No, the company researching and testing the medicine was Takeda. It was specifically for negative symptoms. It was in March 2020 and called Negative Symptoms and Cognitive Impairment Associated with Schizophrenia Caregiver Advisory Board.
Oh, it looks like that drug didnāt succeed, even though it showed some success with cognitive issues:
My daughter was mostly unmedicated from 2016 to 2019. Medications had failed her, and then she refused to try more of them. The key to helping her resume life outside of her room and her mind was Dr. Amadorās LEAP method. I used that to try to help her change one thing at a time. For instance, her lack of motivation for eating took repeated attempts to get her to open her door and take a plate of food from me once a day. That negative symptom (lack of interest) turned her into a 95 lb skeleton and was more scary to me than her positive symptoms (added delusions and hallucinations). Medical descriptions of positive and negative symptoms were confusing to me, but her extreme lack of motivation for self care was so obvious.
@hope Dear Dear Hope, I am saddened to hear this tragic news of your beautiful boy, what a heartbreaking journey Mike has been on during his short years of life, what an amazing and dedicated Mom you have been to him, Iām so sorry Hope, please accept my truly sincerest condolences.
@Maggie46 Thank you so much, I have often thought about you and your family and hoped life was treating you well. Yesterday was his birthday, people had said special days would be hard and it was a difficult day. People say āremember the good timesā - those are the difficult memories at this point. Maybe time will make them less painful. Take care my friend.
I do. I just less than an hour ago for the first time searched online āschizophrenia caregiver forumā and this forum was in the first result, and after reading through about the forum, I skimmed the thread topics, and felt this one most closely aligned with why I am here. And, like you stated back in Jan 2017 "[quote=āhope, post:4, topic:3152ā]
I think I am simply looking for contact with people who are in the same situation.
[/quote], me too! And, Iām so glad after reading through only a few replies to your (hopeās) initial post, I no longer feel alone, hence that inspired my choice of name I gave myself for this forum.
After reading Patricia6 share, [quote=āPatricia6, post:175, topic:3152ā]
We mothers never imagined when we gave birth that our precious babies would suffer so much. Iāve gone through all the grief stages over and over again - denial, anger, rage, sadness, acceptance
[/quote]
I began crying, the first time being able to since the latest difficult experience with my unmedicated son. Heās 41 and had been first diagnosed around 20 yrs. ago. As, I am still grieving it is hard to say more. Iām just so glad to have found others, and particularly other mothers, who can relate to how hard this is to love someone whom has schizophrenia and is unmedicated. Iād like to share more but my own grief is blocking me.
Hi, Glad you found the forum. My son is 29 and unmedicated for the last 3 months. He only took his medication sporadically before he entirely stopped taking it, flushing all his pills down the toilet. I agree with you that the grief and worry is horrible. We had never imagined a life like this for our sons. It has been a horrible roller coaster ride with my son for the last 12 years. I donāt know what will happen next for my son, but it never seems to get better. I try to keep hope, but it is hard. You are not alone in this awful journey, Others are struggling thru the never ending sadness, and fear for our sonās and ourselves. My heart is with you, we have to try to stay strong.
Welcome to the forum @not_alone . I am so glad your search turned it up for you to join. I also found this forum years ago by a search for āschizophrenia and unmedicatedā. This particula thread was what came up in my search. I gained much emotional support over the years from the people who post and who have posted in the past on this site.
Sometimes I think those of us dealing with unmedicated family members are in a special kind of hell. The ānormiesā have no way to understand our struggle and the struggle of our children. I often felt as though people whose family members were medicated were judging me for my failure - as though I didnāt have enough on my plate already.
Hi Hope, Now that my son is officially unmedicated, he announced several months ago that he was done with medication. Things are getting really crazier than usual around here. I feel most people that have no experience with this, seem to blame me that I canāt get him to take his meds. Oh well, one day at a time and trying to keep a sense of humor here and there can help. These sonās do come up with some stuff that is almost laughable, but the sadness and scaryness far out weighs it, unforgivable. Hope everyone out there dealing with this has a peaceful day. ![]()
Typo, unfortunately not unforgivable in above post
Thank you irene for your reply, and for understanding, and support. I think I need this and you all. My son has been unmedicated off and on over the years, and so I have witnessed the difference that it makes, but while also learning to understand why he is resistant to taking it. For the most part, he has not been on medication regularly though for the last five years. And yes, a horrible rollercoaster with sadness and fear, yes, very much so. Thank you, I will try to stay strong. Itās so hard to talk about the latest incident, which really wasnāt necessarily horrible, but nevertheless very hard, in my present state of mind. I need apparently more time and distance to process it and perhaps support here.
