What was your watershed moment, when you realized what it meant to have a schizophrenic loved one?

Family
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I don’t mean when you were informed that they were schizophrenic. I mean an incident that made you realize the tragic implications of having a schizophrenic loved one; an incident that shocked or surprised you, and made you view them in a different light.

I was away at college when my mother called me and told me about Billy’s psychotic break. She explained that he went to a dorm party at Northwestern University, where our mutual friend Nick was studying. They did LSD and Billy freaked out. Evidently he got separated from Nick. He was so paranoid that he walked home (to 79th St! about 13 miles) and when he talked to my mother she knew something was wrong with him. He thought he was Hitler and the Jews were going to “get him” and that’s why he can’t take the train, because there’s “too many Jews” on the train.

I was shocked. But it didn’t really sink in just how profoundly he had changed. When I first saw him, he was heavily medicated and catatonic. This deeply shocked me but it still didn’t sink in. I had no concept of not being able to control your mind; I couldn’t conceive of such a thing.

After a few months, it was decided that Billy should visit me at school. He was “stabilized” on his meds and my parents needed a break. So he took the train downstate and stayed at my house. I really looked forward to it because I wanted to see the “old” Billy again.

He arrived on Friday and we had a party (as usual). Billy seemed OK and he was mingling with the guests and so I was relieved. My guard was down. I had to go to work in the morning so I went to bed while my girl friend stayed up with the guests.

The next morning I was at work when my boss came to me and said I had to come to the phone. He said my girl friend seemed real upset. I asked what was wrong and he said maybe our cat was sick. So I went home and there’s Billy and some of the guests from the night before. Billy obviously has his head crammed where the sun doesn’t shine and everybody looks really upset. I go in the other room with my girlfriend and she tells me “Billy tried to rape my friend last night.” I was so angry, so upset, so blindsided.

I confronted him in front of everybody (they’re all staring in disbelief). He just stood there, catatonic. I shaked him and smacked him around a little. I was beyond furious. Finally I got him to talk and got what was to become his stock answers for everything. “What do you care?” “It’s none of your business.” “Why are you so worried about it?” I asked him why he did it and he said “She was nice to me. She deserved it.” Then I said “I’m trying to think of a reason not to beat your ass bloody.” And he said “I’m your brother” (another of his stock excuses). The whole time his posture is rigid and his face expressionless, even when I was punching him in the face.

I was shocked, horrified, deeply hurt. My head was reeling trying to process what was happening.

And this was the moment when the light bulb went off in my head. I realized that Billy wasn’t just dopey and confused, a harmless idiot. I realized at that moment that I had a real liability on my hands.

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During my son’s first psychosis he did a lot of unbelievable things. Since we aren’t professionals and have never seen these things it’s hard to know what to make of what’s going on. Eventually, like your describe, you rule out everything else, like faking it, and realize it’s for real and our loved one is indeed sick and desperately needs help.

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My watershed moment was the first time I called the police on my own adult daughter during an argument over something that certainly didn’t need to be argued over, a stupid silly talk over a box in the middle of the floor. I couldn’t figure out WHY she was spouting silly (to me) things and protecting that box’s location in the middle of the floor. I reached for it, to move it out of my way, she pulled on the box, and my index finger, which was in the box, got dislocated and was pointing sideways. She wouldn’t stop spouting verbal garbage, I was screaming “look at my finger!” and I finally left her room and called the police. They didn’t see anything wrong with her, as by the time they arrived, she had calmed down. The police called an ambulance, and I got taken to the hospital to fix my finger and my VERY high blood pressure.

How could the police just leave her be with “it was an accident” as their reasoning? How could she just “go back to normal” in front of them, talking sanely, like nothing weird happened earlier? My poor sweet daughter was back, but where did the psychotic devil come from earlier?

When I was being treated, someone at the hospital asked me if she often “went psychotic on me?” and I realized that maybe that was it… those prior “moments” were also psychotic breaks, not “normal” misbehaving. And as the years went on, the psychosis got more frequent and much worse. And I had to keep calling the police on her, but the first time I called was the worst for me, as I was so confused as to what had happened to her.

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Yes, you don’t understand what is happening when your loved one first acts out. You can’t help but think they’re doing it just to hurt you. This incident made absolutely furious. I felt betrayed, disgraced beyond belief. I was deeply embarrassed. Billy wasn’t the slightest bit embarrassed. In fact, it was nothing to him and he couldn’t comprehend how his actions brought deep shame to the family. And he didn’t care either.

