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

He was discharged yesterday. We were finally able to talk to a nurse who told us that he was on meds and told her that he lost a good job going off his meds last time. So maybe it was a positive time in the hospital. She told him that both his father and I are here to help. I’ve left him texts and phone messages that if he needs us we are here. If we have anything - it’s hope.

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Somehow stumbled on your posts and this is like reading everything I’m going through.

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In my opinion you did not get very good assistance. Perhaps they were concerned there was an immediate threat of suicide? Some localities have better training than others, and sometimes it is the luck of the draw as to who responds. We’d love to learn what happened after you contacted the Mental Health Evaluation Team.

I encourage you to get in touch with NAMI (NAMI.org) and utilize their information and supports. You do not have to be actual “family” to participate as a “family member” in their programs. NAMI programs are offered at no cost. This is a lot of work, especially for a friend, but what you learn may prove invaluable not only to your friend, but to your own life down the road. We need more people who have an appreciation for and understand the challenges of helping persons with Serious Mental Illness. There are other good educational materials to read referenced above. You can’t know what you don’t know, so learning all you can is important.

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My daughter has suffered from schizophrenia for 21 years. She is 41. We forced her into hospital three years ago for 3 months, that was the only time she was medicated and she stayed on the meds for about 8 months afterwards. She picked up some weight and was cleaner during that time. She was desperately unhappy in the psych wards and the whole family suffered. In the end we helped her break out when they wanted to start her on lithium and more shock treatments. We will never use force against her again. Now she lives with her sister, she doesn’t speak or wash and her toilet habits are interesting to say this least. She smells terrible. She is dreadfully thin but eats quite a lot. She makes shopping lists for her sister. She smiles at us and we get a kiss from time to time, but little other communication. Most of the time she is curled up in her chair with her eyes closed presumably in her own world.

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I am in almost the exact situation. The only difference is our son lives with us.

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Welcome to the forum @Frances and @LorieShane! My son is 39 now and continues to live unmedicated.

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My son is 23, and started to have paranoid thoughts and to hear things 3 years ago. At that moment my wife and I were devastated and started searching for all possible alternatives and treatments. We came across studies showing the relationship between Schizophrenia and Vitamin D. Coincidentally we were familiar with a treatment called Coimbra Protocol specialized in treating auto-imune diseases with very high doses of vitamin D (we have a relative that has been extremely successful in treating her Multiple Sclerosis with this protocol for the last 20 years). As our reading pointed out to the auto-immune aspect of schizophrenia we made the risky decision to try this protocol on our son instead of using conventional anti-psychosis medicine. To make a long story short, he has been on this treatment for the last 3 years without presenting positive (psychosis) symptoms although the negative (cognitive) symptoms remained the same. His vitamin D was extremely low and inflammation serum indicators high when he started the treatment and they are all normal now. I don’t know what the future holds and if this treatment will produce results for the rest of his life, and we are very curious to hear about any other people who chose this alternative and could share the experience. Thank You.

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We’re in the same predicament, our son just came back from the state hospital after not seeing him for a year and he already missed the first appointment with the nurse psychiatrist, he just took the 2 shot after being discharged and he’s already very determined not to take the shots anymore!!!
We know what to expect but definitely it’s difficult bc we know the meds work.
Eventually they helped us out, they kept him in jail for his own safety and he was sent to the State Hospital. It’s draining!!!

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Welcome to the forum rosyd. I am so sorry that your son has already missed an appointment and already plans to go off the shots. Dr Amador who wrote “I’m Not Sick, I Don’t Need Help” has really helped us get through difficult times with our son. Are you already familiar with the symptom anosognosia?

Its so terribly disappointing when they stop meds, especially when you could see the meds were working for him.

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Hi Frances,
Can you elaborate on your daughter’s interesting toilet habits? My brother who is 55 years old,
does not flush the toilet even after pooping and he continues to use the toilet as it literally fills up with shit! The smell does not seem to bother him, nor the toilet filled with poop!
I have been searching for others that have a similar situation to try to understand what I can possibly do in this terrible situation…

That’s interesting Lorie - doctors gave me the impression Milly’s symptoms were unusual. In fact one psychiatrist wasn’t even sure of diagnosis.

Our daughter seldom uses the toilet at all, and when she does seldom flushes. As she is in her sisters apartment there is someone else to flush or clean up after occasionally terrible messes due to loose bowels.
She urinates into a container in her room which she empties into the kitchen sink :roll_eyes: and poohs in her room too, usually putting the turds into a plastic bag which she ties up and throws in the rubbish.
Recently she left 3 giant turds that looked too big to pass, maybe amalgamations of many? Sculptures? On the veranda floor outside her room. :tired_face: my husband yelled at her and it hasn’t reoccurred.
She never changes or washes her clothes so her jeans are often soiled and she stinks.
I tried giving her a camping toilet that uses a plastic bag but she ignores it.
Her sister and brother-in-law just live with it and use a lot of room spray🤣. She is 40.
Are you not able to get to your brother’s loo regularly to flush it?