Thank you @oldladyblue for the welcome. Much appreciated. And, I think your words will help reinforce that I might need to hang around a bit
to strengthen my resilience that at present feels waned, vulnerable and shaky at best.
Thank you hope for your reply. And oh my goodness, when I first initially joined the forum just yesterday and started reading your thread starting at your very initial post in 2017, replying having no idea at that time, that you had recently suffered the loss of your son, my very deepest condolences. For you to continue to give support to others here is of marked respect and love and is much appreciated I can only imagine by others here in the community, and now myself included.
I have skimmed over some of the thread and discovered thereby you mentioning the LEAP method and video, and decided to look that up since you recommended it finding success with using it. Iām open and yet have some skepticism, but do look forward to reading and learning and experimenting using it. In some ways, Iāve already had adapted some of it in my relationship with my son, but I recognize thereās more here to look into and learn.
At present, unfortunately, Iām not even ready to re-engage with my son. Not quite ready to talk about the details, nothing horrific, but nevertheless the roller-coaster ride can be a bit too much, and I feel over-whelmed and need some time and space to be up for whatever comes next - perhaps the LEAP method will be a part of it.
(edited reply to add the last paragraph rather than post a new one.)
I am glad you found this site. I am having a very rough, emotional day with my currently unmedicated son. I am truly scared of him and for him. He lives in a townhome I provide for him, which is only 2 blocks from where I live. It sounds like a good arrangement, but I am frightened a lot that he is going to hurt me or someone else in the neighborhood. He called me earlier, wanting money of course, I could hear the anger and paranoia in his voice. I doubt he will get on meds anytime soon, unless he is involuntarily hospitalized. I am getting older and it is getting harder to caregive him. I know you have been dealing with it for many years. Staying strong is sure hard today. But trying to be positiiveā¦ā¦
Oh, I almost forgot, if you have any advice on dealing with all this, let me know, you have many years of experience. Not by choice! Lol
Boy, I sure can relate. I too am getting older, and have other challenging physical and mental (ADHD and childhood trauma) and financial limiting factors too.
With regarding your safety, my advice would be to state boundaries and enforce them.
I recently, a week ago, called the police to have them serve a trespass warning on my son who despite my insistence walked over twenty miles to come to my house to talk to me. He followed that right up with doing the same to one of his younger brothers and his family house in my neighborhood. His brothers wife also called the police to serve him a stalking warning (since he had not yet stepped on her property but was in the field next door).
While I donāt regret it, it has been what has ignited my recent bought of grieving.
For the most part, my sons been a loving peaceful big-hearted guy, but the delusions and paranoia, well you know.
And even though my son has never hurt me or a family member he has expressed frightening delusional thoughts and behaviors: aggressive, threatening, paranoid, dominating, entitled behaviors around and towards us and others. He has hurt himself and property and been hospitalized many times, and a lot of trespass warnings. He also has shared about being in other physical altercations with others, but itās not really possible to know how much is true.
He has four times over the last 20 years lived with me as well as other extended family usually at least twice if not more over the years and it always ended with him going off his meds and a psychosis that was often dangerous in some form or another.
For the last couple of years he has been mostly homeless or in temporary housing status with people who try to help him out and give him a couch, a room, a tent to rest his bones. Itās been countless places, shelters, off-grid communities and hospitalizations, too.
Recently, he moved back in the local area, same county but about 20 miles away, whereas, he had been over the last couple of years about 100 miles away, near but not with, my sister and her husband who had some contact with him occasionally and tried to help him out. I kept in contact with him when heād get online at a public library,
Since he moved back around say Easter, I would visit with him once a week where he was staying with some pretty nice and fair people who were renting out rooms, and space for an RV to others, and for him a small room in a broken down mobile home in need of much repair in exchange for help on the property, and a good safe group of people who wanted to help out others and no drama. I began to really look forward to our visits.
