heartbroken over son's worsening state

[Childofmine]

Karisma, I am so sorry for what you are dealing with right now. There is just no way to reconcile it. I love that you are enjoying the chance to feed him, see him (I call it "lay eyes on him") and realize you. cannnot. fix. this. I pray that something, somehow reveals a way forward here.

just say that he is a soul on a journey

I like this thought. It helps me. We are all "souls on our own journeys." What journeys those are and can be, filled with joy and pain.

I cannot know what my own son has endured, and how he thinks about the choices he has made and still makes today. It is his own journey to walk.

Letting people go is so profoundly hard, and yet, when we do, and are able to do it for a bit at a time, it brings us tremendous peace and relief. It is worth fighting for, this learning to let go.

Warm hugs to all tonight.

 

[Copabanana]

He was a very difficult child and I received a ton of unsolicited and unwelcome advice.

This will happen here too sometimes, on CD.

It always hurts me when it happens. But now, I am getting more angry than hurt. I recognize that anger is not the correct response, either.

What I am trying to tell myself, now, is that there is the desire to help on their part, the belief that if we listen to them, we will learn and suffer less. The sense they can give that they know better, or best, is not what is in their hearts but rather, the desire to take away hurt.

 

[Ironbutterfly]

Karisma, thanks for the update.

I have learned that the homeless population networks and they help each other, they learn from each other where safe places are to stay, places to eat, places to get warm or places to cool off. It is a harsh life being homeless but for many, my son included, that is the choice they have made and somehow they manage.

I found with my son that I was better off not knowing everything. He has shared some things with me in the past that I could have gone the rest of my life now knowing. Also, they are adults now and even with mental illness it is not our place to know everything that goes on in their life.

Karisma, what Tanya said is so true. My son has been homeless, drifter, couch surfer for 16 years (he is 36 now). It's amazing how they do network, know where to go to get food, clothes, the churches who give gift cards. It has been long road for him but the only way I survived was to accept that this is how his life was going to be- he preaches on the street to homeless folks, his love his Bible, loves the Lord.

He is now in another state down south and the Lord presented a minister in his path who helped him to get a clean room and is now his payee. He helps other folks like my son. He sounds so much better than he has in years. Maybe this time, life will settle down for him for a while. I have some hope but I also know that he could decide to change these at any given time. His choice, his circus, not my monkey. I just listen, don't get too involved in the drama that comes up and go on with my life.

Hopefully he can get SSI and maybe the prosecutor/Judge will allow him to get Inpatient or outpatient treatment vs. going to jail. Yes, staying out of jail, not breaking probation is going to be hard, but if he can go to a facility to get treatment, perhaps he can get a second chance.

Keep us posted on his court hearing.

 

[karisma]

I've been reading some threads that discuss the more serious psychotic disorders and how those Difficult Child's may be dealt with slightly differently. For several years now he has been involved in writing algorithms, equations, formulas, all in a code no one else can read without a cipher, in the field of quantum mechanics that he believes will save the world. He believes he is chosen for this somehow and that he is in danger because the energy companies want this information suppressed. He thinks he can hear everyone talking about him from great distances. He is truly psychotic and tormented. He can be very mean but is mostly just sad, scared, and sweet. Regardless, he does not possess the capability of knowing reality from delusion. I am going to attempt to convey this to the judge and ask her to do something. He is so smart and articulate that he hides his illness well from those who could help. But he is truly psychotic.

 

[Ironbutterfly]

Karisma- he almost sounds paranoid schizophrenic. Have you seen the movie a "Beautiful Mind" with Russell Crowe? True story about John Nash, He was a Math wiz at Princeton and MIT. He finally realized something was wrong when he never saw a character in his mind never age. I know there are medications folks can take but often makes then lethargic. I read where John received insulin shock therapy to reset his illness. But he was suppose to take his medications too- and didn't so he relapsed. Never knew Insulin shock therapy was a method of treatment. Interesting. It was found out though that this was a dangerous form of treatment and they moved more toward ECT, which has been deemed safer.

