Family and Caregiver Schizophrenia Discussion Forum

I need advise please

My son is 30 years old and is living with me. He stopped taking all his medications and was ill again. I called the crisis center of Tampa, Florida. They came, evaluated him and took him to the crisis center. Where he was for 2 days. He was than back on Celexa, Clonazapam, Gabapentin and this is the hard part for me, he was given Seroquel for his psychosis and paranoia. He came back out just as he went in. He ran into the car and asked me to hurry home, he was scared, he said something bad was going on outside and they/the gangstalkers he calls them were after everyone. Anyway we get home and he runs inside. I waited a few days for Seroquel to kick in but no changes not even his mood was stabilized. I called his doctor on speaker phone with my son, because I am on not on the hippa form and explain to his doctor that he was in the hospital and was prescribed Seroquel. I know Seroquel is prescribed for bipolar, but didn’t think for zc. My son’s doctor up the dosage, which made me so frustrated because I didn’t think Seroquel was going to work. But the doctor said my son is depressed and Seroquel combined with Wellbutrin will help him. WRONG!!! My son had the shakes and was very irritable. I am the only one with him so of course it was a battle with him. He stopped the medications yet AGAIN. I feel that this doctor he is seeing is failing my son, by not putting him on the right medications. Then he won’t see my son for another 3 months. My son looked like a homeless person, he doesn’t bathe unless I fight with him and honestly is becoming so exhausting fighting with him to take a shower and clean his room . His room looks like a trash bin, I am trying not to flip and be a caring mother instead, he is not eating much. I went out and bought him ensure and he drinks that. I can’t help but cry from frustration. I give up on the crisis center 2 days is not enough time to see if the medications are working, I am giving up on his doctor for not seeing my son more often and see how my son is doing. I told my son we are changing his doctor he says " NO WAY"! I am all alone, I have no one to help me, it seems everyone rather not hear anything and it’s so hurtful. I have 2 sisters and 1 brother that are good at helping but they all live in New York. I came to Florida to be around my other two boys and my small grandkids and now I am alone. His father doesn’t bother with his own son and won’t educate himself about my son’s illness. I feel empty, angry at the same time that my son rather give up. But than I hate myself for being angry at my son when he really believes all this things he is hearing and fearing are all real to me.
I feel he needs to go to a hospital, but long term. How do I find a long term hospital for him when all he has for medical is Medicaid? Should I go to the doctor with my son, is that even allowed? I can’t go to court because my son is not violent and he hasn’t hurt anyone or himself.
How has everyone do it, when your loved one don’t recognize their illness? Or when a loved one is out of control? My son won’t leave the house out all. How do you all make your loved one be med compliance?
Any advise will help me.
Thank you.

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I’m sorry you’re going through this with your son. My son is 36 and doing well living with me and he was diagnosed at age 21. I got my son compliant in part by getting full guardianship of him. For awhile I controlled every aspect of his life. It was NOT easy, but 100% worth it.

The guardianship allowed me to bypass HIPPA and be hands on in everything, appointments, talking directly with doctors and really putting my 2 cents in every time. Somehow my son argued with me less because he knew I had the control. I kept notes on my son daily and what behaviors I saw with each medication and I brought the notes with me to every appointment. My son saw his doctor at least once or twice a week in the beginning of his treatment. Now he sees her once every three months because he is stable. (I live in Ohio)

As for the inability of your son to know he is ill, that is pretty common. It’s called Anosognosia. If you google it you will find books on that can shed more light on it. I can tell you that when my son started getting his sanity back he began to become much more compliant because he liked how he felt with the medicine and he was so happy when his voices and visions stopped.

The drug that helped my son was Clozapine. He tried at least a dozen others and none of them helped him like Clozapine did and some made his behavior even worse.

