That’s the way it was for my daughter. And it’s been a long road. A good one, but also a new reality. She can’t work but did go back to school and has a few friends. Love and patience everyday.
My mom has sz, she developed it when I was about 7— and for years I was really angry with her friends. I felt like they had deserted her. What took me years to understand was that my Mom didn’t want friends anymore and she pulled away from them also…same with family. When I visit she still likes the stimulation of getting out, but really doesn’t enjoy anything beyond about 5 minutes of small talk— She prefers to be in her own world. She has a whole life going on inside her mind that keeps her very busy and the real world is not a welcome intrusion.
I think it is tempting to project our own wants and needs and hopes onto someone with sz— but I wonder how much the disease has altered their own desires. I look at my mom and think about how awful I would feel in her situation— but over the past 23 years more and more I think i have it wrong…and that her reality and her feelings are very different than my reality and my feelings.
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For me I had to reflect on what a life well lived looks like - I had to think of all of the experiences of life throughout history and let go of what I perceived his life would be. I had to let go of what could have been. Believe me, they too, understand fully what they have lost. My son is stable on medication but fully understands and is traumatized by what he went through. He has gained a considerable amount of weight, uses unhealthy coping mechanisms and stays up late “because he doesn’t want the day to end” and sleeps in late “because he doesn’t want the day to start”. I can’t understand that but those are his answers. He has found a really good counselor that he likes - he wanted someone to talk to that could help him deal with the trauma of past psychosis and process what has happened in his life. The problem we run into is this - very few counselor / no counselors in this area comfortable counseling a client with SZ. He can’t be forthright about his past hospitalizations and experiences or he may lose the counselor. The counselor knows he has SZ though. The counselor is mainly trying to help him with substance abuse and is growing frustrated at my son’s slow pace to implement the changes he has prescribed. Getting a good quality counselor with experience with SZ is nearly impossible here. Like the other posts, I try to be supportive and loving. Love is the only answer - really for most of life’s ups and downs and especially for this. I have read about certain vitamins and sarcosine in particular. I have bought them all and excitedly explained and organized them. Eventually he just doesn’t follow through. I wish I could stay home with him and make his meals and make sure he takes the supplements but I can’t do that and meet the needs of my other children and spouse and maybe my own health - I don’t know. We’re kind of stuck in this place of success with positive symptoms (yay!) but a somewhat unhappy person with no motivation to change what they are not happy with. It is heartbreaking.
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Sounds like my 19 year old son. He’s barely been out his room for several years now. He was hospitalized recently because he wouldn’t even leave his room for the bathroom & lost 8 pounds in 2 months.
I try to be patient and respect his privacy unless I see his functioning deteriorating even more. I really struggle with his lack of communication and the isolation. I still ask him to do things with me & offer to take him out even though he usually declines. I’ve found that engaging too much just irritates him & he shuts down even more.
I wish you luck
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we are dealing with similar issues I can relate to how you describe it - it feels like a very long car crash accident.
It’s very hard to ignore your own feelings and act like a saint basically. You’re gonna feel hurt by his behavior even if it may or may not be conscious behavior from him.
I can only suggest you find a therapist for yourself or someone objective you can talk to who has empathy and you can rely on consistently. We isolated ourselves all our life and it was the worst thing. I went through depressions because of it and acted in similar ways (I would be extremely irritable and only wanted to hang out alone in my room and avoided going out at all) - but I was not getting any help and basically I came out of it in time and not unscarred. The memories are painful.
Now I address my own issues and I actually seek out help. Unfortunately even in the case of depression or severe anxiety friends abandon you. I found refuge in keeping my goals close to my heart and knowing that if I got up 5 times I can get up many times more and as many times as it takes until I overcome.
Don’t give up and don’t ignore yourself in this.
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The medication will need to be adjusted possibly many times until you get to something that works. It’s been over 13 years for my brother and he is not yet acting like he has any treatment - he has a lot of negative symptoms (irritability, word salad, confusion, mentally disorganised, moodiness and unpredictability, etc.). I think my parents ended up accepting and dealing with all this somehow but it took a toll on us and I decided to cut ties with my brother cause I couldn’t allow it to eat away at my chances in life.
Now Im working on getting my parents to take my advice seriously and go back to the doctor with him to find a new balance of meds to address these symptoms and also get him to accept he is sick because he denies it still.
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I am so sorry for your loss but you must forgive yourself and get rid of guilt. We all are doing everything we possibly can, each in our own circumstances, to help our loved ones, and I’m sure you did also. We cannot solve all problems. This is a terrible illness.
