My son’s illness has been progressing and evolving constantly over the past 3 years. It is at the point that I cannot remember the last time he held a conversation. He barely responds to questions or comments, He speaks very briefly asking for something he needs. When he is in a rage, he can rant on and on endlessly. It is so sad to me that when he is hurting, I cannot get him to talk to me about it and when he seems ok, I cannot have normal small talk with him. He paces the house and yard constantly like a caged animal and has been limping lately because I know his feet have to hurt. Can anyone tell me if this is normal with the illness or do they have some good days with their loved one? I can’t remember the last good day.
I am so sorry that your son doesn’t speak much. It is so very hard when they can’t communicate. Yes, it is normal for there to be communication problems, anger and isolation. I also believe there are sort of “cycles” to this illness, better days occur sometimes, but not as often as wanted usually. Unmedicated, my loved one would only have a few good days a month. Medication has changed that for her.
@oldladyblue, We are trying to keep him medicated but he is so inconsistent and refuses a lot as well as having had a lot of difficulty finding medications that were compatible with him. His doc did a DNA test which showed almost all the medications he had tried at the beginning were incompatible with him. I think that ruined his trust in medications ability to help. Now that the illness has progressed, he is extremely resistant to treatment. He isolates but is very sad about being lonely. My heart breaks on a daily basis because it feels like throwing him life rafts and he pushes them away and keeps drowning. Thanks for always being a support to talk to in this group.
f difficulty finding medications that were compatible with him.
have your tried Clozapine/Clozarine?
Catherine talked about it on this website and it helped her son to get much better. I know also several others that benefited from this medicine.
what about Invega-sustena Monthly Shot? it is worth a try.
Thank you for your kind words. I understand your son’s resistance to doctors and medications as I struggled with that with my daughter since March 2016. A 30 day shot and a court order to medicate are the difference between constant psychosis and the almost 100% normal behavior that has existed since Dec 9th. I assume your son has anosognosia? That lack of insight is the REAL curse of schizophrenia. It is heartbreaking. However, don’t lose hope, as perhaps it might change in the future. I hope so.
so what does his doctor recommends that would help him in terms of medicine?
or psychotherapy, Cognitive therapy or other types of Theraphy
Something should help him?
How old is your son?
We tried Invega and it didn’t do well for him. I asked about clozapine but the Dr. said that would be our very last resort because of the effects it can have on the immune system. The depakote and risperdal work fairly well for him if he is consistent but as soon as he stops taking them we are worse off than we were before. It is a daily struggle to get him to take them.
He refuses to go to therapy and we can barely get him to go to his Dr appts. Mostly I communicate with his physician through telephone consults. He is 19. He needs therapy desperately and I think he could be helped but he is so resistant to being helped and I know it is anosognosia but it is so frustrating to try and understand why someone who feels so miserable won’t do the things that could possibly help him. I just want my son back.
since Depakote and Risperdal are working OK for him. then try to see how risperdal shots works and also use something to motivate him to take depokate
.Usually the shot will show improvement after 4 to 5 months. it takes time. when my son took Invega first time last year, he improved a little after 2 months. This year, he is taking again in an Facility and we started with 234mg first time then 156mg then switched to 117mg for several months. he is now back on 234mg in the last 2 months and doing better than last year. still needs more time to be stable
you need to allow more time for the medicine to work. Hopefully you find a way to convince your son to stay on medicine someshow…
I know the feeling that you want your son back… keep working on convincing him. may be if he likes cigarettes or going out for dinner or bowling… fin something to give him motivation…
My son is currently on Rexulti for past 2 months. Not seeing the improvement in the negative symptoms but the psychosis is better. He endlessly paces and walks around the house and in/out of the house all day. And, communication is limited. However, he is in a better place than he has been for the past 1.5 years. This is the 5th medication we are trying. Don’t lose hope. Your son is in there and needs the support to live with this illness. It will get better and I agree, there are good days and bad days.
I’d like to know if there is any way to constructively direct my son. Any advice on ways to help engage my son to be productive or spend time constructively. He is struggling to figure out what to do with himself all day and it is heartbreaking.