 

[New Leaf]

Hi Karisma, welcome to the forum, I am so sorry for your need to be here. The kind folks here have helped me so much on my journey with my two. We love our children, I don't think anyone who has not gone through this suffering of their illnesses or choices can relate to the devastating loss and emotional roller coaster. It is a different kind of grieving, because they are still here on this earth.
My eldest is homeless, she seems content with her situation. She is on meth, and not in her right mind. Growing up, she had issues with school, but did not present with anything at the time indicating mental illness. I wonder now, what happened? It seems that she went through a series of choices with " bad boys" and went downhill from there. A lifestyle of drinking and partying ensued, with periods of seemingly mainstream living, jobs, a bad marriage, to meth use and homelessness. It has been a rough ride for the family. I love her with all of my heart, but realize that this is her journey and she will make her own choices, regardless of how it affects her, and us. We tried off and on for years to help by having her home with us, but that always came with a feeling of entitlement. We were stolen from and subjected to her lifestyle. I would come home to her "friends", it was an unsafe situation for our home. Our live was completely taken for granted and advantage of. It was a heartwrenching lesson.

I cannot know what my own son has endured, and how he thinks about the choices he has made and still makes today. It is his own journey to walk.

Letting people go is so profoundly hard, and yet, when we do, and are able to do it for a bit at a time, it brings us tremendous peace and relief. It is worth fighting for, this learning to let go.

This is so true. We are each of us here on this earth for such a short time. It is hard as a mother to let go, we are so focused on loving, caring for and raising our children. It can become our very identity. I think most of us have gone through stages of giving up our lives to try desperately to help, only to wind up in a pit of despair because nothing seems to work. That is because in the long run, there are choices our d cs make and they will live the way they choose.
It is difficult for parents too, with d cs who have a diagnosed mental illness, what is the line drawn there?
We are each on our own journeys dealing with this. I am glad you found this soft place to land and pour your heart out to folks who understand.
Keep posting, it is a comfort and also a help to others on the path.
You have value and worth beyond measure. Please take time to be kind and gentle with yourself, find something to help you lift up. Life is short, and you have your own meaning and purpose.
(((Hugs)))
Leaf

 

[Ironbutterfly]

Just did some reading on treatment for Schizophrenia and looks like Neurofeedback has helped to reset the brain but still not a cure for many. Perhaps you can look into this for possible treatment.

 

[BusynMember]

The movie "a Beautiful Mind" was a great peak into the fantasy life of a schizophrenic, but it wasn't true to life, as most movies are not. The real John Nash was homeless and wandered through Europe for decades and the son we see in the movie also has schizophrenia. There is a YouTube video of the real John Nash and his son, who is still not quite right. You can search for this video with Nash and his son on your search engine, but put YouTube in first.

The real John Nash and his wife were apart for a good deal of his life. And just FYI he had an out of wedlock son too and that son does not have schizophrenia.

 

[Ironbutterfly]

The movie "a Beautiful Mind" was a great peak into the fantasy life of a schizophrenic, but it wasn't true to life, as most movies are not. The real John Nash was homeless and wandered through Europe for decades and the son we see in the movie also has schizophrenia. There is a YouTube video of the real John Nash and his son, who is still not quite right. You can search for this video with Nash and his son on your search engine, but put YouTube in first.

The real John Nash and his wife were apart for a good deal of his life. And just FYI he had an out of wedlock son too and that son does not have schizophrenia.

Yes, I know the movie had non-factual parts of his life, but they wanted it to touch on the hallucinations and how real they are in their minds. They altered the movie because they were afraid to say at that time that schizophrenia could be healed without medicine. They also wanted to center on the fact, that his wife was so instrumental in his healing of his schizophrenia. She was his wife for 60 years, albeit, they lived apart for a while, and he had a child out of wedlock. They died together a few years ago in car crash, both in their 80's. Together to the very end.

 

[BusynMember]

Oh, I agree.

My understanding of Nash is that some schizophrenics just go into remission in later years. Like borderlines can get better in middle age and nobody knows why and not all do.

I never read Nash was cured,but I believe he was in remission.

His wife was a Saint.

I feel sorry for his son who is still so sick. The one in the video I saw.

Think of what else John Nash may have accomplished without his illness in the way. The man was beyond a genius.

 

[Ironbutterfly]

Let me rephrase, he wasn't cured, but like you said, went into remission. A brilliant man and I know he would of been able to do more had he not had this debilitating illness. Yes, sad for his son.

 

[karisma]

Thank you so much for your replies. I did see that movie and it does remind me of him. I asked him straight for the first time the other night if he hears voices. He said at first "you don't want to know" so I said "yes I really do". Then he told me no. But who knows? He also constantly says hes a rape victim and when I finally asked who did it, he says he was raped by lasers and electomagnetic waves. He says he wants surgery to remove his male parts. I mentioned ECT the other night because he says he needs some kind of waves to reset himself. I think it would help him. I just know he is quite out of touch with reality but knows not to act like that in front of authorities. He also has come to feel he is a female and wants to be called by the name I was going to name him if he were a girl. He wears a bra and I'm scared he will get beat up. He goes into b protective custody in jail. Its so sad. Thank you for providing a place to vent and feel like I am understood.