Being the person I am now, I would have talked to the girl and encouraged her to press charges. Had I known that this was just one of many crises caused by Billy’s behavior, I would have left Billy to rot in the criminal justice system. It would have saved a whole lot of heartache, as well as saved me a few hundred thousand dollars that I wasted on lawyers trying to keep him out of prison.

But from that point on I was completely overwhelmed by one crisis after another, for the next 30 years. I never had time to think, and never had any kind of help or useful advice from doctors.

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Our son Ben was given a medical discharge from the air force reserves and diagnosed with SZ affective disorder three years ago. We always knew there was something a little off with Ben but didnt realize it was SZ. So we got him through the VA system, got his VA disability and his SSI and he was placed on meds. I have been in a very stressful job for a number of years and we had just moved into our new home out in the Indiana corn fields so i was not concentrating on Ben’s illness. My wife does not work, she recieves a government disability so i left the management of our son on her as i could not handle Ben and my career at the same time. This has caused my wife to go on anxiety meds for past two years and she sees a psychiatrist twice a month just due to having to deal with Ben. He was on meds for a year then refused to continue. Skip forward two years now, off medications, and a rollercoaster of events with him, three calls to the sheriffs department. At beginning of October my wife had went up to Wisconsin to visit her dad and aunt so i was left working from home. Ben had been in a bad psychosis, not slept for days, very angry for a long time and all the other heavy psychosis things they encounter. So one day I’m walking out to my garage and i see Ben pulling out of the driveway in his truck, he proceeds to drive his truck into our Halloween display which had some metal ornamentation and other things and a hay trolley and couple wheel barrels with flowers in them. He smashes into them, backs up then drives off. That is when it hit me! I freaked out, called the sheriffs department just so i could get it on record. I was so freaked out i was shaking. Explained everything to the deputy’s and they kept an eye out for Bens truck. He finally came home about 12 hours later. Had to call my wife and ask her to come home as i just could not handle the situation. The next day i asked him why he smashed into the display and he said the display was satanic. That was two months ago and ever since that day i have not been the same. Everyday my anxiety is maxed out constantly thinking about Ben and his illness. Two and a half weeks ago he had a severe psychotic break due to ingesting a bag of THC gummies. He came into our bedroom at 1am screaming that gamma rays were coming out of his eyes and ears. We rushed him to the hospital, convinced him to sign admission forms and they admitted him. A week prior to that we had just bought him a 2013 camry, he pulled out in front of a large truck that T boned him and put him in the hospital over night. He is lucky he was not seriously injured. Said he was trying to get away from evil spirits and did not see the truck. He we was released from the hospital psyc ward last Wednesday but while in the hospital it was a struggle to get him on meds and he refused group therapy. He has been taking his meds since out of hopsital but it is a daily struggle. I have been frantically reading and posting things on this forum. My wife and i have been to four area NAMI group meetings so far. After listening to some of the stories at these meetings and reading a ton of posts i can see our situation with Ben is not as bad as so many others out there but is still scares the hell out of me daily. How to get him to stay on meds which is a daily struggle what his and OUR future looks like and so many other things. I’m trying to gauge our situation with others that have adult children with mental illness. He has not yet been physical with us, he hasn’t broken any laws to get him arrested. So we are thankful for that! At least if Ben does take off and not come home he has money and a car to support himself.

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The thought of them driving while hallucinating is frightening. I lost a lot of sleep thinking about that.

Billy was a menace on the road. Plus he’d drive a car with serious malfunctions (like no brakes) and not think twice about it.

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The daily struggle is bad, but there’s a good chance there is light at the end of the tunnel: recovery from schizophrenia

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I know just the last few months when I am with my daughter and she is, mentally lost and mean and angry. All I think is do I want this to be the rest of my life. To go through this almost everyday. She doesn’t see it but she is destroying her life as well as mine. And I am not being selfish but I can’t even talk to her nothing she says makes sense and it just goes around and around in circles. I know others have it worse she does have moments of clarity and it may last for a day or two. But then back to the same, she lives in a horrible nightmare with demons attacking and saying she is being raped all the time. but yet she will turn around and say there is nothing wrong with her and she won’t take meds for anyone. Common sense is out the door though even on a good day. She has destroyed the house and I can’t keep up with it. And I can’t ask for help because I am honestly scared she might attack someone, and not even knowing if the are real or deamon. I am just ranting I could go on the hours. it helps a little though.

