. Maybe his case is different from my sister’s; maybe he is less harmful to others. But even if he is harmless, being a caregiver in a society without resources is thankless and a hard path to take mentally even for a very stable person.
It sounds like there is some upset in your family because of this, so your family should not be your only support to fall back on when you need help. Find your bedrock, find your sources of support, and that includes things that have nothing whatsoever to do with the mental health field or the topic itself of SZ. Whatever your passion is, whatever your dreams are, you need to pursue those to stay mentally healthy and build your own life. Choose the balance that works for you, which might include taking space if you are not in a good place yourself. If you are treading water, don’t let him pull you down. If you feel secure and happy and can be a lifeguard, be that for him when you know you can. And have others surrounding you, don’t do it alone. Sometimes he has to look around him and see there is nobody to save him to pick himself back up and give himself a reality check, to come in touch with what sanity he has in tact, and use it. Unfortunately it is no guarantee. There is a risk of self harm. But don’t engage in your own form of self harm by not living your life to try and save him, especially as it is no guarantee that you can help him. Again, every case is different. Keep your senses and discernment and mental health strong so you can assess and judge for yourself. Good luck, you are not alone.
Perfectly stated. Spot on truth. I struggle daily with the balance of my own sanity vs living life as a caregiver for an unappreciative adult child. I’m driven by love and my faith. But I get angry. Sad. Depressed.
And then I ask ‘if not me then who will care for him?’ It’s exhausting. It has hurt our family. My two other children have seen horrific things. Our relationships are strained. My wife is a ghost of her prior self. It well and truly sucks.
I’m a believer in Christ and believe the Bible to be true. James 1:2 talks about how we should consider it pure joy when we suffer in Christ. I’ve taken this as my rallying cry ‘Lord, I’m doing this because I believe I’m responsible to love and care for my adult child. And it’s causing great suffering.’
Joy seems a bit of a stretch but I do feel at peace. Also whiskey helps.
Hi bex. I’m a sibling too. Thank you for reminding me and others to not get pulled down by our ill sibling, as that leads to no good. How can you help if you yourself are harmed to the point of not being able to function, right? This has been part of my journey to learn this, figure out the balance–and I hold open the possibility that in the future there will be no balance. It could be “him or me” if my brother takes a turn. So far, it’s been manageable…but my father, in the last months of his own life, told me to make the same choice for myself if push came to shove, because, as you say, there is no guarantee my efforts will make a difference.
Most parents and probably especially mothers, at least mine, would not be able to easily accept or process the whole “walk away” concept we’re discussing here. It’s a brutal choice for anyone to have to make.
Take care and thanks.
Hi Onedayatatime,
My heart goes out to you. I am the big sister to a schizo-affective brother. As I was reading your post, it sounds like it came right out of my life.
I don’t know the answer. I am still learning. My brother is currently homeless. He also sees his family as the enemy and has physically attacked everyone one of the immediate family members so he is not allowed to live with us anymore. We all forgive him, because he doesn’t remember when he has these “blackout” episodes.
It’s a hell of an illness. I show my support by listening to him, offering food and meals and when I can paying for a hotel room. I connect him with resources local to him (he is out of state), but he often doesn’t go because he has a lot of trust issues…his delusions play into that as well. He won’t be medicated because he believes it’s a way for the govt to control him. I am realizing that no amount of my love will change him. It’s his journey. So I just try and be there for him as much as I can while tending to myself and my responsibilities.
It’s so important, imo to take care of yourself. I used to allow this to drive me to the brink of sanity, but I realize that two crazy people is worse than one. I can’t help him if I’m off my rocker too. I attend support groups, see a therapist and I just continue to try learning and being better. I don’t have an answer, but I hope that some of this is helpful and I am sending you so much love and happy thoughts. on your journey.
I also have a brother with schizophrenia who is homeless. After trying to help him financially for years, I finally got the point when I was compromising my own finances to do so, and I had to stop. It was very tough to say no, and now I feel like all I can do is pray. It’s good to know others struggle with this awful illness, and I appreciate the feedback.
Its hard…im sownding everthing tokeepmy son housed