Needed to talk and I chose you all


I think you are right Hope. My son’s Scz is worse around both myself and husband. I never had him apply for SSD or SSI because I was worried if he got any money he’d use it to buy drugs. I started the application for him on line today. If I can find a place for him to live and I think it is a safe house, he will have to go there. He never slept last night and neither did we. His mania is still going strong as I type. His father has been hiding in the basement all day putting a cabinet together. I believe we are our son’s worse enemy, even though we thing we are trying to help him. He has been awake since 5am Friday morning. 41 straight hours. I hope he sleeps tonight so we can. I’m so sad.


Thanks Bob for the kind words. I just don’t feel like I’m very resilient anymore.


We have been there, I am so sorry. Really hoping he gets some sleep soon so you and your husband can get a break.

It is terribly sad and difficult.


@Robin I would also keep an eye on his meds. Learn what they are, what each is supposed to do, and try to make sure he is taking them. At least you will know if what you are seeing is with our without medication. And stay in touch with the doctor as best you can. Many of us have seen this. Hopefully, this won’t last long, especially if meds kick in. If there is any pushback on meds, remind him that the meds will help to soften or lessen the “voices”.


Clozapine miracle drug. You have to fight for it but the only med that helped my drug addictrd grandson. He has been clean for 4 years working 2 jobs making friends. There are side effects but he has his life back. Wish you the best. This is a tough disease


I picked my son up from the hospital Friday at 10:30am. He started hallucinating within the hour. He never slept Friday night or all day Saturday. He pretty much just walked talking to himself or we drove him around so he would give his legs and feet a rest. He finally fell asleep around 2am Saturday and slept till 9am. We don’t talk to him as even if you ask him if he wants a drink angers him. There are so many voices going on in his head that ours just adds to his stress. All day yesterday he just walked and we’d either go find him and give him water/gatorade or he’d show up at home every few hours and drink water. He walked all last night. I went and found him this morning at 4am, gave him a drink and talked him into getting into the car. I drove him around for and hour and then brought him home. He was home about 25 minutes and then set off walking again. He is very schizophrenic. He has an appointment with his primary care at 9:15 this morning. I hope I can find him and talk him into going. His phone is dead as he won’t put it on the charger. So in the last 69 hours he has slept 7 hours. He hasn’t eaten much but we are keeping him hydrated. He has been experiencing UNPLEASANT voices in his head since Friday evening. Since Saturday he has 0 control over them. Many times during the day he will have something happen very shocking and scary to him that the look he gets a look on his face and it’s as if he is being electrically shocked. My heart is breaking for him. When he gets better, he asks me how I can let him get like that?! He told me if he gets like that to call the police but he is to far gone and will claim nothing is wrong with him and resist going back to the hospital, so the police will not MHA him. One thing he does do is faithfully take his medicine. It’s just when he gets out of the hospital he quickly starts hallucinating again. I just think there is to much stimuli’s for his brain to handle.


Robin, sorry if I missed this. What state are you in?

Your strength and determination is inspiring and you are NOT feeling sorry for yourself. This is real and you are showing amazing resilience.


Get a prescription for Clozapine. It is a life changing miracle drug for people with this cruel mental illness. My son suffered needlessly for six years before I found a psychiatrist willing to prescribe it. It literally is a miracle. Geodon, Risperidol, and other medicines did nothing for him. He spent all day, 14 hrs a day screaming at the voices. Then, clozapine stopped it. The ignorance or lack of caring from most psysicians of schizophrenia is the most frustrating facet to a caregiver or Mom.


When my son was in the hospital on his first (ever) medication he paced and paced all day. Up and down two hallways. Perhaps your son is walking because of the medication? I think you said they dialed up the dosage? I hope you were able to get him to his doctor appt. this morning. When my son was in the 1/2 way house he continue to walk but outside. Eventually he stopped all the walking. Now he will walk to his doctor appointments but nothing like the pacing early on. Hope it gets better for him. That keeping everyone up all night is rough. I’ve been there.


