My wish to know what my son hears and sees

I am getting obsessed about this.
I want to help my son.
I wish I could know clearly and precisely what my son sees, that I can’t see and know what the voices tell him, that I can’t hear.
I don’t want him to feel alone any longer.
What can I do?
It may sound selfish of me but the pain and sadness are unbearable…

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Hello @Tricia4 I understand that pain you feel. It has long since passed for me, but I can never forget it. Where my son was concerned, and in retrospect, I am not sure that even HE knew what he was seeing and hearing. That makes it pretty impossible for anyone else to understand it.

One thing you can do is to ask him. Ask him to describe it or even to tell you how it feels to him. Depending on his current level of wellness he may give you some valuable insights or he may let you know very little. He also might not want to discuss it, or he may say everything is okay (like my son use to do) when it is clearly not.

One resource that I found extremely valuable in my desire to understand my son’s illness as a free class I took that was sponsored by NAMI (The National Alliance on Mental Illness.) The class was called Family to Family. Not only did it explain mental illness in great detail it had speakers like a psychiatrists and former patients who had recovered speak and answer questions. It was so enlightening! Also, I found a network of other parents going through what I was going through, some are still my friends and it’s been about 10 years now. I don’t know if this resource is available where you live but if it is it is so worth it. Here is a link to the groups’ program. [NAMI Family-to-Family | NAMI: National Alliance on Mental Illness] (NAMI Family-to-Family | NAMI: National Alliance on Mental Illness) In the meantime try to enjoy any small victory or happiness each day brings to you and your son, no matter how small, honor it.

One last piece of advice that worked very well for me is early on in my son’s illness when the stress of 24/7 caretaking was really getting me down, I got counseling for myself, talk therapy offered at the same place my son goes to see his psychiatrist. I found a wonderful compassionate therapist and talking to her weekly really grounds me and clears up the confused fog I feel sometimes. Even though my son is much better I continue to see her because I know she keeps me mentally strong and helps me to learn more about how to do that for myself every day. If therapy is an option for you, it is also very well worth it. Another perk is the therapist often has good insights into what you may be experiencing with your son. Mine did. Meantime, take care and thank you for sharing.

(PS: On some level your son knows he is not alone with you there and unless he has said he feels alone directly to you he may not feel exactly that way, although it is understandable that you might feel alone in your journey with him and your grief, reasons this group and my aforementioned suggestions would all be helpful) hugs across the miles :love_letter:

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It’s great that you want to help your son, that’s a goal that binds most caregivers. But I feel you’re in a version of the bargaining stage of grief, wishing you could suffer along with him or exchange places. It’s a fantasy that isn’t going to happen, and even if it did—it’s not likely to help the situation.

Hearing and seeing what a sufferer is experiencing seems like a version of thought broadcasting, a positive symptom of schizophrenia which for me was most unpleasant, because it robs your sense of privacy. And even if it isn’t interpreted this way, reinforcing hallucinations and delusions often makes them more elaborate and real to the sufferer. Folie a deux (sharing a delusion) isn’t a “cure” for loneliness—it just fosters a further escape from reality for both. I’m reminded of a lyric I feel is a comment on alcoholism from Billy Joel’s Piano Man: “they’re sharing a drink they call loneliness, but it’s better than drinking alone.” Or Lily Tomlin’s joke about pairing off people who talk on themselves in Central Park so they look like they’re having a conversation. These are escapes from a solution— not real solutions.

I’m not saying your instincts are wrong. By all means, listen to and empathize with your son. But you can’t wish your way through the Listening and Empathizing parts of the LEAP strategy (search the forum for LEAP if you’re unfamiliar). You aren’t going learn what he hears and sees and thinks and feels unless you observe him and communicate with him, and that takes a lot of time and patience and detective work. You’ll also need to gain his trust. It’s all very hard and daunting and emotionally exhausting, but wishing and dreaming won’t get it done. Your son needs your help and support to recover whether he wants it or not and it sounds like your grief is keeping you from being an effective caregiver. Peer or individual counseling and coaching from NAMI or a therapist may help you feel less stuck and more effective in the caregiver role.

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Thank you Catherine :heart:

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Thank you very much Maggotbrane for your comments. It makes sense and sounds very wise

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I am very grateful for you reply and thank you with all my heart for making me aware of my grieving. I will look into the LEAP method and reach out. You also pointed out my son’s privacy which is very important to me as he is a very private young adult. Your words made me aware of the selfishness and ignorance of my wish thus morning. I did wake up full of anxiety and send the original message to get help and this you have given to me. Thank you

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I definitely don’t think your wishes are selfish or ignorant! Finding a counselor or NAMI classes are really excellent suggestions. But at the same time the sadness you feel is so normal and can make you feel all kinds of things that you’ll pass through as time goes on.

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In th beginning of my son’s illness I wanted to know these things but ultimately it is not helpful. It only causes more sadness to hear things that they go through and believe that are so beyond what you could even imagine. I will always be available to listen should my son decide to share things but I certainly don’t seek it out. As someone else stated, often times their experiences are undescribable. My son used to laugh at random times and I would question him about what was so funny and he would just say that I wouldn’t understand or that he couldn’t explain it. Thankfully those symptoms are gone now.

