I am so sorry you have to be drug through this. I’m sorry for your son. I can only imagine how horrid he’s feeling too. I hope he will listen to his doc. Hopefully you can head some glitches off at the pass.
Oh, yuck, this is one one roller coaster NOBODY wants to ride. My son was taking seroquel as a mood stabilizer when he was younger, but not as an AP. He won’t take it now, he feels it is not something that worked for him. He is doing really well on Geodon right now (knock on wood), together with a different mood stabilizer. He is on Geodon because he had received it PRN at the hospital for acute agitation, and kept asking to be put on it - he really seemed to know what would work for him.
Stay safe, I know you know what to do, but sometimes it is really hard to keep your head on straight in the midst of the turmoil.
His new case worker was just here. Didn’t go so well. He is still refusing take his Invega and insisting the Seroquel is a PRN when it was prescribed to take twice a day not as needed. He basically asked her to leave that he doesn’t want to talk to anyone right now as he is too tired. I don’t think he will get any sleep if he won’t take the Seroquel or Invega. I think he’s taking 150 mg of Clozapine but that just isn’t cutting it.
I think I’m going to have to insist that he go to some sort of shelter and the ones we are looking at oversee his meds and have structure that he just won’t follow here. He is being too defiant with me right now, to his own detriment.
Any way to get hospitalization for a while until you find a better living arrangement for him?
I wish. I was hoping they were going to admit him Saturday when we took him to emergency but he’s not bad enough for hospitalization. At least not yet. The Seroquel he took yesterday helped but now he is off it again so I don’t know how long it will take him to decompress. Usually marijuana is involved and he decompresses fairly quickly. This time no marijuana so I don’t know…
PACT has been trying to get a hold of the lady from Ready4Life that is supposed to be helping him find a place to live. I can’t call her because he wouldn’t allow me access to talk to her. Gotta love ODD 
Geez Barbie!
I think you are doing the right thing. How lucky there is a place he can go where they monitor him.
My son had his days and nights mixed up for years. He still is up very late some nights. I know that sometimes anthistamines can sometimes have a reverse affect and keep a person awake and jittery.
The more control your son has over his life-the better. It`s horrible, but seems to be the only way they can figure anything out for themselves in regard to their illness, what meds work, etc…
Saying some prayers…
Hi Lil~
Hard to believe ( but not surprised ) that seeing your daughter crying for 6 hours, and they would not take her in??!
Did you try going to the ER?
I love how open and serene you are about it happening. I wish my mother had some of your positive thinking and respect for your son when I was in this situation. I was ODD towards my husband sometimes when refusing to take my meds, and he is the only one who managed to respect my boundaries, even when they were very warped.
He had his bad times though, at some point he lost it and started being physically agressive towards me. I can’t explain the sorrow that brought to me, but I had experienced that before, with my mom. When he came to his senses and realised what he had been doing, instead of only feeling guilty about it he explained to me that refusing my meds and the ODD were the same amount of aggression towards him that he had instilled upon me. Not justifying him for what he’s done, but realising we had a biiig problem there, I started taking my meds religiously and the fights stopped in ttime and (I believe) forever.
I hope your self-restraint pays up and that your son will realize at some point how much you want him to be ok and how hard it’s been for you all these years. Sooner or later, he will, I’m sure.
I don’t know how serene I am Open yes. My son sees me as controlling and uncaring… Sometimes my anger gets the best of me. When it’s 4:30 AM and I don’t have my guards up and he starts talking delusional… Even than I sometimes tell him: Your brain is being flooded with dopamine right now and I can’t have this conversation. At least we don’t argue over schizophrenia.
Not to long ago I went over all the symptoms of ODD with him. He has all of them and at the time he recognized that he did. Sometimes I will say: Your ODD is acting up. He doesn’t like me putting a name to everything but I find it helps to identify the behavior as I don’t think he understands why he acts certain ways. It’s like he does things ‘on instinct’. On instinct is a term he understands so I use it to help him understand that I know he isn’t doing it on purpose that it just happens without him thinking about it. However that doesn’t make it acceptable or ok.
