I am sorry for the struggle you are in. I honestly believe there is hope for a better future in a realistic way.
FYI, I have never heard NAMI recommend staging an event. It might be that someone in the group you attended presented it as an option. Each time you go to a Family Support Group, you will get different ideas and perspectives from different people who happen to be present at that particular meeting. What works for one may not work or not be desired for another. Each person/family has to determine what is best in their own situation.
Hi @hope4us, @robynsc was referring to my experience at a NAMI support group years ago. I really appreciated being able to listen and talk to people in similar situations, it was a good group. As you pointed out, other families have lots of different perspectives. At Family to Family we were all encouraged to listen to others and consider many options for helping our family members.
One of the women attending the support group had a strong belief in staging an event to cause an arrest to try for court ordered meds. I thought it was a bad idea, she just wouldnāt let it go, it had worked for her son.
Ultimately, her pressure did cause me to stop attending the support group. I had been quite involved with the group and covered for the couple who ran the group when they were out of town.
Yes, I strongly agree, we have to try to determine what is the best option for our family member/s. Dr Amadorās LEAP got us to a better situation, even if it did take a couple of years. One of the members of this forum encouraged me by telling me it had taken their family 10 years to get a family member on meds. Its been 8 years now, I am not giving up. I have learned it is best for my son if I donāt take actions that I donāt believe in. I need to listen carefully and let him lead the way. When a situation has his support, he will make it work. Right now he just needs me to fill in the gaps by overseeing the areas where he needs help.
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@rosyd,
I am curious to know if your son/daughter or family member with schizophrenia
does āinteresting things with the toiletā what exactly are those interesting things?
My 56 year old brother has not flush the toilet in about 8 months. He has been told 100 times to flush it and he just ignores you or he says ok I will. My brother will also put things in the toilet like cups and plates and then poop on top of those things.
I have only come across one other person who has told me that her daughter does not flush the toilet.
Would you mind expanding on that for me?
Iāll explain to you; our son just turned 48. In the past heās been āon his ownā, meaning he had an apartment on the low income housing which was pretty clean and reasonable because as you know they pay according to their limited income; when he stops taking the meds eventually he deteriorates to the point that the paranoia takes over; thereās been couple of times that heās been evicted because he tends to cut his own hair and puts it in the sink so he doesnāt put it in the trash can and on one occasion management called us because they had the sink all clogged up and water was stuck but maintenance couldnāt get in to fix the problem of course we went there and we had a key and they did also but we had to be present for them to get in; later on it was the toilet, heād used it as a trash can and he was putting there food, socks, pennies that stay there (I think he put them there to see if the āspiritsā were in his apartment) and even a disposable razor that made the worse damage because he was on the 9th floor and every time he wanted to flush the toilet there was so much noise since the pipes were clogged up. Now I only remember that he was taking a shower without closing the curtains and all the water ruined the floor also. He ended up being kind of evicted because since he was on the 9th floor water was dripping down to the 8th floor! Jeez, that was expensive! We paid the damages but still managers remember and it is almost impossible for him to have another apartment in the low income housing. It happened again another year when I had just gotten the apartment and just after 2 days the same thing! Expensive damages to pay again!
Heās been here at home with us unmedicated and since weāre aware of these possibilities we are trying to remind him to any damages he will have to pay.
Iāve lowered the pressure of the water, he takes a shower every day sometimes 2 and he doesnāt really scrubs himself but he used to take a long time there, until he finished the bar soap (3.2 ounces or so)
Once in a while my husband finds a ālogā stuck in there, I buy the single sheet rolls because our sewer was put about 6 years ago and the pipes are only about 2 inches in diameter (we had septics before that).
I know that what you experience is not fair at all; sometimes I think about the mentally ill in those poor countries so the only option for the relatives is to lock them up in one room where they are only themselves and they put their food in a little window just like an animal. It sounds inhumane but thatās their reality.
What you describe itās like the unabomber.
Iāll tell you Iām praying all the time.
While our son stayed at the State hospital he was eating a lot, I sent him snacks for a week and he was eating them in 2-3 days so he got the runs on one occasion and like a little kid he threw away the clothes.
Sometimes itās like he has autism, he doesnāt know how to communicate.
I see a lot of similarities in their behavior without the meds.
I hope that you can get the help your brother needs.
You can laugh at my personal story: I grew up in Mexico City, that city is young; Iām old, we didnāt have a toilet, no water in the house, no gas or any of that.
We used to go āout to the woodsā to the bathroom, with time my father built an ouhouse but he said it was awful bc it really is, it was better to just go to the outdoors. Itās cleaner, no odors if you cover that out with soil or lime! Just an idea!
Take care, I hope you find the right words to get across your brotherās brain to flush and use the toilet as he should. Do you think you may have to ātrainā him again as a little child? Children learn by repetition.
