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


#161

We are coming up on our one year anniversary of no meds. Looking back the absolute worse time was the period when he came off, crashed, was involuntarily admitted, began meds for discharge and came off again. 6 weeks of pure hell. Since then…there have been ups and downs but the most surprising is the insight is back. He knows he has the illness but has chosen to deal with life unmedicated–at least without prescribed meds. Alcohol apparently does not count. :roll_eyes: He is learning his trigger points and will withdraw but does not stay there. He actively works on interacting with family. For our part we lower our expectations and enjoy the good days. .

That being said, it is not a course I would run out and endorse. Just like every other illness severity and type needs to be taken into account. For example; a family member was hospitalized with out of control blood sugar but controlled with diet and exercise is currently doing very well without meds. A friend on meds still is having blood sugar control issues and having serious damage to nerves.

Medication and doctors are not evil. The illness is. But in the end everyone does get to choose their treatment course and the consequences.

So we are continuing on our journey unmedicated with the boundary of if family senses there is a danger to himself or society we will force another involuntary admit.


#162

Sounds like a couple of hours saved right off the bat


#163

May I ask, how many years has it been since yours showed initial changes?


#164

At 17 things began to get really weird. We put it down to the age, questionable friends and experimenting with drugs/alcohol. Then there was legal trouble. Serious enough to force him into counseling and tether. He was put on antidepressants for about a year. He still made some poor decisions but overall he seemed to be moving in a better direction. At 22 things fell apart and it became clear so much more was going on and shortly thereafter got the diagnosis of paranoid schizophrenia. He is now 32.


#165

Thanks for the response, I try to find instances of people’s scz lightening before 25 years of illness. My son’s scz started noticeably at age 20 when he stopped spending time with his friends at university. Since his scz has been so gradual, it could have been earlier - some behaviors I wonder about when he was in high school. Mine is 36 now.


#166

Hi Hope,

My stepson has been living with us for a few months now, and has never been medicated or had treatment of any kind. He has anosognosia, and refuses to see any type of mental health professional because “they try to make you crazy, and make people think you’re crazy.” He is 22, so we can’t force him into treatment. Our state has awful mental health resources for adults, and our city has zero inpatient facilities for mentally ill adults. He currently has no job, won’t shower or change clothes, and won’t talk to us about whatever delusions/paranoia he is experiencing. This situation is so frustrating and disheartening.


#167

Hi Stepmom39,

I am so sorry. I know from our experience with Jeb its a long haul going forward. Have you and his dad considered going to a Family to Family class? They are sponsored by NAMI and are free to attend. The classes start at different times, we had to wait 5 months for one where we live.

The FtF class helped us figure out what area we wanted to work on first. So many choices, for us we wanted the medical diagnosis so we could get Jeb set up with government benefits. At the time we thought, in case he ever can’t live with us, the benefits make it possible for him to live on his own. And they do.

The biggest early mistakes we made were trying to convince ours he was ill and my husband not showing him kind respect at all times. Its so easy to become frustrated with them. Before we knew what was going on, and for a while after we knew, my husband didn’t get it. Once when my husband was super frustrated, he shouted at our son that he had scz. Anything that frightens them becomes much bigger later on. The negative delusions about his dad have grown and continue to grow.

It feels helpless, because the strategies take so very long to get results.

Everyone is here for you. Take care, Hope


#168

One of the things that helps when I feel really upset that mine isn’t on meds, is that no one knows for sure how much meds would actually do for my son. Many of our medicated family members continue to have some of their symptoms despite being on meds.


#169

We are going to the Family to Family classes, so hopefully we’ll get some good advice on how to proceed. We haven’t tried to tell him he’s sick, but we have suggested he maybe get help for his anxiety, which is the only thing he acknowledges, but he adamantly refuses to speak to anyone.


#170

That is exactly how we started -once we knew we were doing everything wrong - we even told him we were going to FtF to find out how help him with his anxiety. He was really upset we went to Family to Family. We suggested he take Peer to Peer at the same time - they were running concurrently.

When we realized ours wanted to go to Colorado quite badly, we offered him an all expenses paid trip to Colorado if he would just see a psychiatrist once a month for one year.

Dr Amador’s book was what tipped us off to listen for what he wanted.

Sometimes it seems like there are so few of us on this forum - but there are many who are sympathetic to our plight and lots that follow along at home. Sadly, its easy to be somewhat ashamed of failing to get a family member on meds when so many have succeeded.


