Know how it is - take care.
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My husband has the brain implant, mind control, works for government agencies, and he gets briefings all night. When I ask or argue it strengthens his delusions. Nothing I can say will lesson them. I think thatâs just how delusions go.
My husband is out of the house and not in treatment.
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My son, Iâm sorry for your heartache. My son is almost 22 and has been hospitalized about 8 times now always going in refusing meds and decompesating until they force them. I am his legal guardian and push for a shot so he doesnât just set there and get worse but they still try to get them to take meds at the state hospital. The last time he agreed to go in and get his meds right and accepted Invega to get out of there. He was quiet soon after and it appeared to work and he was discharged. He didnât lay around and sleep like Haldol does to him. He did seem some better and his PDoc said it was a fine medicine. It is a once a month injection with few side effects that I can tell. No Zombie effect that I can tell. My son is communicating although agitated and we now have to keep him busy. Itâs like he woke up and now realizes he still lives at home and wants independence. He is obsessed with writing lists and seems fixated on certain subjects that I wish he werenât. Iâve seen it with other meds also but weâve tried unmedicated last year and it was worse. The problem with our son is that he talks about drugs 24/7. He wanted to be a chemist and is fixated to the point it is dangerous for him to be around some people. He is very naive and vulnerable or he would be out of the house.
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My son, I think you should keep a dated record of things that alarm you and could cause harm to himself or others. Keep a binder for all medical records and ask for a summary if possible when meds change. Get hospital records and patient numbers. SSI will check each of these but it is good to have and continue to file the newest on top. One never knows when you might have to defend SSI and it is good to get organized. It is a painful process because you have to relive everything but you should at least start the process. Good luck and God bless.
The only cost for guardianship was court costs which was under $100. This allows you to talk to the doctors on his behalf and help him when he canât help himself. I bet I read those forms over and over for six months before he actually punched a 5 ft window. Previously, he slammed doors so hard, all doors including car doors. He busted his old wooden bedroom door, put holes in the drywall and it wasnât getting better. Bizarre behavior followed. We put up with so much as Iâm sure all parents do but when our thoughts go to the streets⌠He wouldnât survive there. If he is hospitalized again, that is a good time as the case worker will visit them. Our son was unmedicated and actually told the attorney he would spend his money on drugs if he could. There is a jury and you just tell them why you are seeking guardianship. They and the judge were sympathetic and she recommended one person be guardian with the other secondary so it would be simpler to get signatures together when needed. That was last year and he just now realizes that we have that. He doesnât like it but he would have to convince the judge he doesnât need it any longer to get it lifted.
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Update:
Hello Everyone, It has been a while since I updated everyone.
My son is stable and doing well. His last hospital stay was in April. He stayed for 3 weeks. Has been on medication up to July, then he stopped because he said he was cured. He became paranoid, delusional etc. I couldnât stand my son going back to another hospital, so as a mother. I did want I had to do to keep him out of the hospital for the 4 time. About a month ago, My husband and I talked to him about taking his medication on his own, so now heâs taking it on his own. This is a roller coaster ride with this Illness, but for the past months we have had peace. Some days he become irritated, but we can handle that as long as heâs not delusional. He still have lack of motivation. He talk about doing things but doesnât follow through, so we donât force him. He was approved for SSI. It took 6 months. He hasnât received his payment he was just approved. He was approved on the first try. He also receives Medicaid. I am happy about the Medicaid because our private insurance didnât cover a lot of his hospital bills nor do our insurance offer a caseworker. He was on Blue Cross Blue S. and they wouldnât cover 100% of his bills, so we had to pay them and his co-pays. So that take a lot of stress off of us. I am his Representative Payee, but he want me to give him $75 a week when they start his payments. I donât think he should have that much money in his pocket because he will go and buy weed and self medicate. He hasnât received it yet, but I am regretting it because I feel it will be a problem. I will make sure he has everything he needs. I will continue to take him to the store and buy him things but it will be from his money. He smokes plenty of cigarettes, so I will make sure he has plenty of them. He has gain about 60 lbs since heâs been taking his medication, so weâve been buying him clothes. I will take him to buy some more. I will give him a little money to put in his pocket, but I think $75 a week is to much. What do yâall think? I just donât want any problems from him because it is his money and I have set up a separate account from my account that his money will go to. Iâve read stories on the forum about how the parents or caregivers have issues with their loved one because they want more money. I will keep you all updated. Thanks for all of the advices. I feel like some doors will open up for him now that heâs been approved. I really want him to have a caseworker. What do yâall think?