I know itās hard nonetheless!
You are in my thoughts and prayers.
I understand caregiversā frustrations with these toilet issues. My understanding and experience is they stem either from executive function and planning issues similar to ADHD or elaborate extensions of delusional systems into ritualized behaviors. There could be a seeming attention-seeking passive aggressive component to the behavior as well, but itās probably unconsciousā like misbehaving children who seemingly donāt know why they misbehave.
To my eyes these are complex problems that could prove difficult to consistently solve behaviorally. Maybe a more practical engineering approach would help. There are retrofit auto flush mechanisms that can be installed in home systems similar to what you see in public restrooms. To my surprise I learned some years ago that many of the automated towel dispensers, sink and toilet valves found in public and workplace bathroom are battery operated. Even if toilets canāt be retrofitted, they may be replaced reasonably affordably (compared to damage costs certainly) with automatic ones and swapped back if necessary in a rental living arrangement. There may still be distrust and circumventing of such a system, but it may help with simple distraction, forgetfulness and inattention.
My brother has hoarding tendencies and while I havenāt seen it lately, I understand his bathroom has plumbing issues where he fills his toilet tank with a bucket for some reason. It may have to do with a leaking fill pipe, I guess. He has elaborate ideas to fix his bathroom and install slate flooring and has purchased toilets from the local Habitat for Humanity REstore center, but his executive planning deficits and stubbornness have stymied progress. Weād like to swoop in and fix things, and the hope was we could do this while he was in alcohol rehab, but he has seemingly dried-out on his own yet again, so that plan was thwarted. I sympathize, these are difficult problems to solve. Thankfully my brotherās issues donāt extend outside his home, and despite his challenges, he has some inner motivation to project a degree of cleanliness to the outside world.
Hi Rosyd, The toilet issue has to be one of the least spoken of issues - Iām hoping that means its more rare. Years ago someone had a family member who spat constantly. They moved their family member into the basement where they could routinely wash down the walls and floor. They were lucky they had a basement and a floor drain.
My Family to Family teacherās son, who had scz, was always quick to use the word ātrickyā to explain the unexplainable. Family often want rational answers and explanations for the thoughts and behaviors of their family members with scz. Her sonās way to explain the unexplainable, was just to say āits trickyā. It took my husband a long time to understand he needed to stop looking for rational reasons for irrational behaviors.
The first couple of times I had to pay for damage my son did to a rental unit, it was a small amount, the third time was much larger. 
He didnāt damage the fourth rental and so far his current rental is undamaged.
I agree with you, this is a great forum. People get help and often we donāt hear from them again for a long time. We always hope things are going well for them and their family members.
So good to have you here - we need more people with older family members. Some of the best advice I have received has been from people with years of experience. One of the moms of a 50+ year old in my Family to Family class, told us, ādo what you can to eliminate stress in their livesā. Then she laughed and said quite kindly āgood luck with thatā. Take care!
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@hope4us, I think my son has catatonia. He stands for hours sometimes. Heās not communicative. Sometimes you can stand in front of him and ask a question and he will not respond.
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Hi Hope, the cost of MI is expensive: we paid about 2k the first time on one building and about the same the 2nd time not counting all the things he throws away from our house: one day I realized the laptop disappeared but it was across the street on the cornfield; he has cut the TVās cords, cracked the phones, taken to the pawn shop expensive gold coins and given only a fourth or fifth of their value.
Well, you touched also the spitting issue; our son also spits and spits! The space on the side of his bed is ruined because of it, we washed it while he was in the hospital but a month after he stopped the meds heās doing it again, I had to tell him of the damages he has to pay for the carpet in the living room where he sits; he also spits where his father sits either on the chair or the couch and definitely he shows his dislike for him that way.
Heās always kind of gagging saying that āyou name itā (could be anyone including his father) is putting sperm in his mouth and I attribute his saying that to the fact that when he was about 12, a 17-18 years old neighbor took advantage of him sexually so either or both: he performed oral sex on him and he wanted the āfavorā returned. At the time I didnāt know that but many years later he blurted it out but he didnāt want to talk about it.
Itās heartbreaking to imagine him going through such a horrible experience and out of shame never told anyone else; itās horrible to me since he started believing he had bad breath around that time (when he was 12) and we had him going to a psichologist but he never mentioned to him the issue of the neighbor.
So he believes thereās sperm in the water or simply out of my nowhere starts spitting.
I only assume heās spitting from what I know and hear him saying which is so obnoxious and completely gross that I canāt repeat it, sexual comments beyond imagination.
Definitely from someone who has a broken brain, broken dreams and been violated/raped at a vulnerable age; I believe your mind and soul have to be marked forever.
