How many of you have an unmedicated family member and what's happening today?

My daughter is not on any meds. she hates them and does not think she is sick. most of the time she is well enough for conversations. She doesn’t work and thinks she can, but she has no drive or ability to make decisions. She hears voices, but says she doesn’t, she confesses sometimes that she lies about hearing voices. She is a college graduate and can convince most people she is well, like the crisis assessment team. She just spent two weeks in the hospital after a month long of psychosis, she was in a very bad way and not functioning well at all, acting like a 5 year old. She said she should have been taken to a psychologist for help instead, and that was all she needed. She doesn’t accept her illness and thinks she is fine. The best thing that helps her is sarcosine, an amino acid, but she won’t take that since it is like admitting she is ill. She is now taking a product called Juvo, which is full of amino acids and it is preventing another break down. So far so good. It has only been a few weeks.

04/14/18
She quit taking the Juvo and is beginning to slide downward. This morning she was walking around the house in a towel only. This seems to be her current pattern of being in a towel most of the time. She doesn’t feel worthy of God to wear clothes is what she has said in the past.

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Hi Kellyshayne,

My son can convince professionals he is well also - really makes it difficult for us to convince law enforcement he has a serious brain disorder when they do show up.

In 2017 he managed to convince a psychiatrist experienced with schizophrenia that he actually had insight - mine hasn’t even been hospitalized but he has read up on the literature. Dr Amador says they learn how to work the hospital staff -mine learned how to “work” psychiatrists without being hospitalized. When he moved off of our property I discovered notes of mine regarding Amador in his home. He must have gone through my closet to find them.

At this point we believe he knows the “rules”, he knows to not threaten people. He tries to keep himself inside his place when he is having severe episodes.

When he drinks large amounts of caffeine he does better.

His original psychiatrist worked and worked to get him on meds, he won’t have anything to do with it. He gives different excuses rather than tell them he isn’t sick. Using Amador with bribes and ultimatums, he has tried APs twice. The first time for three days, the second time for one day. I really have my doubts that he even tried for one day last summer.

His original psychiatrist said it was not easy to stay a step ahead of my son’s thinking. He did get a step ahead of us last year.

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Getting guardianship is very difficult. At least it is here. I tried to get guardianship when my daughter was in the mental hospital for two weeks and was denied. I called the Crisis Assessment Team and they told me that after she has had two hospitalizations within a 3 year period, then I would win a case. It has been more than 3 years and that is because I had her on Profrontal, a amino acid formula that uses sarcosine as a main ingredient. It worked perfectly, but now she refuses to take it since it is like admitting she is ill.
It is definitely not fair having the sick one call the shots and even speaking with other free service groups, getting to guardianship is the goal so that they can get better.
Did you have an easy time obtaining guardianship?

I feel very fortunate my grandson was always med compliant. Took a couple of years to get him on thele right med, Clozapine, but it worked wonders and he is back to work, driving, making friends. I feel blessed. It’s been peaceful for almost 3 years

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Thank you for sharing part of your story. Its been my experience, that acceptance and healing come in waves for families of schizophrenics. Sometimes I feel like I’m doing so well with this, and other times I wonder how I will ever be OK again. I have been in shock with my sons behavior and I have frozen, just not knowing weather to stand or sit. The thing with this disease is, the shock keeps coming. Then acceptance and a new level of understanding.

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If, and it’s a big if, my daughter would go back to the hospital and re-begin the meds they gave her last time, she would be 100% or nearly so. However, per her, she is not ill, doesn’t hear voices, doesn’t need any type of doctor, and certainly doesn’t need meds or other supplements. (Although both meds and supplements worked to alleviate some symptoms when she would take them.) 4 forced hospitalizations, and she has learned how not to get hospitalized again. She has also learned how to live at home peacefully. She can do some part time cleaning work, yet has no real “life” outside of my home. We have decided to let her stay, to not force her to the hospital again, as long as she follows the rules. She basically has learned to retreat to her room when she feels she needs to talk (scream) at her “people”. We are in a wave of acceptance and healing. I still cry almost daily when I am alone, but I am coping. So is she.

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I hear you - I am constantly shocked even though he hasn’t done any thing new - except he no longer cuts his hair or shaves. Perhaps he will for his court date this Friday. He tends to do things last minute. Or perhaps he;ll just wear this stupid green and white snow hat and shorts.

When he drinks large amounts of caffeine he does better

ADHD is treated with stimulants - kind of like there’s a reverse effect on people who are ‘over-stimulated.’ Maybe it works similarly with schizophrenia since their minds are so active.