I don’t know anything about Florida’s mental health care. I think first I would contact a social worker, or if there is a Mental Health Ombudsman in your area they can be very helpful at problem solving. You might also try to contact NAMI if you haven’t already. https://nami.org/Home

I started getting counseling for myself regularly because I too was always alone and always stressed, the entire time, still am (alone but not as stressed). Even now that my son is much better and we get along well and he is very compliant, I still go to counseling once or twice a month, it grounds me, gives me more objective perspective and some meaningful conversation which I don’t get as often as I’d like. It’s very helpful.

You have to take care of you if you want to continue to try to help your son. I have been through all the no baths, looking homeless and garbage room and everything like that. You have to pick your battles day by day (sometimes hour by hour) and the fact that he cant see his doctor for 3 months is just wrong. Your first goal for your son is hopefully get him stable and effective treatment any way you can manage. It sounds like because of HIPPA your input is not being respected and it should be because you are the caretaker. Please let me know what happens and feel free to message me privately anytime if you need to. Take care, hope I helped a little.

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Catherine thank you so much, yes you definitely did help a lot. Knowing that I am not the only one that has felt these feelings. Reading your comment gives me hope that my son can be doing better. He just hasn’t been on the right medications.

I do everything for my son, take him to appointments, pick up his medications drive him places, he used to drive but will no longer drive. I am going to find out about guardianship, is something I been thinking about, I just heard is very hard. I also been thinking about going to counseling, because of how I been feeling. It would be good for me to have someone to talk too. My frustration comes from his doctor, he tells me we will have him feeling better, we will get him there. How? You prescribed a medication that doesn’t work and my son is seen 3 months that’s crazy. I told my son we are changing doctors , he tells me I don’t want to see any other doctor. Arrrrrr

Thank you again for letting me vent.

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Catherine I have a question for you? Is your son able to work? My son is not able to work, because of his disorganized thinking. I am just curious. Is your son able to have a social life, when my son was on Haldol he at least was able to be around his brothers, go with us to events, vacation but all that had changed. But he has no friends of his own. He doesn’t leave the house.

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No my son is not able to work and does not wish to socialize very much if at all. He usually goes everywhere with me and we go on long walks together in some of our beautiful parks all the time.

Working is too stressful because it interferes with the predictable routine he is accustom to. He does really well with a predictable routine. He use to socialize very limitedly when he attended AA and NA meetings for a few years. After about 6 years of sobriety he just announced one day “I don’t want to go to those meetings anymore” and he didn’t and he is still clean and sober (mostly I believe because he lives with me and I handle the money still), I mean he has a credit card but doesn’t use it without me knowing about it.

I hope your son is on SS disability at least because that helps tremendously with expenses and as his guardian if that should happen you can be named his rep payee and then you are in charge of all of his money, that gives you a lot of leverage when bargaining with him on things like showers and cleaning his room. The Medicaid insurance that comes with it is a godsend.
As for your son going out, I wouldn’t push him in anyway, not while he is still ill and not really stabilized yet.

My son stayed in his room for probably the whole first 2 years that he was trying like a dozen different meds and his moods were all over the place and he slept most of the time and smoked when woke up and I had to have meals waiting on him or who knows if he would’ve eaten. I tried to get him to make breakfast once during this time and found him putting mayonnaise on cereal, I chocked it up to confusion. I also once found a box of bugs in his bedroom and freaked out like you wouldn’t believe. Turned out while I was at work (I don’t work anymore I’m home full time on disability) but while I was at work he went out and collected bugs from outside around the apartment in the grass, ants, grasshoppers, beetles you name it and he said they were his new pets -yeah…no. Got them out quickly. He never changed his clothes back then and always smelled bad and sometimes when I’d check on him at night and couldn’t find him right away I’d look in his closet and find him curled up in a blanket in his clothes, boots, coat and hat sleeping. and it didn’t matter if it was summer or winter. I left him there. He eventually stopped and went to bed, but to this day he will only sleep in street clothes. Thank God he takes his shoes and coat off. lol