I try to think this is a learning experience given to refine our character and will pass one day.
Take care.
*Thank you for sharing.
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Hi Rosyd,
In one of his apartments, my son broke holes in the walls around outlets, switches, ceiling lights and ceiling fans - we believe he was looking for cameras and microphones. We suspect some of the other walls and cupboards that were damaged were done more out of anger, but we really donāt know. At Family to Family they told us to remember that there can also be visual hallucinations during psychotic episodes.
Another NAMI friend had a son who took anything that used electricity apart. They couldnāt leave him at home alone.
You are so right, mental illness is expensive! The first psychiatrist we consulted was an expert in severe mental illness, he gave us a set of priorities. We were told, get him diagnosed and get him on disability. Luckily my son had worked enough to be eligible for disability, but his disability payments are small enough that he also qualifies for ssi and Medicaid to accompany his Medicare. He also receives SNAP food benefits.
The disability makes it possible for him to be in his own apartment. He wants his own place and does best when he lives on his own. When a place eventually makes his paranoia flare up he will suddenly move.
Getting him diagnosed took a lot of LEAP work. At one point getting a diagnosis seemed impossible, we finally figured out an incentive that worked by using LEAP. We have been able to maintain a reasonable relationship by always using LEAP methods.
We donāt know of any sexual abuse in regards to our son, but he has accused us of sexually abusing him. At one point he was accusing us of sexually abusing him āthrough his computerā
Another family had a daughter that accused all of her brothers of molesting her and said she had been raped at college. Her brothers wouldnāt come to family gatherings if the sister was going to be present. The brothers strongly denied her claims and kept insisting to their parents that something was wrong with their sister. After she was diagnosed with schizophrenia in her thirties , the parents didnāt know what to think about all the past claims.
One of the old NAMI threads told of a dx daughter that was easy to live with - after they rehomed the family cat. She told her family that the cat had a demon inside it and would chase the cat with a knife during bad episodes. We were all glad when they rehomed the cat.
and thank you for sharing, it really helps people
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Yes, the behaviors you describe sound so very familiar to those of my son, who has catatonic episodes; some are short and some have been days and weeks. Some more severe than others. If you want to private message me, I can email you some medical articles I have saved.
@hope4us this is the first time Iām seeing it and itās scary. Itās good to know that it goes away in time. I think we saw some thawing last evening. He starting pacing, which I never thought Iād be glad to see.
There are varying degrees, if you will, of the negative symptoms that could be precursors to or actual indications of catatonia. In my reading about catatonia, in some people it can last for days, weeks, months. It requires intervention because it can be life threatening. I definitely recommend talking with a psychiatrist about this.
@maggotbrane,
I have thought of installing a toilet with a power flush OR an auto flush in my brotherās apartment to solve the toilet issue. My problem is that he also sometimes uses his toilet as a garbage can and throws cups and plates in it. I would be scared to find out what would happen if an auto flush toilet had cups in the bowl when it flushed . My brother used to flush the toilet. In the past 8 months he completely stopped. He is 56 years old. I am having difficulty understanding that if this is related to delusional behavior related to psychosis , why did it happen suddenly. My brother has not taken medication for many years. So his psychosis is probably constant. All of a sudden he gets different thoughts that make him not flush the toilet? He sees the poop build up every day and that is only a problem for him and no one else because he lives alone.
This toilet issue is so disgusting and I have no way to solve it. Is it possible that it is a phase of psychosis that will eventually disappear?
@rosyd,
I cannot imagine how I am going to deal with this if it goes on too much longer. His brain is so damaged by now, nothing can get better. it does help to actually hear that others have issues with the toilet. it makes me feel like I am not alone even if there are no answersā¦
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My brother seemed to be less violent WITHOUT his meds. Heās on 9 of them, 2 of which are Xanax and clonazepamā¦which seem to be a violent trigger
The first question we always ask is how sure are you that he is taking his meds?
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My son isnāt flushing often. He runs water 24/7 . He ruined our rental, old mobile home but quite livable, but over flow of water damaging floors, also by banging holes in walls etc. we had to have it demolished.
Take a look at the assessment procedure for schizophrenia: https://family.schizophrenia.com/t/discussion-of-apa-schizophrenia-practice-guideline-statement-1-assessment-of-possible-schizophrenia/11108
If something strange has happened all of a sudden then maybe he needs a comprehensive workup to rule out physical causes.
@Shallcro
How old is your son? When did the not flushing the toilet and running the water start?
What is happening now? Have you ever asked him why he does not flush or why is he running the water so often?
caregiver1,
the toileting problems have been there for a while but have been intermittent in the past but now are more prevalent. My brother refuses to see any health professional, so a comprehensive work up is not a reality for him. I cannot even get him to get a Covid vaccineā¦