20 YO Son. Schizoaffective. Brutally mean

[MelC]

This is a serious struggle.

I hope this makes sense. It’s been a long hard morning already!

It’s been 4 years since my son was diagnosed Bipolar Schizoaffective.
He was medicated for 2ish of these 4 years and did very well on Abilify. He got accepted into one of the best creative colleges, moved to campus and immediately quit taking meds.
My son currently lives with my long term boyfriend and I. Unfortunately, he is self isolated in the basement. Not going to college, not working, no driver license. Plays video games, watches movies, sleeps all day and up all night. This is not the life I dreamed my only child would have.

We just moved into this house 4 months ago. The monsters at the end of the driveway moved with us too. My son has every positive and negative symptom.

I believe that the louder the voices are, the louder my son is and if there are voices while I am presently speaking, my son will yell over me and not allow himself to hear me or the voices.

The meaner my son gets, the harder it is for me to be patient and empathetic with the blunt force of his anger.

His biggest delusions are that him and I have never liked each other along with all the “excuses” about why he can’t do something (pretty much anything and everything). There is no reasoning with him or having a half normal conversation. Unless he is medicated.

My son will not voluntarily admit himself. I have called 911 immediately after he admitted to hurting himself (because of me of course) and provided a recording of his confession. But the self destruction was a week prior to the confession so apparently there was nothing the police could do. Even-though he just stood there screaming at me with distorted thoughts and I had to just sit there and take the beating. I never raised my voice once.

Since my son is so against me and previous experience with the police has not proven helpful, it seems that if I call 911 again that it will escalate current issues and likely create new ones. He is paranoid already.

Currently, we are not buying him any “special” food and he has access to only healthy items. His retaliation is to hoard all of my silverware. I will be buying new silverware so the family coming over on Christmas will have something to eat the feast with. This is the second set of silverware I have bought in 4 months.

It’s recommended to not add stress on them. But what about me? The giver, the supporter, the one that tries to lift spirits and encourage people. The one who is strong. What happens when that person is depleted? Because I can’t take the mental beating anymore. My mental health is steadily deteriorating from all the trauma.

My son’s behavior is abnormal. It seems the only solution is medication.

Has anyone tried anything out of the norm and had success?
How do you fix behavioral issues with this illness? Or is it only done with meds?
Where do you draw the line when they are noncompliant? Refusing treatment, will not take meds, and blames you for not helping them but does absolutely nothing to help you help them?

The answers are limited and likely obvious. Maybe I just needed to write and get this out.

Thank you for taking the time to read this. I appreciate you!

[oldladyblue]

I am so sorry @MelC for the daily struggles you are having. I went 3 years taking care of my daughter and failing miserably over and over, until the miracle night in Dec 2018 that changed everything.

Unfortunately, NOTHING helped her except a strong anti-psychotic forced on her by court order after her 2nd arrest. Before that there were police at my home over 40 times in one year, failed forced hospitalizations when she immediately stopped taking meds once released, screaming all night until her voice was raw, keeping me from sleeping, very very weird behaviors, etc. Between Mar 2016 and Dec 2018 I was beaten down and down mentally and physically by the ups and downs of her behavior, yet I could not give up on her.

I did many unusual things over the years to try and end the nightmare. I neglected myself and my health to a very low point, which I do not recommend doing. I know now that I should have done everything I could have to force her onto medication and keep her on medication very early in her illness, BUT I didn’t know how to do that, didn’t WANT to do that, so it took me 3 years.

I have a success story now. She has been on the Haldol Dec shot for 3 years and is a “normal” member of society and my family, working, paying rent, being pleasant and enjoyable to be around. Not everyone’s successes have been this large, and for that I am daily grateful.

But you MUST have hope, take care of yourself, be prepared to force medication since you KNOW it works for him, learn from others’ experiences, join NAMI, read “I’m not Sick, I don’t Need Help” several times, learn the laws in your state, and be prepared to do things you never dreamed you would do to help your son. And most of all forgive yourself.

[MelC]

@oldladyblue

@oldladyblue

yet I could not give up on her.

This right here. I am right there with you.