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ttt1, i feel you for sure! Ben is a handful. He has his moments but can go full ballistic in the blink of an eye. He is so upset with the VA and them managing his monthly VA disability check. He thinks he should have control over his money, which i agree he should, but the VA has said if you want a monthly check the rest of your life then we will manage your money. My wife did have control of his VA check but after repeated accusations from Ben telling her that we were stealing his money we gave control over to the VA. He even called the Sheriffs department on use back in July and accuses us of stealing his money. We weren’t, he was spending it faster than he could get it.

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Mine’s a little different, because my brother was diagnosed with bipolar disorder at the time, although lately he’s tipping into seemingly schizoaffective symptoms.

I was 17 and my sister 15 and our parents were on the other coast visiting our undiagnosed brother. We got a call from the mental hospital that we needed to go to his apartment and rescue his dog. During a manic episode, he’d decided the dog was hot and proceeded to give the dog a haircut with a nasty looking serrated knife.

He was a husky mix, so there were tufts of his hair all over the flooded basement apartment which was in complete disarray. He had five or six raw wounds on his flanks which appeared to have been treated with hydrogen peroxide. We surveyed the wreckage and minds sufficiently blown by the chaos, we put the dog in his kennel and loaded it into the family station wagon. It poured down rain on the trip back and the dog was prone to car sickness and repeatedly puked in his kennel during the drive. It was miserable.

My sister stayed with friends, and I was left alone to care for the dog. A day or two passed, and I returned from summer practice to find the dog had slipped his collar and ran away during a thunderstorm— never to be seen again. Many periodic recovery efforts later, it’s hard not to feel the dog had the right idea.

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Yes indeedy. There is a sort of epiphany, I think, when we come to a realization. My son has schizophrenia, paranoid type, with a typical onset? He was 25 and we knew by now, he’d changed and was just sort of confused and doing puzzling things, for several months, until the thing that brought him to the attention of authorities (the police) who thankfully recognized this was a 10-code mental subject :cry::cry: and before I knew what happened, he was being taken to a psychiatric hospital! This is a topic so full of emotion, because on the one hand, he needs help so this has to be good. On the other hand, it’s sad and terrible knowing your loved one was brought by police in handcuffs but anyway it’s traumatic for everyone who loves this person.

My son has the genetics and he smoked pot as a teenager. If there was any other obvious culprit, I don’t know. He had a wonderful loving normal childhood, but …he was shy and I worried too much. Was diagnosed ADHD without hyperactivity in grade school. So the psychiatrist calls me to inform me of his diagnosis. I’m not stunned or even all that surprised, because of our family history, so I wasn’t completely ignorant, just not well informed at all about schizophrenia. It wasn’t until I started wondering what is happening? Is he ever going to do anything? He hasn’t. That was in 2013, when I realized how disabling this illness is! And I suddenly became profoundly sad! That’s when I realized this is a lifetime.

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Mine came after five years of a very frustrating, on-again-mainly-off again relationship. When I first met him, I found his eccentric behavior charming and I assumed his bouts of withdrawal were due to shyness or insecurity. We were both about 20. He moved away that same year. I went to visit him about a year later; his mother told me he had spent the last weeks in his room and she hoped I could persuade him to come out. When he did, I saw how he had neglected himself. I assumed he was depressed since he had not wanted to move in the first place. But my presence seemed to motivate him to clean up and engage with the world again. We had many weeks of fun and socializing with friends like old times. But I obviously missed a lot of things by not seeing him day to day like his family did.

Then a few years passed, during which we took turns visiting each other when we could. But then I didn’t hear from him for a full year, and when he finally appeared, unannounced, I saw that he had changed a lot physically. He was 25 by then. He barely acknowledged me. We were at a party with other friends, and he was preoccupied by telling us how people were following him and the authorities were spying on him. That’s when I gave up any hope of a relationship with him because even though I didn’t know what was afflicting him, I knew it wasn’t anything I was prepared to take on, especially since I was still angry at him for neglecting me. But I never forgot him. Only much later did I begin to understand what kind of disorder he had, and it took another decade before I had the courage to seek him out again. I think I am the only person from his past who is in touch with him now, but that contact is only by message or phone.