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You have been through a lot. It is not too late to find a support group, such as NAMI. Yes, try a renewed look at medication or other treatment, if your brother will do that. If getting him to cooperate is a challenge, you (and your parents) must read the book to learn how to use LEAP (Listen, Empathize, Agree (find common goals), and Partner (to take meds or other treatment). I know it works for many people and I have seen it work with our loved one. https://leapinstitute.org/ The associated book is a must read “I Am Not Sick: I Don’t Need Help” by Dr. Xavier Amador (Amazon).
Thank you for your thoughts. I’m sure time will play its part in healing . In the meantime I would urge others in a similar situation to investigate the emerging field of nutritional psychiatry. My son ended up in an institution where his diet consisted mainly of baked potatoes (ie hi carb) while being medicated ( ie tranquilized) No family therapy and precious little regard to him as a person. The medical system , at least here in the UK is Brutal and needs change.
I am so so sorry to hear of this. It is truly terrible and I grieve for you and your loss. Truth is you can not now think what more you could have done. It is the system which is broken and failed you all. Again so sorry x
Hi he is not willing to try much at the moment he takes a Vitamin D but I am working on his diet. He is now in the system in the UK … I really hope you find your own way through this …and i think your right acceptance to a greater degree is needed and at the same time NOT forgetting your own needs x
Well reading through the messages here I can see we all have similar unique stories with there own individual twists. It is so damn hard.
My son has been designated a care co-ordinator now. She arrives Thursday to look at his needs. He is settled here in the UK now, but spends most of his time in his room. On his laptop. I try to motivate him but its all but impossible. Im working on his diet, but its a battle. He looks for food every few hours (those damn dfffff…ing meds!!! ) Why they put him on mitazapine god knows! And the risperidone is now in my view crap it does nothing!
I miss my son, the bright funny sharp smart young man of 3 years ago. On my fb timeline came memory photos , from 3 years ago when he visited me in the UK with his friend. He was so vibrant , young, fresh and full of life. Little did I know then that a year later the onset of this terrible terrible illness would grab him.
He now lays in his room, does little eats loads. This was NEVER him. I could scream sometimes literally. But at least he is safe with me now in the UK. And I got him of smoking onto electronic ones. And as said working on his diet. I just wish I knew how to motivate him more … but maybe I cant. And @orson again so sorry 
it really rocked me reading what you have faced. I really really hope you find peace.
ahh well here is to everyone here today … wishing you all the best with your own paths.
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Hi again, my advise, for what its worth is to try to get healthy snacks in the fridge for your son to snack on. When I say healthy I mean things like meat, cheese, maybe boiled eggs and some salad things with dressing made from olive oil/ vinegar . Plenty of water too, fizzy water is refreshing and comes in little bottles which can be stored in the fridge. If you can persuade him to get into vitamins too, especially D3 and K2 if he isn’t get much sunlight.
Best thoughts
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…Here’s an article on the subject 
Nutritional psychiatry is the future of mental health treatment - OpenLearn - Open University
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https://www.nhs.uk/news/2017/06June/Pages/Can-magnesium-help-depression–or-is-it-just-a-placebo.aspx
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thanks for the links and Infor @orson I will defo check these out when I have finished work.
I DO agree that nutrition plays a big role in everyone’s health, more than most realize.
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Bad day with my son. He has hardly left his bedroom. I went out for an hour as I needed a break - he refused to answer my calls to check on him. He is also refusing to go for walks with me, something we did when he first arrived. I also found out he is reading and watching allot of religious material. Worried as this is how he started behaving a few weeks before his first major psychotic episode in November 2018
Its so damn hard but least he upstairs and I can keep an eye on him. His care meeting cant come quick enough on Thursday . Hows everyone else holding up ?
Hi @Simdad. I’m so sorry you’re in such a worried state, and that your son is still struggling.
If you haven’t already done so, you may want to look into getting a home monitoring camera, so you can keep an eye on what’s happening at home,.
I’m not sure which brands are available in the UK, but we use a brand called Canary that allows us to watch on our smartphones, using an app. The camera can be plugged in anywhere.
I hope things improve for you and your son. Hang in there.
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Thank you very much. I think my Dad read that book but Im not so sure it helped a lot because it’s still very hard to get my brother to follow or cooperate on ANY rules. They used to fight all the time and it has made me reach a point where I avoid spending any time at my parents’ house if he is there becuase it is just too painful to watch the fights, the tension, the arguments…Wait, did I say watch? I mean FEEL, because I feel it all a little too deeply perhaps.
I will read the book for myself, thank you again.
I hope my parents will take the necessary steps to get his meds changed and I have asked to be at the doctor’s appointment for that as well…
I hope the doctor will address the symptoms we are talking about and make it his mission to get him on the right meds, even if it means a long period of adjustment. I would be ready to support my family through that, rather than go through what is happening now which seems like constant instability, unpredictability and fear of looming crisis.
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