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


#201

The time will come, I’m sure, when he has another break and they will admit him. It would be nice to have things ready, but I need his dad on board and he’s a little slow getting out of the gate. One of the good ole’ boys who thinks things will just work themselves out which I was always fine with when we were married, but we need to start making some tough decisions. I think he’s coming around. His methods are no match for this illness and its wearing him out.


#202

Is they the hospital? Is he willing to go or do the police come and get him? I keep getting answers from a crisis line not to take him to the hospital but take him to a rehab center (because I’m not sure if his mania is sz or drugs). My son would not willingly do either.


#203

Yes, ‘they’ would be the first responders. He would not go willingly at this point. He’s had three breaks that landed him in the hospital. In all three cases, it was a complete stranger who called 911 out of concern for his behavior. Its been two years since his last one.


#204

Hi, This is my first post here. I found out about schizophrenia.com because I was referred here from reddit and the sub-reddit for schizophrenia.

My 33 year old daughter is unmedicated, diagnosed paranoid schiz after 4 involuntary Baker Acts. All 4 times she came off her meds after release from the hospital.

This past time she was 100% well when she came home. And for about 6 weeks after. Despite not taking her pills. I assume now that she got a depot injection. I honestly thought it was a miracle, and only realized she must have been given a long acting injection after it wore off recently.

She’s been with us for 2 years, after losing her 12 year live in cleaning job at a hotel. I didn’t know she was ill then. After the first year of paranoia, we built a back door into her bedroom, to let her escape without going through our main house. Tonight she took off because I confronted her about her lack of a job (she worked for those weeks on the injection at a 4 week temp job). She got angry at me, I got angry back, and she left. I was worried she wouldn’t come back, but she did, (talking to her voices). Sigh.

I am embarrassed that I pushed her to the point of anger. I know that If I leave her alone, we see each other a couple of times a week and she is nice to me. Otherwise, she stays alone in her room 90% of the time, talking aloud a good percentage of her awake time, sometimes yelling and waking us up at night.

After reading this whole thread, I believe that if this state had a resource to make an adult stay on medicine, I would use it to force her, because she seemed 100% well after that shot. But I can’t force her to continue to take shots, can’t force her into therapy, and if I involuntarily Baker Act her again, the hospitals only keep her a short time.

She isn’t a danger to self or others, beyond stating that she wished she were dead, or that my husband was dead, etc. She used to call the cops on my husband weekly, and three times they took her away. This past time, I elaborated (built on her statement that she “wished everyone in the house was dead” to make it sound like she made a threat when I called the cops). It had been suggested to me that I stretch the truth to get her continuously Baker Acted until she agreed to stay on meds. But I can’t do it to her again. I know she isn’t dangerous, and that law is to get dangerous people care.

So sad that so many lives touched by schizophrenia have so little chance of recovery.


#205

Thank you for coming here and sharing your experiences. It’s really hard to have a loved one going through this illness. I think you are doing the right thing by prioritizing your relationship with her and being realistic about the types of help and treatment that are actually available.

If she ever gets hospitalized again, do everything in your power to get them all of her medical records, if you are able to do that. Other than that, you’re exactly right. If you stretch the truth to get someone in the hospital, they might stay for a 72 hour hold; unless there is incredible good luck, they will not be there long enough to get better. Plenty of time to get angry and alienated.

Love is real. You can provide shelter, food, and some other things she needs, also support if she ever does decide to seek treatment. All of these are really important; you are already doing what you can for the person you love so much.

I made the decision never to lie to or about my family member who has sz though I completely understand why some people do stretch the truth and feel that it’s a valid choice.


#206

Hello @Hereandhere, Thank you for replying. Yes, it is really hard. Nothing in my long life has prepared me for this. I am grateful I found NAMI, reddit, and now schizophrenia.com for support for me (to support her). Also, Dr. Amador’s book (I’m not Sick, I Don’t Need Help), although it is hard to apply since she rarely talks to me at all. I posted here with hope of helping someone else in the shock and crisis of a loved one’s psychosis.

My heart goes out to all the caregivers and their loved ones.

I think anosognosia is a curse.

There are 3 hospitals here: she has visited the same hospital 3 of 4 times, so they had most of her records. I sent a fax when she was taken, to each hospital, “In case my daughter is there” which described medication non-compliance, what medicines were tried at each hospital, what relief she got. She won’t sign a HIPPA release for visits in the hospital, or for me to have her records afterwards. I stole her discharge papers from her room to find out her diagnosis and med recs each time. (She has since destroyed all of her copies and I can’t find mine. I may have shredded mine since I felt guilty about stealing hers.)