When we reestablished contact, he was like a whirlwind of pent-up need to talk, which we did almost nonstop over the course of about a week. He recounted the awful details of the years when he was out of touch, ranting about poisonous meds, positing various theories about why his life was so terrible, hinting at but never actually saying that he has SZ. Once he had vented everything, he withdrew again for many months. He is unmedicated and lives alone, no contact to the little family he has left, with hired help to take care of his basic needs. I don’t think he ever had a run-in with the law. I think he trusts me, and I know he reads my messages, but I only hear from him when there is some kind of crisis going on in his life. The rare times we talk, when he seems to have some insight, he continues to lament his “wasted life.”

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There’s been numerous moments of realization of the degree of illness, but not all of them Were moments I realized the schizo affective disorder because of the late diagnosis and there’s only ever been 1 hospital that recognized it .
My sibling had an ADD diagnosis at around 13 and started using various drugs soon after that . He went through many rehab and probation programs as an early teen .
Its hard for me to pin point exactly when he may have started expierencing schizo symptoms. He has always maintained that he doesn’t hear voices. He could have been self medicating at that age because of what he felt.
2 times really stand out ,
1st he must of been about 16 and ended up taking almost 100 hits of acid he didn’t think it was working and drank the vile. Over the next few days he tripped out we had the same circle of friends my (sibling was outgoing and popular as a teen ) our friends started to mention he was acting really strange If I remember he was still keeping up appearance in front of our parents though.
Until 1 day I had just come home from work my parents looked worried and I was like what’s going on? I could hear walking on the ceiling I asked ,they said he was in the crawl space of the attic , he had been talking all day of an MTV VJ who had been communicating with him through the tv all day the cops were on the way and if I knew of anything he had done . I told them about the Lsd , the cops came it was traumatic to see him taken they did take him to a behavioral in the next city . It seemed like he was there over a month my friends and I would visit he seemed fairly adjusted and would usually make friends where he was he talked of the actor Kevin Bacon being there and pointed him out it was not him.
It was scary and I wondered if he would ever return to us , he did and things went back to the same I think they just deemed it psychosis from lsd at that time.
There were many periods of psychosis and hospitalization over the years no diagnosis yet except addiction , possible bi polar and Adhd .
In his early 30s he was living in a camper at an elderly neighbors house whom he was friends with after my parents had decided to move he had been living with them . I was in the same state he had seemed to be well and was maintaining on his own fairly well . Until one day at work I was receiving quite a few voicemails religious jumble from him he didn’t sound well , I decided to go to his place after work when I went in he was in a state he had a large butcher knife and was sitting on his bed I said what’s been going on are you ok ? We talked for a while from what I remember he talked about some relatives who had passed on . And some other people whom he had thought may be messing with him ( most likely delusional )I gave him a hug he was heavily sobbing and then calmed a bit I said its okay to have sad days do you want to come stay at my place for the night ? You won’t be alone ,
He declined I decided to leave and told him I would call him when I got home . which I did I talked with him for a while and made plans to pick up breakfast sandwiches and visit before work in the am . seemed liked he had calmed and would make it through the night . I had seriously considered a welfare check but had decided against it as to not raise paranoia ( wrong decision) .
The next day I got our breakfast was on the Way to his place my Parents called me from out state and told me the old neighbor had contacted them. my sibling had been picked up running down the street nude with the butchers knife. He was at such and such hospital, I called into work got to the hospital he was in Er they got him sedated and checked in I stayed with him while he slept .
They moved him to a different inpatient unit at a different hospital same day I followed and stayed with until visiting was up . He was in that unit maybe 2 wks they gave the diagnosis of schizo affective bi polar type 2.
I began reading everything I could on sz things started to make sense. Aha
He came out un medicated and remains un medicated there have been many more well and unwell times . as I still am learning even more about the disease I am still finding aha moments.
Thanks for the space.

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The money troubles is a common theme. People with Sz usually do not understand how to handle their money. My son receives social security disability and Medicare. He also spends every bit of it very quickly and then calls everyone over and over for money and or things he needs, like food! He lives with his dad, and even though he takes a monthly injectable antipsychotic, he is always angry and aggressive to him, his father who has provided him a home so he won’t be homeless.

