I’m tossing around some ideas… I already have an idea what the group homes are like where I live and while there is two that my son can go to, they are not really ideal as one doesn’t seem to have many his age and the other has less support. So I’m thinking if his dad can find a more suitable one where he lives then maybe that would be better. I’m also thinking that once my son gets a bit stable and can make a choice that he be able to pick between naming either myself or his dad as guardian or substitute decision maker. As long as it isn’t his grandmother. He may not like it but at least he will have a say to some degree. I don’t want to force him to be with me in my province/state if he would rather be closer to his dad and the rest of the family.
I feel sorry for you and your son. It must be terrible for him. I suffer with tactile hallucinations which often result in masturbation. I am very embarrassed and ashamed by it, because I didn’t realise until you mentioned it, that it gives off an odour. I have no sense of smell, so I thought I was hiding it pretty well.
This is a horrible disease.
Best wishes,
Padster
Wow. So sorry that its come to this. I hope it all works itself out.
My son has always masturbated fairly frequently. As long as he was doing minimal personal hygiene than odour was not a concern. I would get him to wash his hands before going out etc and he changed cloths frequently and showered. Within the last couple of months this has not been happening so it’s not masturbating alone but going long periods without washing/cleaning. Maybe making it a habit to wash your hands afterwards would alleviate any embarrassment this may cause you.
My personal hygiene is good. I am more worried about any odours left in my room. I think I must be like your son. I hate doing it, but the tactile hallucinations are so strong I often have little option. In truth I wish I was dead. I am worried that this will progress and I will end up hospitalised myself.
Best wishes,
Padster
Good idea!!!
Don`t let that happen!
My relationship is under stress, and one of the stressors is her schizophrenic daughter refuses to take the appropriate medication. (Well, the daughter wants benzos, but in addition to that, we wish she’d take a neuroleptic!)
Jayster
Sometimes you want to laugh at people that are so ignorant to this illness. Its really sad. My son was in an agitated mood and his aunt said she wanted to knock him down when he acted like this, he told her he would knock her on her ass. Wow…These are family that turned their back on him and to my knowledge was the only time they seen him agitated. They will never get it, the only thing good is I don’t care. The best thing you can do is cut the contact. You can’t fix stupid. Preacher said the other day “if you haven’t been through it keep your mouth shut” Amen
I am so sorry to hear about your son. I have complete faith you will make the best decisions in how to best support him getting stable.
If I would write a book about my success living with schizophrenia, it could be of service to others. On the other hand, so much that I did was illegal or immoral, and I don’t know how to get around my own material!
Here follows, then, one mention of success.
Some know I just had trouble with my clinic when I lost a prescription and needed it called in from the office; the woman who phoned from the clinic attempted to shame and intimidate me. I know it is almost axiomatic that schizophrenics have self esteem issues, and I have some issues, but nevertheless I do have self esteem. I didn’t buy into that woman’s attitude, and you shouldn’t either. Persons like that prey on our self esteem issues to enforce behavior that they want!
My self esteem is based upon a thousand tiny successes. Here then is a story to that effect.
I essentially left home at age 13 as a healthy adolescent, and I returned home at age 24 very sick with schizophrenia. The family should have known something was up as I had been locked in a mental hospital for 18 months, but basically, they didn’t see me as as sick as I was.
I couldn’t think straight, my hands shook, I couldn’t carry on a conversation, but I just kept trying to serve the Lord; I was far down the street of religiosity. I was close to giving up, actually, but I was writing to a special prayer group on the West Coast, and I believed I would be healed!
One day my Mom said to me, “Would you help me put on this necklace; I cannot do the clasp when it is on me.” I was willing to try something I had never done before!
My Mom had the patience, and I got the clasp done. Through out the following years of my life, a lot of women have asked if I would help with this necklace or that bracelet, and I have had 100 % success!
With those and a thousand similar successes, I have self esteem!
