Family and Caregiver Schizophrenia Discussion Forum

Hello all I'm new here and just trying to say things me and my hubby are experiencing with our schitzoaffective son. Think it's time to chat with those who can relate

It’s been a year or so since my kiddo has been diagnosed with Schitzoaffective. The delusions dont seem to stop. He is medicated and has a team looking out for him so I am grateful. We are so new to this though. We look after him non stop. Leaving him alone doesnt feel right. His mind doesnt set to common sense sometimes like over filling the tub or leaving gas stove on. His delusions relate to money alot. His nationality changes sometimes. The conversations I hear are completely different then what he hears and often he is some kind of high authority person. He very kind and would give you his imagined trillions. Why do they talk of clones? My son has squeezed my arm and said I am a clone. That was a while back but it resurfaced the other day. Hes addicted to energy drinks and cancer sticks. If he doesnt get he goes on to the streets to get. (My neighborhood is dangerous). Anybody out here got similar life going on how do you cope? Theres so much to say so much feeling. We try to keep humor… how do I let an adult be an adult but have to start over with basics of life 1st.

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It’s been 6 years since my son’s first psychotic episode and things are much better. I have educated myself and my son finally has the right medicine. I hope this group gives you a place to learn and vent. I read a lot of posts before I posted. Know that we all love someone who suffers.

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If the medication isn’t working, it may be worthwhile asking the psychiatrist to assess if a change is needed, explaining the symptoms you have observed. Things get better once the medication starts working. It may take some time.

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My daughter is psychotic and having delusions about clones, has told me I’m a clone, and sometimes thinks she is a Maori man. I think the clone thing is influenced by media tropes. The Clone Wars, Orphan Black, and The Bad Batch are all shows that my daughter has loved that feature clones. I can think of at least 7 more books and movies off the top of my head that I’ve enjoyed, and probably our kids have seen some of those as well. (Plus I have a friend who is a geneticist and clones mice for his research.) It wouldn’t surprise me if other sufferers have delusions about robots or mutants, as those are common in fiction right now.

I am in a similar situation too: my daughter has a team, she is medicated, but she is still deep in her delusions. I have commissuration to offer rather than advice. The situation is deeply frustrating, especially the lack of progress or support.

Last night we went to a walk-in clinic, sent by her psychiatrist, and they said she was too acute to be admitted at their facility, so they sent her home. I think we’ll be okay, but I was so angry with a system that has so few tools to offer.

I’ll be watching this thread for any advice you get, as I’m sure it will help us too.

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This form of delusion has a name, Capgras Syndrome. It’s present in some dementia patients, and in people on the SZ spectrum. Originally it involved imposters rather than clones, but delusions tend to be culturally rooted so when animal clones exist, and human clones are a troupe of science fiction and fantasy, delusions about clones come along for the ride.

I experienced Capgras Syndrome fleetingly just before I was hospitalized for the first and last time. My mother called me when I was in distress and quite florid, and was trying to convince me to come home. I dismissed the call as being pieced together out of recordings and told her I didn’t want to talk to a ghost. In my mind it was a logical inconsistency, because the inciting incident that brought me to this point included the delusion that she’d been killed. From what I’ve read about Capgras Syndrome (which is mostly from the dementia caregivers perspective) you’re supposed to play along and not invalidate the experience. This is obviously tricky if you’re the “imposter” and thus shouldn’t be trusted.

In my case, my mother drove to where I was and spoke to me, which shattered the “pieced out of recordings” narrative. By then, the police had arrived and I said I was afraid of her and didn’t want to speak with her. I’m sure it was quite heartbreaking for her, but after a trip to the hospital and some sleep I was able to reconcile that I was mistaken. This isn’t to say that this and related delusions vanished in a puff of smoke or a bottle of neuroleptics, but through various therapies as was able to bring these distractions to the background and focus on getting on with my life.

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Welcome to the forum @Butterflyinthewind1. I am so glad your son is compliant with meds

Have you had a chance to take NAMI’s Family to Family course? Personally, maintaining a sense of humor has been key for me. I (-eventually- using LEAP communications) began to understand that my son was motivated to do things that he wanted to do to move forward with his life. Supporting him in those efforts became my job and he has progressed from there. He steers the boat - sometimes it feels like his dad and I are the boat and the oars and the water that keeps him afloat. As he has learned to cope with his symptoms, over the years, he has been able to do more for himself. There was a time when I would have said we were the rowers as well, but he gradually began rowing himself.

Ovens were a sticking point for my son, he would put things in the oven and totally forget about them. We built a garage apartment for him to give him some space while he learned to cope (and so we could have some space while we learned to cope;) The apartment’s kitchen does NOT have an oven - no way.

The people here on this forum basically kept my hope up, gave me directions to move forward myself and helped me help my son. You will see various suggestions on the forum, its nice to get a wide variety of responses. Keep an open mind, some won’t apply to your situation, I found that the ones that did apply to my situation made all the difference in restoring our lives.

How old is your son?

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Thank you for responding :slight_smile: I did just get a chance to talk to his team with concerns and questions just recently. Some of his team is new on the scene so it will take time. I’m just impatient and hopeful! The invega is doing pretty good only when it starts getting to the new time of injection things get pretty hyped. Also this group including you are all ready helping. Just knowing someone cares or understands

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Thanks! Nope this is my very 1st support group! I’ll have to look in to the coarse! Humor love and God keep us going :slight_smile: will they teach LEAP? I’ve not heard of this! I’ve been reading so much from this group and already I feel comfort and gaining knowledge to help my son. He is 20 yrs. I really like what you have to say you empower your son!! I hope we will do the same.

