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I want my son back


#21

Can anyone tell me on here if they are from the uk i am finding it hard to find any support groups to attend over here. Thank god you guys are on here but would be nice to meet othere people in person?


#22

There are folks from the UK on here - you might want to start a new thread to ask to make sure they see it?


#23

Ok yes will try that how do i start a new thread? Ive never used a forum before.
Just seem all over the place at the moment simple tasks feel like a mountain, i call the hospital daily they tell me hes now able to sleep but wont come out of his room he wont speak to me, i want to visit at the weekend but is it wise when he gets so angry and upset with me i really dntwant to add to how hes feeling in a bad way but then i want him to know im there for him. Will he ever see past this hate for me? We are normally so close his rejection just cuts so deep. But then i think i must be strong hes the one with so much more going on and hes so extreamly poorly right now. I dnt know how long he will be in an intensive care bed then he will be moved to an acute ward then they say supported living before coming home that is such a long journey and thro all that is a massive chance relapse again.


#24

Other family members from the UK have told us how much better your services are than ours.

I think the hardest part for many of us is releasing our children to their journey. We know what a struggle it is for parents whose children do not suffer from mental illness. Our children’s illness seems to cry out for our help and often they just want to hande it on their own.

Not being able to help is much harder on me emotionally.

Don’t confuse your son’s feelings toward you with the effect the illness has on him. I know its hard, but try to hang onto that previous closeness for your own comfort - but you can’t ask it from him. From what you have described, he might have a long slow recovery. NAMI always tells us to think in terms of years, not days or months.


#25

I totally understand how you feel. My son is 22 and has been Baker acted probably nine times because he is such in denial of his mental illness. He is currently living with me and taking his medication as prescribed but he still has such paranoia and delusions. I wonder if he’ll ever get any better. I hear stories that there is Improvement I just wish and pray for my son that there is. I probably cry daily because I’m so sad for him that he will never be able to do and be all of things that he wanted. He’s depressed and sad because he has no friends and mostly stays in his room and just is all in his head. This has affected me in many ways but I try to be strong. Family members and friends just don’t understand because they don’t live with it on a daily basis like us caregivers do. It is so hard and difficult. Some days I just don’t know how much longer I can take it. I pretty much do not have a social life because I’m afraid to leave him alone and never thought my life would end up like this nor his. My heart aches for him.


#26

I repeat those very words every single day! I wish there would at least be communication with him. After his hospitalization in June and having found him after 3 years of not knowing about him, once again I can’t find him. He is 38. If I found him, what next? How can I help him if he physically and emotionally hurt me. I am a mess. Lord help all the mothers on this road. I want my son back!


#27

It is as if you are taking the words right out of my mouth. My son is 33 and his life has always been a struggle. Many ups ad downs but more downs I am afraid. The antipsychotics he takes have all worked for a few years and then they don’t but all the while he believes he is fine and everything that goes on in his strange world is 100% real. It is so hard then to change his treatment when he believes he is ‘fine’. There is, of course, always hope. And I can still go back to some really good memories of when times were better. So you can do this. As they keep telling me, “It’s not him, it’s the illness.” Hope this helps.


#28

Does this disease actually go into remission sometimes?


#29

I also miss my son as he was when he was healthy. Like all of us I had so much fun with him when he was young and had such high hopes about what he would accomplish. I have cried many rivers of tears, but today we have been kinda hanging out all day, went to Target, grabbed a bite to eat to bring home and now he is in his room and I am in living room. He was very nice to go out with, pleasant conversation, and he helps carry stuff. We BOTH were so excited to see our dog when we got home. It isn t at all what I had expected both of our lives would be like at our ages, and it makes me sad and scared about the future, but I am trying to accept it. Not quite there yet though. And this was a good day in our world.


#30

I read in Dr. Torrey’s book and in other places that 25% of schizophrenia remits within the first two years.


#31

interesting to know.


#32

Not to get off the topic, but just wanted to say that my son had a diagnosis of generalized anxiety disorder, also young, third grade, I think. He was diagnosed with paranoid schizophrenia in 2013 at the age of 25.


#33

My son was diagnosed in 2013. I’m still very sad and crying every day. You are not alone in your feelings. We know.


#34

My son is always barely covered like that! I do tell him sometimes he needs to be aware, pull them up. Such a strange, painful, sad illness.


#35

That was my son’s first diagnosis also.


#36

This illness IS so awfully sad!! I can’t stand how alone my son is, he’s still such a sweet, thoughtful, nice guy and I just cannot bear knowing he’ll never marry, much less have a girlfriend or even a friend, or children of his own, a car, own a house or rent an apartment (will live with family the rest of his life!) have a cell phone! He listens to music and is almost savante like in his knowledge there, but that is his only interest, well, besides smoking and drinking soda or beer. I’ve been crying my eyes out almost every day since about a year after his diagnosis. When I realized what his life had become, I just became overwhelmed with a deep sadness. Yes, in waves. So hard. This forum has helped me.


#37

Yes. It’s true. I realize now that my son – I think many of us are realizing this – will be a while, if ever, getting back out there, and you really can’t push them too aggressively. At first I thought oh good he’s on this medication now so it’s going to be okay. But about a year in, he was still just kind of wandering around the house, and I started researching like crazy, and it just came on me one day, he’s not getting better. He’s not doing anything wrong really, he’s just not doing anything! I became aware of cognitive deficits … that’s when the grieving started! So it can’t be rushed. I’m okay with that. But I’m sad and always will be. I’m all over the place here. But anyway, I agree, they want to do it their way, whatever they’re comfortable with, especially with paranoia. My son is pretty much Boo Radley now. I wonder if this is the way he’ll be for the rest of his life!


#38

Sandy hi. I’m from UK.
My son currently lives at home with me. He’s 24.
Dont give up hope.
I have been through 7 yrs of hell. Lost family and home as a result of this illness and nearly lost my son. Now I live in a new place just with him. But it’s ok.
Now he is on depot medication (his choice as he realised he always went off oral meds- either forgot, lost them in his chaos, or voices told him not to take them) and he is stable. He lives a different life to the one we all imagined but he is (day at a time! ) reasonably content.
He studies online, plays tennis, is great company, has a few friends he sees now and then.
There are still bad times and I still hurt. But we are getting there.
It is so painful that your son doesn’t want to see you. Hold on - its the illness, not him, and as he stabilises I believe this will change. Someone I know went through this her son wouldnt see her for a time, and now she and her son are close again.


#39

Hi thank you for your encouraging words, at long last i had a phone call from him last night asking if i could visit today i cried with happynes i cant wait to see him he even said he loved me ive not heard that for weeks, i reassured him that i had been phoning every day. Also still very concerned for him as when i spoke to drs y/day they said hed been stock pilling his lorazapan hed got a weeks worth then they went on to say they are thinking of sending him to an acute ward that they didnt feel the need for him to stay on the picu unit. The thing is he was trying to overdose and hanghimself which is why he ended up on the picu unit amonth ago so im not sure of there logic hopefully i can have a more indepth conversation today. I just want him to be safe!
Im glad you have your son with you is that Hanadol hes on? My son was on that for a few weeks but dindnt help. Im so sorry to hear you lost so much but a mothers love out weighs anything else im glad you are both trying to cope together it must be hard for you. Do you have much community help? Where abouts are you in the uk?


#40

Thanks so much for saying that apple. My son has refused to speak to me since February and it’s agony.