While it sounds hurtful, back when he was really struggling to understand, my husband seemed to need me to use the word “crazy” in regards to Jeb’s behaviors.
They say at FtF, the biggest struggle between parents of a child with mi, is being at different stages of understanding the illness. Whoever is “ahead” has to be patient and try to move the other spouse along.
I can relate to that part too , I guess we go through stages at our own pace, a bit like how grief is an individual experience.
It maybe just helped your husband for you to say that.
My husband is caring to others with special needs and I sometimes say to him to accept and treat our son like that. Most of the time he does.
Yes, I think he needed the constant reminder for quite a long time that our son can’t control his illness when it’s bad. Because he would see the “instant recovery” of the psychosis - not the delusions- when police show up, my husband began to think Jeb could turn episodes off and on at will.
In frustration during an argument, I once said to my husband, “you could never handle having scz as well as Jeb”. He honestly felt he could do a much better job than Jeb does.
For all of us who aren’t familiar with scz, it can take a lot of time, research, help from others, and thinking to actually get your mind around the scope of this illness.
I am glad your husband is caring with special needs and that you have given him the good guidance of applying that to his relationship with your son.
We are human and we all have days when we afterwards we wish we had done better.
Hello, a family person is diagnosed with schizo 15 yrs ago and i didnt see any improvement till now. I dont know about your son for how many years he is in this condition but ill give you just one advise. You have to learn living with this because its not an easy disease to overcome. Your son cannot do anything because all these drugs block his system to move, talk be active in general. If you want to gain sth both you and your husband is to adapt yourself in this difficalt condition and you are ‘‘lucky’’ because he isnt violent to you. In my case i was afraid about all famillys life.
So thats from me.
The med roller coaster is over for my daughter at least for now. It’s a process trying to find what works for each person’s.
Meds don’t make the voices go away, but it helps the behavior. She doesn’t want to run away or be homeless anymore.
She has gotten SO much better, that we are letting her live on her own (with a puppy) in our rental unit about 200 ft from our house. We are close, but not watching her every move. Just monitor meds and smokes, appts, and household chores. We are so happy she is doing well enough to live on her own. Keep trying, never give up. There is hope.
Can I suggest that you find a good holistic healer and have him detoxed? Molds and heavy metals can cause a person to behave in a psychotic manner. My son had a detox done this year, and he stopped behaving like a raving maniac the day after he began his detox!!! He had toxic black mold surrounding his brain, heavy metals in his body, which of course will affect the brain as well, pesticides, and other environmental toxins. He is actually happy now, and is working TWO jobs!!! I’m not saying this is going to help your family member behave more normal, but what can it hurt to try?
My person actually has paranoia, he thibks he has done many great thinks for the nation and he waits for presidents to thank him from tv. And i know he was smoking hasish from his 16. But i could give a try on a blood test about heavy metals, thank you for your recomendation.
Yes, my boyfriend recently talked to me about his voices in his head. He is fully aware of his condition and mentioned to me that he still hears the voices and they coexist with him. He does work day by day, minute by minute to manage it on his own with no medication. I am proud of him and I am realistic that this might not always be so.
I am now making sure I take the time to learn about his unique schizophrenia and not just him the man, but both that live within him.
Today, now when I think back on him mentioning/explaining to me the voices that coexist within him, I now know I was wrong; it wasn’t just a childhood imaginary friend he was talking about, I know I was naive back then. It was a perfect lesson for me, that when he shares his condition with me that hes being 100% honest & real about what he is describing to me. I’m glad that I am truly learning to have better understand of him and the realism of this condition. I appreciate his openness with me and hope that he keeps meeting me halfway and sharing with me, especially now that I have took my “blinders” off.
My son too hears voices and sees entities that are not there…at least not that I can see. It has been suggested that he may be a psychic. It started when he was a young boy, and a little girl would be standing next to his bed every night. He was afraid to go to sleep, so I would sit next to him until he was able to drift off. Of course, he always ended up in my bed later on in the night at some point. He was fearful of what he was seeing, but I never expected it to grow into what it has become over the years.
It makes sense to me that he really is in touch with the other side. He has even seen some of my dead relatives during an altercation that we were having, and according to what he was seeing, I believe those entities were trying to protect me from him. They were yelling at him, he said. Thankfully he stopped what he was getting ready to do. He described 2 of them to me, one was my aunt who he’d only seen alive once when he was about 18 months old. The other was my grandmother.
From what I have been told, a professional psychic should be able to guide him with this ability, and teach him how to either block the bad entities, which are very overpowering, and only let the good ones through, or block them all. He hasn’t decided yet what he wants to do with this potential ‘gift’. Personally, I would want that ‘gift’ gone!
Voices in his head may also be due to toxins sitting on the nerves in the brain, or something like that. I’m definitely no expert, but my experience with my son and having had him detoxed from all of the garbage his body had been holding onto for years has made an enormous difference in his life. His quality of life has had a marked improvement. Just sharing my/our experience in an effort to help at least one other person…I hope…
It was agreed today by his Doctor that my son would discontinue zuclopenthixol and try oral meds (he is compliant now) so he starts aripiprazole.
He seems quite happy about this. Has a review after a month on these to see how it’s going.
Interesting question, but no easy answer. What works for one does nothing for another—or worse causes symptoms to worsen. Then too there is compliance which does not always stay the same. And this has caused my son to quit meds.
Currently we are in a “no med zone”. Not for sz or even a cold. My son functions, but nowhere near what would be considered normal. But he baths on what HE considers regular basis and appears to be eating well. And the past few weeks he has been a sort of happy. He will smile and make jokes or tell stories once in a while. The thought broadcasts and paranoia are a constant part of the day. Conversations are exhausting and time consuming.
So there really is not an answer for your question, but can tell you all of us need to rant at times, so no worries there!
Absolutely, no guidebook on how to handle this. This is a safe place to be honest. I will keep you in my prayers. Just remember - anything can change from day to day, and that includes for the better. Love and hope.
Erma Bombeck wrote a really good piece once about parenting a special needs child (in this case it was from birth) . Her analogy was that it was like going on vacation and expecting to go to Rome, but you go to Paris instead. It’s not what you wanted or anticipated, but you make do. I don’t want to trivialize your pain, but I realized at some point I couldn’t help anyone if I shut down or lost mental acuity, hope, and acceptance. This takes years and it never totally goes, but I am better. I accept that we are going to a different place. My son is so smart and did not finish high school. He has no motivation. He wants this illness gone and gets angry about what was taken from him. He uses things to numb the pain. It’s not where I thought I would ever be or want to be, but he’s here. I have him, I love him, and I know we are going forward. It’s an acceptance of sorts. I wish you peace.
Jane - We all have days that are more difficult than others with our “kids” (some are older than others but we still refer to them as kids, right?) Please don’t feel that you have to explain yourself or your need to rant and unload. ALL of us have been there, probably some more than others depending on the circumstances. I agree with what you’re saying. We sometimes need someone to be gentle with us because the situation we are in is not gentle, there is no easy way to deal with it and sometimes we wish we could walk away (of course we never would - we love that child like no other). I just want to encourage you to come here when you need to vent, rant, or feel that you’re not alone. This was so helpful to me during my darkest times with my son. He’s doing better now and I thank God and the medications for that. Just wanted to send some encouragement your way today. Feel free to PM me anytime. Hugs.
Thank you so much Lisa, it’s people like you and most folks on this forum that really help, kind words go a long way, some people they really help and I am one of them. Really made me happy reading this. Thanks for being kind,