I learned early on in this journey with my son to suspend all of my beliefs of what society and my own upbringing tells me is normal. I hate the phrase new normal but in many ways you have a son (like mine) who will ultimately with the right meds be well enough to live a new normal and feel his own brand of happiness. If we judge our sons based on what we think provides us happiness we will never recognize when they are happy in their own ways. The illness precludes them from behaving in very passionate kind of ways for lack of a better term, they tend to have a monotone kind of reaction to most things. That’s not bad so long as they can think their own thoughts and carry on a reasonable conversation with loved ones and do basic self care. It takes a lot of endless patience and starts and stops working closely with your son or with my son as it was to get from A to B. Nothing is fast. You have to kind of let him dictate what he can and can’t do while he is still ill. Pushing him or my son, I dare say would be too much added stress and not helpful. You have to do what you think is right though, you know your son the best.

Once he is stable and hopefully not hearing voices or seeing visions or believing delusions however the illness manifests itself. Then the baby steps start, and it is literally like starting over with a child. You have to think super basic. medications, sleeping, eating, getting enough water, personal hygiene, fresh air, REPEAT. That’s it for a time -maybe a long time until these things are no longer an issue and they have become a workable pattern he can do on his own. You may have to make every meal and do all the chores yourself during this time I did. BUT after these simple things are rock solid. Then you can expand to okay now we are changing your sheets today or we are doing the dishes together today or we are cooking dinner together or whatever. The one thing I enforced as soon as I could was that he go on a walk with me after dinner either in the neighborhood or in a park. It was good for both of us to get exercise and do something that was not hard to do and together.

Your son may already be able to do more things than my son was able to do when he was ill, my son could barely feed himself and couldn’t communicate well at all.

Today he will insist he is very happy and feels fantastic. He is a homebody still with no friends, there are people who love him and would be his friends (from the AA meetings) but he won’t do his part and return calls or arrange visits. He talks to his brother who lives in California and he occasionally talks to his aunt who lives a few miles away (she is also mentally ill and a recluse) occasionally he gets a random call from his deadbeat dad who has no clue about who my son is. Other than that my son and I are best friends. We do most things together but when I need a break he is 100% okay with me taking off and having a day all to myself. He helps me tremendously around the house -manages his own medications and appointments and he keeps his room as neat as a pin these days, he’s particular about his clothes, shoes and his trusty ball cap and he showers and shaves every 3rd day. Like clockwork. It works for him. He has a few hobbies, collecting coins and music. He loves TV and movies. We can laugh and chat and joke together and we understand each other. He has slowly evolved to all of this while on the right medications (not before). From virtual nothingness to all of this we have today. May seem like so little in the scheme of society’s standards but from my personal perspective it’s a huge jackpot- we have won in my book and I don’t care what others think.

My future goals for him are to teach him more about paying the bills like I do and make it easy for him if anything should happen to me knock wood, we are already working in expanding his cooking and shopping skills and he’s catching on fast. He use to drive when he was 18 but hasn’t driven since. He wants to get his license back and he may do that but not sure if he will drive alone much because his attention span can be spotty some times and I would hate for a sudden lapse in attention to be the end of him. Still we like to take road trips and I said it would be great to share the driving. The attention thing might even improve. I never say never lol.

Now I’ve written you a book, hope you don’t mind, I like to share what I can especially if it can help anyone even just a little bit. Feel free to ask me anything anytime. As you can see, I am an open book and I love to write.

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Doesn’t surprise me that your son says he doesn’t want to see another doctor, change is harder than ever for our sons. However he also doesn’t understand the importance of having a responsive doctor. Perhaps as it often happens in life you “hear” one day that his doctor has moved to another town to set up practice…coincidentally just about the time you have already found a much better doctor to take over. (Not saying that would work necessarily, lol but I have done worse myself to get my son where he needed to be) ~~Otherwise having guardianship removes all doubt who chooses the doctor. Saner minds have to prevail. My son was angry at me a lot until he got stable, I developed thick skin and ignored most of it. It was so worth it.

