A few people mentioned Sarcosine. I plan to ask W’s doc about it. God bless
1 Like
This is really the crux of the illness, I believe. When people who do not live with Sz hear the word “schizophrenia,” they usually think of the homeless bum walking around talking to himself. People do not realize there is this whole other aspect which is much more difficult to manage and is very painful for us as parents of adult children with serious mental illness to witness. Yes, the positive symptoms are scary for everyone but there are medications that can make all the difference for them and for us. If you can get them on something that works. But once that part of the illness is managed, well then, you’re left with this sort of empty shell or shadow. My son is 29 diagnosed at 25 and showing no signs of or interest in getting back out there. It is soooo very heartbreaking. Right now my goal is to have him ride with me in my car (he doesn’t drive anymore) to my home in the country where he drove himself to before. I just keep saying to him when I visit him – he lives with his dad – hey, you have to come out soon! 
and he just says yeah … sigh …
4 Likes
Hi. I’m relatively new to the forum and ran across this post from last year. I was wondering if you would mind sharing your results with the sarcosine? Very interested to find out if it helped or not. Thanks,
1 Like
Hi. We were advised not to use it until more information and trials are performed.
We are looking into trying CBD oils.
Take care!
1 Like
Thank you for getting back to me on that. Did some research myself and it really looks like it isn’t an option for those on Clozaril.
1 Like
Those are classic symptoms…my son is exactly the same…he cant sleep at night and he sleeps during the day. He smokes like a chimney and eats fast food. Showers occasionally, same with his teeth and he wears the same clothes even after showering. Hell he has on Mardi Gra beads that he got in February…my son gets Invega Trinza 4 times a year. He’s actually doing pretty well now.
3 Likes
Guardianship is a strong tool. I was guardian for my schizophrenic brother and so I am familiar w the responsibility. My next task is to apply for disability
I got him food stamps and applied for Medicaid but haven’t heard back. I am not optimistic about Medicaid based on statistics.
I think a legal advocacy is probably better than my attempts.
His psychiatrist encouraged the disability application.
Somehow it becomes more apparent to me that he won’t do it so I better run with it
God bless all of you and your loved ones !
Terry.
4 Likes
My son at present is being weaned off clozapine due to weight gain. He has recently started Invega injections. He is stable so far, nice young adult. But unfortunately is still unable to focus or commit to anything worthwhile. He still does not talk about his illness. I just treat him as a normal person. He does not question anything or make an effort to try and do anything different. He enjoys living alone in his apartment, but comes over for dinner with us his parents most nights. I guess all we can do for our children who have been given this horrible illness is to love and support them. Letting them know as parents we are there for them when needed.
4 Likes
When my son was diagnosed in 2013 I bought some. He wouldn’t take it. 
Hi all,- I m new here. I have taken over as my brothers caretaker since my mom died earlier this year. My brother has always lived with the family, first my grandparents and mom, then one by one they havemall died and i promised my brother i d always be there for him, and we have always had a great rapport. We decided to move south to be closed to mfy sister and our dad.so we l have more support. My brother is 54 and has been diagnosed at 20. He s been taking his meds now for the past 10 yes or so, while before that it was touch and go and he did have to be admitted on a 5150. I am so glad I found this site and others in my situation. I just wished I could’ve gotten my mom more involved with other moms in her place, but she didnt like sharing her thoughts,needs with others.
At this point I am trying to educate my dad about this disease and explaining about these negative symptoms. For a long time I didn’t know my brothers lethargy and lack 9f motivation were all part of SZ. I know my dad didn’t understand this either and I hope the facts will help him be more empathetic with his son.
I used to come visit my mom and brother a couple weekends a month and thought I had a pretty firm grasp on what it’s like day to day with him, but I was very wrong. It can be overwhelmingly draining and deplete my patience over time. So it’s learning for me all over again. I wanted to ask all of you caretakers, what helps to say to yr sons when they start going down that negativity path where anything that pops in their head is met with a barrage of anger and hateful Emotions? I ve tried reminding him that this is the SZ taking over and to try not to latch onto any one thought. But he doesn’t seem to be able to absorb the disease process part - being able to realize it’s the SZ that’s making him think in such a way.
Has anyone found some line of reasoning that helps?
1 Like
Why does your brother take his meds? Have you read much about insight or lack of insight called anosognosia?
There are methods of communicating with people who suffer from lack of insight. If you are looking for a line of reasoning - would your brother participate in therapy? CBT Cognitive Behavior Therapy seems to work well for some suffering with scz.
1 Like
If you haven’t read it yet, take a look at “I’m Not Sick, I Don’t Need Help” by Dr Xaviar Amador.
