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Just thinking things over


#1

Son has a meds’ review tomorrow, we requested this, me and his dad that is. He is on a two weekly depot of zuclopenthixol but it’s not right for him, he actually agreed he will take oral meds which will open up more choices for him.

Now he’s panicking as the appointment is tomorrow, he is saying that he has to run away this week, to get them out his life and stop the mental health tapesm from ruining his life. He’s had a mini rant there.
I don’t think he will run away, I think it’s his response when he is anxious about something.

I’m in contact with another mother in uk her son has had some similar experiences and this jogged my memory today about something she said and it made me think back to before hospitalisation and meds for my son.

He was trying to make physical things right , he thought stuff was wrong with him that wasn’t.
He wore shrink wrap on his thighs to make them smaller and loose fat, he bought all sorts of hair removal creams, he bought blackhead removal cream . He wanted to pay £1000 to have his teeth all straightened (they are fine) he’s only had one filling in his life and never a tooth extracted ever.

Lots more things , he hated his hands as his fingers are very short , he wanted the broken and reset.
All strange things that at the time I thought strange but like I say something the lady said about her son reminded me.
Any of you guys understand this? Any of your relatives behave this way?


#2

I understand. Thinking back years ago, before we got the right meds in place, my son said his head was expanding? and he put a bandana on it so tight I thought it would cut into his skin. He did the same thing to his throat one time saying he had to hold his neck together, I managed to get that one off of him and then disposed of all the bandanas. He still wears street clothes to bed because he says they ‘feel right’ to him, and nothing else does…so he sleeps in heavy jeans and shirts and socks, He even would refuse to take his shoes off for a couple of years, luckily he does take them off now. He swore to anybody who would listen that he drank a bottle of bleach and it affected his stomach and made his stomach change inside somehow so certain foods couldn’t digest anymore. No matter how much I explained that if he had drank a bottle of bleach he would not be alive, he did not believe me…fortunately that and other beliefs and behaviors have passed, Some lesser ones still remain. For a long time he insisted his goal in life was to be a homeless person…so glad that one is gone now. Long story short I do understand it is a part of the intricate and complicated way their thoughts process or maybe fail to process at times. I hope the med review for your son goes well, and a better med is forthcoming.


#3

Ahh Catherine I can relate to you here too. It’s so complicated and guess it’s the way their brains work. Glad your son is stable now. Which meds are helping him right now?

My son sleep son same hoodie usually with the hood up .


#4

Clozapine 125 mg twice a day and depakote 1000 mg twice a day.


#5

I would love to know more about the thought processes. My son used to wear a hat all of the time and later it was a backpack. He wore that backpack for years and wore it at home school and everywhere. Later he began wearing shoes that were 3 sizes too big thinking that he was over 6 feet tall and in size 13 shoes. Once he began on AP he gradually lost those delusions but he still wears clothes to bed. Such a strange condition😪


#6

Had sons review today, it was decided he would stay on zuclopenthixol for now but reduce the dose , he was ok with this and so was I. Then he came home and said he’s running away this week and he will come back to me when it’s all over with mental health officials and he can read minds…


#7

Ohhhh… My family member receives court-ordered treatment and frequently talks about running away.


#8

Now he’s saying I let them into our house and I phoned crisis team Ike a “good little puppet”

It’s supposed to be a myth about schizophrenia being a split personality but I really see where the myth comes from.
I know it’s split between reality and non reality but the personality thing definitely has some substance.


