Family and Caregiver Schizophrenia Discussion Forum

Why doesn’t someone ask me - When will my sons consultant ask me what I think instead of taking his word for it that he is ok

I understand what you are saying - I see these behaviors with my son also. The medication has alleviated hallucinations, delusions, and to a large degree - depression and anxiety. I don’t know if they can “medicate” what might be called negative symptoms - the lack of hygiene, of self- awareness, and social skills - the almost constant need to feed some part of the brain or body with food, music, or distraction of some sort. I work very hard to identify judgment within myself and try to focus on the fact that he is not catatonic or delusional - those are very big positives in his treatment. He invites me now and then to his counseling appointments but those never go well if I provide a laundry list of what he doing “wrong”, so in order to get invited I am honest but honest about what is going well. He will rate himself an 8/10 to the counselor - I internally try to be happy that he feels this good and am always scanning myself for judgment. If he is happy but some issues “rub me the wrong way” like some of his lifestyle choices I reflect on my judgments and try to reframe them. These kids have undergone a lot of trauma. Behavior change, especially for traumatized individuals, can be slow. The change can only take place when the individual feels so safe and supported that they, in relationship with trusted individuals, decide to make those changes. Our kids might behave better in the hospital with the “no nonsense” nurse but they are not invested in the change - only changing due to fear / not wanting to cause trouble. The change isn’t their idea and they aren’t committed to it. If they are not psychotic or delusional, happy and doing ok - the overeating and some of the other issues are, to some extent, judgments issues and negative symptoms that are difficult to treat. I’ve also gotten better at not giving a care what others think. If he is happy, our relationship is growing, then I know we can keep going forward. Also - you can tell the practitioner - “I know you can not share information WITH me but I would like to TELL YOU some behaviors I observe that concern me” I think they will listen.

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Wow Sando, I so feel you on this one. This 8-24 hour wait for beds is bullshit too. Like you said, you go in with a certain level of sanity and by then both you and your loved one are much less capable than you were. I’m not sure where you live. I live in the US. I’d love to, perhaps, work together for increased rights for those with SZ. I don’t know how to start sometimes but maybe with 2 or more of use we could organize. ?

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But today is a good day.:raised_hands::raised_hands::raised_hands::raised_hands::raised_hands::raised_hands::raised_hands:

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When I read your words, they could be mine. Almost exact. Every minute of every day I prepare to be flexible and adapt to each new emotion, experience and situation. It has helped to let go of my expectation or judgement and respond with love. I forget what my son has been through or going through now sometimes, and focus on what he should be doing. That does not work, thank you for reminding me of his suffering.
The Brain and Behavior Research Foundation has been my source of information and support, I read " a good doctor, the correct meds and a supportive, loving family" were the foundations needed. It takes time, perseverance, strength, advocation, tears, patience, love and empathy to achieve, but it is possible. 7 years in and the last 3 have been growth and healing for my beautiful son, slow, small but moving toward better. The sacrifice and dedication of being a special needs parent is huge and can be overwhelming. I pray, meditate, eat well, exercise, walk, run, yoga… I need to be the example of wellness for my son. Not perfect, I hide cookies, donuts maybe wine, but the stronger I am, the safer he feels. I’ve cut off from all family and friends, church, coworkers, as they are negative, judgemental and toxic. Online has been my source of connection. It’s exhausting, but being able to read these posts, hear from others, know I’m not alone, keeps me going. I wish there was more we could do for each other.

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I felt very close to you after reading this. Almost to tears. I’m glad that your son has been making slow but steady growth. I do many of the same things - trying to set a good example for him but also trying to stay mentally and physically healthy so that I can continue to do what I do and take care of him. I also run, meditate and do yoga. I also understand how isolating this can be. When someone, especially my own mother, makes a remark that sounds like she is blaming me it cuts me to the core. I’m getting quicker at just remembering I’m here to extend love to her, not to necessarily get all the comforts I need from her. I’m getting better at letting it roll off my back and just do what we need to deal with everything. This site does help so much to feel like you’re not alone in this. Schizophrenia.com has started their newsletter again and there is an event May 21-23 called Hacking Schizophrenia that I’m going to try to attend - it’s virtual. Group called Brainmeet I think is doing it. Best to you and your son!

Thanks L: we’re in Dallas. My cell is two 14, five 64, four 748. There’s got to be a better way to treat these kids and we caregivers as we stumble into this unintended journey. Love wins!!

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I felt I had to reply to you . You identified so many similar symptoms that my son has. He called today asking for money despite getting £800 / $1,100 on Monday this week and it’s Friday. He has no idea what he has spent money on. So we bail him out again. It’s so bad that you have to rely on them doing something criminal, get police involved before you get help. But it’s happened here so many times. Police are generally good. One gave me his own cell phone number if I needed help and he would make sure my son got an appointment with a good police dr on call that night.

