Can a family member post in the forum where actual patients write and respond


#1

I wanted a response from a patient. They closed my thread. Can I write there or not? I don’t like the separation of the 2 parts of schizophrenia forum. My daughter does not acknowledge her illness, I need insights into this. I need to talk to people who acknowledge their condition. It’s important to me. My daughter lives alone thousands of miles away from us. She is now in a hospital picked up from a street by police.


#2

I actually posted there when I first got on in error. My question was How do I get my son to acknowledge he has an issue or something like that. I had several answers and did not get closed. One person said that he (my son) needs to understand that the lack of insight is part of the illness. I don’t mind the separation and at times it crosses over. My son may join the other forum and I don’t want to see his posts nor do I want him to read mine :slight_smile:


#3

The forums were together for a very long time and then separated for a bunch of reasons, mainly to give people who have schizophrenia diagnoses their own dedicated spaces.

There is some crossover, but not much. You can post there, but you will often be sent back here to ask the same questions.

Obviously, only people who know they have these diagnoses post on the “diagnosed” forum. I promise you that it is not a lack of acknowledgement, but that in your daughter’s reality, she truly does not have schizophrenia and does not believe for one second that an illness is the cause of her hospitalization.

My family member had this symptom of illness for many years and I benefited from reading “I Am Not Sick. I Don’t Need Help” by Dr. Xavier Amadour to understand this aspect of the illness. He also has Youtube videos.


#4

Common issue. I believe it’s 60% of those with a mental illness or sz don’t have insight. My son yesterday told the doctor he did not need meds and would take that to his grave. He was hospitalized, a few months back, and has court ordered meds for 3 months. He sees no difference in his behavior before and after meds. It is night and day (or morning). He’s better but not 100% at the moment. If you are new here - welcome. You will learn a lot here! Check out the videos and book that Hereandhere recommends.


#5

I also got some answers before my thread was closed. I want to understand this illness. My daughter was diagnosed 8 years ago, but she hid it from me. She did not communicate with me for several years, she developed a huge hate towards me. Then she had no money and started communicating after 6 years of no communication. I saw her journal. It’s was a complete nonsense, but she seemed ok at the same time of writing her journal. I am still wondering how could it be.


#6

Yup that’s the question. How could this be??? My smart, athletic son now isolates and has little interest any of his old interests (snowboarding, golfing, baseball, basketball - oh wait he likes playstation - he is 28!). He didn’t like me for quite a while - I was a terrible mother etc (still doesn’t much - but needs me to let him live with me). Basically he has delusional thoughts. Now diagnosed with disorganized thoughts and anxiety (which I think is easier for him to accept vs. sz). Has your daughter been diagnosed?


#7

Yes, she was diagnosed about 8 years ago, but she did not communicate with me for many years. Her husband did not either. Anyway when he told us I even did not believe him. So it came as a shock when it was confirmed by her doctor when she reached out to me from the hospital. The husband wants a divorce, he has their son, he left her a couple of years ago, but still officially married. My daughter lives alone, mostly in her car, she wants her old life back, her husband back, she does not want to sell their property and move to us. She had a very good job, but lost it and became so distressed that she stopped all communications again for 8 months. We had to hire a PI and then reported her missing and police found her. She says she is not sick, just depressed because she lost everything, her job, her husband, their property is not habitable now. And she might have lost her car as it was left in a public parking lot. We dont know that yet. She is been in the hospital for 2 months now.


#8

I would stick with that - That she is depressed. Then talk about her goals (getting job/communication with husband/kid) and in order to get to the goals the medication will help. Is she taking meds? I wouldn’t force her to accept that she has a Mental Illness - there are ways around that. Check out Dr. Xavier Amadour. His videos and books will show you how it would feel for your daughter to be told she is sick. Dr. Amadour had a brother with sz and for years and many hospitalizations he tried to get his brother to understand he was sick. Finally, he just listened to his brother (about hallucinations about his mother - she looked like a devil) and the Doc said that must have been scary. It’s a program called LEAP. Listen-Empathize-Agree-Partner. It worked for him and he finally got his brother to take the meds. Hang in there. It can be a rough ride.


#9

Regarding asking questions in other forums - I learned this by making the mistake myself. In general, I think the rule is, you are welcome to participate in any forum except for the one exclusively for people who are diagnosed. They would like to have the space for their own communication.


#10

There is a diagnosis called major depression with psychotic features. My son had that diagnosis for a few years.

And, they are giving low doses of anti-psychotics to people with depression along with anti-depressants.

So, yeah - go with that.


#11

I suggest you start researching how to handle and what your options could be, or at least know what you might expect, after 3 months when your son may stop taking medication (based on what you indicated his feelings are now about meds). The NAMI Family-to-Family class should be very helpful!


#12

My daughter says it’s not a clinical depression. It’s just the stress in her life. She told me that she does not have any hallucinations or voices, not once after she had her first psycosis years ago. She lived in her car because the house was inhabitable when her husband left. It’s hard for me to choose who to believe, her or her doctor. That’s why I refused to asked her doctor to stop her meds. She will get out of the hospital next week. Maybe I should ask for low dose of drugs, I don’t know her doses yet.


#13

Based on what you described as well as the hospital keeping her for two entire months, your daughter has a lot more going on than depression. The pscyh doctor should prescribe accordingly, but if she thinks she only has depression, it is unlikely she will take meds. So you are (she is) back at square one. The best advice I can give is learn everything you possible can. Check out NAMI.org. That is the absolute best step we took in this journey in order to have some idea of how to help our loved one and take care of ourselves in the process.