Did you call the police every time she had symptoms? That would totally bring awareness to the situation. My son has had evident bipolar symptoms since about 8 years old and other behaviors as a toddler. Seems like his whole life I have been begging for help. Shortly after getting a diagnosis he turned 18 and poof all of moms rights to force meds was gone.

I ordered the book this morning and will keep digging into the laws. My therapist told me a lawyer needs to be involved. Ugh. We recently moved from the east side of Michigan to the west side and everything is so different here! That’s ok. NAMI does not have any support groups that I have found here yet. So maybe I will start one! The health system is different but I think I might have found a psych emergency room which may help get him admitted without being arrested. A mom can only hope! I will be calling them for details.

I had that success story like yours before he turned 18 and I am determined to have it again. The brain is a trainable tool and if he is motivated he can have that success story again, too.

Thank you so much for your response!!

[oldladyblue]

Hi again @MelC . Glad to see your post. Keep coming here to feel connected up and to get ideas from reading others’ experiences. Only the compilation of many ideas from this site and NAMI helped me know what to do to eventually get my daughter medicated. She was so seriously ill that nothing else would have cracked the psychosis but meds.

However, in the beginning I really just thought she was acting out… just being really weird and uncooperative. I didn’t understand delusions, and I didn’t see her talking to her invisible friends. I was so uninformed on severe mental health issues when she got ill. And I couldn’t bring myself to try to force anything on her when I finally understood that she should take meds.

No, we didn’t call the police every time she showed symptoms. The police were called every time there was some sort of a threat from her to self or others. That is the criteria for forced hospitalization: threat to self or others. I saw/heard and called, and then the police must hear/see the threat themselves when they arrive (in order to take her), or they just sort of settle things down and leave, as they must per the law. Sometimes she called them on us, saying we were threatening her. Some of the police came to know our house and its inhabitants from regular visits. She was only arrested from my home once, and only force hospitalized 5 times although the police were at my home over 40 times. In general the police didn’t mind coming, but wished something else could be done.

Your determination and luck with the “forces of the universe” will be needed to get him force medicated. Once he is on meds, perhaps he will be willing to stay on them. It is often a big struggle to keep a loved one on meds as WE see the changes, but THEY don’t think they need the meds.

Good luck, and take good care of yourself.

[MelC]

Hey @oldladyblue This forum has been a part of my life from the beginning of my sons diagnosis and has presented a wealth of information along with a much needed reminder that we are not alone.

Perhaps I need to schedule a meeting with someone at the police station to introduce myself and this heart wrenching journey. The just might have some wisdom to share!

A few days ago my sons exact words were, “You’re the reason why I have a noose hanging down here.” but when I asked him to show it to me, he didn’t have much to say or show. This left me quite conflicted on if I should call the police or not. I didn’t.

Shortly after the noose comment, he told me he doesn’t want to go back to the doctor because they will only put him on meds. The next day he walked around in a tunnel vision, ignored me completely and yesterday morning was like a normal person. First in the morning he took a shower, was speaking to me again, and I even got him to leave the house. I do not care that I had to invite him out for ice cream. He needed the sunshine, the fresh air, and to know he can trust me. Ice Cream has been a savior through this illness. It gets him out of the house. Next is going to Costco and most of the time getting a coffee. While writing this it dawned on me… maybe ice cream will get him to the doctor.

Thank you so much for your support! Just writing back and forth has paved way for new hopeful strategies.

[buenosaires]

I am sorry for what you are going through with your son. I have a similar situation with my son, an only child. He is medication compliant and is on a low dose for schizoaffective. He is living in a small group home which helps him be more responsible by taking his meds and is considerate of others as he must interact and socialize with the other residents. While living with me, he would not leave the house, unless I took him out, and was more dependent on me. I have less stress not living with my son. At the same time, he visits me daily to have lunch. This means that I can see how he is doing on a daily basis. He still has mood swings, i.e. debative, depressed, irritable. However, I can tolerate it better as we do not spend 24/7 together. He has not worked in thirteen years. He is capable of working part time or voluntarily, but has made excuses why he is not able. This to me is part of his condition. Before his mental illness appeared, my son was independent and productive. So I know that it is not part of his personality. Now he is on SSI.

[oldladyblue]

He @MelC and @buenosaires . Merry Christmas eve.