The spitting, I still don’t understand that and why he says it’s because he is smoking and has a bad taste in his mouth. Denies voices but often laughs to himself when he is alone.
The medication is a three monthly depo and one of the more vile antipsychotic drugs. It will never end , I know that.
He is due to get inheritance from my mother but can’t be trusted with money. His brother is using his to part buy a house, but this lad could just as well blow the lot at macdonalds or on the lottery .
Sorry to burden you with yet another reply, but thank you for listening.

It’s odd that you mention the spitting. My son, at his best - which would be on meds and zero positive symptoms - spits while smoking. He said the same thing that your son did. There would be a small puddle of spit in the garage where he smokes. I wonder if they feel less of a need to conform so spit or if there is something in their chemical makeup that makes the substance taste worse. It’s interesting. My son also, on a certain level, understands money and can do the math, but if he craves something he gets it - he is very singularly focused if he wants something. I think there is something to the brain chemistry that those that treat our kids don’t quite see or get yet. I’m glad the police are good - ours are too. I wonder if you could put the inheritance in a trust for him? I’d like to set something up like that for my son. If he is ever “on his own” - I don’t see my other children taking care of him - he will need someone to come in an clean and help him with managing tasks, paying bills. I always wondered if I had the money if I could set something like that up. It is no burden - we are here to share the load and lighten the burden and maybe even solve an issue now and then! Best to you and your family.

UGH… my heart breaks. My son is officially homeless and still insists it is not his fault that other people are always doing “this to him” he refuses meds and adamant will never take them as there is nothing wrong with him. He blames me for everything cuz he knew I called for a wellfare check on the woman he was renting from because she called me frantic and scared and when I did not hear back the next day as she said she would, I was not sure if she was ok and had to make that call. I am also a court mandated reporter. He apparently is working at a sandwich shop, I know will not last as they never do. He called his sister out of state and coerced her into paying 1 night at a motel, which was good so he could take a shower and rest in a bed at least for 1 night. He also insists there is a gps planted in his ear and everyone is watching him. I just went and picked up all his belongings at the room he was renting so the woman did not have to deal with that. We never found the firearm that he stole from her (he insists he did not), which is scary with his demeanor. It has been reported. I brought home all his stuff and still washing already 5 loads of laundry, most of it was stinky smokey mildewed from him wadding up his wet towels, clothing together and never washing them and found receipts for alcohol but insists he has no money. Alcohol has been a downfall for him and I know he does it to try and calm his inner thoughts and try to sleep but never ends well. I will donate most of his things to hospice and keep some for when he needs a change. he does not know I picked up his stuff from the woman’s house and will be angry, also insists he will be taking the woman to court for evicting him. He never follows thru on anything and would not have a case anyway. My son also laughs at everything for no apparent reason, when you ask him why, his reply is I dont have to explain myself to you and you would not understand anyway. He is very nasty, manipulative and vindictive as he feels wronged by everyone. I know he will text me when he needs something and then he is nice until he gets what he wants and then he is nasty again. Sadly it is getting easier to not be involved with his demeanor and he has no one else for support, but in his distorted mind he does not see that at all. I am grateful the weather is nice and he is not out in the cold somewhere. I understand your pain. :frowning:

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Hi
Thank you for your post. I am having trouble finding the Hacking Schizophrenia presentation you mentioned. And cannot find Brainmeet either. I would like to attend that event if you are able to provide me any more information.
Thank you!

HI! I hope this helps. I’m not the best technologically. The newsletter is schizophrenia.com.
Sign up @

Linda Titus

I agree. There has to be a better way. I live nearby in Denton, TX. My almost 25 year old son (dx SZA in 2016) wants to be on his own and have a life - I second the motion. He can’t hold a job. Worked 7 weeks last fall at Chewy warehouse - most he’s worked in 3 years. Has lost DL (revoked) and has not gotten another ID - gave instructions and all necessary docs - he just hasn’t done it. Waiting to hear from disability. Hoping to be approved in May. Then will have to make sure he doesn’t gross more than $1260 a month. It’s like trying to keep twirling plates in the air. Currently, he’s decided he has no problem - no SZA. Just walks around hearing voices, smoking, etc. Claims he’s communicating with other psychotic people. He’s medicated, but…Son is currently “clean” but has had recent major problems with drugs - which is probably why meds are not working. I’m all in for finding a better way.

We’ve just filed for SSI DAC. Son is currently working at a Humane Shelter (volunteer) for 6 hours x 3 days a week. Day one went well. We’ll see…

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Hello, I really like your attitude. I am new to the group I hope things are still going well for the both of you.