It’s designed to get people into treatment when they don’t realize they’re sick, but the LEAP method of listening and empathizing (the L & E) can also help you learn how to talk to someone who’s not in touch with reality in a good way too.
If he feels you’re truly hearing him and trying to see it from his point of view, it might calm him down - or at least make him feel like you’re on his side.
2 Likes
Hi dibby, My broken heart goes out to you because I know how frustrating it is to see your child just sitting in their room all day. My son is 22 and spends most of his time playing video games, and watching tv or sleeping. I try to run an errand or something with him everyday, but he doesn’t like to be gone from the house too long anymore. I have given up planning long outings for a while because it never works out. He gets more stressed and feels bad that he doesn’t want to go. It is so sad for us family members, but sometimes he does smile and we laugh together and he seems a little like his old self. It also puts a lot of pressure on parents to try to get them out and make all doctor and caseworker and therapy appts. When I get really sad, which is a LOT, I remember how much worse he was in the beginning. Maybe a new miracle med is just around the corner.
2 Likes
Hi Irene,
My son is in the process of changing meds at the moment. He has been on Closapine since 2012 and his weight gain has been terrible, considering he really does not eat a lot. He has just started invega injectable along side lowering of the clozapine. We have noticed he appears less sedated, a little more talkative and attentive. But his negative symptoms of the illness are still very much present. He spends a lot of his time in an apartment we have alone. I wish he could take that next step to try and live a more normal life. He likes solitude and his own space. Also he never wants to discuss his illness with us his parents.
Hi Libby, thanks for your response. My son has been on Zyprexa 20 milligrams for last 2 years and he has gained about 40lbs and he really doesn’t eat that much either. He has tried a few other meds geoden and risspersal, but he likes the zyprexa the best because he feels it has less side effects. He lives with me but he is on a waiting list for an income controlled apartment. His dad and I are divorced after 30 years of marriage and 4 children. My youngest is the one sz. .The older 3 are in their late 20s and thirties and on their own. My son is fairly easy to live with and we get along well, but I never thought this would be how his life would be, of course, like all of us parents. My son does not want to try any new drugs than zyprexa.
2 Likes
I, too am a former designer and mom of a 28 year old son with SZ. I bought a fixer upper in beautiful Stockbridge, MA and plan to turn it into a home for others with SZ with live in caregivers. I’m hoping to attract others nearby that can volunteer
their time and efforts to help finish building this and have their loved one live here. My son and I are currently living in the house. It will eventually accurate 5-6 bedrooms and is approx 3,000 sq. ft. plus a recreation barn. Stockbridge is a very safe town. If anyone is interested please contact me. This job of caregiving cannot be done successfully by the family alone and we need to creatively join together.
8 Likes
My son was on Zyprexa but got very aggressive. He is now on Prolexin injection and it works very well for his mental illness. If he wasn’t using drugs he would be doing very, very well.
2 Likes
My son is 23 as well and was diagnosed when he was 17 after numerous admissions . I also am frustrated as I work full time and come home to find him on the couch without anything accomplished. He has been on Invega tabs for the last 3 years but wouldn’t take them if I didn’t put them out for him every night. He refuses to be on the injection. He is starting to show symptoms again even on the medication. His dad recently passed away ( we had been separated for 17 years) but were good friends and my only support I felt I had since my mother passed away 5 years ago. I feel so alone and know I need to join a support group but finding th time is difficult. I don’t know how to tell anymore which is the disease and which is laziness . I come home from work every night running around cleaning up the days mess he made. He is constantly up at night pacing and talking to himself. His latest thing is coughing until he throws up because of the amount of cigarettes he smokes . I tend to just do things for him to avoid confrontation . He was only violent once during a bad episode of psychosis. I know I’m enabling him , just don’t know how to break the cycle. I’m all he has left in this world right now, but my mental health is fragile at the moment as well … just finally back to work again after a 4 month stress leave . It is difficult when as a parent you have no rights making decisions for them regarding their health. I could use some advice as well. My first time posting so I hope I am not offending anyone.
6 Likes
Find someone to spend the weekends with away from it all… There is no easy answer to our problem. I withhold cigs for compliance… and it works.
not possible,
4 Likes
Welcome to the forum @Marisser. It sounds like you are having a stressful time trying to care for your son with no support.
Hopefully, there will be some ideas on this forum that you can use. And we will always encourage you to care for yourself and take your own needs into consideration as priorities.
I am glad you could open up here and get some of your story heard by us. I am sorry for the loss of your ex-husband and your mother five years ago.
Best to you
4 Likes