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Hi there,
My son has invega (paliperidone in uk) he has 150mg every month.
I find it quite erratic at times, sometimes he will be tired and sleep for as long as your son did, other times he will be restless and find it difficult to sleep.
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@myson Hi! Good news about your son being stable and agreeing to take his meds and also about him getting SSI and medicaid, I remember the relief I felt when my son got those benefits. I am happy for both of you!
About the money issue: My son wanted his money too, just as your son doesâŚbut with both of our sons being dual diagnosis that is just not possible. $75 is way too much too soon, (just my opinion) Cash is out of the question (also just my opinion) They will self medicate. That is a given. With my son, I basically put any money I gave him on a Paypal card. I signed up for an account myself, they are attached to your checking account, but they are separate-The card will even have his name on it if you set it up that way. You send whatever money you want to the account from your checking account each month or each week whatever works (it is free to do that) and it gets there about 2-3 days later. What I like best about Paypal is their customer service and security. If an outrageous purchase is made by your son and you dispute it with Paypal they basically restore the funds right away and then dispute the charge on their ownâŚso there is no long waiting for it to be resolved. Several times (in the beginning I had to do that and it worked like a charm. Also you can monitor any and all transactions on line as they appear almost immediately when they are made. My son still wonders how I know where all his money went when he has said nothing to me . This whole rep payee thing is new and looking back there are âgrowing painsâ and mistakes will be madeâŚ(it works like almost all aspects of sz work) you just have continuously re-evaluate the situation until you reach a comfortable plateau. Since my son lives with me he really doesnât have any REAL expenses-I pay all of the bills for the household and do the shopping and his cigarettes, and clothes and other needs come out of his money but I handle that. That works best for us. Simple and uncomplicated is always better for my sons wellness even though he will never agree that that is the case-I have eyes. As mush as he wants all his money he does not see what I see when I give him too much too soon. It invokes anxiety and makes too many waves in his life that causes him to unravel and make bad decisions. So he gets between $20-40 a month on his card, (depending on the month and what he decides he wants to do that month (besides watch TV, walk, eat, smoke and sleep and accompany me), Some months he does nothing more than take himself out for Taco Bell or make a trip to the thrift store. Other months there is a birthday or an occasion he wants to get a gift or maybe go to Starbucks with a friend (but I have a separate pre-loaded Starbucks card for that (I try to make all the money in his life a pre loaded card)) Christmas is tricky but I usually put about $50 on is card for that (he only has 3 or 4 people he buys for and sometimes his gift choices can be dubious but I stay out of that) and maybe $10 cash (all ones) because he donates to the Salvation Army pots through out the season and has since he was about 10 years old and likes to get a vending machine pop when he shoppingâŚYes it is limited and yes it is micro managed and yes he hated it for the longest time but eventually the arguments faded away because he always he always had what he needed. NOT always what he wanted, but what he needed to carry on like any of us but guided and structured. To my knowledge there are no drug dealers that take Paypal. I canât say what will work the best for you and your son, it sounds like you are thinking it through and willing to do whatever it takes to make it work. This system works for us but it evolved through trial and error just as yours likely will. Thank you for the positive update, I wish you guys all of the best. 
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@myson, concerning money - I insisted my son allow me to have a joint account with him. I transfer a small amount of money to that account on a daily basis - $5 - $10 depending on his med compliance and behavior. He has money available to him via the debit card. I can watch over it for purchases. Fortunately, my son doesnât have a drug habit.