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Wow thank you for sharing your story and knowlege! I hope you continue on a healthy route I know as parents we feel deeply when you all go through delusions so love to your mom but you guys must go through so much and getting your perspective is awesome for me.

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That’s good to hear. I find that sustaining positive emotion and pulling out of negative thoughts are just as effective when medication isn’t working sufficiently. Hope for the best and wish you a better new year ahead.

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Hang in there Mommet! I hope your daughters team listens to you and helps you and your daughter! I’ve worked and didnt have many personal time with the team till recent and they were happy to sit with me. My husband usually goes and knows the team well and trys to get our concerns in but this time I was home and my son and hubby were out and missed an at home visit so his case manager had plenty of time to hear me and I’m grateful because it was her suggestion. But yea it’s hard and I didnt have this group to read but she recommended me to try a group so here I am. The team has a few new members so they need time to really know him. Hopefully your daughter has given permission for you to know somethings and for you to speak. We are counting blessing my son has done so. I will be sure to share any tools. Because that was something I asked for at that house visit.

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I’ve been recovered for about 35 years with a professional career. My diagnosis is SZA— the same as your son. Perhaps a milder case, exceptional care, hard work, luck or some combination of these explain my recovery—I’m honestly not sure. It may be helpful to search my post history if you want to learn more of my history.

My take on delusions of grandeur, exceptionalism, importance or fame is it’s a form of compensating for ego blows you take as a result of your illness. You can’t do the things that you’ve done before, and people don’t believe the things you say or contradict you, or dismiss you or call you crazy, so you imagine yourself as someone important or wealthy or special in some way, to reconcile or reclaim self-worth and status. In recovery I dealt with these sorts of delusions by congratulating myself for thinking enough of myself to believe that I could be a ‘star’, or a ‘genius’ that would go to Australia and find a cure for AIDS, or play a perfect round of Jeopardy and give the money away or break a cycle of abuse (these are samples of grandiose delusions I had during my first year of illness). And in knowing I thought that much of myself, my therapist and I found ways to “shrink” some of these grandiose ideas down to manageable size. (She said that’s why they call analysts “shrinks” BTW)

My recovery is not typical, and I understand talk therapy is not for everyone, but through this forum I attempt to explain some of the thoughts and feelings of other diagnosed people who struggle to articulate them.

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Its very sad, and depressing. I took anti depressants do deal with, and son was perturbed I seemed to happy for the situaion. Im now off and depressed. It seems my son doesnt grow up. He occupies himself on computer, which I guess so does alot of America, but it is sad.
I wish there were soe groups of same age people with same diagnosis, that could get together.

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Apparently the meds is not working…
The team should realize this and try something else.

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Hello, My daughter was diagnose in April of 21, after several drugs and visits to the hospital she is doing better on Invega, the doctors at the hospital kept upping her dosage which I didn’t like because of the side effects. But she is doing better now. She still hears the voices she says they are not so mean anymore. And the delusions are gone. Hopefully you are with a good group of people that will listen to all of you. Is your son willing to try different medications. That was my daughter’s problem as soon as she would get out of the hospital she would stop taking them and each time she went through this the episodes would get worse. Now she sometimes will admit their was something wrong. It doesn’t sound like these meds are right for him but its so scary trying something new. But I believe your going to have to continue the search. Hey keep your head up and laugh when you can. My daughter also did the clone thing with me and the cat. I think she couldn’t believe I would be calling the police on her and putting her in the hospital so she thought, I wasn’t her mother and the cat was afraid of her so it could not be her kitty. Just a thought, the more I disagreed the worse it got, I was either an alien or a demon.

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This is my very first support group. This is my very first post. I am struggling with my 26-year-old son who was diagnosed schizophrenic almost 4 years ago. We live in a rural area that has no mental health support groups. He is delusional frequently. He will not talk to me about what is going on in his head. But I have noticed when he starts having a fascination with rocks collecting them thinking they are meteors and knives that he’s in a really bad place. I had to call the police on him for the first time because he was destroying property with a shovel breaking it over my shed. He is homeless and is in jail at the moment and I’m trying so hard to find resources to help me help him because everyone says since he is an adult I can’t control what he does and that he more or less has a right to be the way he is. I don’t know anything about guardianship or if this is something that is even attainable. He almost froze to death from hypothermia 9 days ago. He called me at 3:00 a.m. and told me that he was freezing like a dog and he was hiding on my property. Thank you for listening

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I’m sorry it’s been difficult! :frowning: Glad you are reaching out it helps to see others going through similar things and sometimes a little understanding or advice could get you through another day. Little things trigger my son quick…we are always on our toes. Not much relaxation ever lol. Thank goodness my son hasn’t been hospitalized since 1 year but I tell you we’ve battled to keep him out of trouble and off suicide. I think it’s the manic side cause hes impulsive or maybe that’s just how it is but we are tired so dang tired. But we have help…wish I could advise you on the help part. We just were offered to reach out to my sons program hes in. I guess because hes newly diagnosed and my kid was willing. Hope all gets smoother for you. Here to listen

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