 

[Copabanana]

They altered the movie because they were afraid to say at that time that schizophrenia could be healed without medicine.

There is a Scandinavian country, Finland, I think, that claims to have close to a zero rate of schizophrenia. That is because to have this diagnosis, as I recall, requires 6 months of psychosis and nobody stays psychotic long enough to meet the criteria.

I heard this on a radio talk by a psychiatrist named Peter Bremmer, I think that is his name. I later bought his book, Depression, Anxiety and Shame, I think is the title but read only a chapter.

The point is this: In that Scandinavian country when somebody manifests psychosis there is an intensive social response. Not drugs. Teams of therapists are mobilized to work with the individual at home, in their community, with their family. Everybody is treated and full-blown schizophrenia does not result.

I have tried to locate the country and the literature but cannot so far locate much more information except I believe I did confirm that it was Finland.

The moral of the story is that if resources are thrown at a problem, or most of them, there can be a positive result. It is a question of priorities. Sadly, in this country we seem to blame the victim.

 

[BusynMember]

The idea that a country that had no schizophrenia fascinated me so much that I did intensive searches on this...and only was disappointed. I have no doubt some doctor said so,but if it were true the information would be everywhere and certainly the methods would also be used everywhere. This would be especially true amongst the wealthy who can go anywhere and afford anything to stop schizophrenia. There is no such country. There are charts on schizophrenia rates and all countries are mentioned.

Also, many people are psychotic all the time or for years, such as John Nash. Also, due to my own mental health issues, I am friendly with a lot of people who are mentally ill or have mentally ill loved ones. Many have schizophrenic members who have been sick for a very long time. So I don't know who this guy is who wrote the six month thing, but I know from real people's experiences that psychosis can go on and on.

Many parents, some extremely well.off, would go anywhere and pay anything to stop a beloved family member from suffering this if only such a place existed, no?

In the age of information if schizophrenia were being wiped out anywhere, more than just this one doctor would know. The world would know.

I will keep looking as I am highly interested in schizophrenia and have studied up on it a lot and like to stay informed. Thanks for this info. I will continue to explore.

I don't think anyone with a half a brain would blame a psychotic person for being ill unless it were due to drug use, like meth. One who'd blame somebody for schizophrenia simply has no heart. None at all. It is heinous to blame the victim for schizophrenia. It is like blaming somebody for cancer.

 

[BusynMember]

Ok. I found something and it makes the U.S. look terrible. Of course, Norway is a very small country so it's more doable, but in Norway, one of the countries I wish I'd been born in, they can't stop schizophrenia, but there are no homeless mentally ill . It is forbidden. Even more sensibly, the very mentally ill can be treated against their will. The goal is to offer enough help to keep even their sickest in the home. And guess who is mandating this humanity? Um, the Norwegian government. So much for big government being bad, but I never thought big government was bad anyway. Sorry to throw in a bit of my politics. Our government allows the private sector to take care of the mentally ill, and it's a disaster.

Kudos to Norway. Sorry, but thumbs down to us. Although this is probably expensive so is continuing to jail and hold our sickest mentally ill homeless. And it is oddly insanity (no pun intended) to give psychotic people rights over their own treatment. Many are as out of it as those with Alzheimer's. We are so lacking in our care of the mentally ill.

Cop a, this may be what you saw as this country will intervene early and do much for its citizens.

Shame on us for our lack of compassion.

Jmo

 

[Copabanana]

Ok. I found something and it makes the U.S. look terrible.....
Cop a, this may be what you saw as this country will intervene early and do much for its citizens.

Shame on us for our lack of compassion.

Jmo

I just googled and found this: a site called mindfreedom.org which seems to have as its mission, a crusade for better treatment other than heavy drugs.

These citations refer to Finland and the intervention seems to be called Open Dialog. I will see if I can find more.

Film About Open Dialogue by Daniel Mackler
Filmmaker Daniel Mackler visited the innovative Open Dialogue model in Finland, and made a film available via DVD. Here's his brief description of Open Dialogue and the film, and how to obtain it.

A Visit to the Finnish Open Dialogue Model
Filmmaker Daniel Mackler visited Finland to look at the Open Dialogue process himself. Here's a brief article about his visit.