#171

We also did not succeed at getting our family member to try medication. A judge succeeded.

I felt so much shame about the effects of this illness on my family member and all the people around us. Now I feel like my family member has a terrible illness and through some grace is currently receiving treatment for however long.

I want to admit that I greedily and gratefully accept every good day. At the same time I pray to whatever-can-be-prayed-to that no family member or person who suffers from this illness, medicated or not, ever feels shame because of it.


#172

Sarcosine helps month daughter immensely to not be in the zombie zone. It helps in depression as well s both positive and negative problems.


#173

@Kellyshayne How much does your daughter take daily and how does she take it. I’ve been getting come into my son via smoothies and sometimes he will just add it to water.


#174

She takes about 2 grams per day in her juice


#175

@hope – you and I have communicated in the past and I’m posting under a new name. Like your son my daughter was treatment resistant and our family went through some pretty tough times in the last year. She was in and out of hospitals, group homes and eventually there was nowhere for her to go but the state hospital. She was in the state hospital for nearly 6 months. Finally the hospital confirmed that her sz is very difficult to treat and the reason why she was in the hospital for so long. Doctors wanted to find a drug would work for her in a safe and secure environment. She was placed on Clozapine which requires weekly blood test. She was stabilized on this medication and well enough to finally leave.

Her social worker at the hospital found her a foster home of 5 women all with the same challenges. She is doing great. Each woman at the home have their own room and bathroom so they can enjoy privacy but at the same time the house has a feel of warmth and a real home rather than an institution. The women all eat meals together and the woman who is their “foster mother” is awesome. She is making friends there and has one woman friend who she takes walks with.

I’m raising her two young children and we pick her up every Saturday in where we spend a few hours with her at our home or at a park. It’s been great for the children to see her and have a relationship with their mother. One of the positive things I’ve seen in my grandchildren is the empathy and compassion they have for their mom. They know she is not well and ask me questions about her illness. I’m still working on adopting the kids.

Months ago I was in such despair over what was happening to my daughter but I’m here to tell you from my own experience that our kids can be helped if we are willing to be a fierce advocate for them. I feel that all these years of advocating for her I found myself turning into a very aggressive lioness for her to receive the care she deserves. There is no way I can have my daughter live with us but she is in a home she enjoys and I know she is safe and being cared for. I feel at peace now. My daughter is 35 years old and was diagnosed at 19. It’s been challenging to say the least. We mothers never imagined when we gave birth that our precious babies would suffer so much. I’ve gone through all the grief stages over and over again - denial, anger, rage, sadness, acceptance --. I don’t know how it’s going to be in the future but for now she is enjoying a level of stability and peace.

Wishing you and your son hope, peace and joy.


#176

Wow, @Patricia6, that sounds like the best possible setting for you daughter. I think that is what many of our loved ones need - a place that provides them true private space and also support, understanding, and socialization.

I am currently going thru another cycle of depression as my son’s mental status seems to again be deteriorating. You clearly understand how difficult this is, and the idea of having some peace is just an awesome thought.


#177

@Vallpen. I’m so sorry of what you’re going through but hang on because you never know what’s around the corner that can help you and your son. There were times I was so angry about my daughter’s situation because it isn’t her fault she has an illness and I blamed myself for it —but thankfully things are good for her now.


#178

I do remember you and your daughter and her children. What incredibly good news you have returned to us with - your perseverance and success is a lesson for all of us who fight this battle for our children.

Your words “its challenging at the least” yes, we are given a mountain to move and handed a pretty small spoon to do the job. But you have proven it can be done. Perhaps, not necessarily on the timeframe we would like…

So very good to hear that you have found peace and your daughter has peace and stability as well. Your work with your grandchildren, I can’t find words - they are compassionate toward their mom and want to understand. I am so glad you are there for them, I hope they provide you with the same comfort and joy as you bring to them.

Really hoping here that the experiences I go through on my own son’s journey with scz are preparing me to be the lioness he needs in his life when the time comes.

Thank you so much for your wishes of hope, peace and joy for my son.

Back at you Patricia6!


#179

@Patricia6 That is really an amazing story! Thank you for sharing.


#180

I remember your story and so thrilled to hear things are better. Thank you for letting us know. Your story gives us hope. My son was just started on Clozapine in the hospital as well and I have seen signs of my son no seen in a long while. Next week he meets with an ACT team to set some goals. I am hopeful.