I have been told or read somewhere that there are ways for you to keep his SSI money if it is awarded to him. You could make it a condition of his living at home, for example. It is still his money (you would need to keep it in a separate account), but you can control when and how it is used, perhaps requiring he do certain things, or you could give it to him in smaller amounts over time. I would seek some advice on this…maybe there is information elsewhere on this forum. If you have a guardianship/conservatorship, then you would, of course, be able to control the money on his behalf. But guardianships are harder to get.


We live in upstate NY.


Hugs to you!! You are going through a lot and it never ends, does it?!? Just take care of yourself as much as possible when he is hospitalized and every day. I find that is the only break I get! We all are there rooting for you !


Abilify significantly increased my son’s manic behavior. We actually did 2 trials of it (2 different providers), and both times he became very agitated. It was just NOT the right medication for my son. I think others have reported the same response.

This is not the way your son should be responding to a medication. I wouldn’t wait to report it to his doctor.


If you make the case that he needs it, you can be assigned as the Rep Payee for his benefits. The money must come to an account to which he has no access. Rep Payees must make a yearly report on how the money is spent, and report on money that is in the account. You do not need to be a guardian to be a Rep Payee. The government wants to make sure the money they pay out is being used responsibly, and I think prefers there be a responsible Rep Payee.

I take a specified amount each month for my son’s rent/utilities and transfer additional amount in small amounts to a shared account - small amounts almost daily. I insisted that it be a shared account so I could keep tabs on it. I can’t see specific purchases (i.e, I see a payment to Amazon, but not the specific item), but do have a general idea of where the money is being spent.

My son also gets food stamp funds, and I use that to supplement my own money when buying groceries for him.


Thank you so much for this useful information!


I took my son to his Primary MD today. He couldn’t even have a conversation with him. He said my son’s BP was sky high. He took me aside privately and told me that my son needs to be Institutionalized for a while. (No kidding Doc) He could see all the hospital records that my son has been hospitalized 5 different times since May 28th. The maximum stay was 2 weeks. He told me to call NYS office of Mental Health and tell them what’s been happening, I did. They called me back and are trying to help. They spoke to his Psych Doc and to the hospital Psych MD that has released him the last 4 times. I’m hoping the next time he is hospitalized they send him to Rochester Psychiatric Center (RPC) so he can truly have time to rest his brain. His brain needs a chance to try and rewire itself. I’ve visited RPC before and it is really very nice. They have a atrium that patients can go out and sit in, they also have a coffee shop they can go to, they show movies on Friday nights, and they have a gym that is monitored while it’s open. I do understand about mental illness. My oldest son who is 18 years older than my youngest also has schizophrenia, but he takes his meds everyday and has a good life. Wife, two kids and a good job. I’m ranting again. Lack of sleep these past 4 days. I hear you Vallpen about the Abilify, but his mania was just as bad even before they started it. I thank all of you who are corresponding with me. It helps me a lot. My wish for all of us is that some wonderful research scientist/doctor fines a cure for Schizophrenia. Take care confidants. Robin


I am sooooo glad his doctor stepped up to the plate and is helping. I pray he gets into Rochester. I hope they take him in sooner than later so you can sleep.


I hope it works - I found out in my area there is just NO WAY to get someone into a state facility unless it is thru the legal system. Just way too few beds to meet the needs. Community Mental Health is supposed to pick up the slack, but, fact is, it is not enough, or not the right combination of services, for some of our loved ones.


They were going to put my son in the State Hospital here in CO. But then again I had a emergency mental health hold on him - perhaps that is why. @Robin - If he doesn’t get in to Rochester with the help of NYS office of MH perhaps you could get that hold for him. I had to document all that had gone on. It was done through the County Attorney for free. It took 24 hours and they physically came and got him. From reading here and experience, it seems like you just have to keep pushing until one door finally opens.

I have a feeling something is going to work out for your son.


perhaps it was the marijuana that started my son down this path 7 years ago, but he is living and working on his own at the age of 22. He smokes pot and it helps him stay calm in addition to his Clozaril. Who am I to say don’t
take what helps you? I wish we could afford to send him to private dual diagnosis care like at CooperRiis , where he could clean his system of nicotine, cannabis, and maybe even Clozaril just to see who he really is…
But for now he is managing. I don’t think all the fact are in on cannabis. I don’t use it and never had any interest, but it does help some people.