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For me it was that moment in Family to Family when they said it could take years to make a small change. Like the others in the class, I was poised, pen in hand, to take the notes that would solve the problem that our son’s life had become. Stricken, I just put the pen down on the desk.

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Hope, have you ever seen the film “Take these broken wings” by Daniel Mackler?

Daniel is a former therapist who advocates treating SZ with therapy and love rather than meds. I was very open to his message early on, given that my friend remains unmedicated. But over time I realized that probably the vast majority of SZ cases could not improve without meds. Still, there are a couple of narratives in the film that basically says the same thing you heard in Family to Family: therapists encountering severe cases of SZ who eventually were able to elicit a faint response from the patient, but only after sitting with them over several years. Just being present, not even talking much. They then made steady but not linear progress thereafter. The patients eventually went on to have normal lives. Such films may indeed document actual cases, and for sure they do exist. But to imply that anyone with SZ can expect this kind of non-med “cure” is a little naive, as I’ve learned since. Nevertheless, any small improvement or positive change in our loved ones is like water for the very thirsty, isn’t it?

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Hi Kwillkat, I have not seen “Take These Broken Wings”, I will watch it today, thanks so much.

Yes, the small improvements are huge and well worth the effort. While Mike resented deeply the garage apartment we built for him, he needed those couple of years in a supportive environment to learn to manage his every day symptoms.

In the early, early years, the bad periods were rare, schizophrenia is cyclical, Mike would cycle with far more good days than bad days. As he neared his late 20’s, early 30’s, like so many, his scz’s worsening peaked. The occasional days where he dealt with constant psychosis became daily, a way of life. The total breaks came more frequently, oddly enough often in cycle with full closer moons - there still isn’t an explanation for that coincidence.

We learned what triggered him and eventually how to support what he needed to cope. Mike desperately loved working, that had to be part of the equation. At first no one knows what will help, our family members don’t know and we don’t know. It is a journey.

I am sure Mike’s life would have been easier on meds. I tried to explain it to a friend whose wife with bipolar was just given an anti-psychotic. The meds don’t cure the issue, but they can provide some relief. I know they are hoping to slow his wife’s brain down - cool it off a bit, so to speak.

As we always say, you didn’t cause it, you can’t control it and you can’t cure it - but you can figure a way to cope. And when you get there, coping is everything.

Like water for the very thirsty, yes indeed.

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My watershed moment is a strange one. Christmas Eve. He was angry bc his sisters wouldn’t do what he wanted-i think he wanted to play a board game. He has always been fixated on his sisters and his perceived neglect by them. It is less now, but has never completely gone away. They wanted to zone out and watch a Christmas movie. I followed him into the garage to appease him. I think he was wrapping a present. He started talking jibberish. Klingon. Word salad. I turned to STONE right there in the middle of the garage. There was NO rationalizing what I heard. Something was very, very wrong. A million other stories, but that one haunts me.

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I did watch the film. Sadly, one of the earliest things I learned with Mike, was that love was not going to cure his schizophrenia. Cognitive Behavior Therapy helped Mike find his way forward when he was living in our guesthouse. His first success was being able to grocery shop again. His psychiatrist and his therapist worked together, we were fortunate, Mike found them to be helpful and worked the therapy.

One of the things that has puzzled me was his late stage cancer brain mets. The first tumor that caused trouble in his brain affected his speech process. He knew his name, but could not say his name, he knew his birthdate, but could not say it. They treated him with a drug to reduce the brain swelling immediately and they gave him radiation to shrink the tumor that was causing the swelling. His speech returned quickly - within 24 hours on dexamethasone. His cancer was quite aggressive, the brain mets began causing issues again less than a month after radiation had ended.

The brain tumor that caused the speech issue never did return. The tumors that developed post radiation caused short term memory issues and hallucinations. The hallucinations were quite scary for him. He tried to take pictures of them with his iPhone.

The hallucinations were caused by pressure on his brain from the tumors. He was paranoid about those hallucinations (pointed to a blank wall and said there were people there) and said they were trying to kill him. His behavior with the brain mets appeared to be similar to his psychotic episodes. The inpatient hospice nurses and doctors did not know Mike had schizophrenia. They treated his hallucinations with Haldol.

You have to wonder what we are missing here science wise.