Jayster
I lived at home until I was 32 years old, and a lot of my behavior was odd. It seems my family never made excuses for me. It seemed my family accepted me and anyone around the family better accept me too or my father would have it out with them.
Presently, my brother Jim, the one with baroque schemes for unhinging his enemies, considers anyone who doesn’t treat me well his enemy.
Then, again, I am handsome, charming, and nonviolent, although
odd, for sure. Moms tend to like me because I rarely swear and dress nicely.
Jayster
In the Summer of 1975, my world crashed after the doctor, thinking I had made a great turn around, took me off all medicine.
My Dad bundled me up in the car, and drove me to the state mental hospital, where they were expecting me. I was fighting a huge battle with evil spirits for which the fate of the world hung in balance.
In the waiting room of the hospital, I kept catching evil spirits in my mouth, and I would bite them to death, then spit them into my hand, and not knowing what to do with them, I walked over to a potted plant and buried them in the soil there.
This behavior of mine considerably upset my father, who chastised me by saying, “Plants cost money.”
I noted to myself that seemingly I had done the plant no harm, and I had compassion for my Dad’s suffering his money fears.
Jayster
Barbie, so sorry to hear this about your son. It seemed something like this was inevitable knowing the situation with him and his grandmother. But if it helps at all, I have found that all of the many crisis are the heartbreaking and frustrating stepping stones to an eventual recovery.
Have you ever considered a monthly injection for your son? I highly recommend it. The Invega Sustenna injection has made a vast improvement in my son. Took a few months to get the dosage right and for the full effects, although there were good effects right off the bat.
At one point not too long ago, I honestly doubted I would ever see progress and felt despair and hopelessness quite often. I would say son has come from about 30% to 85/90% on the wellness scale. And no one has to fret about whether or not he has taken his meds.
Whatever you decide just know I’m keeping you and your son in my prayers.
Any news, Barb?
Jayster - enjoying your additions here. I try to remain hopeful for my 20-something son, and also try very hard to help him maintain his dignity and self-esteem. In spite of some of the stuff you did - you are a role model.
sending you strength and hugs…(((((((((((( hugs )))))))))))))))
I had a bit of a scare on Friday. I called and was told that he had been discharged… They had moved him to another hospital that had a bed available.
I just talked to his nurse. Trying to be nice about it but they keep talking about having family meetings with his grandmother and I just told his nurse that I would prefer they not do this as she is not mentally stable, recently suicidal and agrees with him smoking weed. That I have all of his notes since diagnoses and know what meds he has been on and what works. His grandmother doesn’t know any of this. He is only on 50 mg of Clozapine so far. He wants to be released to his grandmother 
Apparently she has been thinking about calling me to discuss letting me have my son if I will promise to not put him out on the street… But ya apparently she now wants me to fly out there and get him providing I agree to her terms… Honestly I don’t want her calling me… I just may lose it on her. Let me have my son! 
I just talked to him on the patient phone. Asked him if he remembers hitting his grandmother. Ya he stumbled and fell because he was almost dying (doesn’t know why) and threatened to kill his sister because his life is so bad… What a messed up disease! Not only because it causes this stuff to happen but then messes with the memories of what did happen.
I’m hoping his pdoc will call me to discuss his treatment over discussing it with his grandmother…
Oh dear. Sounds like Team Denial has regrouped. What about forming an alliance with his father and sister? I doubt they have forgotten events. You may be able to get a step nearer to a united front on the fact he needs treatment before he does someone serious damage.
It sounds like they will be starting him on injection today due to non-compliance. I think the nurse called it Paliperidone so Invega. I know how much he hates getting these shots…
Still waiting to talk to his pdoc. Have left msg’s with 2 nurses with my number but I guess they are still deciding on who is treating doctor will be which is hopefully decided today. Looks like they will be discontinuing the Clozapine which is fine in my opinion. I think the only reason other meds didn’t work was due to continued marijuana use.