Study on Five-Year Outcomes from Open Dialogue Approach in Finland for "Schizophrenia."
Thisis a pdf study showing good results from the famous "Open Dialogue" mental health system in rural Finalnd, in which help for people diagnosed with schizophrenia and other "psychoses," received help that tended to minimize psychiatric drugs. Journalist Robert Whitaker visited the Open Dialogue community and describes the experience in his book, "Anatomy of an Edidemic." The title of this study is, "Five-year experience of first-episode nonaffective psychosis in open-dialogue approach: Treatment principles, follow-up outcomes, and two case studies." Numbers about prescriptions of neuroleptics (also known as antipsychotics) can be found on page 222. The authors are Jaako Seikkula of University of Jyvaskyla, and others, published in Psychotherapy Research, March 2006; 16(2): 214 228.

Two Year Outcomes: Finnish Open Dialogue Alternative to Traditional Psychiatry
This is a study published in 2000 about two-year outcomes from the "Open Dialogue" alternative in Finland. From "Spiritual Recoveries": Jaakko Seikkula, Ph.D. is a professor at the Institute of Social Medicine at the University of Tromso in Norway and senior assistant at the Department of Psychology in the University of Jyvskyl in Finland. Between 1981-1998, he worked as a clinical psychologist at the Keropudas hospital in Finland where he and colleagues developed a highly successful approach for working with psychosis known as Open Dialogue Treatment (OPT). The approach de-emphasizes the use of drugs and focuses instead on developing a social network of family and helpers and involving the patient in all treatment decisions. Ongoing research shows that over 80% of those treated with the approach return to work and over 75% show no residual signs of psychosis. Official government statistics comparing 22 health districts in Finland found that Dr. Seikulla's district was the only one not to have any new chronic hospital patients in a two year period and led the National Research and Development Center for Welfare and Health to award a prize for "over ten years ongoing development of psychiatric care." You may download an Residential Treatment Facility (RTF) article on Open Dialogue here.

Anatomy of an Epidemic by Robert Whitaker
Journalist Robert Whitaker describes the Finnish "Open Dialogue" process in his book Anatomy of an Epidemic. He visits the program, and gives his impression of why this program is helping people diagnosed 'schizophrenic' and other 'psychoses,' while minimizing prescriptions of psychiatric medications.

 

[Copabanana]

This I lifted from a site called madinamerica. I think it was .com

In two, five-year, follow-up studies of Open Dialogue (Seikkula et al.,, 2006), 80% of those who had acute psychosis for the first time in their lives reportedly experienced functional recovery. That is, after five years, they were working, studying, or looking for a job and not on government disability. Roughly 80% were also asymptomatic and not taking medication, though over a third had been exposed to antipsychotic drugs during their treatments. In an earlier study, in 2002, the Finnish team looked at what happened with the subgroup of these people who were diagnosed with schizophrenia (Seikkula et al., 2003). While this group had somewhat more medication than those with the milder diagnosis of psychosis, 70% of them returned to full employment after two years.

The strong employment outcomes, which might seem improbable to us outside Finland, make sense if you know the local context. Based on their ecological orientation, the hospital team has built a close, collaborative, mutually trusting relationship with the staff at their rural county’s employment office. When a person starts recovering from a severe crisis, they are encouraged to return to work and their other normal routines and can rely on a web of support, if they so choose, in resuming or finding a job. For such contextual reasons, it is hard to know whether similar outcomes can be replicated outside of this small province of Western Lapland with people suffering similar, terrifying, symptoms elsewhere, say, in larger, socially isolating, urban environments. But it is important to find out. As stated, more research.

 

[Copabanana]

What this means to me, SWOT is if there was a true commitment to treatment of mental illness, let alone eradicating chronic schizophrenia through intervention, there would be all kinds of programs, assistance, all over the place. People would be trying this, trying that. But there is not that commitment as a society, thus the dearth of resources.

Instead what there is is the commitment to sell drugs (which most of our kids will not even consider.) I am not against drugs. But it would be nice to have the community support, let alone research.

 

[Ironbutterfly]

Very interesting articles. Basically professionals in teams pull together and come to the persons house and do intensive therapy for a period of time. US is a lot bigger country and we have the issue of illegal drugs coming into the country/demand. How awesome if our country could apply this same therapy treatment.

 

[BusynMember]

you're right, Cop a. This is amazing. I think Norway is similar. I will have a lot to read latter on.

Our country is money oriented. Big pharmaceutical gives big bucks to our politicians. Many special interests do so the good of the people comes secondary to the desires of the special interests.

I have no argument to what you have concluded. I agree. It gets me very upset on so many levels.