I think my son would probably prefer that I not show self-restraint. When I stay calm than he doesn’t have the same freedom to rage. When he eggs me into an argument than he is free to unleash his anger, it becomes justified. Most of my statements are: I love you but I can’t allow this and I deserve to be treated with respect…
Right now I’m somewhat unsure of how to proceed. His case worker was here yesterday and dropped off some information on some shelters. They have onsite support staff including mental health and structured meal times etc. They will oversee his medications. There was no beds available yesterday. He’s not to happy about it but I don’t know what else to do. As he is telling me that he is an adult and that his treatment is none of my business, he is not taking any responsibility for his treatment, except to try and get benzos prescribed. He needs to refill his Lithium which he is not doing. He has his monthly blood work coming up and without me telling him and going with him then he won’t be aware or even do it.
I think I need to step out of the picture a little bit. As long as he can continue to blame me for everything than he won’t be able to see that it’s schizophrenia and not me causing him so much stress. Like I told the nurse at the hospital on Saturday, if it got any easier at home I would be wiping his butt. Sadly this is too true.
Regarding self-restraint - I think my son also would prefer me to not restrain myself, for the same reason - he then feels he can justify his behavior.
Regarding living arrangements - It is HARD, HARD, HARD to sort this out. My son has been in a few group homes now - never shelters, as there are none in this area that will do med management. It feels HORRIBLE to think you can’t keep your own son at home - but sometimes it is necessary.
Regarding stepping out of the picture a bit - I just don’t know if that works as you describe - that he would come to see schizophrenia as the problem and not you. My son seems good at finding any other explanation for his problems other than schizophrenia.
I’m sorry you’re going through this; I think you’re handling it the right way, it is a choice and for the the wrong reasons by the sound of it, he needs to learn you’re not there to be his one and only, he can’t make you do everything just because it’s convenient for him, as James said, when he’s living on his own, he’ll have a wake up call! You’re not there to be used, you’re his mum, yes and always will b e but you’re not going to be at his beck and call and I’m glad you’re seeing that.
I’ve also been learning that and am getting there, I’m sorry it’s been hard, sounds like he does need a wake up call, with any luck I won’t be too painful for you both.
Good luck, go steady,
Meg.
Hey Barbie, I’m prescribed the Invega injection here in Canada.
I just starteda few months ago and notice that it could be somewhat less sedating than my last prescribed injection. Could that possibility contribute to your son’s energy level?
Also, when I go off meds, its usually because for a while I feel better. Maybe a few days. But throughout my illness (Sz with paranoia), I have found that I see it best to stick with what the doctor says, and take meds as prescribed. It really can add a possitive support to your mentality surrounding medication as taking them on time, and as prescribed is what is intended. I myself do not always know what’s best for me. Sadly now all mental illnesses preserve that ability.
It’s camping season BUT!!! I do notice for myself, that being away from home can also stress me out. Travel and small trips without medication aren’t good for me and my stress level.
Anyways, I hope I am not off topic and hope that info helps.
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Welcome to the forum @Sailor_Spinach
I’m not always sure of what motivates him regarding taking or not taking his medications. He is on relatively low doses so side affects have never been much of a concern. He doesn’t think he needs them for schizophrenia. He does know that he needs help with anxiety.
How are you finding the Invega shot?
Hi Barbie
Sorry to hear that your son got off Invenga…Its a rollercoaster ride and it’s frustrating when they decide to go off there meds! I used to get so irritated and angry when my son would get off his meds. Now I just accept that my son will go off his meds because he has done it over and over again and he does not acknowledge that he has sz but at the same time it is scary waiting for your son to go downhill and not knowing if he is going to relapse calmly . Prayers to you and your family!
I lived at home from age 24 to age 32.
I was completely and happily med compliant when I moved in at age 24, and when I moved out at age 32 I was again med compliant. In the midst was terible turmoils because the well meaning doctor took me off all meds when I was 25 years old.
