Family and Caregiver Schizophrenia Discussion Forum

What to do when I am so tired?

I am so scared of my son! He has schizoaffective disorder and he is down right mean, angry. I don’t want him living with us anymore. I just can’t find what to do with him. I don’t want him living in the streets or in prison cuz I know those aren’t good answers for him. I am tired of having to run away from my own home fearing for my safety. I feel bad for him, and I know he can’t control this, but I can’t help thinking that my life is forever on hold. How do I get time to relax ever? No vacations, he can’t be trusted to not destroy the house. So I work every day and try to deal with him every minute I am not at work. I fear getting him an apartment will only put some poor unsuspecting person in danger. Anyone know of resources in South Florida? Nami is still shut down.

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Tippy, Has your son injured you? What happens when you are in fear and you call the police? Do you know if your police department has a designated officer for mental health issues?

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I don’t know how old your son is or what kind of treatment you have pursued for him so far, but have you considered gaining full guardianship of him so you can in fact force him into treatment of some kind? Court ordered treatment would be a start. Your son is ill and has no control over his bad behavior-it truly isn’t personal even though it feels completely personal. Contact NAMI in your area (if possible) they have classes for parents that really help you to understand what you can do and how to better understand the illness your son has. They may also have recommendations for alternative supported housing. Most places will require that he be under regular psychiatric care though, hence the suggestion on guardianship. Having control of your son’s finances can come with guardianship and for me personally that was the most helpful for me gaining “compliance” from my son when I needed to. I have been where you are many years ago. Guardianship was my salvation for me and my son. NAMI Family-to-Family | NAMI: National Alliance on Mental Illness

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Hi , how do you get guardianship ? through a lawyer ? I was advised to get one too

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Contact your local probate court. They will tell you what to do. In my state they ultimately waived the court fees at the end of the process because my son had no job and the costs went to him because the process was in his best interest, Had they not waived the fees however I would have had to pay them… They vary.

Once you apply you need to gather all your medical evidence supporting his diagnosis, also note the all the facts that point to him being unable to support himself (if that is the case) the court looks at inability to take care of self properly, unable to manage money properly, unable to behave acceptably in public or at home and any legal problems or other unmanaged health or hygiene problems…sounds like you are building a case against your son which you are but in reality this is the best gift you can give him because at times like these our ill children (grown or not) need us or somebody sane and stable to take the reins and make the correct decisions that they are mentally unable to make.

Once guardianship is granted their agreement to the decisions is not required. It is strictly between you and the doctors and then once he does improve things can gradually get less stringent for him. It takes time and patience though and almost religious compliance on his part and almost religious vigilance over his compliance on your part.

My son was very angry and sullen with me for awhile and I didn’t get my real “break” for a few years, BUT once he was getting the proper medication and proper care and I saw improvements my stress levels dropped dramatically. Today he still lives with me and still needs support and redirection but we get along very very well, I couldn’t ask for a better roommate in my son. It’s just me and him.

The money thing helped me the most though. I gave him no money in the beginning and when he was non compliant he didn’t get extras he wanted, pop, coffee, cigarettes, candy etc…I stuck to my guns and eventually he knew fighting me only hurt him.

Now he has a credit card with money on it he can use every month but he rarely uses it, he buys what he needs when we shop together and rarely seeks extras of anything. He buys the same amount of cigarettes, pop and coffee and even sweets each month, it’s reasonable and it’s his only vices but it works out well. He use to be a drug addict, without money and with his natural inclination to isolate his drug problem went away. He has been completely clean and sober over 10 years. Anyway, I’m rambling… I truly wish you the best, this could be the beginning of a true recovery but you have to have a good doctor for your son and you have to stick to your guns and always attend every appointment with him and always make sure the doctor hears the full truth about your son’s behavior and reactions to meds etc,never rely on your son to tell the whole story or do it in your absence…

Things may have changed in the many years since I started all of this but if you want to talk about it anytime just message me and I will get to you pretty soon a day or two max…good luck from my heart. PS: One thing I did for myself to stay sane was I got a therapist for myself…and wow I still see her…it has helped me tremendously. Just a thought.

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Thank you for the advise. I will have to look into it as soon as I can. Its so hard to do all of this and still keep on working.

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My son has grabbed me forcefully and when I looked into his eyes, I just knew that he wasn’t there when it happened. Scared me to death. The verbal abuse, the throwing things, and punching things are very scary. When the police are called, its like the psychotic episode goes away. He is able to speak to them somewhat normally and they leave. As soon as they are gone, it starts again most times.