#10

I think they are all different in their ‘weird’ behaviours. my son has not taken off his clothes for months, has not had proper showers, has the weirdest delusions. it is so heartbreaking seeing him so filthy and ruining his reputation (not that he goes out much, only when the social workers come they take him out for a walk or somewhere he can handle to go to) he wears 3 pairs of gloves 24/7, has a terrible hoarding obsession. his studio is so filthy and i am not allowed to touch anything or he gets totally mad at me where i have to fear for my life.
a huge part of his symptoms is severe OCD about so many things. and there is nothing anyone can do to lessen these, even the therapist has given up on him. it is a terrible situation and yesterday his case worker tried to commit him (involutary admission) to the local hospital because he has been deteriorating physically and mentally. he was very upset and crying because he hates the hospital. they let him go because he was not a thread to himself nor others. so we just live day by day and his dilusions and OCD becoming worst and worst despite all the heavy medication he is taking. clozepine and SSRI. has not made much of a difference except he is less aggressive and sleeps a lot, put on a huge amount of weight. its about surviving at the moment and has been for the last 5 years. watching the nightmare evolve. symptoms keep changing, but ultimately he is so isolated and lonely and i can not see this will improve. i do not think meds are the answer and i wish we had a more holistic approach to helping these deeply disturbed people who really need intensive talking therapy, compassion, love and patience. meds are toxic to their brains and there is a lot of research out about the harm these meds do. pharmaceutical companies only care about the money not the people. sorry about this controversial view but i think there needs to be a lot of changes in our mental health system. we can not rely on a .magic pill’ but have to invest more time to find out where the root of the problems lye. it is usually psychological, not physical as they tell us about an ‘imbalance in the brain’ this is proven not to be true.
dont mean to lecture, i am just a very heartbroken and frustrated mother trying to help my son in the best possible way. i wish there was a cure. it is the most difficult journey for us to care for our grown up kids who should be doing well like their friends. i have no answer to this grieving process. i have not much hope left but have to try and gather some strength on a day to day basis. sorry for ranting on. i wish each and everyone of you all the best in this overwhelming journey. you are not alone. we are all in the ‘same boat’ shame we can not meet up in person and give eachother strength. good luck. thinking of you and love you all !


#11

https://youtu.be/5xT5QQI6O4U


#12

its genetic predisposition and the only fix is to alter the dna, not in our life time:


#13

Dear Barbara,
Thank you for writing this post. I agree with you that everyone who becomes ill with schizophrenia has different unusual behaviors and beliefs that drive those behaviors.
I am sorry your son was not admitted to the hospital so they could at least get his physical health assessed and treated if needed. I am also sorry that your son is one of approximately 30% of people whose sz does not improve with APs (though less aggression seems positive, it is obviously not the only rubric).
For the people who do respond to medicine, it is widely known that more treatments and supports are needed, but these are rarely available. For people with sz who do not respond to medicine and those who choose not to take it, for whatever reason, I believe there should be strong medical protocols that involve certain types of therapies and other supports even without medication on board.
That said, a large study just concluded that sz is 79% genetic, so mostly genetic in origins: https://www.medicalnewstoday.com/articles/319674.php This does not mean therapeutic help is not needed.
Our family is fortunate in that our family member’s positive symptoms are somewhat treated by medication, to the point that family member has reengaged with life in good ways. If it were just the medicine, that would not be enough. There is a state run treatment team that takes the most severe cases in our state and provides supports our family could not provide. This is about a two year program and the professionals caring for people in the program are compassionate and kind, plus straightforward and dedicated.
Every single private industry in the US is money first, people second. That doesn’t mean they’re not making things we need like food, tires, washing machines, medicine, etc. From Brene Brown’s TED talk, I learned that blaming others (like the system or the government or big Pharma, who are truly truly at fault in multiple ways) is also a way of trying to move pain away from consciousness.
The pain and grief of this illness is compounded by lack of treatment (not just medication) and lack of understanding from society as a whole. To be forced from the group by a no-fault genetic illness is almost too much to bear.
I read your post with great interest and compassion because our family lived for years without adequate treatment and this current team lasts only so long. I want all of our family members to have the relief and care they need. Especially if people do not respond to medication (and even if they do), so much more is needed.
Thank you for your good thoughts and sharing your experiences. I think we do give each other strength and would be able to more if we could meet up. Thank you again for your caring for your son and for all of us.


#14

Thanks Hereandhere for your informative post. Again I have learned something from this forum.


#15

My son thinks he’s an alcoholic and has cirrhosis of the liver. Not. He has a delusion that the cops (city police) know who he is and what he’s thinking. I don’t know why he thinks this, but he does! And he’s never been in trouble with the law! He will only wear sweat pants and wears them until they’re in tatters.