I guess I must try to leave behind a trust that will provide shelter and food for her when I die. No one in my lineage lived beyond 72, most died before 65, and I am turning 62 this year. If she would cooperate to get disability at least she would have a few hundred a month. After I am gone, the homelessness I personally wouldn’t force on her will be forced on her by society.

So many other kind, loving family members are struggling with this problem. Some loved ones recover: I know of 9: 2 who were in a jail/prison/probation system that force-medicated long enough to stabilize on meds (parents turned them in for actual crimes); 3 who were repeatedly Baker Acted and finally stayed on medication; 3 were under 18 at onset and parents controlled treatment even after 18; 1 who “realized” that medicine helped (after 6 years of mostly non-medication). I also know 3 sets of parents who have continued to support their un-medicated loved one, and 1 family who kicked out their adult child to become homeless and never contacted him again. One man, a friend of my ex-husband, died in a mental hospital after being jailed. I am happy for those who have a loved one who recovers. It is such a heavy sadness this illness causes.

I believe that any choice made by the care-giver is a hard choice. I also believe that no choice is wrong in trying to help. Coming to the right choice for your individual situation is heart-breaking.


#207

Anosognosia is winning the war here, it does feel like a curse that is determined to drag my son down.

Thanks so much for telling your story. Sometimes I think moms like you and I with unmedicated adult children are actually in the majority in this world. I think the statistics on med compliance reflect that is true. I think many of us are afraid to come forward and tell our stories. Thank you for sharing yours.

As you say, nothing in life has prepared us for this eternal struggle. What hurts me the most, and what I try to not think about, is that my son from “before” would expect me to get him on meds. I continue to fail that person and its heart breaking.

Best wishes to you, Hope


#208

Hello istherehope,
I am here to support you, it’s hard to do what is right for the family. Did you know of any history of MI on your wife’s side?
Safety for your family has to come first. It is a hard choice you have made.
Please seek the help of professionals for your loved one and God bless you


#209

Faxing information to every hospital a person might be in is great idea. Thank you for your story and for such good information.


#210

Hope, you said that “anosognosia is determined to drag your son down”, and that you feel you are “failing” your son, as you believe his former well self would want you to fight to get him on meds.

This weight has to be so painful. As mothers, we want nothing more than to protect our children, through all the hardships of their lives. Unfortunately, this horrid disease doesn’t let us do our job the way we want or need to. It just doesn’t. It’s not your fault.

So so many of us are experiencing the ongoing challenges of the “curse of anosognosia” and noncompliance. Personally, I expect to be dealing with these challenges for the rest of my life. You are not alone.

And this is not anyone’s fault. It just is. Please don’t blame yourself.


#211

Yes, afraid to tell our stories… I have always hated stories with bad endings.

I don’t want to tell my story because I am embarrassed that I have found no real solution.

I, too, think that my daughter would choose to be medicated if she could understand her illness, but I am failing to help her.

Yet, sharing brings some relief and some hope as we take tiny steps to improve things even a tiny bit. I have been helped by other people’s suggestions: run a fan in the hallway to provide white noise to cover the louder “voice talking” from my daughter’s room; Dr. Amador’s book and the first step of his process “Listen”; give her her own apartment (which I can’t afford, but at least I could build a back entrance to her room so she can go out without paranoia of seeing my husband); and, that it isn’t my fault … I am trying to forgive my failure as a mom.

Now when I cry, I don’t just cry for my daughter, I cry for all care-givers and for everyone affected by schizophrenia. Mainly I tell my story because I still have a shred of hope. Things ARE better than they were 2 years ago. And, I am learning to take care of myself again.


#212

Thanks Day-by-Day,

It is a painful burden and as you say, it looks to be a lifelong challenge for all of us in this position. I think I am at the spot where I understand its not my fault, at some point when one is basically beating one’s hands on a giant concrete wall, one needs to look up and realize -hey this is a really big wall.

I really do think I am there -still at the wall waiting for a crack in the wall, but realizing I don’t have the power to do as we all did when our children were younger. This is one tricky wall. In our “before” times when they were younger, the mountains we were moving, well, they were movable.

I think the folks on this forum who fight this battle are the strongest people I have ever known. It takes so much strength to get on this forum and say “this is what is happening in my world”. We know that many are trapped just because they fear the people who live with them will find out.