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My son is 25 and he has been working with a psychiatrist that has not been able to find the meds that work for him yet. He takes his meds, he is not doing any drugs or alcohol abuse that I am aware of. He doesn’t think he needs the meds, cuz’ everything is mine or his fathers fault, but he does take the meds. They just aren’t working. It is a constant vicious cycle that goes on all day and night. Nami is currently closed due to covid. We did an online meeting that I did not feel was very helpful. They basically said everything the website says. I am hoping that it will open again soon as I have heard its a valuable resource. Thank you for your reply. Just knowing others are going through this is a comfort.

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Tippy, @oldladyblue may be able to assist you, I have used the ‘@’ to draw her attention when she is next online.

Since your son is taking meds and working with a psychiatrist, is he receiving disability?

Some of our family members do much better if they aren’t living at home. My son was a risk to my husband and myself, he does really well when he lives in his own apartment.

A phone call to your county judge’s office may be able to find you some housing resources Where I live, my county judge cannot be approached directly on mental health issues. We have to start by contacting the county mental health officer in the sheriff’s department.

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I couldn’t do both for long myself, my health started to deteriorate to the point that I had to go on permanent disability which I don’t ever hope for anyone but in my case it gave me the opportunity to look after my son full time and care for myself in between. I applied for home visit assistance for my son, but it took so long to get approved that when it was approved I no longer needed it, I was home all the time. Perhaps your job would allow you some FMLA time to care for your son, I know that can be kind of difficult depending on the job. Still maybe an idea?

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We were recently told by our lawyer that even if we have guardianship we can’t just have him admitted.,our lawyer went to the attorney general’s office where guardianship is filed. This is in Delaware. This was our last resort. So how disappointed were we! we are in same situation, we don’t want him here, but can’t put our child in street. Delaware has NAMI housing but he has to cooperate, thats a problem. Theres so many long term rehabs for drug abuse that insurance pays for, none for mental health. We are stuck dealing with it.

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@Tippy This is true. Unless the law is different in certain states, a guardianship does not give the right to force treatment. That was made very clear to me. However, with a guardianship, you DO have control (so I was told by the attorney) over where the person lives. If they leave, you can have them picked up. I don’t know how well that would work in actual practice. And with a guardianship, you have the right to be involved in his medical and mental health care and his financial matters (if a full guardianship is awarded…this is named differently in different states). Guardianships are not readily awarded by judges because they take away a person’s rights. The person must be in a condition where he truly cannot care for himself.

@Catherine gave great advice above.

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Tippy, I totally understand where you are now in your care and relationship with your son. I was in the same type of situation from early 2016 to late 2018 when my daughter’s illness began and she became not herself. I am in the Tampa Bay area, and here the police force has been through NAMI classes so they know how to handle those who are mentally ill. At first, I wouldn’t call the police on her, but after NAMI classes and finding this website, I realized that the police and court system could help me, and her. She hurt me a few times and each time I called the police. She was arrested and then Baker Acted the first time because of my call to 911. Over the next 2 years, she was Baker Acted 3 other times. Often the medicines did not work well, mostly she stopped taking them. One time the medicine was a long acting injection which worked very well, but she refused to take again. Then in Dec 2018, after 2.5 years, she was arrested when out on her own downtown. The morning after that arrest, I went to her arraignment and asked the judge for his help i.e. forced medication, as by then I knew which medicine worked for her. He Baker Acted her from jail, I faxed the three local hospitals with psych wards asking the doctor (IF she was there) to put her on that long acting injection again, and she was court ordered to be medicated, so had to get the injection monthly till the court order wore off. That was the start of 2.5 years of heaven compared to the earlier hell.

From 2016 to 2018, the police came to our home over 40 times in total, often she would come out of her psychosis when the police were at our home, a few times they knew she was in psychosis, but she was not threatening herself or others so there was nothing they could do but try to calm her down. Some policemen acted with more compassion than others. Some would pull me aside and tell me to “handle her better”. I would ask them what they suggested!?!

I don’t think there is any type of 1 size fits all solution for this awful mental disease, you must learn as much as you can so that when the right situations arise you can take advantage of them to move things ahead one step at a time. My daughter still would probably be unmedicated and stuck in a terrible cyclical psychosis if I had not learned this state’s, county’s and city’s rules and taken advantage of what I learned to get her force medicated.

I was totally worn out working a job and trying to handle her illness, but luckily my boss understood this illness and let me take off for emergencies at the drop of a hat. I still work my job, but part time now as I am close to 65 years old. My daughter is doing well in her new life, but cannot live on her own, she is with me still. My heart goes out to you with this struggle, but if you don’t fight for his welfare, no one else will. My family and friends kept urging me to “throw her out” or use “tough love” during those long years of psychosis. But all know now that basically I saved my daughter from being lost. I hope you can do that for your son, while fitting in caring for yourself too.

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Hi Catherine,

May I ask the name and number of your therapist? I have a similar son and I need a therapist. Thank you for your help.