Then, some issue came up where they had expectations from him that he wasnāt aligned with, and he ended up leaving. He was only at the new situation with old friend from high school about a week before he had a psychotic break in public and someone called an ambulance and he was temporarily hospitalized. I didnāt find out until he was back at his friends the following day. Then, he bounced back to the previous place, and asked for help getting there, which I did. I was thinking that was a positive thing that they were willing to have him back, That only lasted a week, before I got a phone call from him there and heard him being aggressive verbally with someone there. He bounced back to the friendās trailer. I didnāt obliged his request for help getting there, but someone helped him. About a week later he expressed frustration with trying to communicate over text and cell and needing to walk to public places to charge it. Next thing I know, heās messaging me that heās enroute walking to my house. I told him that I was uncomfortable with him coming here. I used in part the reason that I have a business here. I Airbnb two bedrooms in my house to long term guests. I have been doing so since 2015.
Itās such a long story, but there was even a time around 2017-19ā that I took him and his son in ātemporarily,ā supposed to be for only a year and with the condition that he must take his meds and she save so he could get on his feet to live else where. He was taking them and employed for a while, maybe a year, and getting him self slowly in a better financial situation.
And then he stopped taking his meds, lost his job, had psychotic break, didnāt recognize his son, his son got scared, he got physically aggressive with overturning a heavy piece of upholstery, his son ran to a friend house nearby, another of my sons ( I have four) who is disabled and lives here with me, messaged me at the other brothers house, while I was babysitting his kids, hearing a yell and the furniture slam. I called the police, got care for the other grand-kids, came home, waited for the police. They talked to him but he was chill by then, so they left. His son returned from his friends in the neighborhoodās house. I was desperate and stressed and fortunate no Airbnb guests were then there at the time.
I prayed like never before, pleaded, please get him out of here. Within 24 hrs., without asking him to, he just left, yet almost tried to take his son with him, who didnāt want to go. He asked his brother for a ride to another situation he said he lined up (a shelter) a hundred miles away. He thought he was taking him to the homeless shelter, but it ended up being just ādrop me off hereā behind a gas station. His brother gave him a twenty and has since cut him off, wanting to keep him and his own family of five safe.
It may seem like an extreme reaction, but if you can imagine all the other incidences weāve experienced that I havenāt shared, you would understandā¦and I imagine you being in a similar situation and being at this forum, you do. There were many other prior scary, dangerous, chaotic in some form or fashion occurrences. (the roller coaster)
My sonās son stayed with me for the following year and as usual went to his grand-father, my exās house for spring break, the pandemic happened, school closed, he chose to stay with his grandpa and his grandpaās girlfriend since. I get him, my grandson, over most holidays. For a while he would have some contact by phone with his father, I took him to see him once for a Thanksgiving, but for the last year he wants none. Itās just too much - to deal with his dadās delusional talking. Heās about to have his 15th birthday.
Irene, I realize you did not ask for all that!
I sure hope you do not mind me sharing. Please let me know if you did.
And I do @hope itās not too inappropriate to overshare and hijack your thread with my story. But, I could not get it outā¦until then, what I have been dealing with, in part because itās so hard to just give in brief without more of the surrounding details. Perhaps, I should have started a new thread and introduced myself and shared it there, but I was stuck unable to get it out, until my reply to Irene.
If you prefer, I could delete it if thatās possible and share else where. Let me know. Iām not in the best head space in my present grief, so Iām not likely making the best choices.
Hi not alone! I am delighted to get your post! I will read it in a bit, I am so interested to read your story and yes, you are on the right forum. So glad you responded. I will text my story soon, this schizophrenia really does a number on the moms, it is hard to recall all the details, so many unexpected twists in the schizophrenia stories!
Thatās a relief. And, please do text your story if and whenever you feel to.
Yes, it is hard on the moms Iām seeing, so glad to discover itās not just me.
I did make some edits in my story above but only formatting the last section into paragraphs and a few edits for clarification as it read like one long run on sentence. It can also be quite confusing in that I am talking above three of my four sons and a grandson in this one telling of my story.