Once I was off all meds at age 25, it was Hell to get me to take them again. Finally, I was in so much pain that I was willing to listen, and the only few folks left acually talking to me were the ones who believed in meds.
Fast forward, I am 64 years old and live a pretty good life.
You know, even with very sophisticated treatment for schizophrenia, I am still more ill than I like. You know, I have tried to be helpful in my world, and I have lived some of the caregiving roles. Such has been hard on me!
This discussion is good for me; thank you all!
Jayster .
I pray your son will take his meds my son quit and his life has never been the same
I pray for you.
What’s the situation now, Barb? How are you? Is he still off the meds? Have you done anything more about him moving out? I think that would be a good idea. I think only when he tries to be independent will he feel the need for the consistency that he can get with the meds?
He is still refusing to go back on the Invega. Since the hospital didn’t admit him his pdoc decided not to see him, just to have his new case worker try to talk him into it taking the Invega. He’s not going for it. Even she seems to be having a hard time understanding his reason not to. It makes him feel too alert and he doesn’t want to feel that way while living here. He’s not taking the Seroquel either. He is taking 100-150 mg of Clozapine and 600 mg of Lithium which seems to be keeping him from going too far into his head but not enough, I don’t think, to get him stable again.
He started laughing out loud for no reason on the 19th and is doing it right now 
He is downplaying it as a stress relief. He is laughing at stupid mental pictures. He says no voices but I’m not sure that I believe him. He is eating some but not a lot. He is sleeping some but not soundly like he normally does. He has been up since about 1 pm yesterday. This morning he said that he had taken his meds but still couldn’t sleep and when I checked he hadn’t taken them. This has happened several times. I don’t know if he is that confused… When I pointed out he hadn’t taken them he did take them however he’s been laughing off and on since that.
Yesterday his case worker commented that he seems to be doing good, more alert. I told her that I don’t think that is a good thing. He is so alert because he hasn’t been in a sound sleep and I’m worried it might be a bit of mania. Being up for 19 hours with the laughter is not a good thing. He’s been ‘watching TV’ all night however I know when my son is really watching TV because I have to turn the volume down. I haven’t had to do this for the past couple of nights. He hasn’t been on his computer in days which is another bad sign. I don’t think he’s brushed his teeth since the 12th. I have been reminding him for days to wash his bedding cause it smells. His case worker took him to get his blood work done yesterday and he called in his Lithium refill and she will take him to pick it up today or tomorrow.
The lady from Ready4Life is supposed to drop by this morning with two applications for some group homes. He wants his own place. He is not being realistic or looking at the bigger picture as where he can afford to have his own place is in a different city about 20-40 minutes from me and in a different district so not with PACT which he is fine with. He knows no one there. He doesn’t know how to pay bills etc. He has already shown some resistance to the group home overseeing his meds and didn’t seem to like the idea that he would have to do chores etc.
So yah 
this is where we are at… He seems quit content with how things are.
I actually took a switch blade and other pocket knives out of his room the other day and put them away. He had been sharpening them at night and since Saturday he had spoken about slitting his wrists and has complained that the Seroquel made him feel like crying I figure it’s better to be safe then sorry. He asked me about them yesterday and I told he has been suicidal so they are put away, not thrown out, he can have them back. He didn’t disagree that he wasn’t suicidal…
Hey Barbie,
It’s so heart breaking to see your post. I know it must be hard to be with him when he is not taking medication and not sleeping ,not eating, poor hygiene. Sending you positive thoughts and good luck.
Oh dear, that’s really tough for you. It’s kind of strange that he doesn’t see any link between stopping the meds and the kinds of behaviors and feelings you describe. But then, according to what you describe, his logical linking is not that strong right now - the thing about housing, etc shows that. I can’t offer any advice, just sympathy. Perhaps the only thing to do right now is to do something for yourself. I guess events will give him some kind of insight eventually.