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@Vallpen I am lucky to have a med compliant son but if he was not compliant then then there would be no money until he wasâŚI am glad you brought that upâŚthatâs important.
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Thanks @Catherine and @Vallpen for your wonderful advices. I just love this website and the advices that yâall have given to me this past year. It has helped me a lot and I am grateful for yâall. I am still new to this but things has gotten a whole lot better for him and the family. I agree with the both of you but @Catherine you are on point and I agree that $75 is toooo much because my son is constantly coming off of his medication. I have set up a prepaid account through Netspend. Itâs in my name but he is on the account. I had to upload and send the award letter, his drivers license and my license. Itâs set up, so when they deposit the money in the account I have set up at my bank. I withdraw add $25 a week to the Netspend card. My son smoked weed alot before he was diagnosed and Iâm afraid he will start back because he talks about it. I will most definitely keep a track on what he will spend. I will keep you all updated and I will continue to pray from everyone and please pray for me. I may not reply a lot any more, but just know yâall are always on my mind. Hugs and kisses to you!
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@Catherine I wished my son would stay on his medication. Itâs so draining. My son knows heâs ill. He will take it for a couple of months or more then stop. Itâs because of me that he hasnât been back to a hospital. Heâs on his medication now and is taking it on his own. I just pray he would stay on it. Now that he has Medicaid, I was hoping I could find him a good Caseworker to help me help him stay medication compliance. Any advices on that? Thanks ~Hugs~
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I would just say that if there is something he really needs or wants, like if he smokes or whatever he just canât do without (other than drugs) just say âokay well you need this (whatever it is) and, I need to see the medicine taken first, I understand that you donât like taking it but mental health is not optional.â I mean that might not work at all but if my son stopped taking his meds, I would tell him âgood luck getting a pack of cigarettes with no moneyâ (and it might not work for me either but thatâs what I would do) Heâd try to wait me out but I can wait longer than he can go without a cigarette. Maybe a case manager will help, theyâre all different, it will be great if the case manager and your son hit it off personality wiseâŚitâs worth a try. Would your son do better on the monthly shots? (maybe?) Just throwing out thoughtsâŚgood hearing from you, best wishes.
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Case manager might be good. Many behavioral health centers with case managers also have rep payee services so the family doesnât have to do it.
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Iâd be worried about an outside rep payee service only because they would be impersonal and would be oblivious to a dual diagnosisâ patientâs innate ability to manipulate the system to get cash for drugs or anything else not in their best interest.
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This is excellent advice but was there a magical age when it was easier to get through?
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Thank you @Catherine and @Hereandhere⌠Hopefully, I wonât have to get an outside rep payee. I just pray that he will do right and continue to stay on his medication. We have a good relationship when heâs stable and I would like for it to stay that way. Iâm most definitely not giving him $75 a week though. I will keep you guys updated. ~Hugs~
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After age 26 combined with at least a year or more on the right medications making him lucid and coherent and no voices. Things started getting a lot easier. I noticed the most dramatic improvement when I went on disability myself for chronic health issues and I was home 24/7 and handling everything there and I was always company for him, it seemed to give him more peace and ease that I was always there, directing and redirecting all day longâŚeven if he sometimes griped about it, I saw the differences in him, he was much calmer. Now it has been 6 more years and he is 32 and I am able to leave him to his own at the house for several hours any day of the weekâŚand know things will be okay when I get back, I am blessed. It is a long road but I am glad I didnât give up on him when he was 21, like so many people wanted me to do.
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Thank you. Iâve heard that after 25, the impulsiveness subsides. We had one psychiatrist tell us if we can keep him alive till heâs 25, that would be doing good. We are so grateful that he isnât suicidal. Thank you for the support and hope. God bless you guys.
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I got the same advice from one of my sonâs doctors, the one that ultimately prescribed the Clozapine. Oddly enough it gave me hope. Thanks to you too! 