Thanks Day-by-Day


#213

oldladyblue, it feels like failure, but its not, we have not failed them, we are still hanging in there trying. And the many people who have beloved family members who are incarcerated are here with us, sharing their stories so that others can see them and try to understand the brain disorder than has taken their original family member. So many pieces to the puzzle that is schizophrenia.

So glad you could build the back entrance - things like that really help reduce the stress in their lives and bring us some peace. We are so aware at all times of their struggle.

Thank you oldladyblue


#214

I am well aware of the philosophy and have read the book mentioned and emphatically disagree. A mental illness such as Schizophrenia is a medical illness of the brain… No different than Alzheimer’s, different forms of dementia, stroke or physical injury from a fall…etc. When the individual suffers from ANOSOGNOSIA there is no reasoning with them… it’s like talking to a brick wall. You go no where, around in circles and chaos impacts everyone. Why would anyone continue to let a person with compromised ill mind take the lead? We don’t let our elderly go around making poor decisions when their mind starts to go. We had our adult child arrested, hospitalized, went to court for guardianship, got guardianship, mandated treatment and for the first time in 8 years our child is healthy, working, driving, dating, socializing and no one is aware other than immediate family that she suffers from Schizophrenia. We understand many may disagree with us but the toll untreated illness takes on the individual, parents, spouses, children, society, social services, our prison and jail systems is devastating. I apologise if I’ve offended but we don’t believe in letting an unwell mind (especially those who suffer from ANOSOGNOSIA) run the show…the consequences are just too great for all involved.


#215

I’m happy for you that your daughter gave you grounds to do all of those things.

As one of the families who hasn’t been presented with such an opportunity, well, sux to be us.

And, welcome to the forum.


#216

The challenge for many families, NeverTooLate, is that where exactly someone lives in the US will often determine or dictate his or her family’s ability to get action, and force or mandate treatments or services.

It sounds like you live in a place where police, judges, hospitals, etc. are progressive and more willing to make those hard decisions to support families in helping their MI loved ones. Fortunately, I too live in a supportive area, in the state of MA.

But, unfortunately, many families live in rural areas or less progressive states where there is no one, including police, willing to step up to the plate. In those places, a response to explain their inaction might be something as insensitive as “There is no crime in being mentally ill”. It’s horrible that this is the case, but it is what it is for these families.

Unless a family has the means to pick up and move themselves and their ill family member to a more helpful and supportive county, state, or region, they are stuck without a way to get treatment for their ill loved one. On this forum, I’ve read so many stories of families experiencing this plight. It’s tragic.

Laws need to change.


#217

Thank you so much Day-by-Day, you took the time to explain, I was so sleepy last night I had only checked into the forum to see if everyone was alright and find out if we had news with your son.

I shared NeverTooLate’s thrashing (its all good if anyone promotes vents/rants in the forum its me) with my husband. He said yes, some people get help when they ask for it, must be nice. Not to say that NeverTooLate’s story isn’t full of tremendously difficult, impossible struggles, we all know that is most likely as well.

The big rock episode, which our law enforcement shrugged at, did change a lot for us personally. If you are trapped in your home late at night and someone is circling your house screaming at you while having the worst psychotic episode of his life, that you are on your own to handle it, IS important information.

How are you today, do we have any changes? My friend keeps saying that Clozaril can bring some medicated insight…

Would you feel better with one of Vallpen’s shoe prints to remind you we are all in this together? Email me privately if you would. Hope still hoping


#218

We live in a red state…just now got a level 3 trauma center near us. We have ONE mental health facility that initially diagnosed her bipolar and let her out with oral meds and without telling us the problem. Even when she stopped oral meds 3 months layer, relapsed and started attacking me, stealing from us, trashing our new home in a full blown paranoia and delusions state, that hospital WOULDN’T DO ANYTHING TO HELP US. We sat down, learned about the systems in our county, hired several attorneys for different aspects of the legal process and then had her arrested. From then on we were ready at every stage. I might add during this time she was hospitalized in two locked facilities and escaped from one 3 times and once from another. She fought us in court but we prevailed. There was nothing easy about it and at every single step officials tried resisting and pushing us aside. The only people sensitive were the cops and one judge in the process. The medical mental healthcare providers were the worst.


#219

@NeverTooLate - That was quite something! What state/Country do you live in? I’m glad you have successfully gotten your daughter functioning and working again - even dating!


#220

Now you really sound like one of us on this forum - welcome, again- we look forward to hearing more about your story.

Sorry to land on your reply to Day-by-Day