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Hi , I also live in Florida , and yes the system here is awful . Firstly you definitely need to switch doctors as your son is not stable and needs to see someone at least once a month . There are ways to get around your son and take more control . I will let you know what i would do if i was in your situation . I would find another psychiatrist ,i can help you with a few if you live in Broward or Palm beach , Then i would tell my son that his current doctor is away for a few months , or you can no longer afford it (some white lie) if that doesnt work bribe him with pocket money . If you do live in one of those counties email me at quchiwow@gmail.com and i will give you my phone number and i can try and help direct you . This is a chronic disease and debilitating for you and him , i get it , im living it but there are ways to cope .

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Hi Linda thank you for responding. I have tell little white lies, because if not I would never get anywhere with my son. I unfortunately don’t live in that area, I live in Tampa. I want to find a doctor that knows more about the behaviors and symptoms, because this doctor anxiously knows nothing. I get so frustrated at times, I can’t call the crisis center again they really do nothing they hold him for 2 days at the most and send them home. I started counseling, but my main focus is on getting him better. My heart breaks that is missing out on being with his brothers. He doesn’t do much, but he did enjoy his time with his brothers. They are older and he felt safe with them. Now he has no desire to be around or even talk to anyone. He is in his own world and is not in a good world, when he fears it.

I can understand your frustration , continue to search for a good psychiatrist online and read reviews on them . Call Nami and ask for help . Is there anyway you can bribe your son with money to do monthly injections ? i know one mother that does that with her son and its working really well and he is stable . Keep educating yourself , keep strong and remember one day at at time . I have good days and bad days with my son and trust me i understand that sick feeling , i just started counselling for myself yesterday . I don’t stop educating myself with audio books , online , books , Nami , here on this site and i have learned so much on this horrific disease and this way i understand my son . Ive cried , I’ve grieved , I’ve been angry , scared , you name it ,i think i have passed every emotion but i have become stronger and wiser and when any problem comes my way i tackle it as best as i can . Right now your focus should be finding a good knowledgable psychiatrist and getting your son to sign the hippa form , hopefully Nami can direct you and if not do a ton of research or call your health insurance company and ask if they can give you a list of doctors then read on each of them , thats what i did . Hang in there and good luck , i wish i could help more .

Hi Mysty1,
My son is 28 years old and been dealing with SZ since 17 years old. He has all the symptoms described by you and other Mom’s in this thread. He also has co-occurring challenges with alcoholism, meth and heroin addiction. As a result of his illnesses (and I consider addiction a mental illness), he was incarcerated, multiple and repeated hospitalizations and the worst…homelessness for 9 months.

We tried every anti-psychotic med including Seroquel but nothing worked. Until we tried Clozapine on July 23, 2019. I remember the date because like Catherine’s experience, it was a total game changer for my son. I am so grateful! Since that time my son is compliant (for the first time ever), off any ‘self-medicating’ street drugs & alcohol and doing well. He lives in a nice Group Home and I see him at least once a week.

He still has internal stimuli calling to him through ‘voices’ and never socializes with anyone except me (and his cat at my house). It’s a very limited quality of life but one where he is not tortured by the dark and frightening psychotic demons that drove him to despair. He is safe and I would say, content, in his community living situation.

I have learned to accept what is and I continue to work on radical acceptance through the practice of mindfulness and meditation. My son has been my greatest teacher in teaching me to prioritize self-care because I cannot give or be present with a serious chronic mental illness when I’m empty. I learned to respond to this challenge by having strong supportive friends, leaning into the help from NAMI, counseling and my spiritual center. Mysty1, this is a avery challenging journey we’re on and for most of us Mom’s, it’s a road that we travel alone. Continue to share, reach out to NAMI’s support groups and give yourself as much self-care as you can. Warmest wishes, Dee

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Sorry to hear about your son, recovery is possible but he needs to have self discipline, self control and give up the pot & cigarettes etc.