Yes, this site is a comfort, and a way to not be alone in one of the loneliest battles: against severe mental illness. I think getting our loved ones out of their room or out of the house is one of the ways to build some trust and to make sure they don’t totally hide within themselves. Ice cream is good, my daughter and I still do that regularly.

Any time a verbal comment was made that could be even mildly construed as a threat against self or others, the police were called. I did talk to the chief of police in my city, not specifically about the illness or the numerous calls police made to our home, but at a public event where he was mingling. I did ask him if there was a “seriousness” needed to call whenever a citizen felt threatened verbally or physically and he responded VERY quickly, “no no no, any citizen should call on ANY type of threat. It is our job to make everyone feel safe. And our job to discover the truth in any situation. Plus my door is always open.” If you feel you should meet your chief, @MelC by all means do so.

@buenosaires it sounds to me like you have made the best of your own and your son’s situation over the years. Very good job!

[Redmaple]

@buenosaires this is what I hope for, with my brother. Thank you for sharing!

[MelC]

The only child thing brings an entire wave of emotions with this illness. Doesn’t it? That’s a topic I could probably write a book about.

My son has excuses why he is unable to work also and I too believe this is part of his condition. Thank goodness there is two of us!! Seriously though… in my opinion this is not a “normal” behavior and who doesn’t want to make money, gain independence, and life a fulfilling life? And to them, these excuses very well might be reasons.

My son was born this way. When I was pregnant, during the 5 month ultrasound they saw enlarged lateral ventricles in his brain. There isn’t laymen information on the topic (I have searched all these years) but after his diagnosis I was finally able to relate the topic to schizophrenia and found info deep in psychiatry journals. He has always had sleeping issues, defiant, and constantly complained about being bullied (it seems that the mental monsters did/still do most of the bully work). Also, after his diagnosis he told me he has heard voices his whole life and thought everyone else did too.

A group home would be wonderful for my son too. And it sounds like a relief for me; like it is for you. My son lived with a friend for a few months in 2020 and just before his return home I started to feel like my true self again.

I love your success story! I love that your son comes to see you everyday for lunch! I love that you guys have a relationship!

Thank you for sharing!!

[MelC]

@oldladyblue
Merry Late Christmas!

Agreed! Ice cream is good!! And if my son wants to get the ice cream but go home and eat it, I force him to sit with me while we both enjoy it!! Muahahaha!!

That was a great idea to casually approach your chief at a public event and simply ask the general question.

On Christmas Eve, I was finally able to talk to my son (while he was waiting to leave to celebrate with the in-laws) about his application for disability. He came out and said, “I probably need to go to the hospital anyways because it’s been a rough few weeks” and I let him know that I have options to help him. While I know his comment is genuine and he means well, it may not happen so easily.
He also reminded me that one of his hallucinations is peoples faces change. No wonder he stays in the basement. That’s absolutely terrifying!! In the past he has told me that my face changes too. The changes are monster faces. Perhaps thats when hes screaming at me. Makes me wonder if it’s a common hallucination for the illness.

[Hanginginthere]

@MelC I was on a Reddit forum about a year ago and a young man was writing about what a great day he had because he had made it though a job interview even though the interviewer’s face kept morphing and changing.
This is why I feel like our loved ones are heroic. How many of us could face every day with this going on in our heads? And yet so many with this illness do carry on hoping each day will be better. And, even medicated, they deal with lethargy, weight gain and a world who has very little compassion for their journey.

[Hanginginthere]