You are welcome. Acceptance and healing coming in waves is our experience as well. We know the shocks aren’t over, with each “new normal” comes that next level of understanding.

I think the trickiest part is rarely knowing what is the correct action on our part. The only time I felt 100% sure of something was when Jeb’s delusions about his father had reached such an extreme point that his psychiatrist felt alerting us was important. I wish I had understood earlier what it meant when people said how hardwired some of the delusions can become over the years.

Sorry for slow response, some non-scz urgent matters have popped up with other non-immediate family members. Its odd, these are serious matters but I feel a little numb emotionally. We spend so much of our emotions on the scz.

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My son is homeless, and he looks it. He’s convinced he’s Jesus Christ and the world is coming to an end and things are poison so he can’t eat I haven’t heard from him in almost a week and I’m very concerned.

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My heart is with you all.

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The one time my son tried meds for 3 days they really did work well.

I wish mine could live at home peacefully, but, he is out there, unmedicated, living on his own, buying groceries and working a couple of hours of week as a hired driver.

It will all work until his psychosis gets in the way and they fire him. He loves working, its sort of his odd scz thing.

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Mine is back on caffeine, I just found out when a Starbucks charge came up on my credit card. He has refused to drink coffee for months. Its a good sign that he is in a decent phase, he will continue drinking it until he decides, once again, its the problem.

One of my friends who taught told me that is the unofficial parental test for ADHD, giving them caffeine and seeing if it slows them down. I had never heard that before.

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@Knows3939 - Can you or do you want to put a missing person’s notice with the police? It’s not uncommon to think you are Jesus. It happens so much in Jerusalem they call it Jerusalem Syndrom, but you probably already know that. I hope he comes home soon.

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Thank you. And mine with you. This is so hard, scz, on everyone. I have met some homeless who like to be homeless. I hope your son is OK. I hope you are OK.

@hope You have been a caregiver for so long. I respect how strong you are. Your story helped me to better cope with my daughter’s illness, and to forgive myself my mistakes.

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I don’t know if this will help…we are 15 years into this and believe it or not, unmedicated for the past year. Things are actually going ok. At first it was brutal and he claimed he had no illness. A year later, he admits he has an illness, but refusing meds. He lives on his own and is rebuilding a few relationships with family members. Somedays I almost think, HEY we were wrong. Then something will set him off and the paranoia and disorganized thinking come on out to play. However, as long as we ask nothing from him, it goes well. When he comes to conclusions such as he needs to bathe when he sees others as a courtesy, perhaps cutting his hair will be more comfortable on warm days, or he can’t just be a taker but has to be a giver, he is delightful. But when we suggest the same, there is anger.
@hope referred to this a while back as a lightening of symptoms. It appears so. What the future holds we don’t know. No cure on the horizon. But not all doom and gloom either. Best wishes on your journey of the new normal.

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That is very kind of you, I am glad that we are able to help each other on the forum.

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I think this is what works best for my son as well. For some of our family members, its that “benign neglect” that @Hereandhere has written about that seems to work best.

I love the definition:
"an attitude or policy of noninterference or neglect of a situation, which may have a more beneficial effect than assuming responsibility; well intentioned neglect.

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Yes, of course you post helps. I am thankful for everyone who posts. I am gaining understanding. And, some hope.

I am closer to acceptance of my daughter, as she is, then I thought possible. If I don’t try to change her, don’t demand of her, it DOES go better. Seems weird to accept that she talks/laughs/yells alone in her room for hours, and rarely speaks to me more than a minute at a time. Seems weird to accept being lonely while living with my daughter for 2 years (ill); more lonely than when she lived on her own the prior 10 years (well). Yet, if I just see her a minute a day to give her dinner, it goes way, way better than the recent past when I daily nagged her about work, or doctors, or eating, or sleeping, or whatever I nagged her about, knocking on her door and demanding she speak to me.

Right now, It’s almost a peaceful existence in my house finally, except for when her loud speech awakens me at night from a sound sleep, and my heart starts beating so strongly I can’t return to sleep for hours. I haven’t quite gotten over being scared when weird behavior happens. I hate feeling scared. She’s never willingly hurt me, but still I am occasionally scared, and embarrassed by that about myself.

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It helped put things in perspective for me when I read something @hope wrote earlier. Our loved one and their illness are kind of like 2 different things. We care for our loved ones and we know they would never hurt us when they’re well, but we also know the illness can be unpredictable and it can rob our loved ones of the ability to think clearly. I think it’s natural and prudent to be cautious of the destructive potential we know the illness can have. I don’t think it’s something you should feel embarrassed about. For what it’s worth, I feel that way sometimes too.

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