I’ve had a history of severe mental illness but managed to get better and no longer take any medication, work part time 2 jobs and actually enjoy my life with my girlfriend and look forward to the future. If your son would like some ideas on how to get better here’s a link to my short essay

Link: http://media.yoism.org.s3.amazonaws.com/CakeTheory.pdf

Also I have a YouTube Channel where I air my views. Good Luck>

.https://www.youtube.com/user/caketheory

Please do not listen to Psychiatry Capitalis. I saw his youtube channel. He is delusional and actively anti-psychiatry and medications. He should be banned off this site as his advice is dangerous.

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@Lirik, there are many what I’d call ‘fringe’ opinions on this forum that I actively ignore. I’m sure there are some who disagree with my opinions, or think they aren’t practical or helpful for their circumstances.

I think caregivers can make their own assessments of what to believe, as baseless or delusional content is often self-evident and arguing with delusions often leads to further devolving. There’s an old Internet axiom that I follow in these cases, DNFTT.

Yes, you can go to the doctor with your son, if he will allow it. I always go with my daughter, at first she wouldn’t let me talk to the doctor with her, I had to wait in the waiting room, but now it is very normal for me to be there with her with the psychiatrist during the doctor’s appointment. She also signed the HIPPA form so that I can speak to the doctor on the phone without her. She thought she was signing for me to make appointments and get records, but I also checked the other boxes on the form before she signed it.

If your son doesn’t care for himself well, doesn’t take his meds, doesn’t eat, unable to pay for his food, etc., you can make a case for involuntary commitment through the courts because he is harming himself by not caring for himself. You must list all of the things that he is incompetent at doing for himself. Once the judge signs it, the Sheriff will come to get your son and take him to the nearest acceptance facility.

One of the friends I met in the NAMI family to family course several years ago just did that recently (again) with her son (ex parte Baker Act approved by a judge). She lives in Largo and he went to PEHMS and was kept longer than the normal 72 hours. I believe he is still there, now over a week, and he just has medicaid.

Good luck. It is most often not very easy at all to get a loved one to take meds they don’t want to take. Such a struggle to help our loved ones.

Historically the mentally ill have always been shun from society and hidden away to keep them quiet. I was given psychosurgery against my will which could have resulted in death but still managed to make a full recovery. Instead of giving me a pat on the back you ask for me to be shun from a mental illness forum. I think that’s terrible.

Anti-medications and psychiatry if continued like you do throughout the threads are a bannable offence on the diagnosed forum. At the diagnosed and family forum, we are pro-medications and psychiatry. I have no intention of shunning you out, but advice that are dangerous should be modded and removed.

Some family members might not have in-depth knowledge of schizophrenia or medications. Can you imagine a father or mother telling their son or daugther to not take medication because of his advice? That would cause them to deteriorate even further. The family members don’t understand their loved ones’ psychology and needs. As someone who has recovered so well and deals with this illness intimately, you and I both have a responsibility to guide and protect those more vulnerable.

I never told anyone to stop talking medication. Joanna Moncrieff has done a good video explaining how psychiatric drugs work. She argues they are psychoactive substances & work by DRUGGING you, they are not medicating an underlying disease, it’s like a shy person drinking alcohol to be confident. I think that’s an important issue to raise. LINK:

You said “he should be banned off this site as his advice is dangerous” in other words shun me. I’ve already been banned from the main forum anyway. The medication isn’t going to cure you and many kill themselves after receiving psychiatric treatment. People can carry on taking medication if they like but they can also look elsewhere for ideas in getting better. They won’t be able to examine alternatives if people like me are banned.

My husband, for years, in an out of hospitals…put on the same drugs over and over… he has a psychiatrist now who prescribed to him Clozapine. He told me and my husband that it can be “Life Changing”, and he was right. My husband has not heard voices in about 5 months and is actually wanting to take his meds. He takes Fluphenazine and Zoloft, but the Clozapine really is a life changer!

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