#14

Did you have something in mind? The doctor will likely extend the court order, which I would like to have happen for another few months. Not that I want to go through the hospital doors again but I am a bit curious to see what would happen if he did stop. I’m curious to know if it was drug induced (may or may not be). I’ve chatted with someone else here who’s son was on Invega for a year and then went off and it was like the sz never was. It would be like rolling dice. I do believe that my son will stop taking meds when he is no longer on court order. However, if he started the paranoia again then he may realize he may need meds.

Also - next nami meeting here is in Nov.! Not much activity out here surprisingly.


#15

I’ve known a lot of people who’ve done a lot of drugs. Heroin, crack, meth, you name it.
My own husband had drug-induced psychosis from morphine & fentanyl in the ICU after he came out of the coma they put him in to keep him on a ventilator after an accident.
No matter how bad they got on drugs, as soon as they straightened up, they went back to their old selves.

I also have been around more than a few people with mental health issues, some of which never drank or did any drugs.

I think drug-induced psychosis that lasts longer than the high is very rare. I do believe drugs can make a mental illness worse, however. And, that people with mental illnesses are more likely to abuse drugs in an effort to self-medicate.

Also, my son came out of two psychotic breaks without any medication at all. The first time, he was 15 and didn’t have another break until he was 17. Then he came out of it again and was fine until he was 18. So, I’ve tried the non-medication route. I’ve also seen what happens when he stops his medication.

I don’t recommend it. Each episode is worse, gets longer, and has less time between them.

If they treat your son like they treated mine once he was on anti-psychotics, they will medicate him for a couple years, then try a slow taper to see if his symptoms start to come back. He may be able to go to a lower dosage, he may be able to stop them completely, or it may not work at all.

There are a percentage of people who only have one psychotic break and recover completely.

If someone at the hospital had taken the time to explain things to us the first time he had a break, maybe we would have done something different and he’d have been one of those people. Instead, they scared the hell out of us, gave us no information, and when he begged us to take him home, we did. We were doing what we thought was right, but it was probably the biggest mistake we ever made.


#16

Realize that 50% of those with SZ have anosognosia and their brains tell them that they are not sick. It takes a lot of work (LEAP, for example) and likely professional help (such as a residential treatment program) to possibly bring about a change. Even if the person DOES realize all or in part that they have an illness, they still need to learn skills to help them manage the illness. Sometimes persons with MI have symptoms that level out or diminish over time (but that could be many, many years and it might never happen).


#17

I am wondering if there is a test to estimate the dopamine balance or any other objective test. I never heard my daughter to talk jiberish, she talks always normally. My personal experience with her illness is that she stops communication or hates me, she thought I tried to undermine her and she did not talk to me for 6 years. Her husband did not talk to me either until recently. He said it was on her request. But I saw her journal pages, her husband sent me recently a copy of 2 pages. It was jiberish. And the dates were 2014 and 2015. She visited us in those years and I had no idea she had sz then. 2014 was the first time we connected after 8 years of silence. I think the drugs help her as she would be mad at me that I did not agree to stop her meds, but she did not. She talked to me more tolerantly. My daughter never used drugs. Her psychosis started from an extreme stressful situation about 8 years ago thanks to the police. There was a burglary on their property by some drug addicted teens and my daughter and SIL detained them, but did not call police right away, turned out this was the biggest mistake of their lives. They were arrested as well as the burglars and there was investigation and criminal charges etc that stressed out my daughter so much that she became psychotic. And after that their whole life was destroyed. The case ruined them financially (lawyers) and my daughter could not work anymore. This was going on for 5 years. Later on when the charges were dismissed she was trying to get her job back and was almost there 99% but failed the last %. That was another unbearable stress that put her now in the hospital.


#18

My son never spoke jiberish either - you don’t have to have unorganized speech to have a severe mental illness.

And, extremely stressful situations can cause him to have a psychotic break as well.
Here’s how it goes for him. He feels stressed, his anxiety goes up, he starts having racing thoughts about the stressful situation that prevents him from sleeping.

He’s good with 48 hours of no sleep. Somewhere in the third day, he can recognize that he’s crossing a line, but no matter how hard he tries to sleep, he can’t. It’s like his adrenaline is stuck in overdrive.

On the fourth day, the paranoia sets in and he’s gone. At this point, he’s usually sure he’s 100% right and anyone who doesn’t agree with him is 100% wrong.

Until he sleeps nothing is better. In the beginning, sleep was enough. Now, it’s the hospital and medication changes. Thankfully, his current meds have been working well for a year and he’s regaining some insight.


#19

My son is 28 , he was delusional, he had phychosis and paranoia. He was diagnosed , when he was 26. I went through hell, seeing my son suffer and I could not help him. He is also in denial, he went through different medications. I told the doctor I want my son to try Haldol, it wasn’t easy because my son is of age. But I fought and fought , the doctor put him on Haldol and he is doing better, well better that he is not experiencing phychosis and delusions right now. I learned with my son, it takes a lot of patience. I bought the book " I am not sick, I don’t need help ". I just started reading it today. One of the members posted the name of the book on here. That hardest part is when our adult children are in denial. But this illness takes over their brain and their soul.


#20

Yes - that is correct.

A little “cross-pollination” of ideas is good - but we’ve had problems when people in one group “take over” conversations in the other group and it really chills the conversation sense of community. So - if you do post questions in the other - keep it infrequent and be considerate that you are a bit of an intruder in that group.