@MelC I could have written your original post about 3 years ago. At about age 25, our son became med compliant. A new doctor told him that he deserved some peace of mind and that really resonated with him. There was no attempt to try to get him to admit his diagnoses.
His road to recovery began by eliminating marijuana, then staying on meds (we foolishly believed it was all marijuana and did not insist on med compliance at first), then giving up alcohol which was very difficult for him, then also caffeine which had a detrimental effect on his moods.
As many others have mentioned, the time to make big changes is when he is in the hospital.
With the help of a social worker, we were able to hold boundaries on these things by making them a condition of him living with us after discharge. I wish I had a better answer for you as to how to get your son to the psych hospital.
In our case, we got a magistrate’s order to have him picked up and taken to a psych evaluation center. We had to say we felt he was a danger to himself which was a bit of a stretch. It was horrible for all of us, but it did work.
It also broke my heart when he was put in back of a cop car crying and saying “but I didn’t do anything wrong”. We did all of this in concert with the family therapist at the early psychosis program he was in.
It wasn’t all smooth sailing and who knows what the future holds, but as of this writing he is working 25 hours/week for the first time in his life and has been substance free for 19 months and medcompliant for the same amount of time.
I can’t say enough about Clozaril and wonder if we all would have been spared years of pain had he been prescribed that earlier.
He has also gained a ton of weight, has no friends other than us, and sleeps 12 hours a night. But, he does indeed have peace of mind now. He says he is happy and although it’s not what I imagined for him, I am learning that he does not view his situation as tragic.
I did learn along the way that regardless of how in crisis he was, allowing him to be rude and belligerent was not helping him and certainly not me either. Easier said than done!
I hope your son accepts help soon and that you can get some well deserved peace of mind as well.

[Hummingbird]

My son also has the hallucination of people’s faces changing to monster or “demon” faces. He would also see scary faces on the wall or in shiny surfaces.

Clozapine has really helped. Not completely, but a lot!

[roseo]

Have you tried going to the magistrate to have him committed the only problem is that he has to be a danger to himself or to others. Have you tried NAMI for advice
or support groups? Or ACT for the mentally ill google it
I also deal with issues and my son refuses
to do anything except smoke and use drugs. Right now he is homeless during the day and sleeping at night at my place.

[penelope_pitstop]

Its been 20yrs since son diagnosed with sz. Looking back i made many mistakes when he was a child, also when he became ill through not understanding and fear because of his anger towards me.
After years of anosognosia, he accepted his illness and has been on meds for years. He is able to manage his life, has his own place, went to university and got a degree, has many talents and i admire his strength in overcoming so much. Enjoy our discussions about the state of the world but always on eggshells.
The long roller coaster of emotions and i feel i am back where we started. I said something he didnt like, nothing rude or abusive, just the truth as i saw it. He was furious, has cut off contact. Im fearful of whats next. Im alone with this, family gave up years ago.
Despondent, realise all my stress and trying really made no difference to anything. Guess the take away is something i read on here. The journey is his. I cant change anything so may aswell focus less on him and more on trying to gain some peace of mind for me.

[oldladyblue]

So sorry @penelope_pitstop that an innocent remark set off your son into cutting off contact. It is nothing you could have predicted, so try not to beat yourself up about anything you’ve done recently or in the past that might have affected him badly. As you said: Yes, the journey is his. Especially if he’s been on his own for years now. Well done for all you’ve been able to contribute to his wellness! I think it is great that he has been so independent. Be kind to yourself during this rough patch. Here’s hoping that he contacts you again soon.

[MelC]

They are absolute hero’s!!
Very well said!
The face morphing and constant screaming inside his head is a distraction to me when trying to empathize with him. It’s hard enough to focus as a sorta normal person!

[MelC]

[quote=“Hanginginthere, post:12, topic:11881”]
“but I didn’t do anything wrong”
[/quote] … What a heartbreaker!!

It’s such a contradiction having to endure so much pain for such a victory. But, as long as your son is happy with his peace of mind, that is most important. Sometimes having friends is overrated anyways!

Thank you for your kind thoughts. It’s all easier said than done and we never know what the future holds. Raising my son with the behavior problems has given me an, “everyday is a new day” perspective on life… especially with him. Heck, the older I get the more that perspective is applied to life in general.

Keep on celebrating those victories!!

Peace of mind is an amazing point of view and I absolutely love it!!

[MelC]

This has to be a terrifying way to live.
Is Clozapine the only med your son is on?

[MelC]

I have not went the magistrate route yet since it seems like when he is a danger to himself, I find out too late for the law to do anything. A Psychiatrist once told me to just say that I am in fear of my life. Unfortunately, my liar skills are not very strong and I really struggle to use them. Then to lie like this to the law about my son really just blows my mind.

I am feeling for you since your son is homeless during the day. After all, you still need to take care of yourself too. Yet as a parent, this is one of the hardest adventures. How is your son doing?