You are the first person that is experiencing similar things. My father died 2.5 years ago and that is when my brother’s toileting habits changed for the worse. He was flushing the toilet most of the time.
maybe 3 times a year his toilet was clogged because he put things in there that did not belong ( like cups and plates!) I know that he knows how to flush a toilet and I do not understand why this would change. Do you think it is the voices that tell him not to flush?
I love in CT. and my brother lives in NY near my mom. I have an aide for my mom . The aide goes to my brother’s apartment once a week to deal with his toilet. I really am at my wits end because this is unsustainable. Once my mother dies, he will have no one to take care of this issue. My moms aide is an angel and literally scoops all the poop in the toilet out and puts it in the garbage. I doubt anyone else would do that. I cannot believe your daughter is ok with her sister living with her in that kind of situation! I was thinking of getting a toilet that has an auto flush, but not sure how expensive that is. Have you met others that have this toilet issue with their family members? what is this all about?

I’m not sure what it’s about - but clearly schizophrenics feel differently about their waste matter than we. My sister read somewhere about a woman who painted the walls with her pooh. Maybe they think it’s a valuable production of their body?

I own the apartment and my daughter gets a very low rent in exchange - also Milly, the schizophrenic one keeps to herself in her room which is off at the side. And my other daughter has her own ensuite.

Wouldn’t your mom’s aide be willing to continue after she dies? If not I’m sure someone will do it for pay.

I haven’t met others with the issue but they are probably medicated to the hilt and in homes. My daughter is very obstinate.

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How old is Milly? My brother is 56.

She is 41, she got sick in her early 20s. When did your brother develop symptoms? Is he unmedicated?

Not all people with schizophrenia have waste matter issues. My son does not have any sort of issue with waste matter and he is unmedicated. Its a tricky brain disorder, I alway think of it the same way as a lightning strike to a home. Its not unusual for a lightning strike to cause odd electrical issues that vary from ruined electrical appliances, to oddly functioning, to not affected at all. I believe schizophrenia does brain damage that can vary greatly from person to person.

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I agree and didn’t mean to suggest they all have waste issues - in fact I suspect it’s relatively uncommon.

From what I’ve read and observed the illness does seem very different from one person to another. My daughter doesn’t speak - just gestures - which is very unusual I think. When she was in hospital the psychiatrist wasn’t even certain she was schizophrenic.

I’ve been reading “The Master and the Emissary” about brain hemisphere differences. The author, a psychiatrist and neurologist worked a lot with schizophrenics at one stage of his career. He speaks about damage in the right hemisphere. I knew there was a loss of grey matter but didn’t realise there was quite extensive damage.
I like your analogy Re lightning strike.

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My brother was diagnosed at 22. He was probably medicated for about the first 10 years but not consistently. He has not taken medication for more than 5 months for the past 20 years.
He talks but asks you the same questions and makes the same conversation all the time.
He never used to have this issue with the toilet until my dad died 2.5 years ago. Maybe his brain is deteriorating. The toilet is my biggest issue with him…

Hi Hope, thank you for the welcome.
At this point yes I’m familiar with doctor’s Xavier Amador book “I’m not sick I don’t need help”!
After so many hospitalizations and my son telling me that I’ve been controlling and him not catching on yet I’m doing what the doctor says: ‘let it be’! It’s not easy. He doesn’t want to take even a vitamin. Well, maybe he has realized that something is wrong because he has been surfing the internet in search of vitamins or supplements and even opium’s; he asks for my opinion and definitely I have to be careful on what I answer. I’ve been reading other’s stories and of course there’s comfort in numbers and tips too. I have read other books of stories of people who have gotten well in the past when psychiatry was not like today; I’ve seen my son doing better on some meds but his motivation is not there yet; since the main trait of this illness is anosognosia he doesn’t see the need for the meds even when we tell him that part of being well is to sleep and eat well. Just the diagnosis of sz makes him upset! I suppose I’d be the same if they tell me I had CA.
For some people it takes a lifetime to accept the reality.
The other issue is the was sexually abused by a 17-18 year s old neighbor when he was about 12, and he started to have issues, we had him for at least 2 years with a psychologist and the abuse issue never was out until he was about 30 he can of blurted out and I put it together but immediately he shut it off, he didn’t want to talk about it.
What a journey!!! Definitely not for the weak!!!

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