Darcy

If you are able to share this information, please feel free to text me at 716 -998-6235.

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Hi @DarcyAnderson, Welcome to this site, you can read through past posts and learn a lot that might help your own situation. I am a veteran, so see a therapist in the VA. You will have to find someone in your own area, and perhaps NAMI can suggest where to look. Just doing NAMI classes and support groups helped me tremendously. I wish you well handling your son’s illness.

@hope4us ,
What is the point of getting guardianship if you cannot force treatment? I am already the representative payee for my brother’s disability payments. That is the only income he has and he does not have access to it . I was also thinking of getting guardianship of my brother. I met with an attorney who ( among other things ) told me that before granting guardianship , the court would send someone to find my bother and inform him of what I was trying to do and also try to evaluate whether he could appear in court and make his own statements . This is the part that makes me hesitate. This could be vey disruptive for him if someone from he court tries to interact with him. He may not ever trust me again.

Yes, I understand your point! I thought the same thing for my son who refused medication! However, there are other helpful things about it. But you definitely have to consider the relationship. Yes, the court will send someone out and give him paperwork and I worried about that. At the time, my son was so sick (hospitalized) it didn’t really matter. He chose not to appear with the appointed defense attorney at the court hearing. Now, he is doing great (on medication) and doesn’t even remember any of that.

Tippy, I’ve been dealing with my son’s Schizoaffective Disorder for 18 years.
He was labeled Treatment Resistant as no meds worked on him. He would only get angry if he drank beer, smoked weed, or did a drug which he had problems with so that was often.

After his Dr put him on Clozapine 3 years ago it really helped him. He’s very sweet and we get along well and go everywhere together. His father and I divorced ten years ago. His dad was afraid of him and gave up on him. He said he was going to end up like “those people you hear about on TV”.
I knew my son had no chance if his father felt that way. When he’d get angry I was able to calm him or get him to agree to go to the hospital to “take a break”.

In Sarasota, Florida they have built a huge complex for the mentally ill. It has apartments above markets, banking, all the psych supports, everything they need right there like their own little village. You can look it up.

Like others here, things improved after I got Legal Guardianship which in my case my son was happy to agree to. I told him if I wasn’t his guardian someone from the state would eventually become it so he’d rather I do it.
Mainly, I was able to be more involved with the Drs and give them the clear history, etc that my son wasn’t able to. And they listened to me in the ER if I said he needed to be admitted. I know about the “danger to themselves or others” criteria but our hospital knows my son well and admits him when he says he “needs a break”. He gets afraid when he has breakthrough voices that scare him.

I don’t know what a vacation is. I take mini days off to go to the beach for the day with my son. Or we visit his brother in the city, go for a hike together or a walk/jog on the nearby high school track. These things help give us exercise and relaxation. The trick for getting my son out I’ve learned, since he does isolate with his music a lot, is to go to these places off hours, when others are less likely to be there.
Too many people cause him stress.

I work as a CNA for an elderly woman (I’m 66 myself) from 9:00 pm to 8:00 am 4 nights a week. So I can be there for my son during the day. I have to wake up with her once or twice a night so I usually nap when I get home for a few hours. This works with his schedule of going to bed early and waking up late.

I get practically zero support in my county in MA. Berkshire County. I’d like to move but I don’t know where I’d go. I’d go anywhere that has great services for my son but I don’t think I could live in Florida but am considering it. The other place I found with great supports are the state of MN but it gets really cold in the winter. So not good for my arthritis. If anyone can recommend a county in their state that has great services for our loved ones please let me know.

This is a long journey that has taken me very long to accept. I wish you strength in your journey and send hope for your son and all our family members. I believe even better meds will be available soon. I’ve read about the newest med, Caplyta but don’t like the side effects. Although they say it doesn’t have hardly any, other studies have shown it could cause permanent TD, even after stopping it. So far my son is doing very well on the Clozapine except for some dyskinesia.

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Thank you for your suggestions. I will check up on Sarasota. I found a place for long term in Orlando, but you have to be a millionaire to go. Minimum 8500 a month and will not take anyone who is or can be violent! Cash only! Very frustrating! I am so glad to hear that you are at a point where you can get a long with your child, I am currently cowering in fear of the next explosions and hate it. I hope I can someday write that I am getting along with my son again.

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I am hoping NAMI will open up again soon! So far everything is online and I just can’t do that at home with my son listening in. I am hesitant to call the police because his psychiatrist felt that it would make him lose what little trust he has in me be lost. Well meaning friends and family who have NO idea what we go through give the same advise to me too. “throw him out”, “tough love”, No one can understand unless they are going through it too. Thank you for sharing your struggles and I have to keep looking for answers. Why does it have to be so hard to find?