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My son and I had a very close relationship. I would often talk to his voices with him. He really enjoyed that, and that also opened up conversation for what they were saying to him.
One time they were saying mean things, so I scolded them and told them to go away until they could be nice. This put a huge smile on my sons face!! They did go away for a bit. I also told my son that he could control them, and he needs to tell them to leave when they are mean. I know this all sounds so strange, but it really opened up a new relationship between my son and me. He started sharing his interactions with his hallucinations with me, once he knew that I was on his side.
I learned a lot about what he was dealing with.
The visual were letters and numbers, Pokémon, and SpongeBob. He said that it was probably Pokémon because he was so into that when he was younger. However, as he aged, the hallucinations became people and they weren’t nice. That’s where it started to get tough. The main thing, is to let him know that you believe him and are on his side.
Don’t tell him that they are not real. That can be a scary thought to him. You don’t need to tell him that they are real either. Just accept and support him.
My son is very strict about taking his medication every day, he knows that it helps him.
He is now is residential care and staying stable.
He’s only 24, early onset of schizophrenia started at 15

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It sounds very reasonable to want to know, how can we help if we dont. So sad. My son denies it.
When he was 12 he told me he saw these devils in the yard and they put their fingers over their mouths like Hush, Hush, dont tell anyone you see me. He said he has seem them since about 3 in the yard. Mostly from listening on utube to some schitzophrenics, everything they hear is negative, and debilitating, and scares them to act…eat, talk…it does seem satanic, like devils or spirits are torturing them. I havent heard one say they hear funny or silly or positive things.

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A young man who taught NAMI’s Peer to Peer, spoke to our Family to Family class and gave his “In Our Own Voice” presentation. He did tell us that some of his voices were quite friendly and one of the things he had worried about was taking meds and losing the friendly voices and sounds along with the unfriendly voices and sounds.

I know that my son enjoys talking with (one? some?) of his voices, its quite a different experience. It isn’t the muttering of darker psychosis, its conversational and seems to be enjoyed. The first time I saw it was years ago. My son was watching his favorite sport on tv when I, unbeknownst to him, entered the back of the living room. My son gave a delighted laugh and turned to the empty chair next to him and asked “how do you know these things?”

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Yes, but it is sad. Perhaps if they are really spirits (deceased or devils) that they would have happy ones so they will like it, like this and be afraid to loose, as they are now so lonely,
as they have isolated themselves. My son sometimes smiles at people in a car driving by as though he thinks they are having a telepathic conversation.

And he sometimes gets mad at me and says " what did you say?!!! " "when I said nothing, and he thinks I was mean to him.

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I thank you all for your replies.
My concern now is that my son is smoking cannabis again and keep watching horror films.
Each time he leaves the house by himself, my heart sinks and I am so anxious that he will hurt himself again.
Hopefully this will not happen while complying with the medication Clozapine.

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When he was younger, my son went through a period where he was interested in horror films and he self medicated with a good deal of cannabis. Now he is 40 years old, has stopped smoking cannabis and horror films really scare him.

Like you, I would worry each time he left the house. I actually envied the parents who said their adult children wouldn’t leave their bedrooms. To me that sounded much less worrisome.

My initial reaction to my son’s psychosis was “This is not my son”. I felt as though I had landed in some sort of horror movie in which my beloved son had been replaced by a far less functioning person. By using Dr Amador’s LEAP method when talking to my son, I was finally able to “see” my son through his psychosis. Maybe, for me, I needed to stop focusing on my son’s symptoms in order to see him. Please don’t think I am saying this is your experience, all of our experiences with our children are unique. I’m just trying to say that for me, there was a time when all I could see and think about was his psychosis and my son needed me to see and focus on him.

Clozapine works, it can be painfully slow to progress, but it does work.

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Hope, thank you so much for your support :heart:

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These could be my words! I too am obsessed with wanting to know. My son is about to turn 35. He was diagnosed in 2013 with paranoid sz. He’s never lived independently. Lives with his father. He’s always claimed he doesn’t hear voices and I know some do not and it’s not required for the diagnosis. I guess what I really want to know is whether he has any happiness. Is it so bad? He doesn’t open up. He’s got more prominent negative symptoms. He gets an injection once a month for the psychosis. I’ll never get over the terrible heartbreak of this devastating disease! You’re not being selfish. I don’t know any mother or father who don’t want to know these things. I’ve always just wanted my children to at least be happy. It’s so hard.

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U started a church and get people to pray…it can only help

My son’s diagnosis is also paranoid sz. I am now, three months later following my original post, accepting the situation as it is. My son will tell me when/if he wishes to. There is a slow but steady improvement. He has mentioned wanting to join the gym again and started revising for his driving theory test. I am grateful for working from home and being present every day for him. I don’t judge or pass comments. I just give him all my attention, love, patience and encourage him to get out of his bedroom. The Clozapine he is on seem to work. Even if sometimes I notice he is looking at something I can’t see, I just carry on as normal. He started smiling again…
Acceptance is key and our love will do the rest. I wish you well :heart:

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I know exactly what you’re going through. Just today my 28 year old son was walking through the house cussing at his voices and of course when I asked him what was going on he would say nothing. Eventually he did tell me the voices were saying he was a retard and he can’t work. It’s sad to know those kind of thoughts are being run through his head. He said it was his brother telling him that. His brother is 31 years old and he may of said that a day or two ago but not as my youngest was walking through the house cussing. Things that are said in his presence sticks with him. I think they come out in a mean manner at times. I try to be calm and as reasonable as I can be. It mostly helps. We’ve been going through this for almost 8 years. It’s hard but I just do what I need to. I’m retired so it’s better to be able to be with him.

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